Not Coeliac? What about Gluten-Sensitive?

After dealing with many...many Mum's about to embark on the gluten free world I thought it timely to try to help validate the huge lifestyle change they are about to take with their children. As a Nurse and a Mother myself, I've learnt there is valuable truth to Mother's instinct, and time and again its hit the nail on the head. For many...trying a gluten free diet is the  last ditch attempt to uncover that nagging feeling that their child's health is "not quite right".

In his book 'Full of It.. The Shocking truth about Gluten' Dr Rodney Ford MD, MBBS, FRACP, makes some very startling yet medically sound connections between gluten and the epidemic of health problems associated with the new generation. Perhaps we should call them the "Intolerant" Generation as it seems 1 in 10 of them now have a food allergy, sensitivity or intolerance. The following is some excerpts from his book.

**Please note that Dr Ford is NOT talking about Coeliac Disease**
Here are some figures to give you some idea about the extent of the poor health that is experienced in our communities:
1 in 4 have asthma or hay fever of eczema.
1 in 10 children have learning difficulties
1 in 10 children are labelled dyslexic or dypraxic
1 in 10 have constipation and/or diarrhoea.
1 in 10 have abdominal pain or irritable bowel
1 in 15 children have been diagnosed as ADHD
1 in 200 are diagnosed with Autism.
Many children often have several of these conditions.

Dr Ford goes onto state that...

Dr Kenneth Fine (Gastroenterologist USA) has found high levels of gluten IgG-gliadin antibodies in the blood of 11% of the general American public. 1 in 10 people have high gluten antibodies (Without having Coeliac Disease) He has also looked for similar antibodies to gluten in the faeces. His research has revealed that theses antibodies are detected in the stool in as many as 35% of people who otherwise appeared to be normal people (no symptoms) He goes onto say that if high risk patient populations are tested (in other words, people with chronic symptoms) then the percentage of those with high gluten antibodies will exceed 50%

The term "gluten-sensitive" applies to any reaction that is caused by gluten. This includes the many symptoms experienced throughout the gastro-intestinal tract. But it also applies to the host of the other non-gastroenterological symptoms. These include brain disorder, skin problems, muscle and joint problems. Gluten-sensitivity occurs ten times more frequently than Coeliac Disease.

If you have any chronic health problems that just won't go away, then you might be gluten-sensitive. There is a three-step process to find out if you are affected.
1. Check out your symptoms
2. Get your blood tested at the GP
3. Interpret your results.
Because there is no single recognisable illness caused by gluten, this entity has been hard to define. This is why these gluten-sensitive problems have been overlooked for so long. However with the blood tests now available, ti has become much easier to diagnose.

Do you or your family have any of these problems?
*tired and exhausted
*uncomfortable tummy
*bloating and gas troubles
*gastric reflux or heartburn
*diarrhoea or constipation

*unhappy with your weight
*not growing well
*eating problems
*lack energy, weakness
*run-down

*runny nose and sinus problems
*chronic iron deficiency
*osteoporosis or growing pains
*dermatitis, eczema, itchy or bad skin
*infertility

*headaches or migraine
*feel depressed or moody or grumpy
*find it hard to think clearly
*poor sleep

*hyperactive or cranky
*Attention Deficit Hyperactivity Disorder (ADHD)
*autism
*mental health problems

Sound familiar? These symptoms are so broad and wide reaching that it is also essential that other clinical diagnosis (ie Diseases) should be conclusively ruled OUT, before a diagnosis of Gluten-sensitivity is accepted. Coeliac Australia also conclude that a small bowel biopsy is the ONLY way of definitively diagnosing Coeliac Disease. Do not start upon a gluten free diet before having your blood test!! your test result will, of course not give an accurate reading!

So there you go, might not be "in your head" afterall!

Depression a real part of Chronic Disease....

As it's Movember month it seems fitting to raise the dark subject of depression, and I can honestly say over the last 12 years having Coeliac Disease it has, at times ,caused me great stress and unhappiness.

I have just read Melinda's Christmas Blog http://blog.melindasgfg.com/ and in it she has a list of ways to make catering for the silly Christmas season easier for the Caterer and the guests, but it was this quote that struck me....

"It’s important that guests with dietary needs don’t feel that they are a nuisance
and can enjoy themselves"

How often have we all been the "dreaded high maintenance" guest with all those "fussy" food lists of can't haves. I've sat eating carrot sticks all night at a party because my previous partner thought it rude to give our Hosts a list of foods I couldn't have! Have you fallen victim to someone else's absurd attitude toward your disease? How did that make you feel? I felt as though I was being "fussy" that I wanted the centre of attention and the party shouldn't be about me! Surely I could just have alittle of what was served, without making a scene. Sound familiar? I hope not.

Over the years (and a new very supportive Husband) I have developed a much tougher hide and of course Coeliac awareness is much greater, but there are those of us that still find the sometimes social isolation difficult. Why do I say social isolation? In our Australian culture sharing a meal with family and friends is possibly the second most social activity next to sharing an ale. Family perhaps will be more understanding having had a closer experience of your pre diagnosis health problems. Friends on the other hand are a different kettle of fish. When is it the right time to tell them you have CD? When they invite you over for dinner or a BBQ for the first time? Over lunch in the Staff Room? When an office party is being planned and someone is organising a 3 course set menu at the local Italian Restaurant (oh boy).

Dissions have to be made. Do you blurt out your entire medical history? (here's a hint don't dwell on the bowel issues) Do you give them a short course on Coeliac Disease? Or do you simply opt out of social occasions where food will be served ? Coeliac Canada recently surveyed their members and a staggering 81% said they didn't eat out at Restaurants! Social isolation can lead to depression, but there's something else you should know...

"Although the exact reasons that people with Coeliac disease are at increased risk of depression are not known, several factors may account for least part of the explanation" Coeliac Disease for Dummies, Part II How Coeliac Disease Can Make You Feel.

 Yep...how lucky are we?

Forewarned is forearmed and Knowledge is self empowering!!! The more you understand about the physical and mental affects of Coeliac Disease the more aware you can be if you see these affects taking place in yourself or others.

Here are some of the factors that may contribute to depression in someone with Coeliac Disease...

*The inflammation in the body that results from Coeliac Disease may, in itself, affect one's mood and thinking (having a bloated sore stomach sure gets me emotional!)

*CD causes decreased absorption of certain nutrients. One theory holds that this may lead to decreased levels of the brain's chemical messengers (neurotransmitters) and that this chemical imbalance is a factor in causing depression.

*After diagnosis and on your new 100% GF diet, you may find this management is "overly restrictive" and interfering with your social life.

*Many of us have been unwell for years before diagnosis, feeling chronically ill can understandably take a heavy emotional toll

So...although your family and friends may offer great support, you should let your GP know how you are feeling! Depression is nothing to be ashamed about!

Would you take Financial advise from a checkout operator?...

No? Why not?...did I hear someone say Qualifications? However who is to say that the Checkout Operator might have a degree in Accounting or a Stockbrokers License! Therefore what we should be asking is....did you ASK what qualifications they had to give you that advise? or did you just ASSUME that becasue they were giving you advise, they knew what they were talking about.

As a Health Care Professional myself (Nurse) I have to abide by what we call a Scope of Pactise, I have to confine my shared knowledge to that which comes under the heading of my Licensed tital. Scope of parctice is defined as....

Scope of practice

From Wikipedia, the free encyclopedia 

"Scope of Practice is a terminology used by national and state/provincial licensing boards for various professions that defines the procedures, actions, and processes that are permitted for the licensed individual. The scope of practice is limited to that which the law allows for specific education and experience, and specific demonstrated competency. Each jurisdiction has laws, licensing bodies, and regulations that describe requirements for education and training, and define scope of practice.
In most jurisdictions, health care professions with defined scope of practice laws and regulations include dietitians, respiratory therapists, nursing, midwifery, emergency medical technicians (EMT), pharmacists, social workers, physicians and surgeons, clinical officers and physician assistants, dentists and dental hygienists, chiropractors, occupational therapists, osteopaths, physical therapists, speech and language pathologists, audiologists, radiographers, podiatry , Biomedical Scientists and nuclear medicine specialists."


So....next time you're on the recieving end ask yourself...."What Qualifications does this person have to give me this advise?"

Gluten Intolerant...isn't good enough!!!

Many of my Customers start the conversation with..."My Naturopath/Acupuncturist/Chiropractor/Kinesiologist etc...says I'm gluten intolerant". My standard reply is "So, have you been tested for Coeliac Disease?"

The reply? Always...always, is no.

Only a Medical Doctor can diagnose Coeliac Disease, and I've ranted and raved about why its very important to be diagnosed properly yet so many are accepting being told they are gluten intolerant without being diagnosed! Anyone with CD will tell you that given half the chance we would be on a "normal" diet, therefore its difficult to understand why you would change your entire lifestyle without a definitive Yes or No answer. Why be Gluten Free if you dont have Coeliac Disease. Oh the deafening roar of ..."Because I feel better"! Excellent, but it ain't over until we find out WHY!!!

Many...many other serious conditions have the same symptoms of Coeliac Disease and THATS why you must take the next step to diagnosis. Its quite possible that you have one or none of the following conditions......

Crohn's Disease
Common symptoms of Crohn's disease include abdominal pain, diarrhea, and weight loss. Less common symptoms include poor appetite, fever, night sweats, rectal pain, and occasionally rectal bleeding. The symptoms of Crohn's disease are dependent on the location, the extent, and the severity of the inflammation.

Ulcerative Colitis
Common symptoms of ulcerative colitis include rectal bleeding and diarrhea, but there is a wide range of symptoms among patients with this disease. Variability of symptoms reflects differences in the extent of disease (the amount of the colon and rectum that are inflamed) and the intensity of inflammation. Generally, patients with inflammation confined to the rectum and a short segment of the colon adjacent to the rectum have milder symptoms and a better prognosis than patients with more widespread inflammation of the colon.

IBS
People with IBS have continuous or recurrent abdominal pain or discomfort that is relieved by a bowel movement (passing stool), or occurs along with a change in the frequency appearance or consistency of stool. Other symptoms may include:

• altered stool frequency (more than 3 bowel movements per day or less than 3 per week);
• altered stool consistency (lumpy, hard, loose or watery);
• altered stool passage (straining, urgency, feeling of incomplete evacuation);
• passage of mucus; or
• bloating or a feeling of abdominal distension.

IBS is diagnosed only if there are no identifiable disorders to account for the above symptoms, and if the person has had symptoms for at least 12 weeks in the past year. Some people find that their symptoms are triggered by certain foods or by eating too quickly or too much.

Small Intestinal bacterial overgrowth (SIBO)
The symptoms of SIBO include:

• excess gas,
• abdominal bloating and distension,
• diarrhea, and
• abdominal pain.

A small number of patients with SIBO have chronic constipation rather than diarrhea. When the overgrowth is severe and prolonged, the bacteria may interfere with the digestion and/or absorption of food and deficiencies of vitamins and minerals may develop. Weight loss also may occur. Patients with SIBO sometimes also report symptoms that are unrelated to the gastrointestinal tract, symptoms such as body aches or fatigue. The symptoms of SIBO tend to be chronic. A typical patient with SIBO can experience symptoms that fluctuate in intensity over months, years, or even decades before the diagnosis is made.

Gastroparesis
The primary symptoms of gastroparesis are nausea and vomiting. Other symptoms of gastroparesis include abdominal pain, bloating, early satiety (feeling full quickly when eating), and in severe cases, weight loss due to a reduced intake of food because of the symptoms. Reduced intake of food and restriction of the types of food that are eaten can lead to nutritional deficiencies.

Ok ....see a pattern here Peeps?? Although (unproven) with many of these conditions Patients claim to feel improvement with less gluten and wheat in their diets, NONE....NONE of them require a strict gluten free diet for life. There of course many many more conditions and diseases I could list here....and that's why I say "Gluten Intolerant"....is not a good enough answer!

We are now ONLINE!!

The shop is now online!!

http://www.totallyglutenfree.com.au/

Feel free to have a look!

Do I Need to Have a Small Intestin Biopsy to Diagnose Coeliac Disease?

...Yes, it is. Next question....

Nah, we wouldn't be so dismissive as to not answer this perfectly reasonable question more fully. Indeed, this question is often raised: not only by lay people, but by health care professionals, too. Like much else in the world of medicine, there are arguments for and against requiring a small intestine biopsy in order to diagnose Coeliac Disease.

We'll start with the argument against requiring a small intestine biopsy to make the diagnosis. People in the camp argue that if someone has symptoms of CD, and has antibodies that are typically present if you have CD, then the probability of CD is high enough that there's no reason to burden the person with an endoscopy (and small intestine biopsy). Instead, the diagnosis can be made on these grounds alone, and treatment with a gluten free diet can begin. In addition, even if the diagnosis is wrong, the person wouldn't come to harm by unnecessarily following a gluten free diet, and if the diet wasn't helping because, in fact, the person didn't have CD, they'd seek medical attention, and the correct diagnosis would ultimately surface anyhow. Fair enough.

Now take a look at the other side of the argument: Those who argue that a small intestine biopsy should always be done prior to diagnosing CD say that symptoms of CD can be seen with many other ailment, too. Further, they point out that the antibodies found in a person with CD can also be seen with a variety of other, unrelated health problems. They may also add, give the great importance of knowing whether on has Coeliac Disease (in terms of the risk of other family members having it, the need to adhere lifelong to a special - and costly - diet, the potential health complications arising from CD and so on), that it doesn't make sense to risk uncertainty regarding diagnosis when a simple, safe, fast, and very accurate endoscopy and small intestine biopsy can almost always provide definitive evidence on way or the other.

These are pretty darn good argument on either side. But we don't think it's a toss-up. In our opinion, the implications of having Coeliac Disease are so great that the diagnosis should only be made if a small intestine biopsy has been performed and found to show appropriate abnormalities.

Case History: Theresa was a 35 year old woman who was referred to Ian because her family doctor thought she likely had Coeliac Disease. This was a perfectly reasonable supposition because Theresa had compatible symptoms (including bloating, cramping, weight loss, and diarrhea) and a positive tissue transglutaminase antibody (this antibody is almost always found if someone has Coeliac Disease). Ian advised Theresa that he thought her family doctor was correct, but still recommended that an endoscopy and small intestine biopsy be peformed to be sure. With some reluctance, Theresa agreed to the procedure. As it turned out, Theresa's small intestine biopsy was normal and further tests revealed that all her symptoms and her positive antibody were actually related to previously undetected liver disease. If Theresa hadn't been biopsied, a wrong diagnosis would have been made, unhelpful therapy (a gluten free diet) administered, her correct diagnosis delayed, and proper therapy (for her liver disease) given only belatedly.

Taken From: Coeliac Disease for Dummies, Chapter 17: Ten Frequently Asked Questions. Written by Dr Ian Blumer MD & Dr Shelia Crowe MD

Whats in a name: The Different Types of Coeliac Disease

Although most people - including many health care professionals - think of Coeliac disease as being one condition, there are, in fact, several different forms. We will look at the various forms of CD, what they have in common, and how they differ. Most importantly, we discuss why this is important for you to know....

In its classical - and best known - form, CD is associated with abdominal cramping, diarrhea, and malnutrition. And as you may expect, if there is a classical form, there is bound to be one or more non-classical forms. Non-classical forms of CD are the atypical form, the silent form, and the latent form. It is now know that the majority of people with CD do not have the classical variety: rather, they have one of these other types. The table below illustrates the key features of the different forms of CD.

                    Classical                 Atypical                Silent               Latent

Typical
age of
Onset           Childhood               Adulthood             Adulthood       Adulthood

Symptoms    Primarily                Primarily NON-      None               None
                   Gastrointestinal     Gastrointestinal

Complica-    Usually Absent         Often Present        None               None
tions

Coeliac
Disease
Antibodies  Present                   Present                  Present           Present

Small
Intestine
Biopsy         Abnormal              Abnormal               Abnormal         Normal

Treat-
ment           GF Diet                  GF Diet                  GF Diet           Uncertain

              Treatment of             Treatment of
              Complications           Complications

Extract taken from Coeliac Disease for Dummies Part I: Dealing with the Diagnosis of Coeliac Disease

Comparing Coeliac Disease, Food Allergy & Food Intolerance

    In order to explain why they are on a special diet, many people with Coeliac Disease understandably (and perfectly reasonably) try to make things easier for their friends, co workers, and restaurant staff by just saying they are "allergic to wheat" rather than describing in detail what their condition is all about. Although saying you are allergic to wheat is perfectly fine, the statement is not perfectly accurate.

    Coeliac disease is an autoimmune disease, meaning that your immune system has turned against - and is attacking - your own, health tissues. Autoimmune diseases, including CD, typically cause chronic problems, not sudden, life-threatening crises. Food allergies are caused by a different problem with the immune system and can indeed lead to immediate catastrophic situations. A food intolerance (such as lactose intolerance) on the other hand is not related to the immune system and although it leads at times to unpleasant symptoms, is not life-threatening in nature. We illustrate  the key differences between these three conditions..
                            Coeliac Disease        Food Allergy            Food Intolerance
Time to Onset        Days, months to       Seconds to             Minutes to hours
after consuming     years!                      minutes
the Triggering
Food

Common                Variable but             Shortness of           Abdominal cramps
Symptoms              often abdominal       breath, swelling      diarrhea
                             cramping diarrhea    of the lips and
                                                            tongue, hives
                                                                                                                                

Immune                T Cell mediated         Immediate              None
Problem                 disease                    hypersensitivity
                                                            reaction


Technically speaking, a food allergy is a special type of immune reaction (called an immediate hypersensitivity reaction) that involves immune system cells called basophils and mast cells (these are special types of white blood cells involved with the body's allergic response and certain other conditions). An immediate hypersensitivity reaction results, upon exposure to a certain stimulus, in the immediate release into the bloodstream of a substance called histamine, which causes instantaneous - and sometimes life-threatening - symptoms such as shortness of breath, a swollen tongue, and skin rash (hives). Perhaps you know people who are allergic to peanuts. They have this type of food allergy. people can also be allergic to wheat, which is different from Coeliac Disease because the reactions to wheat are immediate and cause problems with breathing, hives and swelling of the mouth and lips. Unlike in Coeliac Disease, wheat does not cause intestinal damage in people with wheat allergy.

   As you know from your own experiences living with CD (or living with someone who has CD) this is entirely different from what happens if a person with Coeliac Disease consumes a gluten-containing food (such as wheat) in which case, such instantaneous, life-threatening symptoms don't occur. Although, the immune system plays a role in CD, it is of an entirely different nature.

   The one exception to Coeliac Disease and food intolerance being unrelated is if you have newly diagnosed and therefore untreated Coeliac Disease in which case you may have temporary lactose intolerance.

Taken from Coeliac Disease for Dummies Part I: Dealing with the Diagnosis of Coeliac Disease
                                                     

Myth #4 Eat Gluten and You Feel Immediately Ill

If you have Coeliac Disease, you should consume not gluten: it is the consumption of gluten that leads to damage to your gut and the symptoms that then arise. Having said that, it is a Myth that all people with CD immediately develop symptoms after ingesting gluten. here are some important reasons for this:

*Not everyone with CD has symptoms. You may well be one of the many people who were diagnosed wither through screening, or after an unexpected, abnormal test result was found. So if you felt fine when you were consuming gluten before you were diagnosed with CD, it's quite possible that you will continue to feel well when you consume gluten after you were diagnosed(NOTE: This is not a reason to resume ingesting gluten! If you have CD you should consume no gluten at all!)

*Although ingesting gluten triggers your immune system and leads to damage to your intestine, this isn't instantaneous. For most people with CD, it takes days, weeks or even months before the damage becomes severe enough to cause symptoms. This is unlike the immune problem seen if you have a peanut or bee sting allergy, in which case you have an immediate reaction upon exposure to these agents.

After reading the preceding list,you may have come to the conclusion that ingesting gluten will not make you feel immediately unwell. Excellent: we're glad we convinced you. But - well yeah there's a but - SOME people with CD for reasons that are unclear do in fact start to feel unwell with symptoms of bloating, abdominal discomfort, and indigestion developing with hours of ingesting gluten.

.....So is it a myth that if you consume gluten you will feel immediately unwell? For most people yes! its a myth. But for some people it is a reality.

Taken from: Coeliac Disease for Dummies, Chapter 19 Ten Myths, Misperceptions, and Falsehoods about Coeliac Disease

Complimentry Medicine Be Realistic!

As a Licenced Nurse the information I rely on is always based on Medical and scientific facts. Though on the other hand I fully support the use of complimentry medicine as a useful tool to assist in the management of Coeliac Disease. Unfortunatley finding a good practioner is difficult and just like the Medical profession, there are bad ones out there.

Take into account what the Complimentry Medicine was designed to do in the first place.

Sometimes in our need to be what we think is "normal" we will grab at any advise we are given even though it has no bases in fact nor proof. Some would argue that that is called "Faith". I would say this, there is always room for Faith and hope, but when its concerning your health and the management of your Coeliac Disease, travel carefully, listen to what your body is saying and confirm the results with your GP. And theres aways the question of whether your Coeliac disease was definitively confirmed in the first place.

Myth #3 You Can "Outgrow" Coeliac Disease

Doh! yes some people are actually told this!....

You likely recall how much better you felt soon after starting a gluten free diet (differs for each person). And the odds are darn good that as you continued your diet, all your previous symptoms gradually resolved and you remained well thereafter. It could be - human beings being human afterall - that at some point you inadvertently (or maybe even intentionally) resumed consuming gluten. It's likely that in short order your old symptoms came back to haunt you, reminding you that you had not been cured of your Coeliac disease, but rather that you still had it and needed to look after it. But what if you had resumed eating gluten and your symptoms, in fact, did not return? Or perhaps you have a child with CD and after being entirely well for years whilst on a gluten free diet, you are now wondering whether your child need to continue it? Could it be that you or your child have "outgrown" Coeliac Disease?

So then with that in mind, can you in fact, outgrow Coeliac disease?....Alas, although you will outgrow your high chair, your first bike, adolescence (thank goodness) your wedding day tuxedo (sigh) and a million other things, you will not outgrow your Coeliac disease. Similarly, if you have a child with Coeliac disease, your child won't outgrow it either.

If you are middle aged person and were diagnosed in your youth with Coeliac disease it is quite possible that you recall long ago being told by a doctor that you could - or would - out grow your Coeliac disease. At one time this possibility was entertained by some health care providers. Nowadays we know this is incorrect.

So what might happen to you if, feeling completely well, you decide to resume eating gluten containing food? The answer is, you will develop one or more of the following problems:

*Your symptoms will return, possibly becoming severe and exceptionally difficult to settle

*You will develop complications of Coeliac disease (such as iron deficiency anemia or osteoporosis)

*You may expose yourself to an increased risk of several types of Cancer.

The bottom line: As much as we wish to were otherwise, you cannot in fact, outgrow Coeliac disease and it is potentially dangerous to resume eating gluten even if, having don so, you feel perfectly well.

Another Myth!

You Can Have Borderline Coeliac  Disease
I actually hear this one alot, and most people have been told this by their GP! **slaps head in utter frustration** but here I will try to explain why this phrase is completely incorrect!

We never take exception when a person advises us that they or a loved one has "borderline" celiac disease. Oh sure it's a myth and one can no more have borderline celiac disease than one can be borderline pregnant!, but the person with this misperception got it from ssomewhere and and that somewhere is typically a well-meaning but misinformed friend, relative or - more commonly in years gone by - doctor. Like pregnancy, when it comes to celiac disease, you either have it or you don't. And speaking of the myth of borderline celiac disease, it is also a myth that you can "outgrow" it.

If ever you have been told you had borderline celiac disease, most likely this happened because you had some other condition (a bowel infection, for example) or were too-quickly labeled as having celiac disease without benefit of a small intestine biopsy: then, when you got better, you were told that you got better because you only have borderline celiac disease.

Another possibility is that you do in fact have the real deal: that is you  were told you had borderline celiac disease,but you actully do have celiac disease. This is most likely to occur if the type of celiac disease you have is either silent or latent, form of the disease. These types of celiac disease are unassociated with symptoms.

Because celiac disease is so important a condition with so many health implications, if you've been diagnosed with "borderline celiac disease" we encourage you to speak to your physician to find out on what basis this determination was made. If you have a small intestine biopsy, ask your physician what it showed. If you didn't have a biopsy, ask what, if any, antibody studies were done.

If you were told long ago that you had borderline celiac disease, it may (or may not) be worth your while to be retested for celiac disease beginning with having appropriate antibody or genetic testing done. (Often a genetic test is a particularly good way to start since, if you don't have certain genes, you almost certainly cannot have had, or ever get, celiac disease) Be sure to speak to your current Doctor about this.

Reproduced from Celiac Disease for Dummies

Myths, Misperceptions & Faleshoods About Coeliac Disease

I have been lucky enough to have received a copy of "Celiac Disease for Dummies" and excellent plain speaking guide to the newly diagnosed or, like me, managing the disease down the track. I wanted to share some of its wisdom with you so over the next few weeks I will reproduce some of the areas that I most commonly get asked about, especially the Myths, misperceptions and faleshoods. Unfortunately with the availability of the world wide web its extremely easy to find incorrect and sometimes dangerously wrong information. As I have said before, research, read, question the information you are given don't accept what you are told as Gospel truth, especially by non Medical groups or individuals, only a licensed Doctor can give you a diagnosis of any disease! The information I will state here for you is all proven medical information....

Myth #1 YOU MUST AVOID ALL PRODUCTS WITH GLUTEN

Sometimes it seems to us that gluten is about as ubiquitous as the air we all breathe. Gluten, can be found not only in foods, but also in some shampoos, creams and lotions. A commonly held myth is that if you have Coeliac disease or dermatitis herpetiformis (DH) using such gluten-containing products can triger your Coeliac Disease or your DH. In a word (well, two actually) IT CAN'T.

The only way that your Coeliac disease will be triggered is by you ingesting gluten. So long as your shampoo, cream, lotion, and so forth stay on your skin and out of your mouth (as if!), they won't come in contact with your small intestine and thus, will be unable to cause your disease to flare. This is also true of DH which, is a skin disease very closely linked with Coeliac disease. If you have DH it is safe for you to use gluten-containing topical products.

Lipstick may also contain gluten, but so long as your lipstick does as its name says it should - that is, stick to your lips - your insides will remain a stranger to your lipstick's gluten and thus, your use of lipstick won't pose a risk.

For the sake of completeness, we'll add on qualifier here: Albeit very rare it is possible that some speck of gluten-containing lipstick will, indeed, find its way into your insides and lead to problems. So if you're strictly avoiding gluten yet you continue to have gastrointestinal symptoms, make sure your lipstick is gluten free. you'll need to contact the lipstick manufacturer to find this out.

Reproduced from "Celiac Disease for Dummies"

Canadian Celiac Association

I just received my new Member kit from the Canadian Celiac Association and I must say I'm impressed. Amongst the many sheets of information, Celiac Disease for Dummies and Acceptability of Food and Food Ingredients for the Gluten free diet books, is this wonderful no nonsense guide that I will reproduce for you.
10 FIRM WAYS TO MANAGE CELIAC DISEASE SO IT DOESN'T MANAGE YOU!!
1. Find a Doctor you trust, follow his or her medical advice, and try to stop worrying.
2. Accept the fact that you will probably have to do more cooking and baking "from scratch" than you used to. Take on the challenge and concentrate on the art of finessing gluten.
3.Read labels on all processed foods you may decide to try.
 4. Guard against paranoia, which can be an uncomfortable burden. Prudence, not paranoia, is guidance to take to heart.
5. Resolve to stay as gluten-free as possible, then relax. In other words, don't cheat but try to be flexible.
6. Join a support group and go to meetings. Virtually all support groups need more help than they get. Pitch in.
7. Work on anger (with help if necessary): at the Doctors who misdiagnosed you or said you were nuts: at the family members who were also unbelieving: at the current society that sometimes dismisses gluten freedom as a bit of an eccentricity.
8. Have your first-degree child relatives tested. Explain the dangers to your first-degree adult relatives and encourage them to be tested. Recognise that the decision is theirs.
9. Focus on the benefits of the GF diet, not the burdens. It's a very healthy diet.
10. Accept the current reality of a gluten-filled world.

Interesting, that the Canadians focus on the emotional effects of CD, something I think we lack slightly here. The Australian mind set is more focused on the physical aspects rather than the emotional, something we should do more of!

That's what I'm takin bout

...Now I'm cranky.

Quite often (about twice a month) I have a "discussion" with a customer about what is and what isn't Gluten Free. I am a Licensed Nurse of five years...a Coeliac of 12 years, a Professional Member of..Coeliac Australia...Coeliac New Zealand and Coeliac UK...give me a little credit to acknowledge that I might know what I'm talking about.

So I will try to once again make the following absolutely clear.....

Kamut.... is a old relative of modern wheat..Durum wheat to be exact and NO I don't sell it!

Spelt...is also an old variety of wheat and NO I don't sell it!

Sprouted Grain Bread...is made from grains that have "sprouted" and has gluten  ADDED to them and NO I'd sell it.

Corn & Rice ...are gluten FREE. They contain their own proteins, neither of which react with those people caring the Coeliac Gene's if you do react to corn and rice it is not the gluten protein you are reacting too and YES I do sell corn and rice products.

Oats...ARE NOT considered gluten free because of the protein Avenin of which 1 in 5 people with the Coeliac Gene will react to. If you are only wheat intolerant or not a diagnosed Coeliac you may tolerate oats. I will NOT stock them because that one person who does react to them will sue me for claiming they are gluten free and I personally do not consider them safe...why take the risk when there is plenty of other things to eat?

Glucose Syrup (Wheat)...IS GLUTEN FREE...due to the processed nature of this product there is NO DETECTABLE GLUTEN at the end stage of the processed product (you can confirm this with Coeliac Australia and Food Standards Australia and New Zealand) If you are reacting to products containing Glucose Syrup may I suggest you look at the other ingredients in the product such as artificial flavours, colours and preservatives.

Carmel Colour 150(wheat)....is gluten free for exactly the same reasons as above!!

Dextrose (wheat)...is gluten free and again for the same reasons as above!!

Buckwheat...is a plant NOT a variety of wheat..is gluten free and YES I do sell it.

All of the above information is easily Googled and can be confirmed with Coeliac Australia, New Zealand, UK and Food Standards Australia/New Zealand.

Be Kind to the WheatEaters

I feel great, I just did my good deed for the day! I made a small but heartfelt donation of some GF products to a "Flower" group in Toowoomba. They are catering for a bus group and have a couple Gluten Free people coming for lunch.

The heartfelt gesture goes to the dear lady catering. The list of "can't have's" from the two customers was...quiet honestly ridiculous. She didn't get much sleep last night from worry about what she was going to feed these people and came into the shop in abit of a flutter.

Should people with multiple allergies really expect to be totally catered for by "non-professionals"? The list was extensive and even impressed ME!

I am all for promoting and encouraging Coeliac's and people with food allergies to be proactive and further our cause, but really, most people don't live in our world and cant possibly understand unless they have a friend or relative who is intolerant.

Cut them some slack hey? If you are going on a "catered" event, provide the company or organiser with a list of foods you CAN have. Even provide BRAND names, which is extremely helpful. Then ring and make sure everything is going to plan and that the know what they are doing and your meal will be safe. Be encouraging and grateful! People love to know extra effort is recognised and appreciated (you'll make life easier for the next Coeliac to come along)

Yes I'm very vocal when Restaurants/Cafes don't have GF options, but its always in a way to encourage the venue to change and offer at least one option!

Givem a break, they eat wheat, they no not what they do! ;0)

How Sweet it is!!! What is that sweetner?

With the increasing awareness within Coeliac circles, of our risk of developing Type 1 Diabetes I get ask alot of questions about Sugar and Sugar substitutes. I found a fantastic article that may answer alot of your questions.....

Sugar Free or No Added Sugar.... What is the difference? No sugar added means that while no sugar (sucrose) is added to the product, some naturally occurring sugar is present in some of its ingredients (such as raisins or fruits).  These sugars, such as fructose (from fruit), lactose (from dairy products), and maltose (from starch) metabolize into the bloodstream very slowly, if at all, and cause insignificant changes in blood sugar levels.  Regulations allow that any product containing less than 0.5 grams of sugar per serving may be labelled sugar-free; while over 0.5 grams (even the slower metabolizing sugars, as described above) must be labelled no sugar added.  “NSA” means no added sugar. What is Lactitol? Lactitol is a sweetener derived from milk sugar and belongs to the chemical group of polyols.  Often used in combination with aspartame and polydextrose. What is Polydextrose? Polydextrose is a bulking agent derived from dextrose.  When a sweetener is used to substitute for sugar, this is often added to compensate for the bulk lost by the substitution. What is Splenda® and Sucralose? Splenda® and Sucralose is 600 times sweeter than sugar.  They are both a low calorie sweetener processed from sugar, which can be used in place of sugar with no effect on blood glucose levels.  It is made by replacing three hydrogen/oxygen molecules with three chlorine atoms.  It does not promote tooth decay and has no aftertaste. What is Fructose and Pure & Pure Crystalline? Fructose and Pure & Pure Crystalline is a naturally occurring sweetener, which is found in fruits and berries. It is slowly absorbed in the blood and therefore causes a significantly lower rise in blood sugar levels than sucrose (sugar) or fruit juice concentrates. It is sweeter than sugar, so less is needed resulting in calorie reduction.  In turn, this may be used as a diet fruit exchange in your nutritional program. What is Sugar Alcohol? Sugar Alcohol is the technical category for Maltitol and other sweeteners. It may appear on some labels in its place.  In fact, it is neither a sugar nor an alcohol.  Products containing Sugar Alcohol are labelled with advice that “excess consumption may have a laxative effect”.  This varies from person to person and is best controlled by moderation.  At first, try smaller portions and gradually increase as your body adjusts. What is Lycasin® (HSH)? Lycasin (HSH) is one of the brand names of Maltitol.  What is Sucrose? Sucrose is common table sugar – not used in any of our products.  A form of carbohydrates that provides calories and raises blood glucose levels.  Includes white, brown, confectioners and raw sugars.  Honey, corn syrup, molasses and sorghum are also sugars. What is Mannitol? Mannitol is a monosaccharide polyol.  It has approximately 70% of the sweetening power of sugar but is absorbed much slower than sugar. What is Erythritol? Erythritol is a sugar alcohol sweetener that is present in fruits such as pears, melons and grapes. It is low in calories and is 70% as sweet as sugar. It does not raise blood glucose or insulin levels and has a high digestive tolerance. What is Acesulfame K (ACE-K) Acesulfame K (ACE-K) is a sweetener that is 200 times sweeter than sugar.  It is made by transforming acetoacetic acid and combining it with potassium to create a stable crystalline sweetener.  It is not metabolized by the body and therefore does not provide calories or carbohydrates. What is Isomalt? Isomalt is a sugar substitute made from sugar beets, that results in insignificant changes in blood sugar levels. It is 50% as sweet as sugar (sucrose). What is Xylitol? Xylitol is a sweetener that occurs naturally. It can be found, for instance, in berries, fruit, vegetables and mushrooms. Xylitol also occurs in human tissues. Where does Xylitol come from? Corncobs and birch trees are the main sources for commercially produced Xylitol. However, there are no residual corn products in the Xylitol. Xlear, Australia's Xylitol, comes from corn from China. We source our Xylitol from the world's largest supplier of the product so customers can be assured of its quality and taste, compared to other inferior brands. How does Xylitol differ from other sweeteners? Strictly speaking, Xylitol is not actually a sugar, but a sugar alcohol. It differs from other sweeteners such as sorbitol, fructose and glucose because the Xylitol molecule has five, instead of six, carbon atoms. Most bacteria’s are unable to make use of such sugars. This is one reason why Xylitol is so effective in preventing caries. What is the calorie content of Xylitol compared to sugar? Xylitol has 40% fewer calories than "normal" table sugar. What is the carbohydrate content of Xylitol compared to sugar? Xylitol contains 75% less carbohydrates, compared to "normal" table sugar. What is the Xylitol to sugar exchange ratio? The Xylitol to sugar ratio is 1-1. Is Xylitol GMO free? Yes, our Naturally Sweet products are of the highest possible quality and are all GMO free. This may not be the case with other inferior brands. What does Xylitol taste and look like? Xylitol tastes and looks just like sugar. If you were to put a small amount on your tongue by itself, you would notice a very pleasant cooling minty aftertaste as being the only difference from sugar. This pleasant aftertaste is one of the many reasons why food manufacturers overseas love to use Xylitol in their products. Can you use Xylitol to cook? Yes, Xylitol is interchangeable with sugar for most cooking applications. Since yeast cannot metabolize it, Xylitol will not work when baking breads or anything that contains yeast. Furthermore, Xylitol does not crystallize as much as table sugar; therefore it does not do well when making peanut brittle or other hard candy. Although Xylitol is the same sweetness of sugar, we recommend that you try a little less Xylitol to what you would use of sugar and then adjust from there. Some people use a less and some like a bit more sweetness - it is frequently an individual taste.

Why its REALLY important to be correctly diagnosed!!

While the explosion of gluten free food on supermarket shelves and cafe menus highlights an increasing awareness of CD, three is another side to this story. It's increasingly common for people to attribute their gastrointestinal symptoms to wheat and self-diagnose CD, while many TRUE Coeliacs remain undiagnosed.
"Alot of people think they are gluten sensitive when they are not" says Dr Ian Brown, Anatomical Pathologist at Envoi Pathology and they Royal Brisbane & Women's Hospital. "They often have IBS or other reasons for their symptoms, but they stop eating wheat products and probably do feel better becasue of it. But that DOESN'T  mean they have Coeliac Disease which is an autoimmune disorder that affects about 1% of the population."
There is more to diagnosing CD than just feeling better from avoiding wheat products. While there may be obvious symptoms such as feelings of discomfort, diarrhoea, abdominal pain, bloating and (eventually) weight loss, there are also symptoms that require medical expertise to link them to CD.
"There may be neurological symptoms, osteoporosis at a young age, dermatitis, anaemia or iron deficiency", explains Dr Brown. "In fact, more people are now being picked up with ATYPICAL presentations and unusual manifestations than just gastrointestinal symptoms. This is why it is important to get a definitive diagnosis, and that happens through pathology tests."
Dr Brown says the gold standard test is a Small bowel biopsy, while serology (blood) tests are also very accurate.
"In some cases we also need to look for a particular genetic marker" says Dr Brown. "But, most people have the serology and biopsy to confirm if the have coeliac disease, and about 20% of new diagnoses are in people over 60 years of age."
This brings us to the question of whether people ar BORN with CD or simply develop a reaction to gluten at some point down the track. The answer is BOTH, and once you do develop CD its there for life.

"You need to have a genetic predisposition to CD and then an environmental influence to trigger it" explains Dr Brown. "This influence is not clearly defined at present, but it might be a bowel infection which lets gluten into part of the bowel it would not normally get into. This then sets up the immune reaction"

This immune reaction takes place in the Small intestine because gluten contains big proteins that are not broken down in the stomach. It is also rich in particular amino acid with an elector specific charge that binds very tightly to a surface receptor of special cells in the small intestine in people with a genetic predisposition to CD. This sets off an inflammatory reaction as the body reacts to this receptor-bound protein and calls in other cells to help with this process. This battle rages every time gluten is eaten.

Based on this reaction, avoiding gluten is obviously an essential part of controlling CD and a life-long dietary commitment. It therefore makes sense to have the required pathology tests to absolutely rule it in or out before such a commitment is made.


Extract from PathWay the Royal College of Pathologists of Australasia

Educate all those who will Listen!

I had a dear little old lady come into the shop today, "I'd like to start a Gluten Free diet because I'm worried about the fat in my diet"...wow words cannot express.

I spent the good part of ten minutes just explaining what Gluten actually was let alone trying to explain Coeliac Disease. I get alot of this. I eventually turned this lady away with the promise that she would see her GP as she seems to have alot of foods that gave her trouble that where actually Gluten free.

I am still a License Nurse and with that License comes responsibilities that have nothing to do with being a Business Woman. I still adhere to the Code of Conduct and Ethics that I signed up for when I chose this profession. Wow Ethics is Business...that's a new concept.

I once heard a saying "The only reason why evil exists is because good people do nothing". I have made it my business (whether people wanted to know or not) to educate people on CD whenever it happened to come into conversation. I am amazed at the extremes of knowledge ...from nothing (actually completely wrong like our dear old lady) to people who have a very sound even detailed grasp on the Gluten free life. It does appall me at the amount of misdiagnosis but I hope in my small way that I can change the few people that come in contact with me. I'm doing my little bit in my little shop!

Sometimes I think I do more Education than selling products! But that's par for the course, and I do love a good chin wagg. I am about to become a Professional Member of Coeliac New Zealand and hope to get back over there sometime next year. That will notch up Professional Memberships with Coeliac Australia and UK as well. They are a vast cauldron of knowledge!..and every little bit helps

READ...READ....READ.....

...I was diagnosed with CD 12 long years ago, and quite frankly I was ecstatic! There WAS something wrong with me! it wasn't "all in my mind". So with that attitude I stormed headlong into investigating and researching this strange disease I'd never heard of!!! I surfed the net for any information I could find, and thanks to a wonderful Practice Nurse at my GP's I rang Coeliac Queensland (then called The Qld Coeliac Society) paid my joining fee and was introduced to the FANTASTIC Warwick area contact. I never looked back.

I have stayed a member for 12years and in that time SO many things have changed, the products have improved, ingredient ratings have changed (yes CHANGED) what was once considered taboo is now fine due to new processing standards and research in Australia has started. Every quarter there is new information about our funny little disease.

In time I became my Doctor's Coeliac Teacher. As with most GP's his knowledge is broad and its difficult for them to keep up to date with every piece of new information. So I would tell him the latest each visit and he would then add that information to his vast knowledge!.

So when I meet people who don't look thoroughly at information about products, ingredients and research it strikes me as odd. I wanted to know exactly what was wrong with my body and why. Although some of the questions are yet to be answered, I have been strictly GF for 12 years. Why risk it? My Mum has had 2 first stage Bowel Cancers 8 years apart, unique. If I was running in the Bowel Cancer Melbourne Cup I'd be the favourite!! So I am vigilant, strict and endeavour to stay and eat healthy.

Its really not hard! What you put into your body...is what you get out of it. So why then do some tempt fate for a moment of self indulgence? I know alot of people with CD who eat Spelt Bread, why? Would you eat a tiny bit of rat poison? Or take on face value that a product is GF just because you where told it was?

Read...everything you can get your hands on! That's my advise! The more you know the better! Just because the lady at the shop said it was GF doesn't mean it really is..did YOU read the ingredient list? What qualifications does this lady have to assure you that she is right?? All the information you need is available...you just have to look!

What the hell is a FODMAP?!?

As a licensed Nurse and the Owner of this little shop I get asked alot of questions about diet. My first question to my customers/patients is this "Have you seen a Dietitian/Nutritionist?" The answer most frequently is "No but I do see my Naturopath" *Doh! Slaps forehead* not the same thing...at all!!

When you have a muscle problem...you see a Physiotherapist...
When you have a tooth problem...you see a Dentist..
When you have a bad hair day....you see a Hair Dresser
Soooo (now stating the BLATANTLY OBVIOUS!) When you have a diet problem....you see a Dietitian/Nutritionist!!!

All humor aside this NEEDS to be the first stop of EVERY newly diagnosed Coeliac! Then its off to get a free bone density (yes the government gives us them for free as we qualify for the high risk category for osteoporosis...your Dietitian will tell you why!!)

When you have a problem you see a specialist! And thats what they are!! They will explain how to go about "refeeding" your sick and recovering gut, or your on going grumbly tumbly, or why you are still having symptoms!

They know the secrets of FODMAPS, the confusing contradictory "Gluten free even if wheat derived" products that I'm always being asked about. The strange but true reality of Men also being at risk of Osteoporosis! The importance of being strictly gluten free (and NO they can't have EVEN A LITTLE BIT...aimed at that ONE annoying person who just doesn't understand your new gluten free status!!) and why you can't "JUST HAVE A SALAD" (hint you need protein!)

Forewarned is forearmed...KNOWLEDGE is power.

Why the dramatics? ALOT of new and even the long time Glutenless sometimes waver at being confronted with the (rather rude) questions of...."Surely alittle bit won't hurt you", "Well if there's nothing on the menu...you can have the salad". I have learnt rather an impressive list of comebacks to these lovely statements but alas, not print worthy! Empowerment comes with a firm knowledge of what Coeliac Disease really is...what is HAS done to your body and health and what it WILL do and CAN do. Then you too can accumulate your very own repertoire of responses!

Lesson of the Day! DIETITIAN/NUTRITIONIST'S ARE COELIAC'S SUPERHERO'S!!!

Don't let CD take over you life.

Coeliac's have a food Hypersensitivity to gluten, well at least that's what Dr Sue Shepard states in her new book "Food Intolerance Management Plan". Usually we have a few other little allergies and sensitivities hanging along for the ride, most notably Lactose Intolerance or a problem with FODMAPS (other natural foods that cause IBS systems). All of these problems can tend to make life alittle challenging at times, to say the least. Yet life is good without gluten and health can resume as close to "normal" (whatever that is) if we stick to our diet.
I see time and time again people who have let Coeliac Disease completely take over their world, they blame every ache and pain or tummy upset on "I must have eaten something". Coeliac's have sensitive guts, that's indisputable, therefore we are likely to have a tummy upset before anyone else. Yet it doesn't ALWAYS have to be gluten.
If I have one too many coffee's during the day I'll pay for it later! Also onion and citrus foods, but theres no gluten in those! I've heard people claim Ludicrous cases of upset tummy's after consuming foods that are completely gluten free and could not have possibly have caused a Gluten Insult. Maybe you have a sensitivity to more that one ingredient?..maybe you just have a tummy rumble?...come in contact with a bug?
As a Nurse I can tell you that the leading cause of stomach bugs is inadequate hand washing and food preparation. The average person comes in contact with thousands of Bactria on a daily basis, on shopping trolly's, door handles, even on the money we have in our purse. It's not all the big bad Gluten's fault. Don't let CD become who you are ruling every meal every mouthful. Try to look at it as I do...THINGS COELIAC'S DONT HAVE.....

WE DON'T have to shoot up with Insulin 3 to 4 times a day (most of us anyway)
WE DON'T have to take nasty medications with terrible side effects.
WE DON'T have to undergo Chemo or Radiation Therapy to set us on the path of health
WE DON'T have to undergo brutal chest physiotherapy just to breath like people with Cystic fibrosis
WE DON'T have to spend long periods of time in hospital away from Family and Friends

There are many more, but I like to think in the scheme of things....we got off easy!

Glucose Syrup! Yep IT IS GLUTEN FREE!!!

One of my most asked questions "....glucose syrup's not gluten free...is it?" sure is people!! I must get asked this question 2 to 3 times a day! Usually after customers spot the Jelly Belly's on the top shelf! Glucose syrup is a liquid sweetener found in many candies and other desserts that contains wheat starch.

Obviously when the word "wheat" appears, most of us have our Spidey sense's tingling! However the Australian Coeliac Society assure's as that.. "Some ingredients are so highly processed, that they are gluten free even though a

gluten source is indicated. The most commonly used are:

▪ Glucose or glucose syrup from wheat

▪ Caramel colour (150) from wheat

▪ Dextrose from wheat

These ingredients are suitable for a gluten free diet"

And not to forget that under the Australian Food Standards code even if any ingredient is wheat derived (comes from wheat) rye, barley or oats, this it must be declared!
Therefore ingredients where the source of grain is NOT identified are from a non-gluten containg grain and gluten free! are therefore from a non-gluten containing .

So remember!!! There are some exceptions to the rules! and Glucose Syrup is one of them ITS GLUTEN FREE!!

Something for us all to think about...

"I mourn the loss of thousands of precious lives, but I will not rejoice in the death of one, not even an enemy. Returning hate for hate multiplies hate, adding deeper darkness to a night already devoid of stars. Darkness cannot drive out darkness: only light can do that. Hate cannot drive out hate: only love can do that." --Martin Luther King, Jr

Gluten free right in our own back yard!

It's true it's true!! Gluten Free CRUMBED Calamari in our own town. Fibbers on Church was the scene this afternoon of my latest culinary delight. Crumbed Calamari....fresh. How wonderful to find a local high profile eatery catering to food intolerance's. But not only just catering....there where plenty of GF options on the menu for me to choose from...CHOICE! Keep up the good work Fibbers, I'll definitely be back.