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