Adventures in Gluten (and Sugar) Freedom from a southern blogger chick!

Friday, December 11, 2009

Guest Post: 10 Important Facts about Celiac Disease and a Gluten-Free Diet

I am proud to call Sandra Robins, The Gluten-Free Optimist, (aka @marylandceliac) my friend, even though we've only met through Twitter and our blogs. Sandra is also the D.C. Gluten-Free Examiner. It was she who gave me the tip about GF Food at Harrah's, Atlantic City.

Today, she wrote this post in response to the recent broadcast of the Dr. Oz Show that discussed Celiac Disease with a newly diagnosed celiac. At the end of the show. Dr. Oz made the statement that someone who suspects Celiac disease "should go on the diet for three weeks and see if it's better, then get tested."

Rightfully, a large portion of the Celiac community is upset with this comment, as well as certain opinions shared as facts by the additional guest. For the record, folks: Blue Cheese is gluten free in most instances -- when in doubt, READ THE LABEL or CALL THE COMPANY.

But I digress.

I asked permission to reprint this here to remind anyone who needs information the truth about celiac disease.

I reprint it verbatim. Thanks, Sandra, for all you do.

By The Gluten-Free Optimist:

10 Important Facts about Celiac Disease and a Gluten-Free Diet

1. Do not start a gluten-free diet until you have been tested for celiac disease (celiac panel blood test and endoscopy if necessary). Testing will not be accurate if you are already eating gluten-free. An endoscopy is necessary to confirm a diagnosis of celiac disease and sometimes to help interpret the results of the celiac panel blood test, which is not always accurate.

2. Many people who test negative for celiac disease are gluten sensitive and find that symptoms improve on a gluten-free diet.

3. Celiac disease is an autoimmune disease, not an allergy. It is not part of food allergy testing. Eating gluten damages the villi of the small intestine, preventing nutrients from being properly absorbed. If left untreated, celiac can lead to osteoporosis and cancer, among other things.

4. The only treatment for celiac disease is a 100% gluten-free diet.

5. Symptoms of celiac disease vary greatly and some people have no symptoms or only mild symptoms, like migraines or fatigue. Symptoms are commonly misdiagnosed as other conditions and there is a lot of misinformation about celiac disease. In fact, 97% of people with celiac disease don’t know they have it, and it can take years and many doctors for people to be correctly diagnosed.

6. Celiac disease is genetic. If one family member has it, others should be tested.

7. Gene testing for celiac disease does not tell you if you have celiac disease. If you do not have any of the genes associated with celiac disease, then you can rule out celiac disease. If you do have some of genes, all it means is that you may develop celiac, but many people with the genes never develop it.

8. While there are countless great gluten-free foods and many restaurants have gluten-free menus, cross-contamination is the biggest challenge for most people with celiac disease. Gluten crumbs in a condiment jar, a cooking utensil or serving spoon that has been used on gluten, and even airborne wheat flour, can all cause a person with celiac disease to have a severe reaction, which can last for days.

9. Eating gluten-free is not a weight loss diet. Many gluten-free breads and other baked goods are not only expensive, but high in fat and calories. Many people with celiac disease gain weight on a gluten-free diet as the body heals and begins properly absorbing nutrients. Eating foods that are naturally gluten-free is cheaper and healthier than processed gluten-free foods.

10. While wheat is a top eight allergen required to be listed on food labels in the United States, gluten is not. Gluten (wheat, rye, barley, and contaminated oats) is found in many products and some products are unsafe for people with celiac disease as a result of cross-contamination. Only oats that are certified gluten-free may be consumed on a gluten-free diet and some people with celiac disease are unable to even tolerate oats that are certified gluten-free.

Much love, and thanks for the guest post, Sandra!


gfe--gluten free easily said...

Excellent post and listing of facts. Thanks, Sandra and Ginger. A couple of points though.

First, it's my understanding that 2-3% of biopsy-proven celiacs do not have the genes identified to date. This info was shared with me by my doctor, who is herself celiac and well versed in the topic. I have also read this information in publications elsewhere, but can't cite them off the top of my head. (BTW, I have read that European countries look to more genes than the ones identified in the U.S., but I have not researched that.)

Second, it's ideal to get tested first before going on a gluten-free diet, but still today folks can NOT convince their doctors to test them. As a support group leader, I heard this from folks all too often. Going off gluten for three weeks might indicate improvement in symptoms and be helpful in convincing one's doctor to test. Also, ideally, one would go to another doctor if the first one refused to test, but this is a fairly pervasive problem in my area and there are only so many doctors. On the converse, going off gluten three weeks might not cause any improvements. I certainly didn't see any improvements after three weeks. I actually felt worse from detox-type symptoms. I'd actually like to get a mega grant and get everyone tested for celiac. 97% are undiagnosed--that's about 3 million people in the U.S., much more than many other well-known diseases like Alzheimers, MS, Cystic Fibrosis, etc. Doesn't it make sense to test everyone? From a purely economical standpoint, think of all the money saved from preventing future serious illnesses as pointed out here. Not to mention all the healthy people who would result from diagnosis followed by a gluten-free diet.

Then there's the fact that celiac blood testing is not as highly accurate as portrayed. Dr. Green himself has been part of studies that revealed those with celiac via biopsy who did NOT test positive on bloodwork. How often does one who tests negative on bloodwork have a biopsy ordered by their doctor?

Biopsies continue to have issues as well. I have heard Dr. Fasano speak before about the high number of incorrectly taken biopsy samples so a reading couldn't be assessed properly, an equally high number of folks not adept at interpreting biopsy samples for celiac, etc. It is a fact that some people are getting diagnosed by pill cam even though the endoscopy could not diagnose them because the pill cam goes where no endoscopy can go. Our small intestine is huge ... endoscopy/biopsy can be like looking for a needle in a haystack.

Last, folks with diagnosed dermatitis herpetiformis without digestive issues will most likely not test positive on a biopsy. But, yes, they DO have bonafide celiac. That fact comes from Dr. Guadilani (sp?) of the University of Chicago Celiac Disease Center. To add to that issue, DH biopsies must also be taken accurately to get a proper diagnosis. One must go a distance away from the lesion to take the biopsy, not on the lesion itself. My own son had DH-type lesions and the dermatologist took the biopsy of the lesion itself and said no, you don't have DH. I didn't know the correct procedure at the time.

I would love for Dr. Oz to do a follow-up show and devote a full hour to this topic with Dr. Green, Dr. Fasano, et al, but leave Hasselbeck at home, please. She continues to spread misinformation that totally discredits anything valid that she shares. We don't need a spokesman like that.


marylandceliac said...

Ginger - Thank you so much for sharing my post and writing such nice things about me!

Shirley - You shared lots of great info! You made me laugh when you said that Dr. Oz should do a followup show and please leave Hasselbeck at home. I agree!

I took me a lot longer than 3 weeks to see improvements eating gluten-free. In fact, I think it took me longer than that to learn everything that I could and couldn't eat!

The Biocard Celiac Home Test can be useful when a doctor refuses to order the test and for some, it can also be cheaper. It is currently available in Canada and I believe the FDA is still evaluating it in the USA.