I had a question from a subscriber to my newsletter the other day and it was a question that I thought my blog readers might be interested in. So here is her question, (I excluded her name in case she wanted to remain anonymous), and my answer:
Hi Mary,
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> I recently had dna testing done and they say that I am 24.9 times more likely than the average person to develop Celiac Disease during my lifetime.
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> I haven’t been having any particular digestive or intestinal problems but this was alarming to me and so I decided to go gluten-free for 2 weeks because Dr. Oz on his television show recommends that doing so can be an indication of whether one is gluten intolerant. I didn’t notice any changes during the two weeks nor did I feel different after resuming the consumption of wheat products.
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> My question is this: Do you think that trying to eating gluten free would be a wise idea for someone with my particular genetics? My doctor probably already thinks I’m a hypochondriac, so I’m reluctant to ask him to have blood tests run to see if I have Celiac Disease. Besides, wouldn’t I have some obvious symptoms if I did have it? I do have fibromyalgia which I was just reading, that, can mimic Celiac Disease.
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> I fully realize you are not an M.D. and cannot advise me in that regard but I’m just hoping you have some insight on all of these things.
The following is a clip from a blog post I did when we found out my granddaughter tested postive for Celiac: (You can read the whole post here).
Although there is no way to know who will definitely develop celiac disease, we do know that in order to develop it, you need three things to line up.
- A genetic predispostion
- A diet rich in gluten
- An environmental stressor/trigger
You could have all three of these things and never develop celiac disease. But it can definitely be said that if you are missing any one of these three factors you will not develop celiac disease. You may be gluten intolerant, just not a celiac.
That genetic predisposition would be the genes HLA-DQ2 and HLA-DQ8. There is strong evidence that shows you must have one or both of those genes to develop Celiac Disease.
Since you say your DNA test shows that you are 24.9 times more likely to develop Celiac, I will assume you have at least one of those genes. 97% of people with Celiac Disease have at least one of those genes, with over 90% having the DQ2 gene and less than 10% having the DQ8 gene.
Now according to the research I did, having those “Celiac Disease genes” doesn’t mean you will definitely get Celiac. In fact, the majority of people that carry the genes, will never develop Celiac. It just means that you have the risk of developing Celiac Disease, “Someday“.
Now, as for your fibromyalgia, in his book, “Celiac Disease, A Hidden Epidemic“, Dr. Peter Green, says that “fibromyalgia is a poorly understood condition characterized by symptoms that mimic other diseases. One study done by a nationwide celiac disease support group indicated that among adults ultimately diagnosed with celiac disease, 9% were originally diagnosed with fibromyalgia, and 30% with IBS”.
Dr Green in his book also states that, “Since many patients with celiac disease have muscle aches, joint pains, GI symptoms and fatigue, it is understandable that those people might get a label of fibromyalgia.”
“The diagnosis of fibromyalgia is difficult to define, it is based on a number of symptoms that can be due to other conditions. And celiac disease is one of them.”
So in closing, I guess my question to you would be, When you did your gluten free 2 weeks, did your fibromyalgia symptoms clear up, go away all together, or get slightly better? If you answer yes to any of the above, I would talk to my doctor about the blood test for celiac disease. Just remember, you must be eating gluten to have the blood tests be accurate.
I talk about the blood tests for celiac disease in this post, Celiac Disease-The Symptoms. I hope this helped to answer your questions.
I have not been tested for gluten allergy, but it is suspected. I am trying to avoid gluten to see if it helps me to feel better. I have found this to be very difficult. I never knew there was gluten in so many items (salad dressing, for example). Unless the above person really did his/her research, isn’t it possible that they may come across some gluten (or cross contamination) throughout that two week trial? This could account for there not being any change in symptoms.
I am finding that on the whole, I think I do feel better and have more energy. However, I still have episodes of diarrhea. I am guessing that I still am getting small traces of gluten somewhere. (That salad I had at McDonald’s, for instance). I did have one day in which I had almost normal bowel movements. It was wonderful. I was like, “So this is how the rest of the world feels 24/7? WOW!” But then, diarrhea the next day.
I’m still trying to stay hopeful. Looking for advice as to what I can cook for myself (and family of 4 children + husband) that will not be too shocking for them. I know it is a lifestyle change, and I need to learn how to cook differently. I guess I just am feeling overwhelmed and do not know where to begin.
Any suggestions you may have would be greatly appreciated.
Jenni,
These are great questions and I’m going to answer them in today’s blog post.
I have been gluten free for over 2 years. The first year was bumpy, because I was not very careful about what I ate. I was mostly gluten free, but not absolutely. During that time I paid a heavy price for not being so careful, and I learned my lesson. I became a “Gluten Detective” which meant that I had to question everything I ate. I had to make sure I only put something in my mouth if I was absolutely sure that it wasn’t contaminated. I bought my own toaster, my own kitchen implements kept separately, and my own colander. I marked everything GF for my family to recognize and not to use them for “regular” cooking. I had to do regular updates and mini seminars on what can contaminate my diet: f.ex. bread crumbs flying everywhere from crusty bread.
I had also discovered (by going to all the major fast food sites) that all fastfood fries are coated with wheat flour. I can’t eat at any of these places now. I discovered many foods which have a disclaimer that “this product was manufactured in a facility that also produces wheat products”, so that was eliminated too from my diet. I couldn’t be sure if what I was eating was one of the first off the line, in which case it would be contaminated. It takes a lot of research to know the sources of gluten in your food, but now I can say, that all the work was worth it. I didn’t know for a long time, that soy sauce, the favorite ingredient in Chinese food also contains wheat! So, out went Chinese food!
I also didn’t know, that even without obvious symptoms, a person without overt symptoms is developing intestinal damage, unless they go on a gluten free diet for life. And it takes about a month to 6 weeks for the intestinal villi to regenerate themselves. And then, begin the job of properly absorbing the nutrients from food. This disease manifests itself in very underhanded way. A lot of people get treated for psychological diagnosis before the true cause is discovered.
Agnes,
Your reply to Jenni’s question is so good, I’m going to post it in the reply section of my answer to her.
Thank you so much for sharing your experience.
I know, the cross contamination thing can be tricky. They didn’t teach that back when I was diagnosed, so I used the same toaster as the rest of the family for almost 20 years. No wonder I started having GERD and the startings of Barretts Esophagus Disease.
They also didn’t tell me (way back when) that I would need follow up scopings to be sure that I was staying healthy.
That is why I started this blog. I wanted to make sure information got out there for other celiacs and gluten intolerant people.