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I haven't posted in a long time My question is about the article Kandee wrote in the latest newsletter about gluten intolerance/Celiac. Kandee, in it you say not to stop after the EDG for flattened villi and to ask for blood tests for Celiac. I have had both the blood tests and the EDG - my blood tests came back positive for gliadin antibodies but since my EDG didn't show anything, my GI doc told me there was nothing wrong with me. (I have actually been to two GI docs who told me my positive blood test "didn't mean anything"!!)

Hi Miss Pepper, Good to see you back.
Well, first off I'm certainly no expert, or doctor but have been concerned with Celiac disease since I first heard about it, and I have been allergic to wheat for many years. Thus, like many on the boards here, I read everything I can get my hands on, talk to doctors, and form my own opinions. You will need to form your own as well.

Let's see if I can help by making an analogy to something you might understand better. Diabetes is one of the fastest growing autoimmune diseases of today. If you get a fasting blood test and your glucose levels are under (I think it is) 99 you are considered to be without diabetes. OK, let's say your fasting blood levels were 98 but you have risk factors; a sedentary lifestyle, overweight, a parent has diabetes, etc. . You go about your business with the peace of mind that you don't have diabetes. But then it is recommended that maybe you might want to consider having an IR (Insulin Resistance) test since you have many of the risk factors for diabetes. You have the IR test and it comes back positive. What are you going to do? Are you going to change your lifestyle and eating habits to reflect more that of a person who already has diabetes in hopes that you can thwart the disease before you do get it, or are you going to say..."Well, I don't have diabetes yet, so I'll continue my lifestyle the way it is and BET that I won't ever get it"?

I look at the Celiac blood tests in much the same way....You took the EMA, tTg, IgA and IgG gliadin tests plus had the endoscope biopsy for flattened villi. You test negative on the gold standard one for most GI's..the EDG. You also test negative on a tTg or EMA or both, but you test positive on the antibodies tests, plus you have other risk factors...IBS or other associated autoimmune diseases, your are of northern or eastern European decent, you may have unexplained rashes, etc. . (That would be much like testing positive on the IR test I was talking about.)
What are you going to do, bet that you will never have CD and continue eating gluten laced foods, or take precautionary methods to assure that if you are a candidate for CD in the future insure NOW that you will never have damage done to your small intestine, and begin a gluten free diet?



You say Celiac is an autoimmune disease, and my rheumatologist has diagnosed me with Undifferentiated Connective Tissue Disease, because I don't fit neatly into any of the autoimmune disease categories (blood tests come back normal sometimes, off sometimes). That's interesting. What do you think? When I was in last week, he did make mention of the celiac blood test that was positive, but when I told him what the GI doc said, he moved on. I guess I am just wondering what your take on this is Do you really want to know? Do you think I should try going to yet another GI doc? I can't tell you what to do..that's totally up to you. If you feel you are being listened to by your GI and taken seriously, then stick with him/her, if not, move on. My own personal feeling on this is that GI's are not trained enough in treating CD, nor are allergy specialists..in fact no one really is. I had the privilege of meeting and talking with a GP that does treat CD, in part because he did his internship in pediatric CD and treats both adult and children with CD....and he's not a specialist but knows how to treat it better than any specialist I know. I have been following Heather's IBS diet guidelines since 2001 and have not had any great improvement, although her tips have helped. But it seems like my stomach hurts no matter what I eat
Oh, I'm sorry. Are you following the IBS diet to the letter and not cheating? If so then you may want to give the GF diet a try. But I warn you, it is neither easy nor as healthy as the IBS diet that includes wheat. Do your research first....and read other posts here from Ruchie, Beth, Chrissy, and Stacey..and others. Some, like Stacey noticed a world of difference in only about a week's time when she went GF, others haven't noticed any change.

My biggest concern for those of you reading this is that we've created a gluten paranoia and a lot of people who have been properly diagnosed with IBS and are not feeling better will take it upon themselves to think they are gluten intolerant. Please everyone, get tested first....and keep copies of your blood work. If you test negative on all of it, don't even consider going GF, stick with Heather's diet and recommendations.

Thanks! You're welcome.
Kandee

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My biggest concern for those of you reading this is that we've created a gluten paranoia and a lot of people who have been properly diagnosed with IBS and are not feeling better will take it upon themselves to think they are gluten intolerant. Please everyone, get tested first....and keep copies of your blood work. If you test negative on all of it, don't even consider going GF, stick with Heather's diet and recommendations.

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My biggest concern for those of you reading this is that we've created a gluten paranoia and a lot of people who have been properly diagnosed with IBS and are not feeling better will take it upon themselves to think they are gluten intolerant. Please everyone, get tested first....and keep copies of your blood work. If you test negative on all of it, don't even consider going GF, stick with Heather's diet and recommendations.

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I too would be concerned about gluten paranoia, but regardless of tests done there can still be false negatives specifically those with Microscopic Colitis. For me blood tests do not show gluten intolerance, but once having gluten removed from my diet I no longer have painful and persistent diarrhea. For those with MC by the time blood tests would show gluten intolerance there would be significant damage to the GI.

The only way to find out if one has Microscopic Colitis is via a biopsy during a colonoscopy. Luckily my Dr took a biopsy as this isn't a normal procedure especially if the GI looks ok during the procedure.

I was originally diagnosed with IBS and if I had continued to eat gluten or other problematic things for those with MC significant damage would have occured.

A lot of Doctors even GI doctors may not have even heard of MC as it is very rare, or at least has been rare in diagnosis as I imagine that there are some people who may be diagnosed with IBS who may actually have MC.

So if you have found that the IBS diet doesn't work for you, especially if you find gluten to be problematic make sure that your Dr has found you to not have Celiac or other gluten intolerant diseases including Microscopic Colitis.

Thanks,
Mike

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