Wheat intolerance and POTS?

[MomtoGiuliana]

I'm curious how many of you have been diagnosed with wheat intolerance, and what triggered the test. I have a suspicion that I could be, however, I have never had any bowel/GI disturbance, which my doctors tell me is a hallmark of wheat intolerance. My last GP (who was "fired" by me after being unable to diagnose POTS or send me to the correct specialist) refused to order the test for that reason and I haven't pursued it. I am seeing my endocrinologist on Friday and am thinking about asking him about it. Any thoughts on this would be appreciated!

Thanks, Katherine

[MightyMouse]

Gluten intolerance is usually accompanied by GI problems, including gas, abdominal distension, nausea, constipation, diarhea. I have celiac/sprue, and the testing was initiated by my gastro doc. I told him I'd eliminated wheat, barley and rye products years ago because it bothered me, but never had been diagnosed with celiac. My allergist had suggested removing these things and seeing if I felt better--and because I felt LOTS better, I stuck with the diet for several years prior to the doctor asking me about it.

Prior to the blood tests, we reintroduced gluten in order to try to get an accurate results. My doctor believes I have celiac/sprue even though my blood work came back negative...I could only tolerate the added gluten for a few days...10 at most, and then I got way too sick to keep eating it. So, I may not have had enough exposure to build a measureable blood level. True celiac has a unique symtom, which is kind of gross... fecal matter floats and contains fatty matter (yep, I have that). Based on that, and my symptoms, my doctor believes I have celiac. It's better safe than sorry-- those with celiac who continue to eat gluten are at very high risk of colorectal cancers. Oh, it also seems to run in certain families and heritage. I probably got it from the Welsh side of the family.

Nina

[briarrose]

I have not been diagnosed with this problem. My daughter has been having stomach problems for the past two years. I’ve taken her to several doctors searching for answers. Recently I took her to an allergist who skin tested her and said that she is allergic to wheat and peanuts. So we’ve put her on a gluten-free diet.

http://www.celiac.com/st_prod.html?p_prodid=662

http://www.celiac.org/

[EarthMother]

My PCP did a food sesitivity blood test about 2 years ago and it came back showing that my body was making antibodies against wheat (and a sleu of other common foods I was eating at the time.) It was a complete shock. I had no IBS signs, and wheat was part of my daily diet. Did you know it is in soysauce and even cheerios?

For me, the tests indicated I was not gluten sensitive, so I was able to use a wide variety of non-wheat flours including rye and other products that contain gluten.

I now use a rotation diet, having wheat one day a week and a wide variety of grains on other days.

I have met lots of wheat sensitive people on my journey, some have been able to return to wheat after several months, others have decided to stay away for the long haul. Whatever works for you. I hope you find some help on your adventure.

Bon appetite,

EM

[leah1321]

I tested positive through all the blood tests to wheat intolerance and celiac sprue. I have almost every noticeable symptom (I even developed Depression for the first time ever earlier this year) and I found that the most bowel distress seemed to link to either milk or wheat products (I guess I am intolerant to both). My endoscopy was inconclusive and my doc decided that I have a 5-10% chance of having celiac and told me to stick to whatever diet I wanted and that she would retest in five years. About six months later, I was getting bad again (after adding many GI meds to control symptoms) and I decided I had enough and that I would eliminate things from my diet in hopes of finding something that was killing me. I then talked to my doc about this and she said that many people with motility disorders have wheat intolerance in a form very similar to lactose intolerance. I eat spelt and oats, two grains that celiacs usually avoid, the former because it contains a gluten that is a distant relative of wheat, and the latter because it is grown in the same fields as wheat in some places. Many more places are no longer doing this with oats and I pretty much only have organic, special grown, wheat-free advertised oats. I avoid barley and rye in addition to wheat. I am not able to keep away from it long-term because it 'shows' up in my food at different things and I realize it later or knowingly have a taste. I had about two and half straight weeks without wheat so far and that went very well. I was popping anti-emetics and tums like crazy for my nausea and now I am not really doing that a lot. I also have much less pain when I go to the bathroom (sorry), although I still have a lot of GI pain in general grrr. I am much more cheery as well and I noticed that after and then linked my Depression to the wheat thing. I do think many of us have GI problems, but I guess it couldn't hurt to try a no wheat diet. It is more expensive and very difficult to find/follow in many places. I don't care when I feel better eating this way.

[MomtoGiuliana]

Thanks everyone for responding to my question. Your experience/comments were very helpful.

I saw my endo on Friday, and got a very different response to my wheat intolerance question than I got two years ago from him! My endo told me that nearly every person with celiac disease, they are now realizing, has autoimmune thyroiditis. Both could be subtle and go undiagnosed, especially the wheat intolerance. He said that not everyone with autoimmune thyroiditis has wheat intolerance, but that it should be checked, even without any obvious symptoms. So, he ordered a blood test as a first step, and we'll see. BTW (since this IS a POTS forum) he said there is no evidence of a connection between POTS and wheat intolerance. But, we all know that there is not much research out there on this kind of thing yet.

Katherine