Getting Desperate - Really Need Help

[GlutenFreeManna]

I was eating those small amounts of gluten in the two months that I felt better because I did not think that a little bit of soy sauce or beef broth could cause problems. Now I am not sure what caused my diarrhea to come back. The GI said this is typical of post-infective IBS.

It really sounds like what happened is your body healed a little bit during those two months and you became more sensitive to the small amounts of gluten you were still consuming. This often happens from what I read here. Saying "a little bit won't hurt" Is like saying a little poison won't hurt with gluten. Or it's like an alcoholic going to AA when they have fallen off the wagon and saying, "I only put a little whiskey in my coffee in the morning, I didn't think it would hurt." It needs to be all or nothing with a Gluten Free diet--and in my opinion "diet" is the worst possible word because it implies a temporary change of eating habits--You cannot expect your body to magically ignore small bits of gluten if you are gluten intolerant or celiac. Yes, some people are not as sensitive to cross-contamination, but that doesn't mean they should KNOWINGLY add gluten to their food. And as far as you knowing more than the doctors- YOU DO KNOW MORE! YOU KNOW YOU BODY BETTER THAN ANYONE. You know whether the gluten-lite diet you have been following helps or not. The only thing to do now is to go COMPLETELY gluten free and see if the results are even better. If you really need a diagnosis to stick to this way of eating than perhaps you should do the Enterolab tests and share the results with your doctor. However, going gluten free without a diagnosis of gluten intolerance/celiac will not prevent you from being diagnosed with other diseases later if gluten is not your problem.

[poopedout]

It really sounds like what happened is your body healed a little bit during those two months and you became more sensitive to the small amounts of gluten you were still consuming. This often happens from what I read here. Saying "a little bit won't hurt" Is like saying a little poison won't hurt with gluten. Or it's like an alcoholic going to AA when they have fallen off the wagon and saying, "I only put a little whiskey in my coffee in the morning, I didn't think it would hurt." It needs to be all or nothing with a Gluten Free diet--and in my opinion "diet" is the worst possible word because it implies a temporary change of eating habits--You cannot expect your body to magically ignore small bits of gluten if you are gluten intolerant or celiac. Yes, some people are not as sensitive to cross-contamination, but that doesn't mean they should KNOWINGLY add gluten to their food. And as far as you knowing more than the doctors- YOU DO KNOW MORE! YOU KNOW YOU BODY BETTER THAN ANYONE. You know whether the gluten-lite diet you have been following helps or not. The only thing to do now is to go COMPLETELY gluten free and see if the results are even better. If you really need a diagnosis to stick to this way of eating than perhaps you should do the Enterolab tests and share the results with your doctor. However, going gluten free without a diagnosis of gluten intolerance/celiac will not prevent you from being diagnosed with other diseases later if gluten is not your problem.

I need this to make sense scientifically. I have been doing some research to see if I can understand why just a little bit of gluten could cause such a huge reaction after going gluten free when I was eating much larger amounts of gluten before. From what I have read it has to do with the immune response. The cells that produce the antibodies to gliadin have a memory from when I was eating more gluten and now when just a small amount of the antigen, gliadin, is introduced there is a very fast and vigorous response to the antigen. In other words the pump has been primed. If that is correct why would it take two months back eating gluten to produce the antibodies and have a positive test? Does anyone know the answer to that?

[Tina B]

I posted before under the topic "wrong test for celiac?" I have had diarrhea daily for about eight months. On December 30th I started a gluten-free diet - my idea, I did not consult a doctor. There was some improvement after two weeks, real improvement after two months which lasted for a month. Then it got worse again and I saw the doctor on April 30th. He told me I am too old to have celiac disease. He did not order any tests for celiac and ordered a colonogram and referred me to the GI clinic. I did the bowel prep for the colonogram which was very difficult. I had 30 bowel movements in 24 hours and became severely dehydrated and collapsed unconscious on the floor the night before the test. They found a small polyp on the colonogram which he does not think could be causing such severe diarrhea. However he wants me to have a colonoscopy to have the polyp removed. I told him I don't think I could do that bowel prep again, not right now anyway. I am down to 108 pounds and am not feeling strong enough to go through that again so soon. I am also concerned about what will happen if I have the polyp removed and I continue with the diarrhea afterward and what effect that would have on the area where the polyp is removed - perhaps bleeding or something else. I still have not been seen by the GI clinic and I want to see them before a colonoscopy as I want to know what is causing the diarrhea. I think the polyp is a red herring and 50% of people my age probably would have a polyp found if they had a colonogram. I still think I have celiac, but the tests won't be valid because of being on a gluten-free diet for over six months. I am considering going off my gluten free diet to see what happens. I would really appreciate any opinions or advice. My doctor was supposed to call me three or four days ago but he has not so I am feeling like I have no one to help me.

I was diagnosed in 1990. My husband is a primary care physician and has diagnosed several patients in their 60's and 70's. One woman I work with, mother was just diagnosed at age 75. Many have gone undiagnosed with very vague sympotms and if you carry the gene it can become active after a trauma to the body. This can be anything from pregnancy in women to another illness. The common thread in many of the people my husband has diagnosed has been an iron deficiency anemia that does not respond to iron replacement. Some have GI symptoms and weight loss but not all.

[ravenwoodglass]

So the challenge is different from going back to my old way of eating. I loved pasta, pizza, and whole wheat bread. Do I do the challenge for just long enough to bring back the horrible diarrhea?

That was what my allergist had me do. When I asked him if I should continue challenging his response was 'Oh dear, heavens no!!!!'. However after he referred me back to the GI the GI wanted a full long term challenge to 'prove' through the biopsy that gluten was poison to me. I refused but consented to a one week challenge which then produced a severe GI bleed. So the answer is if you want positive blood work and biopsy you will likely need to challenge for about 2 months to have the best chance of an accurate result. If you don't need a doctors firm diagnosis, or you have a doctor that is wise enough to acknowledge that the body really knows what it wants and what it doesn't want then they may diagnose you based on the results of the shorter, till you react challenge. If you don't feel the need for a doctors diagnosis and are content to listen to your body and be strictly gluten free based on your response to the challenge then you do have that option also.

[GlutenFreeManna]

I need this to make sense scientifically. I have been doing some research to see if I can understand why just a little bit of gluten could cause such a huge reaction after going gluten free when I was eating much larger amounts of gluten before. From what I have read it has to do with the immune response. The cells that produce the antibodies to gliadin have a memory from when I was eating more gluten and now when just a small amount of the antigen, gliadin, is introduced there is a very fast and vigorous response to the antigen. In other words the pump has been primed. If that is correct why would it take two months back eating gluten to produce the antibodies and have a positive test? Does anyone know the answer to that?

I don't know the answer, but my best guess would be that it has something to do with the sensitivity of the tests. The tests are currently not very accurate from what I have read. Your body's response is a much more accurate gauge at this time. I really do hope that that changes in the future and someone develops an accurate, scientifically validated test that does not require someone to destroy their body with large amounts of gluten in order to be diagnosed. Until that time do you want to trust an inaccurate test or what your body is telling you? There are many things that science cannot explain. There are also many things that just haven't been researched enough and celiac disease is one of them. I hope you keep searching and find your answer.

[torimuse]

I very much so wish you could fire your doctor. I'm just now going through very similar things as you are, even though I'm only 24. My first post on this forum was actually titled, "Is it all in my head?" because I felt like I couldn't have something serious like this, but all the symptoms pointed to it, and I was finally ready to listen. Let me assure you, as many others have for me, that it is most definitely not in your head. You are not going crazy. You're not a nut-job for wanting to do the testing. You just seem like you're as lost and scared as I was a week ago. (It gets better, I promise!) Hells, I'm still scared, but as you learn what's going on, and start realizing just how much is out there that you can still eat and be fine, the lost feeling goes away and stops fueling the fear.

My suggestion would echo those already posted here. Go completely gluten free for a couple weeks. I'd also avoid anything in the category of the 8 major allergens (wheat(duh), eggs, dairy (stay away from the protein in dairy called casein, because for many Celiac patients it's casein, rather than lactose, that their body can't handle), fish, shellfish, soy, peanuts, tree nuts) because you could have secondary intolerances or allergies.

My case seems to be rather rare, since I've put the pieces of my intolerance together after only a year and a half of noticeable symptoms, so I don't have a lot of the problems that go along with the long term damage to your system, or at least I haven't discovered any. However, after going gluten free for a week, then challenging for a week, my symptoms had completely reversed by the end of my gluten free week, and came back the very first day I ate gluten, and it was only 10 small crackers from a Lunchables pack. I am now on my second week gluten free after the challenge, and I'm finding that it's been much harder to recover this time, though I'm starting to think I could be accidentally glutening myself, as well as having a secondary reaction to eggs. Your reaction sounds very similar to mine, seeing as how I used to eat everything, and after working at Panera Bread Co, thought of myself as an amateur bread connoisseur.

Now, I get sicker a lot faster for a lot less gluten now, and it's taking longer to recover, and it hasn't been that long of a time period. To give an example, I had a reaction just from eating off of a cast-iron surface that had at one point previously cooked french toast and/or eggs, even though it had been washed before it was used to cook my food, which contained neither gluten nor eggs (to my knowledge). It just proves that even the tiniest amounts of gluten can indeed be harmful. It can even be ingested by using glutenous lotions/moisturizers, hair products, makeup products, and other topical products, since hands seem to touch everything, and then it always seems to end up in the food.

If you feel that you need a gluten challenge and get tested to prove it to yourself, go ahead and do it, but I'd recommend the one to two months that have been suggested. It's what my own doctor said when she told me I couldn't get tested the day I saw her because I'd been gluten free for a week. So if you won't take it from me, take it from another doctor. Some people need that reassurance from someone in a position of authority. That's PERFECTLY OK. However, if you decide after the first few days that you'd rather not feel sick like that, and are willing to adopt a gluten free lifestyle 100%, That's OK, too. If you don't get tested, you have to act like you have Celiac's, because you very well might. You don't know. Some people can live like that without the doctor telling them, but some can't.

In the end, do what your head and heart tell you to do, but do it with all the knowledge of the consequences of your decision.

[poopedout]

I decided to order the Enterolab gene test as that will tell me if I do not have the genes for celiac. I think that would be useful information for me. I don't care about the doctor. He did order some stool tests so I will do those. I am hoping to get the anti tTg/Iga and the total Iga done now. I may or may not eat some gluten.

I will have the colonscopy with biopsies and polyp removal, but not yet.

He also ordered an upper GI x-ray with small bowel follow through as he said I could have Crohn's disease. Apparently I am not too old to have that. I will let you know the results.

[torimuse]

Good luck! You seem to have a good idea now of what you want to do. That's awesome, keep it up!