Gluten Challenge Survival

[baggotlane]

It is good to be back here again! Last time, June last year, it was all gloom and doom. In May tests for celiac disease were all negative even though genetic indicators and Type 1 diabetes since a teenager made me highly disposed. There was nothing else for it but to go back to a full gluten diet. I did this for over 7 months to make sure the results of endoscopic biopsies would not be compromised. Today I got the results. They were flat out NEGATIVE. So, despite genetic predisposition to and classic symptoms of celiac disease I do not have celiac disease.

I give these results because I have seen here so many people saying celiac disease is an underdiagnosed disease. It may well be but that does not mean that everyone with the various symptoms actually suffers from it. So, there is hope. Let me hear no more moaning and groaning that it has to be celiac disease and that there is no point in undergoing the daunting gluten challenge.

This does not mean I am well. I still suffer and now I have to find another cause. One may be bacterial (e.g. H.pylori) and another may be a long term (50 years) diabetic problem called gastroparesis. But, the point is, there are other possibilities. I am not saying they are better than celiac disease; the latter of them is likely worse. And it is going to take a fair amount of work to get to the pit of all this.

So, let me not hear more complaints that even slightlly negative TTG tests mean that you have it. You may not. Get the surgical biopsy don and make sure you wait plenty of time.

Andrew

[Carriefaith]

This does not mean I am well. I still suffer and now I have to find another cause.

Even though you tested negative for celiac, you could still be intolerant to gluten or to another food. Some of the most common food intolerances are casein, lactose, wheat, eggs, soy, nuts, and corn. Some foods such as gluten and dairy have only recently been introduced into the human diet, considering the length of time humans have been on the planet. Early Homo sapiens would have rarely ate dairy products (if at all) and they would have rarely ate gluten based grains. That is why so many people have trouble with them. I am not a doctor but I would suggest trying a diet high in lean meats, vegetables, and fruits and see if that helps.

[Claire]

Andrew -

It is quite possible that your are right and you do not have celiac.

It is also possible that that the negative test was not accurate. Many biopsies are not because they only take a small sample from one, sometimes two, areas. 7 months is a short time to expect serious intestinal damage. It might be long enough for some people but others might not show the damage for a much longer period.

There is a book 'A Personal Touch on Celiac Disease' that has one story in it that is very revealing - called 'Confessions of an Undiagnosed Celiac'. It sure puts the diagnostic process in focus.

Did you have a genetic test for either Celiac or for gluten sensitivity? I personally feel that the genetic tests are more reliable even though they cannot rule that you have celiac they certainly can determine that you could not have celiac. I went that route because I had been on a restricted gluten diet for years and there was no way to get an a reliable test. Because i have neurological damage, a gluten challenge was absolutely ruled out.

Good luck to you. Claire

[Becky6]

You may not have celiac but you could have a gluten intolerance. My test was neg and I went gluten-free cause it was helping my daughter and i had so many awful symptoms. well they are all gone now after 6 weeks of being gluten-free! And i had these issues for 10 years. Did you try a gluten-free diet and not get relief? If that is the case then you may be right it could be something else. But for those of us who had neg tests and gluten-free worked it still may be gluten. Best of luck to you.

[loraleena]

It is good to be back here again! Last time, June last year, it was all gloom and doom. In May tests for celiac disease were all negative even though genetic indicators and Type 1 diabetes since a teenager made me highly disposed. There was nothing else for it but to go back to a full gluten diet. I did this for over 7 months to make sure the results of endoscopic biopsies would not be compromised. Today I got the results. They were flat out NEGATIVE. So, despite genetic predisposition to and classic symptoms of celiac disease I do not have celiac disease.

I give these results because I have seen here so many people saying celiac disease is an underdiagnosed disease. It may well be but that does not mean that everyone with the various symptoms actually suffers from it. So, there is hope. Let me hear no more moaning and groaning that it has to be celiac disease and that there is no point in undergoing the daunting gluten challenge.

This does not mean I am well. I still suffer and now I have to find another cause. One may be bacterial (e.g. H.pylori) and another may be a long term (50 years) diabetic problem called gastroparesis. But, the point is, there are other possibilities. I am not saying they are better than celiac disease; the latter of them is likely worse. And it is going to take a fair amount of work to get to the pit of all this.

So, let me not hear more complaints that even slightlly negative TTG tests mean that you have it. You may not. Get the surgical biopsy don and make sure you wait plenty of time.

Andrew

Even though you tested neg. for celiac, you can still be gluten intolerant. Get a fecal test done by enterolabs. Gluten intolerance can make you feel like hell without the typical celiac villi damage. If you felt better gluten free than there is all the proof you need. Also, the tests are not full proof. It is possible to have neg tests and neg biopsies. The doc can take samples from undamaged areas and you get a neg result. Good luck

[baggotlane]

Thank you all for the replies. They were not what I had expected. You seem to think that just because of genetic factor and chemical tests (full battery of them by two doctors), little to no improvemennt under a gluten-free diet, followed by 7 months of a full gluten diet, followed by recent surgical biopsies, that I may still have celiac disease or, as a minimum, be sensitive to gluten. How much more evidence do you need?! Let's be practical. There is no point in pursuing the celiac disease suspect, let's move on to another one - and there are several, one of which did appear in the biopsies. I do have to find the cause to relieve my discomfort. Nearly a year on the celiac disease track has not been fruitful.

My point is that many people seem content to sit around with celiac disease as the only candidate. Even if there were sensitivity to gluten it does not manifest itself in much difference. In fact, in talking to people at various groups it seems a lot of people are content to hold on to the celiac disease picture even when the evidence is murky.

I don't feel better without gluten: I have forced myself to a 7 month challenge and all evidence says celiac disease is not present. Now the time has come to find a better explanation. You cannot stay stuck in one track, particularly one that is going nowhere.

Andrew

[gf4life]

Hi Andrew,

I'm glad that you are confident that you do not have Celiac. If you did not see improvement on the diet and did not get horribly ill on the gluten challenge, then you are most likely right. It is probably something else. I do hope you find out what it is so you can get your health back.

Please don't be too surprised by the responses. They are meant to be helpful. Many of us did have negative results, but the reversal of symptoms when following the diet are so dramatic, that it can't possibly be anything else! We are only trying to let others know that the current tests are NOT 100% accurate by any means.

ALL of my tests were negative, although I suspect I might be immuno-deficient(haven't succeded in getting a doctor to test me...) and my blood results would then be effected. I also had a doctor who took NO tissue samples from my intestines and the second doctor only took 3 tissue samples after being gluten free and then a two month gluten challenge. I was so sick from day one on the gluten challenge that 2 months was complete torture.

Thank you for the update on how you are doing.

God bless,

Mariann

[baggotlane]

Thank you, MaryAnn for a pleasant reply. I fully ascribe to what you are saying. Most people here do try to be helpful to each other but avoidance of reality checks is not being helpful. I recall being told here before I decided I had to get off gluten-free to get endoscopy done that one month to wait would be OK. Then it was 2 months, then 3. So, I gritted my teeth and went for 7. I daresay there will be some who think it might take a lifetime.

There is a definite need in this group to face the reality that there are wide differences and that not everyone has gluten sensitivity or celiac disease.

Bye for now,

Andrew

Hi Andrew,

I'm glad that you are confident that you do not have Celiac. If you did not see improvement on the diet and did not get horribly ill on the gluten challenge, then you are most likely right. It is probably something else. I do hope you find out what it is so you can get your health back.

Please don't be too surprised by the responses. They are meant to be helpful. Many of us did have negative results, but the reversal of symptoms when following the diet are so dramatic, that it can't possibly be anything else! We are only trying to let others know that the current tests are NOT 100% accurate by any means.

ALL of my tests were negative, although I suspect I might be immuno-deficient(haven't succeded in getting a doctor to test me...) and my blood results would then be effected. I also had a doctor who took NO tissue samples from my intestines and the second doctor only took 3 tissue samples after being gluten free and then a two month gluten challenge. I was so sick from day one on the gluten challenge that 2 months was complete torture.

Thank you for the update on how you are doing.

God bless,

Mariann

[Carriefaith]

Have you been tested for other digestive diseases such as chron's, ulcerative colitis, or collagenous colitis?

[baggotlane]

Have you been tested for other digestive diseases such as chron's, ulcerative colitis, or collagenous colitis?

\

Yes, I have been tested (two weeks ago) for colitis (including the types indicated). This was also done 8 monthsago. Absolutely no signs. Chron's disease has not yet been tested for. Of much higher probabilities are bacteria (one type was found that might be contributory but we shall see) or a long-term diabetic condition known as Gastroparesis - nasty if you are diabetic and trying to maintain stable BG levels.

Thanks for the suggestions.

[jenvan]

Read this article, "Challenging the Gluten Challenge" https://www.celiac.com/st_prod.html?p_prodid=1281

[baggotlane]

Thank you for suggesting me to read this article. I had seen it already. It did not sway my conclusions on the subject. Sure, a Finn boy sixteen years ago, after returning to a glutenous diet provided a negative biopsy up to five years later. I don't think that proves anything. There are plenty of people who live in countries (including Finland) where consmption of gluten is low or even near zero (Lapps, for instance or Esquimaux - al least until very recently) who may inadvertently have not consumed gluten for a period. To make the case that they needed to be on a western-style diet of gluten consumption for five years in order to prove the celiac disease was behind it all is really pushing a rather weak premise.

The second paragraph of the article you cite is more reasonable "Some people with celiac disease will experience a return of intestinal damage within a few weeks of consuming relatively small amounts of gluten. Such brief challenges are valuable for these individuals. However, many people with celiac disease or dermatitis herpetiformis will require much larger doses of gluten, over much longer periods, to induce characteristic lesions on the intestinal wall." I can subscribe to these statements. However, for me as I have pointed out in prior messages in this thread, a full-blown gluten ingestion for seven months caused no worse a condition than the gluten-free diet did. This makes me feel that the celiac disease hypothesis is weak, at least in cases like mine. Instead, investing time by seeking alternative causes seems to be far more practical. Unlike many people who seem wedded to celiac disease as a lifestyle I cannot spend five years twiddling my thumbs and hoping the odds will favor non-celiac disease. There are a number of other non-celiac disease possibilities that can be addressed more rapidly. Incidentally, fecal tests were also all negative.

Andrew

[marciab]

Why all the hostility ? I'm new here and I haven't been tested for celiac disease in any way, shape or form and the people here are not badgering me to get tested !!! Instead they have been very supportive. Most of them realize that the tests are inconclusive and taking the gluten challenge is really the only way for anyone to know if they can benefit from going gluten free. Lucky for me, I have been helped by going gluten free. Oats make me hyper, maybe they are making you hostile ? : )

Have you looked at your diet for other food allergies or sensitivities? I didn't realize the fact that soy milk caused excessive amounts of phlem in my throat that meant I should eliminate it. I also didn't realize that the fact that my bottom lip swelled slighty every time I ate ham, I should eleminate it. Or the fact that everytime I ate eggs and had horrible gas and bloating, and that I should stop eating them. I was taking meds for the symptoms like most people do. Duh !!

By the way, I had the Gastroparesis test. The report is negative, but my doctors can't decide if they agree with it since my stomach slows considerably after 40 minutes. I've also had an endoscopy, colonoscopy, an upper GI, gall bladder surgery and loads of lab work. I have a hiatal hernia, erosive gastritis, diverticulitis, IBS, etc. WHATEVER !!!! I just wanted the pain to stop ... My GI prescribed meds and gave me several diets to follow over the years, but never mention food allegies, food sensitivities or heaven forbid "celiac". Afterall, what good would I be to him if I wasn't in pain ???? Marcia

[aikiducky]

FWIW, I think your approach was entirely sensible. Try the diet, see what happens, try gluten again see what happens, do the testing. I don't see how you could possibly test it more, except for maybe testing again in a few years just in case.

I just wanted to comment on one little thing:

There are plenty of people who live in countries (including Finland) where consmption of gluten is low or even near zero (Lapps, for instance or Esquimaux - al least until very recently)...

I don't know about Lapps, but Finnish people in general eat a very gluten rich diet, with lots of bread, pasta and baked goodies. I'm Finnish (from Finland ) that's how I know.

Pauliina

[baggotlane]

Why all the hostility ? I'm new here and I haven't been tested for celiac disease in any way, shape or form and the people here are not badgering me to get tested !!! Instead they have been very supportive. Most of them realize that the tests are inconclusive and taking the gluten challenge is really the only way for anyone to know if they can benefit from going gluten free. Lucky for me, I have been helped by going gluten free. Oats make me hyper, maybe they are making you hostile ? : )

Have you looked at your diet for other food allergies or sensitivities? I didn't realize the fact that soy milk caused excessive amounts of phlem in my throat that meant I should eliminate it. I also didn't realize that the fact that my bottom lip swelled slighty every time I ate ham, I should eleminate it. Or the fact that everytime I ate eggs and had horrible gas and bloating, and that I should stop eating them. I was taking meds for the symptoms like most people do. Duh !!

By the way, I had the Gastroparesis test. The report is negative, but my doctors can't decide if they agree with it since my stomach slows considerably after 40 minutes. I've also had an endoscopy, colonoscopy, an upper GI, gall bladder surgery and loads of lab work. I have a hiatal hernia, erosive gastritis, diverticulitis, IBS, etc. WHATEVER !!!! I just wanted the pain to stop ... My GI prescribed meds and gave me several diets to follow over the years, but never mention food allegies, food sensitivities or heaven forbid "celiac". Afterall, what good would I be to him if I wasn't in pain ???? Marcia

[baggotlane]

Where do you see hostility? I think you might need to review the messages - all of them to get the background.

Anyhow, I 'm sorry to hear you're having difficulties. It sounds like a possible sensitivity you may have. There are tests to isolate a variety of foods but it is a lengthy business. But you may be lucky. At least it's worth a try.

If you believe you have celiac disease and have been gluten-free for some time then I think you might have to take the challenge. However, I warn you, after you've taken it people here will tell you it is not conclusve either, unless you wait five years! There are a lot of 'experts' out there but the lack of consistency between them is scary. Of course, it is a difficult condition to diagnose correctly so that divergences of opinions are only to be expected.

If you had endoscopy and coloscopy did you not get a biopsy to see whether the stomach walls had been damaged? And why gastroparesis - are you diabetic? If not, then that ailment is not so bad. But, if, like me ( a lifelong Type 1 diabetic) it is a very big deal.

To answer your question, tests do not show any food sensitivities. I can eat anything, within reason, without any direct sympoms. The effects of eating - anything, ends up the same way.

One other thing you might think of in your condition. See if you have H. pylori bacteria in your stomach. This is not at all uncommon (far more so than celiac disease) and can give rise to a variety of digestive problems. If you have it then then you can get it eradicted.

[ebrbetty]

I hope you feel better soon and can find out exactly what is causing all your troubles. it seems to me you have done everything possible to find out weather or not it is or is not celiac.

I'm just starting the gluten-free diet myself, only about 3 weeks and still having pain, better, but not great. We all have one goal in mind, to feel better and stop the pain. good luck.

Betty

[baggotlane]

FWIW, I think your approach was entirely sensible. Try the diet, see what happens, try gluten again see what happens, do the testing. I don't see how you could possibly test it more, except for maybe testing again in a few years just in case.

I just wanted to comment on one little thing:

I don't know about Lapps, but Finnish people in general eat a very gluten rich diet, with lots of bread, pasta and baked goodies. I'm Finnish (from Finland ) that's how I know.

Pauliina

Yes, I was thinking about Lapps who, I had heard used to have diet og fish, reindeer mwet, berries in summer. I other words, no gluten. I'm sure that has all changed in recent years but the cited article was for 16 years ago for a patient for whom the data would have been collected years prior to that.

Tanks for your comments.

Andrew

[marciab]

Andrew,

I wanted to apologize to you for ranting. I am obviously still pissed off at my doctor for putting me through all those medical tests, prescribing all those meds and still not telling me that my digestive problems could have been from food allergies and sensitivities. I'm sorry I took it out on you. I'm actually a pretty nice person.

He looked for gastroparesis because I feel food getting stuck in my stomach. Do you ? Esp. meat. It could be tied to my CFIDS. I have nuerological problems associated with CFIDS. I'm not diabetic. And I am negative for H-pylori.

This website is helping me find peace with my condition. Especially the message boards. I'm sure there are some who would prefer I have a biopsy or test of some sort, but all in good time. Right now, I'm just going to enjoy not having bouts of "D" or "C" and work on building a diet that my body agrees with.

I agree with you that this illness is difficult to diagnose and I'm not convinced that there are any tests out there really worth taking. Good luck with you medical issues. Sincerely marcia

[key]

Andrew,

Thanks for sharing your test results with us. I tested borderline on blood tests and the diet helped me feel better. It is hard not knowing 100% whether you have celiac, because for me, like now when my digestion isn't perfect, I start thinking maybe it was something else. I do feel better still though. I am vegetarian though and I find this diet very hard. I am feel like i AM wasting away. Not sure which is worse, but I do get very sick when I consume gluten, so for me there will be no gluten challenge.

I guess if I were you and I didn't feel better eating gluten-free and I had had all the tests done to rule it out, then I would just keep eating it. I mean what would the point be. Like others have said though, if you feel better not eating it, then don't eat it. My GI doctor did tell me that if a person has IBS, that the gluten-free diet will help with the symptoms.

HOpe you feel better and figure out what is going on.

Monica

[baggotlane]

Andrew,

I wanted to apologize to you for ranting. I am obviously still pissed off at my doctor for putting me through all those medical tests, prescribing all those meds and still not telling me that my digestive problems could have been from food allergies and sensitivities. I'm sorry I took it out on you. I'm actually a pretty nice person.

He looked for gastroparesis because I feel food getting stuck in my stomach. Do you ? Esp. meat. It could be tied to my CFIDS. I have nuerological problems associated with CFIDS. I'm not diabetic. And I am negative for H-pylori.

This website is helping me find peace with my condition. Especially the message boards. I'm sure there are some who would prefer I have a biopsy or test of some sort, but all in good time. Right now, I'm just going to enjoy not having bouts of "D" or "C" and work on building a diet that my body agrees with.

I agree with you that this illness is difficult to diagnose and I'm not convinced that there are any tests out there really worth taking. Good luck with you medical issues. Sincerely marcia

It's OK. Statements made over this medium can sometimes give false impressions. Regarding your question I do suffer from bloating. On its own it's not too bad but, as is sometimes the case, the bloating occurs in the evening time. The temporary non-diegestion of food makes the blood glucose level fall (in a diabetic, I mean) because the food anticipated by the insulin taken is not there. This then makes you compensate by taking carbohydrate to prevent the blood glucose from falling to far. The trouble then arises during the night when the vagus nerve finally releases food stored in the stomach (protein and fats). When broken down into carbs the blood glucose may skyrocket while you are asleep. I have seen this occur but it is too early yet to say wheter it is the cause of the problems I am having.

The good news (I am told is that there are now drugs available to handle gastroparesis.

Anyhow, keep looking around. I see from your record you have been writing quite a few messages during the past two months. So, I'm sure you'll keep us udated.

Andrew

[gf4life]

He looked for gastroparesis because I feel food getting stuck in my stomach. Do you ? Esp. meat. It could be tied to my CFIDS. I have nuerological problems associated with CFIDS. I'm not diabetic. And I am negative for H-pylori.

Marcia,

I have the same problem. It is most noticable with beef and pork, less so with chicken, so that and some mild fish and eggs are my main protein. If I feel like I am having trouble digesting I use digestive enzymes, they help even after I've eaten. If I eat beef or pork I double up on the enzymes and don't wait to take them after the meal, I take them during the first few bites. I find that there are quite a few gluten-free digestive enzymes out there, but I also prefer the ones that are vegetarian. Many of them contain ox bile (or other animal bile) and that just does not go over too well with me.

I tested fine on the small bowel follow-thru tests, but that was just passing barium, NOT food! If they ran the tests with food and followed it through then they would notice a dramatic slowing of my digestive system. The enzymes help a lot though. I hope you are feeling better soon.

Mariann

[baggotlane]

Andrew,

Thanks for sharing your test results with us. I tested borderline on blood tests and the diet helped me feel better. It is hard not knowing 100% whether you have celiac, because for me, like now when my digestion isn't perfect, I start thinking maybe it was something else. I do feel better still though. I am vegetarian though and I find this diet very hard. I am feel like i AM wasting away. Not sure which is worse, but I do get very sick when I consume gluten, so for me there will be no gluten challenge.

I guess if I were you and I didn't feel better eating gluten-free and I had had all the tests done to rule it out, then I would just keep eating it. I mean what would the point be. Like others have said though, if you feel better not eating it, then don't eat it. My GI doctor did tell me that if a person has IBS, that the gluten-free diet will help with the symptoms.

HOpe you feel better and figure out what is going on.

Monica

Monica,

If you do not feel well fter glutenthen celiac disease may indeed be the cause. For me it is a little different. I get the bloating, diarrhea etc. no matter whether it is gluten or non-gluten food that I eat. Yes, as I said, I ate gluten foods for all those seven months and the 'good' news (if you can call it that) is that I felt no different than when I was gluten-free earlier last year. So, it is still searching time. Right now, I am on a course to eliminate H.pylori bacteria in the stomach following the recent endoscopy. We still don't know if getting rid of that will cure the problem but it is at least worth a try.

Andrew

[lindalee]

Why all the hostility ? I'm new here and I haven't been tested for celiac disease in any way, shape or form and the people here are not badgering me to get tested !!! Instead they have been very supportive. Most of them realize that the tests are inconclusive and taking the gluten challenge is really the only way for anyone to know if they can benefit from going gluten free. Lucky for me, I have been helped by going gluten free. Oats make me hyper, maybe they are making you hostile ? : )

Have you looked at your diet for other food allergies or sensitivities? I didn't realize the fact that soy milk caused excessive amounts of phlem in my throat that meant I should eliminate it. I also didn't realize that the fact that my bottom lip swelled slighty every time I ate ham, I should eleminate it. Or the fact that everytime I ate eggs and had horrible gas and bloating, and that I should stop eating them. I was taking meds for the symptoms like most people do. Duh !!

By the way, I had the Gastroparesis test. The report is negative, but my doctors can't decide if they agree with it since my stomach slows considerably after 40 minutes. I've also had an endoscopy, colonoscopy, an upper GI, gall bladder surgery and loads of lab work. I have a hiatal hernia, erosive gastritis, diverticulitis, IBS, etc. WHATEVER !!!! I just wanted the pain to stop ... My GI prescribed meds and gave me several diets to follow over the years, but never mention food allegies, food sensitivities or heaven forbid "celiac". Afterall, what good would I be to him if I wasn't in pain ???? Marcia

[Nancym]

I think the difference between celiac disease and gluten sensitivity is just that with one you have damage to your villi and with the other you don't. So if you're in the celiac disease category someone will tell you you're sick and you can get a firm diagnosis. The other category, you're on your own pretty much.

But I suspect they've got a lot in common with things like diabetes and other autoimmune conditions. However the general population of doctors don't recognize that yet. They will at some point, but we're probably a good 10-20 years from that point.