Can Gluten Sensitivity Go Away?

[basilicious]

I'm not convinced that my negative results are to be believed. However, assuming that they are correct, my doctors have told me that at a minimum I am highly sensitive to gluten.

Can anyone tell me whether gluten sensitivity can go away? My gluten intolerance has been preceded by a great deal of stress due to working full-time while in graduate school full-time. Therefore, one possibility in my mind is that my gut just needs some time to heal...and that after 3-6 months of being strictly gluten-free, I might be able to successfully reintroduce gluten into my diet.

Does anyone have any insight into whether that has worked for others?

Thank you very much for your help.

[Bubba's Mom]

It's my understanding that other things can cause damage to the intestine, like stress, SIBO, yeast overgrowth, etc., that can cause a "leaky gut" situation. Once the wall of the intestine is compromized things can leak out into your bloodstream and your body reacts to it.

Under those conditions, if the intestine heals, you may be fine with gluten.

I'm wondering if you had an endoscope done? Around 20-30% of people with Celiac have negative blood tests, but the scope tells if there is damage going on.

Also, a gene test can help see if you carry the genes that would make you more likely to have Celiac/gluten sensitivity.

Without knowing if all tests were run, and what your symptoms were/are it's hard to say if you can tolerate gluten later? Give it a few months, like you said and try it. If you react you'll know that you need to stay away from it.

Best wishes to you.

[RiceGuy]

Well, gluten intolerance does not go away, but if your sensitivity is not due to an immune response, I suppose there is a possibility that you might recover with time. However, I remain very skeptical of this, as I've never heard of it happening. In fact, many members of this board have stated that their gluten intolerance began with a stressful period or physical trauma. Others report that it began after an infection or other illness.

[Skylark]

Yes, reactions to wheat can go away. Leaky gut reactions to wheat-germ agglutinin and wheat allergies can come and go. You would probably be reacting to other foods if you had a lot of leaky gut trouble. Celiac and non-celiac gluten intolerance are generally lifelong and stress is a celiac trigger.

Riceguy, remember that we will not hear of people who regain their tolerance to wheat on this message board. They will leave the message board and go merrily on their way. This is a self-selected group of people who are mostly having a lot of GI trouble. There are even case studies in the biomedical literature of celiacs who have desensitized to wheat, though scientists are careful to call it a "return to latency". Someone with gluten intolerance regaining tolerance isn't even interesting enough to publish.

[Takala]

Did you get your genetic tests back yet ? If you fall into the category of "having the genes which pre dispose one to celiac or gluten sensitivity" would that change your attitude ?

Lifelong condition, yes, but the damage from gluten intolerance has to accumulate s l o w l y until it seems it is a sudden, overwhelming crisis situation of illness - ie, the perpetually fussy tummy turns into the massive Heartburn and fatty foods intolerance and alternating V/D/C. (puking, pooing, and plugged up ) But others of us got neuro symptoms or thyroid disease or arthritis- none of this happens overnight.

The only person whom I have heard of "recovering" was a person who was successfully treated for Lyme disease which had been the trigger of her celiac - have not seen this person post here in several years. I've seen a lot of people, some medically diagnosed by biopsy, really trying to come up with any excuse imaginable to not stick to the gluten free diet, and then try to blame the resulting illnesses on everything else.... they have to hit rock bottom a few more times, or they are having a lot of problems with side effects (sometimes from medications) which are screwing up their thought processes.

Those of us who are truly sensitive to gluten usually find out that over time (years...) we become more sensitive to cross contamination, not less, and therefore we don't have any desire to reintroduce gluten, because it makes us sick, quickly and decisively. But the leading researchers like Dr Fasano are saying that there are celiacs - and then there are the gluten intolerants (5 to 7% of the population !) for whom slight, low levels of cross contamination is not a big of an issue, once healed.... and the only way to know is to do genetic tests and then eat and see what happens....

The state of being "alive" in the world we have today, where the competent are expected to work 16 to 18 hour days to replenish debt and obligations, while eating food prepared en masse by commercial entities, is a "stress" trigger. Stepping back and allowing one's self to be less than perfect in all aspects (okay, so you aren't on Time Magazine's Cover as Person of the Year, but you can now shop and cook better than all your co- workers) is the key to surviving.

[RiceGuy]

Riceguy, remember that we will not hear of people who regain their tolerance to wheat on this message board. They will leave the message board and go merrily on their way. This is a self-selected group of people who are mostly having a lot of GI trouble.

My reading on the subject is by no means limited to this board. If you can post some links to valid sources of information showing that gluten intolerance can positively and completely resolve itself, please do.

There are even case studies in the biomedical literature of celiacs who have desensitized to wheat, though scientists are careful to call it a "return to latency". Someone with gluten intolerance regaining tolerance isn't even interesting enough to publish.

It sounds as if you're saying that when gluten intolerance does resolve, nobody who knows of it thinks it's worth publishing, and therefore we're not going to hear about it. Is that what you're suggesting, or have I misunderstood? I'd think it would be pretty big news, at least to researchers, as they'd want to understand the mechanism by which it occurred, in the hopes of finding a treatment or cure.

There is something known as the "honeymoon phase", in which symptoms seem to cease, and ingesting gluten doesn't cause a reaction. But it does not last, and inevitably the person begins experiencing symptoms again. Last I've read, the reasons for this is not known.

[chrissyinnj]

According to the author of Healthier without Wheat, who is a GI, as of the writing of his book, he states that there is no evidence that people with NCGS can ever introduce gluten into their diet safely again.

[Skylark]

It sounds as if you're saying that when gluten intolerance does resolve, nobody who knows of it thinks it's worth publishing, and therefore we're not going to hear about it. Is that what you're suggesting, or have I misunderstood?

Right. Food allergies and reactions come and go all the time, and I doubt most doctors and clinical researchers would find it remarkable if a gluten intolerance in someone who was not diagnosed with celiac disease resolved. Gluten intolerance may be a horse of a different color so to speak, but I don't think it's been characterized to the point where recovering from gluten intolerance would be seen as novel.

[mushroom]

Right. Food allergies and reactions come and go all the time, and I doubt most doctors and clinical researchers would find it remarkable if a gluten intolerance in someone who was not diagnosed with celiac disease resolved. Gluten intolerance may be a horse of a different color so to speak, but I don't think it's been characterized to the point where recovering from gluten intolerance would be seen as novel.

Wow! I would think of it as pretty novel. It was my understanding that research was heading more in the direction of gluten intolerance being part of the celiac spectrum, rather than the other way around. What have I been missing here??

[RiceGuy]

There are even case studies in the biomedical literature of celiacs who have desensitized to wheat, though scientists are careful to call it a "return to latency". Someone with gluten intolerance regaining tolerance isn't even interesting enough to publish.

I'd like to see some of those "case studies in the biomedical literature".

Right. Food allergies and reactions come and go all the time, and I doubt most doctors and clinical researchers would find it remarkable if a gluten intolerance in someone who was not diagnosed with celiac disease resolved. Gluten intolerance may be a horse of a different color so to speak, but I don't think it's been characterized to the point where recovering from gluten intolerance would be seen as novel.

Wait. Are you now differentiating between gluten intolerance and Celiac, saying that someone without Celiac who recovers from gluten intolerance wouldn't be seen as novel enough to publish, and does that mean you're suggesting that if someone who was diagnosed with Celiac Disease recovered, then it would be deemed worthy of publication? I'm not sure how this jives with your previous statement about "biomedical literature", quoted above. Again, I want to see those case studies you speak of, if they do in fact exist.

[Skylark]

I would normally offer links but I find myself disinclined to continue this discussion. You should find the research trivially easy to find in PubMed if you spend your time looking for it rather than trolling me.

Plonk.

[RiceGuy]

I would normally offer links but I find myself disinclined to continue this discussion. You should find the research trivially easy to find in PubMed if you spend your time looking for it rather than trolling me.

Plonk.

Pardon me, as I was not aware that simply asking for clarification of your statements would be considered "trolling" you. However, extraordinary claims require extraordinary evidence, and since it appeared that you possessed a certain level of knowledge on this topic, I'd hoped that you'd at least follow up rather than abruptly exiting. Especially if the research you speak of is so easily obtained.

Be that as it may, I did search PubMed, and found the following:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

According to the above articles, there have been a very small number of people who, after following a gluten-free diet for some time, were able to ingest gluten without symptoms of intolerance. However, whether the absence of symptoms is only temporary is not known. The basic conclusion is that such individuals would have to continue eating gluten, and be monitored long-term, in order to know if symptoms will return. In one of the studies, only one such individual was HLA-DQ2/DQ8 positive.

[IrishHeart]

I would like to remind members that it is expected that we reply politely and that challenging someone aggressively borders on rudeness. I refer you to the Board rules. Thanks.

Meanwhile....

the OP asked if gluten sensitivity can go away?

This is a broad spectrum, but I assume you are NOT talking about Celiac disease in this case?

Since a sensitivity and an intolerance to food proteins can be reversed--and there are people on this board who were once intolerant of dairy, soy, corn, etc. who report a resolution of their symptoms and a tolerance for it returning---why can't a sensitivity to gluten (in the absence of Celiac) also be possible?

Is there any evidence of that anywhere?

(and I do not mean medical articles that talk about lack of mucosal recovery in Celiac. )

[basilicious]

Thank you for the thoughtful replies. I have gone back and forth on the legitimacy of my negative celiac diagnosis, but my action plan is to get the genetic testing as well as testing for SIBO and hypochlorohydria and go strictly gluten free, as if I had celiac, for 3-6 months. Part of the problem has been that my neurological symptoms resolve almost entirely, and pretty quickly, once I'm off gluten, but I've experienced inconsistent resolution of my digestive symptoms, especially the bloating. It's hard to know if I should chalk it up to broader leaky gut syndrome -- i.e. not gluten-specific -- or if I could actually have undiagnosed celiac and am just experiencing the normal ups and downs of the healing process. I also haven't ruled out other food sensitivities and am going to resume my food journal. I'll be on a GFD for the next few months regardless, but if I don't have the genes, at least I will be less concerned with a false negative on my blood tests and biopsy, and I'll be less concerned about the auto-immune effects of cross-contamination. [Note: I did get the total serum IgA done last week, and I am not deficient (my result was 273 with a normal range being 68-378mg/dL). EMA IgA was also negative, but no range was given. My Vitamin D was astoundingly good at 50, with normal range being 30-89.]

Since I have tested negative for celiac and have no history of it in my family (my mom just got a negative blood test result last week), I'm inclined to accept the "diagnosis" that I am NCGI and then try to reintroduce gluten in a few months. However, if I have the genes, given that so little seems to be understood about NCGI, I will be left wondering if there's hope of its resolving at some point or if I should be just as vigilant about CC because NCGI may be a precursor to celiac after all...I will cross that bridge if and when I find out I have the genes. I will let you all know how my additional testing goes.

[IrishHeart]

Part of the problem has been that my neurological symptoms resolve almost entirely, and pretty quickly, once I'm off gluten, but I've experienced inconsistent resolution of my digestive symptoms, especially the bloating. It's hard to know if I should chalk it up to broader leaky gut syndrome -- i.e. not gluten-specific -- or if I could actually have undiagnosed celiac and am just experiencing the normal ups and downs of the healing process.

Since I have tested negative for celiac and have no history of it in my family (my mom just got a negative blood test result last week), I'm inclined to accept the "diagnosis" that I am NCGI and then try to reintroduce gluten in a few months. However, if I have the genes, given that so little seems to be understood about NCGI, I will be left wondering if there's hope of its resolving at some point or if I should be just as vigilant about CC because NCGI may be a precursor to celiac after all...I will cross that bridge if and when I find out I have the genes. I will let you all know how my additional testing goes.

WELL...this information sheds more light than just your original query!

Neurological issues ON gluten are more than a "sensitivity " to me. Some doctors believe that if you are NCGI, and do not adhere to a gluten-free diet, then, yes you will develop full-blown celiac if you are pre-disposed to it. (Some do not agree) My doctor thinks any inflammatory response from an intolerance will makes things worse.

But, he is young and more open-minded than the dinosaurs who do not even believe in NCGI and think celiac is "rare" .

It does not matter if you have NEG blood tests (I had NEG blood work) and some biopsies are falsely NEG, too. You could still have celiac.

Some celiacs do not have the associated "celiac genes" of DQ2 and DQ8--1-2% have other genes.

There are many holes in the diagnostic criteria.

Saying there is "no celiac in the family" just means no one has been DXed YET. Someone has to be "first". I know--in my large family, it's me! Now, others are seeing that their symptoms are gluten-related as well. Including my parents whose double DQ2 genes I carry. My Mom went gluten-free shortly after my DX, no questions asked. She saw how this thing nearly killed me. It's too late for my Dad, but he was a walking celiac if ever there was one.

You know your body best! Off gluten, the neuro symptoms resolve.

I would think you would never wish to have those return, yes?

Me neither. Mine were brutal.

You are covering all your bases!! Good for you. Keep us posted.

best wishes!

[basilicious]

WELL...this information sheds more light than just your original query!

Neurological issues ON gluten are more than a "sensitivity " to me. Some doctors believe that if you are NCGI, and do not adhere to a gluten-free diet, then, yes you will develop full-blown celiac if you are pre-disposed to it. (Some do not agree) My doctor thinks any inflammatory response from an intolerance will makes things worse.

But, he is young and more open-minded than the dinosaurs who do not even believe in NCGI and think celiac is "rare" .

It does not matter if you have NEG blood tests (I had NEG blood work) and some biopsies are falsely NEG, too. You could still have celiac.

Some celiacs do not have the associated "celiac genes" of DQ2 and DQ8--1-2% have other genes.

There are many holes in the diagnostic criteria.

Saying there is "no celiac in the family" just means no one has been DXed YET. Someone has to be "first". I know--in my large family, it's me! Now, others are seeing that their symptoms are gluten-related as well. Including my parents whose double DQ2 genes I carry. My Mom went gluten-free shortly after my DX, no questions asked. She saw how this thing nearly killed me. It's too late for my Dad, but he was a walking celiac if ever there was one.

You know your body best! Off gluten, the neuro symptoms resolve.

I would think you would never wish to have those return, yes?

Me neither. Mine were brutal.

You are covering all your bases!! Good for you. Keep us posted.

best wishes!

Thank you. This is all very stressful and confusing, but I'll try to take it one step at a time. This forum is extremely helpful, and I will be sure to let you know how things continue to evolve.

[IrishHeart]

Thank you. This is all very stressful and confusing, but I'll try to take it one step at a time. This forum is extremely helpful, and I will be sure to let you know how things continue to evolve.

One step at a time is a good approach.

Take care!

[basilicious]

I finally received my genetic testing results, which my doctor just emailed to me. Here they are for your interpretation:

HLA TYPING FOR CELIAC DISEASE [Final]

Diagnostic Test / Results:

HLA-DQB1/ 201

604

HLA-DQ2/ Positive

HLA-DQ8/ Negative

HLA-DQA1/ 1

5

Lab interpretation (on the results):

The patient has one of the HLA-DQ variants associated with celiac disease. More than 97% of celiac patients carry either

HLA-DQ2(DQA1*05/DQB1*02) or HLA-DQ8(DQA1*03/DQB1*0302)or both. However, 39% of the general U.S. population carry these HLA-DQ variants, as a consequence, the presence of HLA-DQ2 or DQ8 or both variants is not per se diagnostic of celiac disease.

My doctor said the following in her email when she sent the results:

"Hi- got back your genetic results- you are predisposed genetically for celiac disease. See attached. Not sure what to do with the information, but it seems that you either have celiac sprue or are very intolerant of it!"

I'm not terribly impressed with my doctor's interpretation since I already know I'm intolerant of celiac! Her sloppy email aside, does anyone have any insight into how I should handle these results? My hope was that I would not have the genes and thus could somewhat safely rule out a false negative on my blood tests and biopsy. (Recall from prior posts that the only "positive" I have received is a very high IgG reading -- value of 72 with a "positive" being anything above 25 -- but I was gluten light when I had the testing done.) Unfortunately, since I have the genes, I must continue to wrestle with the possibility of a false negative. My plan was to be strictly gluten-free for a few months and try to promote general gut healing -- in case it was a broader digestive problem -- and then to try to slowly reintroduce gluten in a few months. Although I'm hoping my body will be fine with gluten then, chances are it will reject gluten more violently than ever, so the end result could be the same - a gluten-free diet that avoids cc as if I had celiac... While I have been getting better about being gluten-free, I haven't been "celiac safe" with my eating, and I definitely got sick last week after carelessly using our gluteny toaster to make a gluten-free waffle...my weakest moment so far, in which I thought "well, I haven't been diagnosed; cc may not be as bad as I fear."

Thanks all! I appreciate any insight you can share while I hang out in limbo-land!

[Skylark]

I don't see any limbo here. I believe you are celiac.

You are wanting to think you're negative to blood, but I checked your old posts. Your positive test, gliadin peptide IgG, is 99% specific for celiac, not simple gluten intolerance. Gliadin peptide IgG is the most sensitive test, which is why the others were negative. It is still specific for celiac in people with normal total IgA. You even had enough antibodies that it even came up strongly positive gluten-lite. On top of positive bloodwork you are DQ2.5 and having strong reactions to gluten. You really can't trust the low-gluten biopsy.

I think you need to be on a strict celiac diet for your health and safety. You don't want to damage yourself to the point where you convert to fully positive serology and a positive biopsy!

[IrishHeart]

I did not know all the other circumstances regarding your testing (until I read Skylark's post above) and so, NOW I see what's going on and I agree with her.

I believe you have Celiac too! IMHO

I am not sure what your confusion is at all.

You cannot afford to be "gluten lite". Not at all!

You are one of us.

Time to dump the gluten entirely and get yourself a safe toaster.

Welcome to our world. It's a fun planet.

[basilicious]

Yes, I suppose I am confused. My GI has been so dismissive of the isolated IgG value, and my understanding was that it was less specific to celiac than IgA. Apparently I have missed some important information in my research - do you have any suggestions for where I can read more about the gliadin peptide IgG results. I did a quick search and found this link:

My link

It points to the diagnostic power of IgG anti-deamidated gliadin peptide antibody assays vs. anti-gliadin assays. The test I got was "Gliadin Peptide Ab, IgG"; is that testing for the former or the latter??

[Skylark]

Usually, "gliadin peptide" is the new IgG anti-deamidated gliadin. The old gliadin that is not very specific is usually labeled "anti-gliadin". You could check the website of the specific diagnostic lab (or phone them) to verify.

The link you have is a good study. Here are a few more.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link - 98% specificity for DGP IgG.

Your doctor may not be familiar with the literature demonstrating how sensitive and specific the test is, or she may have confused it with the old anti-gliadin.

[basilicious]

Thanks very much, Skylark, and you too, IrishHeart. I will confirm the type of test I had and will read what you've shared.

[Takala]

So you're a Q2....

Don't forget to get your own butter with that new toaster !

Some of us have a gluten free household, because it is easier to bake that to segregate.

[IrishHeart]

yup! true that, Takala....hubs went gluten-free with me, of his own accord, as he felt it easier & healthier. (As I believe him to be gluten- sensitive himself, I think it's best and was almost relieved I did not have to twist his arm. I can be verrry persuasive;)