Anybody Gone Back On Gluten For Biopsy?

[scottyfeelsick]

I know this question has probably been asked a hundred times, but I was looking for anybody's experience with trying this. Also let me know if this is in the wrong forum(I couldn't really tell where I should post it).

I tested positive with enterolab for gluten, and a very high number for malabsorption, and the dq-2 gene for celiac, all in mid march. I have been gluten free ever since.(about 2.5 months). I have been seeing an endocronologist for some gland/hormone problems(possibly related to gluten damage), and they refered me to a GI doc at the same hospital, who I saw today.(this is a very reputable hospital). The GI doc didn't believe in the enterolab testing. They think it is very likely that I have celiac, but they want to be sure and to also rule out other problems, they ordered a biopsy in 1 month and told me to eat gluten equal to at least 4-6 slices of bread a day until then.

Since going gluten free; this past week is the first time I have actually started to feel better in about a year. I was even thinking of trying to eat dairy again. But also, I have now been on 2 different hormone replacements for about a month.

When I told them I was finally starting to feel better and I was worried about having to start the healing process all over again, they were very sympathetic, but felt that this was something that was going to be for life, so it is kinda important to know for sure. Also, they would then know weather or not it is gluten that is the culprit causing all of the health problems that I have been getting for the last year, or, if they should keep looking elswhere.

I think I am going to try the gluten challenge. If I feel unbelievably bad right away, I think I will call it off and cancel my biopsy.

My questions are:

-Has anybody had any experience with going on gluten for only one month and getting a biopsy? How were

the results?

-Has anybody tried it and just gotten so sick that they stopped and gave it up? How quickly did it get really

bad?

-If I do try it and make it the full month, will I be able to heal quicker, or will I be sick for another 3 months

after the biopsy? (this is all of course if I really do have celiac)

Thanks alot for any insight or opinions that anybody might have, scotty.

[jesslynn555]

I have a few thoughts on this.

My son was dx with celiac from a positive blood test. He was on a gluten-free diet for 6 months but still wasn't as healthly as he should have been.

We were told that a biopsy was a good idea in his case sinse he wasn't responding as well to the diet as we had hoped. I have heard that a positive blood test and a positive response to a gluten-free diet is a sufficient diagnoses, but in our case that didn't happen.

He had a biopsy today after 4 weeks of being back on gluten. The procedure went really smooth and when we get the results back, we will know 100% that we are treating the right problem. The biospsy was much more thorough than a blood test because they were able to take pictures of his esophagus, stomach, and intestine. They checked his pancreatic enzymes. They tested him for lactose intollerance. They checked all his vitamin levels. They check for any infections. They did a RAST test for allergies. They checked for damage from HCl. Even more things that I can't recall at the moment.

Also, you may know for yourself that you do better off gluten. An EnteroLab test may be enough for you but it may not be enough for your insurance company. It may not be enough to write off your gluten-free food as a medical expense.

If you are doing great off gluten and you have no other concerns about your health, then it may not be worth the trouble.

Good luck with your decision.

[MELINE]

My questions are:

-Has anybody had any experience with going on gluten for only one month and getting a biopsy? How were

the results?

-Has anybody tried it and just gotten so sick that they stopped and gave it up? How quickly did it get really

bad?

-If I do try it and make it the full month, will I be able to heal quicker, or will I be sick for another 3 months

after the biopsy? (this is all of course if I really do have celiac)

Thanks alot for any insight or opinions that anybody might have, scotty.

Hello

check this article

"How long do I need to be eating gluten before I am tested for celiac disease?

This is not an easy question to answer. Most people believe, or are told that they need to eat gluten for a few days (or up to a week) before a blood test or a biopsy, and this is incorrect. The true answer depends on how long the individual has been avoiding gluten. How much gluten to eat depends on the age of the individual who is being tested. The information provided here is a general rule, there are many specifics that come into play, so its best to talk with a knowledgable physician about your particular situation.

First: If a patient has avoided gluten for six to 12 months (or more) it is advisable to consider an HLA gene test before a gluten challenge. The HLA gene test will help determine if the patient is even in the risk group for celiac disease. (Only 1/3 of the US population have the genes for celiac disease.) After 6-12 months, it can be difficult to obtain a diagnosis of celiac disease after a gluten challenge, which is why this step is advisable.

Patients who have been on a gluten free diet for less than six months can consider a gluten challenge under a physician's supervision. A challenge would typically require an adult or a child to eat some gluten for four to eight weeks. For some, a twelve week challenge could be required but no challenge should last more than 12 weeks in children. The patient would eat a specified amount of gluten every day.

Many patients are concerned about participating in a challenge. Medical research shows that a limited challenge of this sort provides a greater medical benefit when it leads to a correct diagnosis of celiac disease. The challenge would need to be maintained if a positive antibody test result is received, because the biopsy procedure also depends on the presence of an autoimmune response.

For children, eating a saltine cracker each day would be enough gluten to conduct a challenge and for adults, a slice of bread a day would be adequate. The challenge would need to occur for six to eight weeks before the test in order for it to be accurate. Accordingly, we will not be able to register individuals for the screening who cannot meet this criteria, should they wish to be tested after following the diet.

me I could not stand going back to gluten for more than 3 days and I started headaches, ekzema,feeling exhausted, nightmares and tingling in my toes. My biopsy was negaive, but I was almost 5 months gluten free.And I healed immediately after stopping it again. I think it just took me 2 days to go back to normal

[scottyfeelsick]

jesslynn555, thanks so much for your response. I really appreciate it. It sounds like maybe the four weeks, is kinda standard for being back on gluten.? Could I ask you a couple more questions about the process your son went through?

How did the month back on gluten go? Did he get really sick right away? did he feel really bad throughout the whole four weeks? did his symptoms get alot worse?

Also I am really interested in all of those other tests that you had done. Were they all done during the same procedure? and did you have to ask ahead of time to have things like lactose and other food allergies tested as well?

thanks again for your thoughts on this, scotty.

[aikiducky]

My experience with a gluten challenge lasted exactly one day, I got so sick that I just couldn't go on with it. so I'm gluten free but undiagnosed, for three and a half years now. But I've also read about a lot of people here who did do the challenge, got somewhat sick but not too unbearable. It's a gamble and really you'll only know by trying.

It's a tough decision to make, good luck.

Pauliina

[JustCan]

I did the gluten challenge for about four weeks after being gluten free for about 3 months. I kicked it off with pizza and was really sick by later that night. The four weeks were hell for me to the point that I had to work from home towards the end because I was too sick to go to the office. My biopsy ended up being negative but the doctor did say he saw some inflammation and to stay on the gluten free diet if it makes me feel better. But, really, I'll never know since I had already been gluten free. I started to feel better about 3 days after I went back to being gluten free and I have now been gluten free for almost a year. I'm not officially diagnosed but I will never go back to eating it. If nothing else, the gluten challenge definitely confirmed that gluten is poison for me. All that said, everybody's different. At the time I felt like I needed that formal diagnosis and was willing to go through that. Looking back, I should have gone with my gut (no pun intended) and just stayed gluten free. Good luck to you!

[ravenwoodglass]

I was talked into a gluten challenge by my GI after having a very postive outcome with a physican assisted elimination diet. I do not show up on blood work. On the day of my biopsy I was laying on the floor of my bathroom too sick to even make it to the appointment. I got my 'official diagnosis' at that point, but it was at a very high cost. Nothing would ever make me challenge again.

The decision to challenge or not is up to the individual, not everyone has the horrible outcome I did. Personally with the high chance of false negatives on biopsy if I had a positive response to the diet and a positive Enterolab finding I would skip the biopsy for confirmation. It is a personal choice though and your idea to do the challenge but stop if you react is not a bad one if you are comfortable with it.

[nora-n]

I was back on gluten for five weeks. and it was not so hard for me.

But some days after the biopsy, six weeks after start, the symptoms hit me, I had some difficulties knowing where my feet were (neurological symptoms) , and also my skin hurt and burned but it had started befoer the six week mark I think (burning is typical for DH and it had stopped while eating gluten-free) and all the time on gluten my intestines and my butt kinda burnt. I had had slight slight bleeding on the toilet paper before and it startet to return.

Interestingly, the reacommendations are for at least six weeks on gluten and I think I should have een longer back on gluten, or continued and had another biopsy and more blood tests.

Instead the doctors said they proved I had no celiac since the biopsy was negative.

https://www.celiac.com/articles/979/1/Chall...-EdD/Page1.html

https://www.celiac.com/articles/12/1/How-lo...gful/Page1.html

Open Original Shared Link here it says it takes six weeks to six years.

nora

[IMWalt]

My questions are:

-Has anybody had any experience with going on gluten for only one month and getting a biopsy? How were

the results?

-Has anybody tried it and just gotten so sick that they stopped and gave it up? How quickly did it get really

bad?

-If I do try it and make it the full month, will I be able to heal quicker, or will I be sick for another 3 months

after the biopsy? (this is all of course if I really do have celiac)

Thanks alot for any insight or opinions that anybody might have, scotty.

I find this a very interesting thread. My daughter was tested a few years ago with negative biopsy and positive blood. In January of this year I finally grew tired of constant cramps, gas, and intermittant diarrhea. I also had very low RBC counts the last two years, which concerned me since I am a serious marathon runner. So, I went on a gluten free diet, and the cramps, etc. disappeared the next day. I made an appointment with my daughter's GI which was 5 weeks later. So, by the time of my appt I had been gluten free for over 5 weeks.

The GI advised me to start eating gluten again for 4 weeks, and then get blood work, which I did. The blood work was negative. However, after that I was doing research and discovered that a person should be eating quite a bit of gluten during this time. The GI just said to eat gluten, not how much. I was just eating my normal diet, which is mainly lean meats, fruits and vegetables with an occasional muffin or toast. On days when I did eat a waffle, bagel, or toast, I had cramps and gas. After I read that about eating a lot of gluten, I started eating some at each meal. Of course, my symptoms got worse. I had my biopsy after about 2 weeks of this, and I just got the results. He said I had mild gastritis, but was negative for celiac. Since the day of the biopsy I have been eating gluten-free, but a couple times since then I have eaten some, just to see what happens. The first two times I had diarrhea, and last night after a bagel I had cramps and gas.

Bottom line is that whatever you want to call it, I seem to have a problem with gluten, test results notwithstanding. This is all very confusing to me, since I was looking for some concrete evidence so I could eat gluten-free without feeling like a hypochondriac. All I know is I feel better when I don't eat it.

Walt

BTW - when I started eating gluten again, it took a while for my symptoms to get as bad as they were previously. It seems that in the 5 weeks I was eating gluten-free, I healed enough so that I could handle it for a while. By the end of my 6 weeks of eating it again, my symptoms were almost as bad as before.

[IMWalt]

https://www.celiac.com/articles/12/1/How-lo...gful/Page1.html

Wow. If my math is correct, this research suggests that I should have been eating 6-10 slices of bread per day. I may have had that much total in the 4 weeks before my blood work. I wish I had known this before. Of course, if I had eaten that much, I might have given up before the test. As it was I was growing tired of the constant churning in my intestines.

Walt

[scottyfeelsick]

Thanks so much to everybody that has responded. All of this info really helps me, especially knowing that other people have tried this before.

IMWalt, thanks for your reply. I also am a bit of an athlete, and always have been for all my life, so I feel like I need to know for sure what is causing all of the problems with my blood(low wbc, low rbc, low htc, low hgb, etc.) and my glands. If I can't be really active I always get really depressed and down in general. I have always been like this, I need to be physicaly active to thrive I feel.

My main reason for wanting the official dx is that my endocronologist doesn't really take the enterolab results seriously, so he doesn't really talk about the possibility of my gland problems being related to anything to do with gluten, and I feel like we need to know what caused all this stuff to be able to treat it in the best manner. I see the Endo for newly aquired very low testosterone levels as well as thyroid levels, Which is pretty out of place very a very active, fit and (formerly)healthy male in their late twenties. He is the one who sent me to see the GI doc at the same hospital. Maybe that helps people see my delema.

Also, what I think I am gathering, is that a lot of people tend to heel up relativly quick after being back on gluten for only a month or so. Quicker than the first time off of gluten anyway.

thanks again for everybody that has helped me out with all of this, scotty.

[Ursa Major]

Even though some people seem to be healing quickly after doing a gluten challenge, others here got extremely sick and developed some permanent damage as a result. It is very risky to go back on gluten after being gluten-free for several months and could even result in developing other autoimmune diseases.

After five months gluten-free one month on gluten may not be enough to destroy your villi again to the point of being positive on tests. It may take more like three to six months of eating at least four slices of bread a day, and for many even that wouldn't be enough.

If you really have celiac disease and had damaged or even destroyed villi before you went on the gluten-free diet and they are now healed, it would be insanity to now go and destroy them again, just to prove that you shouldn't eat gluten.

If you find that you feel better without gluten, then gluten is a problem for you. If you aren't getting completely better on a gluten-free diet, then it is obvious that gluten isn't your only problem. Rather than trying to prove that gluten is indeed a problem, you should concentrate on figuring out what ELSE is making you sick.

In that sense, a biopsy may not be a bad idea to see what is going on in there OTHER than celiac disease. Meaning, I would advise to have tests done to find out what is going on without the insanity of a gluten challenge first.

After figuring out that gluten is a huge problem for me, I told my doctor (who failed me miserably) that I had no intentions of going back on gluten for testing. I know what gluten does to me, and I will absolutely not go back on it just to possibly get negative test results. It might kill me.

[scottyfeelsick]

nora_n, thanks for those links, I read everything on there and I have really learned alot. I was wondering about the "rectal gluten challenge" that it talks about in the first link you posted:

https://www.celiac.com/articles/979/1/Chall...-EdD/Page1.html

Do you or anybody else know more about this? I searched on-line and I found out about the procedure itself, but I was trying to find out if this was considered an official dx of celiac, or is this just a confirmation of "gluten intolerance" like the enterolab tests? I am curious about this test, because I would not need to go back on gluten for the test. I am trying to find out though, if it would be considered an "official diagnosis" of celiac, so I could show my doctor the results and I wouldn't have to do the gluten challenge.(if I come up positive for celiac that is)

Thanks again for all the help. Any ideas on this would be greatly appreciated. scotty.

[nora-n]

I have only read about the rectal gluten challenge in research.

They alre also researching the three-day gluten challenge where they look for freshly activated T cells.

Open Original Shared Link it is listed somewhere on the page, but not on top.

"An alternative strategy has been developed by Anderson et al, and uses peripheral blood from coeliac subjects drawn after oral gluten challenge.91 In individuals following a gluten free diet for a minimum of two weeks, peripheral blood T cell responses can be reliably detected within a window of three days to two weeks after in vivo oral bread challenge.92 That these T cells are HLA-DQ2 restricted and express gut homing molecules strongly suggests the assay is detecting freshly activated cells recirculating via the thoracic duct (fig 3) and might provide a more accurate picture of the in vivo response to wheat gluten. This method has been used with a library of peptides to "map" toxic wheat sequences,91 and due to the high throughput nature offers the possibility of exhaustive screening of all grains for potentially toxic peptide sequences in coeliac disease.93 Interestingly, results from both peripheral blood and intestinal T cell clone methods identified the same key sequence (PQPELPY) later shown to directly bind to HLA-DQ2 (fig 4).80,87,91 Responses to this sequence were found in the peripheral blood of 50/57 tested coeliac subjects (but not healthy controls) after in vivo gluten challenge and represented 50% of the total wheat gliadin response.92 Other work has shown that in vivo intraduodenal administration of a peptide containing this sequence can exacerbate coeliac disease.94 Further assessment of other wheat, rye, and barley sequences will be necessary but it would appear that a few key "dominant" peptide epitopes critical for coeliac disease development can be identified with promise for immunotherapies and modified grains. "

nora

[home-based-mom]

Scotty, I have no biopsy experience, but from what I read, the tissue they extract for examination is literally hit and miss, which means you might have areas of severe damage and have all of them missed. Pretty sad commentary on the gold standard for an official diagnoses, IMO.

That's one of the reasons why I am so intrigued by the pill cam, which takes lots and lots of photos, and if there is any damage, there will be a photo of it for your files and posterity! See if you can talk your doctor into that, whether you do the challenge or not.

[nora-n]

I agree on the pill cam.

On the ohter hand, the pathologist reading the slide can be useless. And I read somewhere that the very first part of the duodenum is always involved in patchy celiac but I have only read one abstract about that one. Teh doctor doing the scope might miss that part.

I know about someone who finally got a diagnosis after paying privately for a pillcam and it showed clearly celiac.

[scottyfeelsick]

Nora_n, thanks so much for all of your replies, it really helps me out alot, and If you are still reading this thread ever, I had another quick question for you.

In your signature, you say that you had a negative biopsy but then you were officially diagnosed by DD. What does DD mean? Is that a type of test or something?

I have never heard of the pillcam, but I looked it up and it seems really good, but my doctor never mentioned anything like that, so I don't think they do that at the hospital that I go to, or I feel they would have at least mentioned it. I go to OHSU if anybody has any info on that by chance.

Also, has anybody, that still reads this thread, done the gluten challenge and not had any symptoms for a while, like a few days or anything? I'm over 24 hours into it and I feel great.(I only first started feeling good about a week ago for the first time in about a year( I was gluten free 2.5 months before gluten challenge)). I have had a bit of gas, which is VERY abnormal for me accept for the last year of eating gluten, but only a little bit, and I am not feeling fatigued at all. I feel like I did the day before the challenge. Can it take a while to show symptoms? I hear about people doubled over in pain and explosive D within hours of reintroducing gluten.

Anyway, thanks so much to everybody that has helped me out on this topic, I really appreciate it. scotty.

[nora-n]

Hi, DD in forum slang means Dear Daughter, and they can add 1 or 2 or 3, according to age. This was DD2 but I didt mention it........

I do not have a dianosis but I am gluten-and milk-free, and my ssecond daughter has an official diagnosis.

To add, my skin biopsy has turned out negative and I am gonna fix that in my siggie. The doctor phoned me and he is taking another biopsy this time during an outbreak. I have not planned any outbreak yet.....but if I need to I will have to eat gluten for a day just to rovoke an outbrreak of Dermatitis Herpetiformis (for what DH stands here, on othe forums it means Dear Husband)

The pill cam itself costs some money and they are trying to make it the standard procedure for diagnosing crohns etc, but they are not considering it for celiac but it works jus well for celiac according to patient reports.

I am in Europe and I think paying privately for pillcam and consultations cost that person who posted about 1500 dollars in total. I think that is way less than you in US have to pay for consultations and a normal upper endoscopy alone. I think I have read 4000 dollars here (if you pay for it all).

nora

[bakinghomesteader]

I did a gluten challange for about 6 weeks. My husband wanted to know for sure, and so did I. At first, it was ok. I ate it with no problems. But, after about 3-4 weeks the symptoms came back. This time there was a new one, dizziness. My bloodwork came back postive. I am just recently gluten free again, but the symptoms were more intense this time. I had been gluten free for 9 mos prior to eating it for 6 weeks. I'm glad I know, but I don't ever want to do that again!!!!

[nora-n]

They never bothered to take s more blood tests after my gluten challenge. After six weeks I noticed I could not really feel where my feet were anymore so I stopped eating gluten. The burning in the skin disappeared again and the other symptoms and after seven months the severe fatiggue lifted.

nora

[scottyfeelsick]

I did a gluten challange for about 6 weeks. My husband wanted to know for sure, and so did I. At first, it was ok. I ate it with no problems. But, after about 3-4 weeks the symptoms came back. This time there was a new one, dizziness. My bloodwork came back postive. I am just recently gluten free again, but the symptoms were more intense this time. I had been gluten free for 9 mos prior to eating it for 6 weeks. I'm glad I know, but I don't ever want to do that again!!!!

Thnaks alot for telling me your story, I am about 4 days back on gluten now and still feeling good exept for some gas(which is very uncharacteristic for me).

Have you started feeling better again? If so, how long after going gluten free after the "challenge" before you startd feeling better again? Was it quicker than the first time that you went gluten free?

Thanks alot for all of everybodys replies, scotty.

[bakinghomesteader]

I stopped all the way Saturday. I feel a little better, but I am still tired and bloated. Since I am not absorbing nutrients very well, I guess that's why, plus I'm a little depressed that now I know. I really have to be careful. But, I'm a little happy too now that I know positively. It's just that I don't have any money for the superfine rice flour. But, I'll survive.

I hope you get answers.

[AndrewNYC]

Why don't you tell your doctor to try a 6 week trial with the poison of his choice? This is a stupid idea. If you got better when you stopped eating gluten, and you get sick when you eat gluten again that should be enough of an answer for you. The biopsy is a 50/50 shot no matter what you do and its not worth wreaking havoc on your body. People whose stomach's were completely wrecked by gluten have had negative biopsies.