Back On Gluten For The Biopsy..i May Die

[Janie*]

Hello All--first want to say that although I've only posted once, I log on often just to browse. I am so happy to have found a group of intellignet and articulate people who understand what I am going through.

I have been gluten-free for about three years after being diagnosed with Celiac. I was diagnosed based on my symptoms (rapid weight loss, anemia, bloating, pain after every meal, etc) and a serum test. The doctor just told me "oh, you don't need a biopsy, this is really no big deal anyway, you just can't eat bread anymore." Needless to say, I educated myself on the disease and was very healthy for 2 1/2 years.

I recently started getting sick again (while on a gluten free diet) with the same and additional symptoms. Long story short, I went to a Celiac specialist who has scheduled a biopsy for a month from now. She has also urged me to go back on gluten to re-damage my villi for the test. I have been on gluten for about a week and I am so sick. She ran the DNA test which came back positive, but even after that told me to stay on the gluten. I want to, because her concern (and mine) is that I have something more or less serious and that is why I have been really sick recently, despite being on a gluten-free diet.

I guess I am committed to eating gluten for another month. I know that I don't need a piece of paper to tell me that gluten makes me sick, but I would really like to get to the bottom of my health issues. Anyone have any suggestions to relieve my temporary suffering caused by gluten? Has anyone elso opted to do this? Do you think a month is even enough time to re-damage my stomach visabley? Any hlep would be appreciated. Thank you all

[aikiducky]

Welcome on the forum!

I don't quite understand the logic of this. If you suspect that something else on top of celiac is going on, wouldn't it be better to stay gluten free, so that the results of the gluten aggravation don't get mixed up with whatever else is going on? If you eat gluten again, any damage that you'll find can be explained by the gluten intake, no? And if you were having symptoms while gluten free, that would mean that being gluten free didn't have an effect on the something else thats maybe going on, so it also should show up on tests even if you are gluten free.

Just a different point of view to consider.

Pauliina

[Ursa Major]

Janie, Pauliina has a point there. Another one is, that after being gluten-free for three years, one month of eating gluten will not result in a positive biopsy for celiac disease. It would have to be at least three to six months (for some people it would have to be more like a year) of eating at least four slices of bread a day to destroy your villi again.

And that's it, it would destroy your villi, and could result in permanent damage that could wreck your health for the rest of your life. A truly terrible idea.

It would make much more sense to stay on the gluten-free diet, and find out what else is going on. Because obviously, eating gluten again is really making you sick. Meaning that gluten is a definite problem for you, no new tests needed to confirm that fact.

Also, if originally your bloodwork came back positive, and it is confirmed that you have the celiac disease genes, along with the dietary evidence is all the evidence you need for a firm celiac disease diagnosis.

I personally believe that you have developed intolerances to other foods besides gluten. You would do better going to an allergist or a doctor who tests for food intolerances, and not bother with that ignorant GI.

[Felidae]

In addition to what the above posters said, you usually require three months of eating gluten every day to get an accurate biopsy. If you have a celiac diagnosis already, you shouldn't really be eating gluten. I hope you get through the next month without too much pain and good luck.

[wowzer]

I don't get the logic of eating gluten when you are a celiac. It is poison to you body. I don't think it is worth the suffering. It sounds to me like you have something else going on. I would definitely find a better way than eating gluten. I wish you luck. Keep us posted. Wendy

[key]

Janie,

Welcome to the board. I understand how you feel. I too went gluten free and then 2 months later had the blood tests and they were borderline positive for celiac disease. AT first I felt SO great and things got better. THat was like 18 months ago and for the past year I have struggled on and off with stomach problems. I think I am very careful to not get gluten and my blood tests were completely normal now. I had a different GI doctor review my old tests and he thinks i definitely have celiac disease, but I finally had the endoscopy and colonoscopy this past week. He never recommended that I start eating gluten again though. He wants to know what my body is doing right now and if I am somehow getting gluten. I read somewhere that a person with celiac disease can continue to have IBS-like symptoms, fatigue, osteoporosis, etc. even after being on a gluten free diet. THe article stated how alot of companies say that foods don't have gluten, but it is possible to be getting hidden gluten. I really don't know with myself what is going on. I hope you can survive being on gluten a month. I think it would probably kill me. My family though has been doubting whether I have celiac disease and accusing me of anorexia, etc. because I have been unable to hardly eat.

This doctor is very understanding and I hope to get to the bottom of what is going on. I started back on Lexapro to hopefully help I am drinking Ensure and taking Nexium. I am able to eat a bit more then I have been able to for the past month. It is very frustrating, so I understand what you are going through. I would ask the doctor for some meds to help you get through the next month. I hope a month is long enough to get damage that is noticeable. I haven't heard yet about my biopsies. I also just had my first Iron infusion yesterday for extremely low iron levels. I am hoping that helps me feel better.

Take care!!!

Monica

[Rachel--24]

It would make much more sense to stay on the gluten-free diet, and find out what else is going on. Because obviously, eating gluten again is really making you sick. Meaning that gluten is a definite problem for you, no new tests needed to confirm that fact.

I agree with whats already been said. Going back on gluten isnt going to help you figure out what else is going on. You already know gluten is a problem and you are only making your situation worse by consuming it and causing more harm to your body.

The biopsy will likely be negative after only one month of eating gluten. Even if it were positive it would only confirm what you already know....you would still have unanswered questions as far as what else is going on with your health.

[Janie*]

I appreciate everyones opinion. It was a difficult decision to make but I know myself and I want to be 100% sure that I actually have Celiac (can you tell I am a die-hard pragmatist?). I have done an elimination diet and had other tests done and I am tired of not knowing. If it is something less/more serious I want to know, and I trust this doctor. The good thing is I will NEVER be tempted to cheat after this month! thanks again for your opinions and concerns, I'll keep you 'posted'

[Mtndog]

Welcome Janie!

I have been in a similar position as you. I was diagnosed by positive dietary response, slightly elevated bloodwork initially. I went gluten-free for 2 months before my biopsy, back on gluten for 10 days (what a joke- it didn't damage a thing but made me sooooooo sick).

I don't understand why, if you have a positive dietary response, bloodwork and DNA testing that it's not a confirmed diagnosis. Especially since you got so sick.

I would seek a second opinion. Really.

[CMCM]

Good grief, what is this doctor thinking? Your celiac situation has been established....how on earth could provoking intestinal damage AGAIN lead to diagnosis of other sensitivities? Remember that you will be damaging tissue and organs as well as the villi damage. This is idiotic.

Have you been tested for casein intolerance? In addition to the celiac/gluten problem,, I learned I was also casein intolerant (no surprise to me!!). Eating dairy can affect me just as much as gluten, and can make me just as sick with the same types of symptoms. Accordiing to Dr. Fine at Enterolab, if you are intolerant to casein, eating dairy can do just as much damage internally as eating gluten. Or you might be intolerant to other common things such as egg, soy, etc. If I were you, I'd go in the direction of trying to figure out what your other intolerances are. Then eliminate those foods to see what happens. It just seems idiotic and invasive to deliberately makie yourself sick again and get another costly and invasive biopsy to check out a condition triggered by eating gluten again. How on earth could that show you have a problem with other foods?????

My advice would be to stay off gluten and get the Enterolab sensitivity tests for the other substances they test....not all that expensive, easy to do, and it's a good start. Remember that most doctors don't know a lot about this stuff....and many times they are groping in the dark for solutions based on what little they do know. As I said before, what your doctor suggests doing makes NO SENSE.

[rez]

I think the key here is that Janie is off gluten and she still isn't getting any better. She feels that she needs to know and I can understand that. It sounds like you have a great doctor. There are several complications that can go along with Celiac and I think it is very smart to look deeper. Good luck and ask your doctor for some medication to ease the pain. My son was given some prescription meds to help during his gluten challenge. Good luck and you have my support and empathy. I know this must be really hard for you and I hope you get the answers you need.

[mama23]

Are you SURE you are gluten-free???

I went off of gluten and drastically improved.. then the last many months I have gotten sicker and sicker, with some original symptoms of gluten but no stomach pain. I finally discovered there was wheat protein in my shampoo and conditioner! Within 3 days of being off of it...so to speak I feel a million times better.

I just thought I would post that in case in may help you.

[Guest cassidy]

When you were totally gluten-free and started having symptoms again, assuming that you weren't getting any gluten, then I would think those symptoms would be due to something else. So, going back on gluten to prove that you have a problem with gluten and then going off of it I wouldn't think would change these new symptoms. If there is something else wrong then testing for that particular problem shouldn't be affected by whether or not you are eating gluten. This sounds like the doctor is trying to start at square one to figure things out and isn't accepting that you have celiac and that doesn't need to be challenged again.

Since you did so well for so long on the diet, you know it works for you. Did anything change? Any new food intolerances? Have you looked into candida? There could be many reasons you are not feeling well but unless you are somehow getting gluten into your diet, why would they have anything to do with gluten?

I never had a biopsy and I was told to go back on gluten to get a biopsy. I said that is crazy and there is no way I would ever make myself feel that bad on purpose for a test. Since your first doctor didn't really help you in figuring this out, I think you may realize that something you have to be your own champion and even though it is a doctor recommending something, it isn't always a good idea.

I would go gluten-free again and play detective trying to figure out what changed when you started getting sick again, keeping a food diary and seeing if you can see a pattern, checking any new products and starting to eliminate foods to see what helps. What are your symptoms now?

[gfp]

I appreciate everyones opinion. It was a difficult decision to make but I know myself and I want to be 100% sure that I actually have Celiac (can you tell I am a die-hard pragmatist?). I have done an elimination diet and had other tests done and I am tired of not knowing. If it is something less/more serious I want to know, and I trust this doctor. The good thing is I will NEVER be tempted to cheat after this month! thanks again for your opinions and concerns, I'll keep you 'posted'

Janie, please just stop and consider this....

The biopsy is not 100% accurate, even for long term gluten consumption, neither is it definitive. The biopsy can detect other things (like the big C) etc. but it cannot give a absolute negative for celiac disease and that's if we take a very narrow definition of celiac disease.

Your villi do not dissapear overnight, you don't wake up one morning and they are gone fropm the night before but they are gradually and incrementally destroyed while at the same time fighting back and trying to regrow...

Our villi are detroyed and regrow all the time like every other cell in the body but they are not designed to regrow at this rate.

Imagine celiac disease is like this... your body has spent years fighting back and making new villi (like 3 steps forwards but 2 back) while they are being destroyed such that a biopsy would prove negative then because of age,stress, pregnancy, illness etc. your body gets a setback... then your body is taking 2 steps forwards and 3 back... and the villi are destroyed faster than they can repair.

Anyway... the repair itself is very bad.... the cells are not designed to repliacte that fast and the more they replicate the more the replication can go wrong. One of the things that happens when cell replication goes wrong is cancer.

Your post is intellegently written so the best thing is you answer this for yourself,

So consider the following question .. what do you call someone who is currently damaging their villi almost as fast as they are repaired but not quite? The damage is still being done but its repairing that part....

The bottom line is do you call that person a celiac or not?

The fact is that if they get ill then their body regeneration falls slightly they will tip over the balance but equally they might just get older gradually as the bodies self repair slows down... indeed one of the few definates in life is we get older (or die).

The second problem is that the biopsy is a self defeating test.... as far as celiac disease.

If you define a celiac as someone who has a positive biopsy then if you stop eating gluten, your villi repair then you are only a celaic until you get a negative biopsy. This really doesn't make sense apart from being able to pigeon hole

people/patients. As has been said before you are either celiac or not... the biopsy only measures one phase of this.

By analogy, you are still pregnant before you do a home test and still pregnant until a MD's test... all you got is increased knowledge and certainty of your position but it didn't change the binary state change of +/- ve.

think the key here is that Janie is off gluten and she still isn't getting any better. She feels that she needs to know and I can understand that. It sounds like you have a great doctor. There are several complications that can go along with Celiac and I think it is very smart to look deeper

Respectfully that is not what she said....

I have been gluten-free for about three years after being diagnosed with Celiac. I was diagnosed based on my symptoms (rapid weight loss, anemia, bloating, pain after every meal, etc) and a serum test. The doctor just told me "oh, you don't need a biopsy, this is really no big deal anyway, you just can't eat bread anymore." Needless to say, I educated myself on the disease and was very healthy for 2 1/2 years.

What she is saying is lately she has been ill.

secondly and just as importantly

There are several complications that can go along with Celiac

Yes there are and continuing to eat gluten is the most likely way for these to develop....

Several people here have already offered good advice... and I would urge Janie to consider this.

As I described above we all get older and as we do our bodies regeneration slows.... additionally many of us here find we become increasingly intolerant to gluten the longer we are gluten-free.

As a graphic example... a smoker can smoke 40-60 cigarettes a day ... the amount of toxins is the same as a non smoker but sit a non smoker down with 40-60 cigs and ask them to smoke them in a day ... taking an 18 hour day that's a cigarette every 15-20 mins... the non smoker is likely to vomit long before they finish the first packet yet the smoker does it everyday...

Our bodies have an amazing ability to process out toxins but this doesn't mean the toxins are not causing harm...

The two suggestions so far are that Janie has developed increased sensitivity and/or additional sensitivities.

Both of these are likely and both of these happen... the third thing could be something competely unrelated.

For the increased sensitivity there are several pathways to explore...

These include:

CC, perhaps buying from a different place or eating elsewhere....

something in her "safe list" which is contaminated, many of us tend to develop our fall back gluten-free stuff... for a long time I was eating a brand of tortilla chips... and because they were firmly on my safe list I never considered them when I kept getting ill.

Cosmetics/shampoos or industrial products, something as silly as your workplace changing cleaning products or soap ...

For increased sensitivity as mentioned soy, egg, dairy all seem to develop with a much higher incidence in celiacs.

However one test/solution for both of these is to redefine your meaning of gluten-free.

Go back for 1-2 months to completely 100% safe foods... and in most cases this means making the foods yourself...from ingredients that can't be contaminated. I mean no packets etc. just fresh vegetables, legumes and washed meats/fish...

This is really hard... but you just don't know where contamination can come from... I buy all my meat at a butcher and they recently changed their shop around... unbeknownst to me they changed their prep area and now they have pastires etc. in the same area ... aftewr getting sick I took back a piece of meat with a crumb and asked how its possible... the answer was more or less "who cares its only a bit of pastry".... this is a very respectable butcher... they just don't get it...

At the same time switch cosmetics, shampoos etc. stay away from "debatable" items like liquors etc. and then hopefully you will see the same improvement you made before... if not then something else is wrong if you are 100% certain about your diet and contamination.

[Nancym]

It can take years to get the villi damaged again once you've healed up. Well, it sounds like your mind is made up. Good luck!

I think there's more than just gluten sensitivity that makes us sick. You've really got to go on an elimination diet and try to narrow it down more. You might need to give up Casein (dairy), corn, hard to say. I don't disagree with having your doctor "look" for other problems but going back on gluten for a biopsy is probably just a waste of time. You won't have been on it long enough to damage the villi most likely.

[gfp]

It can take years to get the villi damaged again once you've healed up. Well, it sounds like your mind is made up. Good luck!

I think there's more than just gluten sensitivity that makes us sick. You've really got to go on an elimination diet and try to narrow it down more. You might need to give up Casein (dairy), corn, hard to say. I don't disagree with having your doctor "look" for other problems but going back on gluten for a biopsy is probably just a waste of time. You won't have been on it long enough to damage the villi most likely.

It might be more than a waste of time....

Inded the MD mighht decide she is not celaic based on that biopsy, even though she didn't have time and from a personal perspective what will it tell you if its negative? Either you need to eat more gluten for longer and then test again or you are going to accept the test even though its invalid?

What I forgot to mention before is if the probelm is from something else then going off a gluten free diet will make this harder for the MD to determine.

I can't think how going on gluten will help identify something other than gluten intolerance but I can think of plenty of ways it can mess up other results and tests.

[Rachel--24]

I have been on gluten for about a week and I am so sick. She ran the DNA test which came back positive, but even after that told me to stay on the gluten. I want to, because her concern (and mine) is that I have something more or less serious and that is why I have been really sick recently, despite being on a gluten-free diet.

This is the part that I really dont understand??

If you are both concerned that something else is going on....why is the focus not on finding out what that "something" may be?? It sounds like the focus is on your Celiac diagnosis....which seems pretty solid to me.

I dont believe that you will get a positive biopsy in such a short time and I dont understand what this type of outcome will prove to you or to you doctor?? Even if it were to come back positive...I dont see how this puts you any closer to figuring out why you have been sick recently??

I think its taking leaps backwards when you really should have a doctor who's helping you move forward with your health problems. This means concentrating on what is going on now....instead of challenging your Celiac diagnosis.

It doesnt seem logical to me....I wish you the best of luck but I am not in agreement with your Dr.'s line of thinking. You are currently putting quite a bit of stress on your immune system.....unnecessarily....in my opinion.