Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

abc

How Much Gluten Before A Biopsy?

Recommended Posts

Hi everyone -

I am having a biospy next Tuesday and would like a definitive diagnosis. How much gluten is recommended prior to biopsy - I can't seem to find an answer. I really have eaten gluten light for months now...just because I don't eat a lot of bread, pasta or crackers (or other baked goods). I know I get a lot of hidden gluten - and in the past week, since I've learned I will need the test, I have upped my intake (and my body is none too happy for it...)

any recommendations?

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


From what I've read you need (I think) the equivalent of 3-4 slices of bread a day. That may even be 6. I haven't been through a biopsy but that quantitiy is supposed to be consumed for a minimum of three months to try and get a positive biopsy. Many have still had a negative one.

Welcome to the board. :)

Someone who knows more will jump on, hang in there.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

Share this post


Link to post
Share on other sites
I am having a biospy next Tuesday and would like a definitive diagnosis.

No amount of gluten will make any difference by next Tuesday. (sorry)

any recommendations?

Well, quite a few but I don't know if you will like them.

and would like a definitive diagnosis

Blood tests also give a definate diagnosis ... you can read up on this yourself (I'm not telling you what to do but your MD is probably wrong and out of date)

http://jccglutenfree.googlepages.com/diagnostictesting

Secondly.... gluten-lite.... you may test positive ... you may get bad samples because the damage is patchy ....

You need a FULL celiac panel BEFORE going ahead with the biopsy.

The problem.. this is somewhat self defeating because a positive full panel and the biopsy is pretty much worthless for diagnosis but might be worth it for other problems. A positive full panel gives over 98% accuracy AND of the 2% who don't many go on to have a posotive biopsy later.

A positive biopsy means (and this is tough)

You have damaged one of your bodies internal organs to the point its obvious and that organ may never repair fully.

I say may because in many or most cases it does.. the younger you are the better chance but consider the philosophy... you are deliberatly damaging an important organ to get a test.

Please read both sides of this.. the link I submitted has BOTH SIDES .... and these are medical papers you vcan take to your MD.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

Share this post


Link to post
Share on other sites

Thanks - you have a good point, regarding purposefully damaging an organ...I have had the blood panel done, and my IgG is slightly elevated (which is why they then have recommended the biopsy). I'm just not feeling great with all the gluten, and so I think it does make sense to go back to a gluten-lite diet. I grew up in a "medical" household (dad is a doc), so its hard for me to let go of the "diagnosis factor".

Share this post


Link to post
Share on other sites
Thanks - you have a good point, regarding purposefully damaging an organ...I have had the blood panel done, and my IgG is slightly elevated (which is why they then have recommended the biopsy). I'm just not feeling great with all the gluten, and so I think it does make sense to go back to a gluten-lite diet. I grew up in a "medical" household (dad is a doc), so its hard for me to let go of the "diagnosis factor".

If you need a gluten free diet gluten light is not going to cut it. You need to remove the gluten completely or you will still be doing damage to your body. Have you thought of using Enterolab? You can still get an accurte diagnosis from them even if gluten light.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites
Thanks - you have a good point, regarding purposefully damaging an organ...I have had the blood panel done, and my IgG is slightly elevated (which is why they then have recommended the biopsy). I'm just not feeling great with all the gluten, and so I think it does make sense to go back to a gluten-lite diet. I grew up in a "medical" household (dad is a doc), so its hard for me to let go of the "diagnosis factor".

Well that is equally fine... if you look through these papers then you will see many respected specialists in celiac do not count biopsy as crucial in diagnosis....

This is why I gave you the link because you need to make up your own mind and think about if a biopsy is worth it.

Moreoever the trend is definately against biopsy as a gold standard. So in other words the definitive test today may not be tomoorow because its largely a matter of a symptom as opposed to the whole illness.

I understand your dilemna, I'm a scientist and I like things black n white and neat and tidy when it comes to tests...

but I have learned that celaic is so poorly understood that this is not possible. At the same time the idea of deliberatly damaging an organ that might not ever fully repair is pretty abherent as well.

I personally elected NOT to do it because I had conclusive blood tests AND I was already gluten-free.

You have to make your own decision but we can help you find the papers to make it and answer your questions.

What was your IgA and total serum IgA ?


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

Share this post


Link to post
Share on other sites

What was your IgA and total serum IgA ?

I don't know...I just know the IgG was elevated, but not tremendously. I do need to find those numbers out.

I will go forward with the biopsy, but it is kind of silly b/c I know I will try the gluten -free diet anyway b/c instinctually, I really believe that is my problem.

I truly do appreciate all your support and help on this site - and personally to my question. Its so stressful and all-consuming when you know something is wrong with your body and it seems like you are on the cusp of defining it. I may have to let go of having the perfect diagnosis...as many on this board seem to have done sucessfully and just let my body tell me what it needs.

Share this post


Link to post
Share on other sites

Interesting timing - I just got back from an appointment with a new GI doc. He recommended that I do the gluten challenge - I cringed and asked how long I'd need to eat gluten for (I've been gluten-free for 8 months or so now). He surprised me with "4 weeks". He said the biopsy examination is getting sensitive enough that you don't need the 3-6 months of eating gluten as in the past. Of course that probably depends on the lab, what process they're using, etc, so the doc performing your biopsy would know the "how long" best.

As for how much gluten each day, he wouldn't give me a straight answer on that. He said to just eat a "normal, healthy diet", i.e whatever the food pyramid for grains would recommend. He did caution me against going hog-wild with all the gluten-filled foods that I've missed, like pizza, cake, donuts, etc. I'm a junk food junkie so of course that was my first thought.

Share this post


Link to post
Share on other sites
Thanks - you have a good point, regarding purposefully damaging an organ...I have had the blood panel done, and my IgG is slightly elevated (which is why they then have recommended the biopsy). I'm just not feeling great with all the gluten, and so I think it does make sense to go back to a gluten-lite diet. I grew up in a "medical" household (dad is a doc), so its hard for me to let go of the "diagnosis factor".

My doctor's attitude was that dietary response was clinical proof. So, try the diet, if you feel the same, then it may be another problem. I'll bet you'll feel better!

Interesting timing - I just got back from an appointment with a new GI doc. He recommended that I do the gluten challenge - I cringed and asked how long I'd need to eat gluten for (I've been gluten-free for 8 months or so now). He surprised me with "4 weeks". He said the biopsy examination is getting sensitive enough that you don't need the 3-6 months of eating gluten as in the past. Of course that probably depends on the lab, what process they're using, etc, so the doc performing your biopsy would know the "now long" best.

As for how much gluten each day, he wouldn't give me a straight answer on that. He said to just eat a "normal, healthy diet", i.e whatever the food pyramid for grains would recommend. He did caution me against going hog-wild with all the gluten-filled foods that I've missed, like pizza, cake, donuts, etc. I'm a junk food junkie so of course that was my first thought.

Is the biopsy for you or for him? What I mean is, are you sure you feel better off gluten? If so, then I wouldn't bother with the biopsy.

I did a six week challenge, got so sick from gluten I didn't feel safe driving a car, and my biopsy came out negative. Now that I'm gluten-free again, if I get the smallest amount of gluten, it makes me ill. There is no question in my mind I have the problem. I ended up going to Enterolab because I wanted to know if I just was sensitive to gluten, or if I was really genetically sensitive because I have kids. As it ends up, I have two genes for gluten sensitivity and I do have an autoimmune reaction. My doc just did some mineral testing, which also showed that my body is having an autoimmune reaction. However, I do not have the celiac genes.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites

my doc too was unspecific - they said don't quit eating gluten before hand, just eat normally - but as I mentioned before, I just naturally avoid a lot of gluten-laden foods, so I was trying to determine what is a normal gluten intake! Thanks for those updates.

And, Carla, I do think the diet will do me good - and be a diagnosis one way or the other, but as I said many times before - I'm having trouble letting go of having that medical "nod"...I'm trying.

Share this post


Link to post
Share on other sites
And, Carla, I do think the diet will do me good - and be a diagnosis one way or the other, but as I said many times before - I'm having trouble letting go of having that medical "nod"...I'm trying.

What I meant was that after being on the diet for a couple months and having improvement, you then have your medical "nod"! ;):) It's just a different way and a method you can support if your dad tells you you're crazy. Go gluten-free for a few months, then "challenge" it to see how you react. Then you can say for certain! Rotation diets have been around for years, so you can say you were diagnosed by rotation diet.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites

IMO (and I am not a doctor) the bispoy test for celiac disease is a complete and total waste of time and money. I do not need fancy papers to come to this conclusion, just every day common sense.

Bisopy is never, ever, negative. It can never, ever rule out celiac disease, it can only confirm it. The confusion comes from english use of the word "negative" which in this case realy means non-postive, and makes a big difference. A non-postive result tells you nothing usefull, if fact if it is a good doc, they will tell that since you have a postive blood result, that you need to at least try gluten free diet reguardless of the bisopy results.

So you need to ask yourself, what gain is there for the risk and expense of the procedure? IMO there is absolutly none, but thats your personal call not mine.


- Vincent -

Share this post


Link to post
Share on other sites
Interesting timing - I just got back from an appointment with a new GI doc. He recommended that I do the gluten challenge - I cringed and asked how long I'd need to eat gluten for (I've been gluten-free for 8 months or so now). He surprised me with "4 weeks". He said the biopsy examination is getting sensitive enough that you don't need the 3-6 months of eating gluten as in the past. Of course that probably depends on the lab, what process they're using, etc, so the doc performing your biopsy would know the "how long" best.

As for how much gluten each day, he wouldn't give me a straight answer on that. He said to just eat a "normal, healthy diet", i.e whatever the food pyramid for grains would recommend. He did caution me against going hog-wild with all the gluten-filled foods that I've missed, like pizza, cake, donuts, etc. I'm a junk food junkie so of course that was my first thought.

The actual sampling might have improved but the biopsy is just testing a symptom.... and that hasn't changed.

Everyone is different ... for instance if you use the term "latent celiac" then lots of people have "near normal" biopsies for years ... then one day they destroy villi faster than repairing them and the process becomes self feeding.

As has been said several times already... there is no definitive negative biopsy and whereby some people might test positive after 4 weeks some take 6 months... but the damage is happening all the time.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

Share this post


Link to post
Share on other sites
Guest nini

regardless of the results of the biopsy, go 100% gluten free after you get home and keep a food journal to track your symptoms. Positive dietary response IS a valid diagnostic tool and you can find a Dr. that will support that if you pursue it. It may take going to a few different Dr.s and playing their little games, but it can be done. My daughter's blood test was "negative" otherwise known as NOT POSITIVE, but her positive dietary response couldn't be denied, so her pediatrician supported the Gluten Intolerant dx. She also told me "we KNOW it's Celiac, we just can't prove it" The more research I've done and the more experts I've consulted with (and I've consulted with a lot) just proves to me that if my daughter continued to eat gluten, her symptoms would just get worse and she would eventually do enough damage for it to show up in the antibodies or in a biopsy, but we don't need to go there since she responded so well to the diet.

my personal recommendation would be to skip the biopsy entirely, but you may be one of the "lucky" ones that actually get confirmation through a biopsy.

Once you go completely 100% for at least 6 months, if you want to challenge it at that point, it's your call, but you may find that at some point you accidentally glutened yourself and felt the effects and decide that you are convinced that is your problem.

you have to be your own best advocate for your health and your Dr. needs to be a partner in that. If your Dr. trys to "play God" find another Dr. who will be an active partner in your health care, not a dictator!

Share this post


Link to post
Share on other sites

Thanks for all the replies to this thread - I was about to ask the same question

So you need to ask yourself, what gain is there for the risk and expense of the procedure? IMO there is absolutly none, but thats your personal call not mine.

Thanks for your post about testing - I never thought of it that way really

I've been sick for years until I started eating glutenfree about 4 months ago after my naturopath gave me a food allergy test.

I've been starting to feel really great (apart from some contamination last week or so) but since I've never been diagnosed coeliac I thought that I should get tested. My biggest fear is that I'll need to go back to 'regular' food and that all my symptoms will come back. I don't think I want to risk all that pain and discomfort because I already know that my diet change worked for me. I can't bear the thought of eating regular food for 2-6 months and THEN get tested. It's really been tough on me and my family because it seemed like I was always always sick but now I feel great. I don't want to go back to 'that'.

(Sorry for the rant!!)


wheat free & yeast free since may '06

also lactose intolerant

Share this post


Link to post
Share on other sites