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Why Confirm With Biopsy

bailey4

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bailey4 Newbie
bailey4
Posted

Hi

Relatively new here and I have a question I couldn't find the answer to. I had a positive IGA Gliadin, Felt a million times better on a gluten free diet, and finally got my Dr to listen to me and get me into a GI Doc. I have 2 friends (nurses with GI Docs) and a nutritionist who says it is important to be diagnosed (for other family members and just finding out the damage so far as well as finding out myself to confirm everything) So I have been gltuening myself intentionally for about a week before that I was off it for a couple months (with the exception of getting glutened through the learning process) The GI wants you on 3 months of gluten before the biopsy or negative test results could happen. My questions are

Will that time I tried to eat gluten free but didn't all the time just by mistake (learning) count as gluten free times or not.

Also everyone feels that with celiac as opposed to just being intolerant you have to be more careful with your diet. (Dont get me wrong I am not discounting either as a major issue, I know it is)

Since I have been back on gluten it is worse than ever is this normal due to the fact that I may have been starting to heal?

Thanks for any input!!!

Lisa

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RiceGuy Collaborator
RiceGuy
Posted

Yes, it is very common to have an increase in symptoms after being gluten-free for awhile (even if it wasn't 100% gluten-free). It really is up to you whether to get the testing done. If it gives you piece of mind - if it gives you the extra reassurance you need, then do it. Just keep in mind that results are often negative, even for someone who hasn't ever tried going gluten-free. I, like many, didn't bother with tests. The diet is the best test after all (I don't trust doctors anyway).

HTH

dbmamaz Explorer
dbmamaz
Posted

Many people on this list say it is important to get dx'd for those reasons . . .but many other people say there is a high chance of false negatives, too. Its really got to be your decision - you have to decide how bad you feel on gluten and how good you feel off gluten, and if its worth it to YOU to feel this bad for 3 months just to get a piece of paper to show to your freinds and family. And you have to decide if you'll stick the diet better with a dx or if it wont make a difference to you.

I doubt the accidental glutening is enough to count towards the 3 mo, tho I really wouldnt know. And yes, many people find their symptoms are worse after a time off of gluten, perhaps our bodies were coping, or perhaps we'd just gotten used to the symptoms. I saw a post somewhere of a woman who had constant nerve pain in her arms, and she woke up one morning thinking she couldnt feel her arms . . only to realize her arms were fine, they just didnt HURT.

good luck w your decision

Tim-n-VA Contributor
Tim-n-VA
Posted

The reality is that celiac shares symtoms with other diseases/conditions. The ideal situation for diagnosis is to do different tests that check for different aspects of a disease in a manner to eliminate the various other conditions. The definitive diagnosis is the reason to do all of the testing to include biopsy. A simple dietary response is enough to decide what you should eat.

The other problem is that once you are off gluten, generally reactions get worse. Many of the tests are actually testing your reaction to gluten so you have to have it. It is really poor advice to tells someone to just try not eating gluten without knowing what level of "definiteness" they need for their mental well-being.

nora-n Rookie
nora-n
Posted

You were asking if your small bowel has healed enough in those two months off gluten to not show any damage now?

Some people have had positive biospies after one month gluten-free.

I think it is individual.

I had a negative biopsy after five weeks badk on gluten after accidentally being off gluten for half a year (I was doing atkins and happened to be gluten-free but had some cake at a funeral and at christmas and noticed huge symtoms)

I really think I was at the beginning of celiac when I accidentally went off gluten and that the 5 weeks on gluten was not enough as I had increased symptoms even after the five weeks. I should have kept on after the biopsy and should have had another one after three months on gluten. Better, I should have cancelled the first appointment and asked for a later one.....

nora

ravenwoodglass Mentor
ravenwoodglass
Posted

What you have done is a gluten challenge. In your case the return to illness was obvious. Have you contacted the GI doctor? There are some that will give you your 'official' diagnosis based on the challenge results. Whether at this point you want to continue the challenge and biopsy is, IMHO, up to you. No matter what the results of the biopsy are you will still need to be gluten free. Being gluten free will not effect the testing results of any tests other than celiac tests.

bailey4 Newbie
bailey4
Posted
  • Author

Thanks for all your input. I go to the GI dr on Thursday. I guess the confirmation for me and my son as well as making sure there is nothing else wrong may keep me going, bloated and all. Thanks again its nice to have some understanding and helpful advice. I am trying to be positive and look at it like I have a free pass to eat anything I want because I love my food!!!

Lisa

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jewi0008 Contributor
jewi0008
Posted

I am very concerned with what I'm reading on here! Someone please help!!!

I got the Celiac Blood tests, which were negative. The same day as the GI requested I get the blood tests, they also scheduled me for an Endoscopy and colonoscopy. He said that as soon as my blood tests were done I could stop eating gluten (I was miserable!). So, I stopped eating all gluten. I have been gluten-free for about 2.5 months now (minus the occassional slip ups and anywhere there is CC) Well, my stomach tests are this upcoming Tuesday. Now I'm worried that because I've been eating well even if I do have something it's not going to show up!

I figured the GI specialist would know what he's talking about. I'm just sick and depressed that I'm doing this for no reason now, since I dont' have gluten in my system!

THOUGHTS?!?!?

bailey4 Newbie
bailey4
Posted
  • Author

I am very concerned with what I'm reading on here! Someone please help!!!

I got the Celiac Blood tests, which were negative. The same day as the GI requested I get the blood tests, they also scheduled me for an Endoscopy and colonoscopy. He said that as soon as my blood tests were done I could stop eating gluten (I was miserable!). So, I stopped eating all gluten. I have been gluten-free for about 2.5 months now (minus the occassional slip ups and anywhere there is CC) Well, my stomach tests are this upcoming Tuesday. Now I'm worried that because I've been eating well even if I do have something it's not going to show up!

I figured the GI specialist would know what he's talking about. I'm just sick and depressed that I'm doing this for no reason now, since I dont' have gluten in my system!

THOUGHTS?!?!?

I am sorry to be the bearer of bad news but there isn't a single Dr. or nurse in the field that I have talked to that would test me without eating gluten. I was off gluten for a while about 2 months (still learning so I did have some in my system) and have been on it for 2 weeks now he is testing me next week because I am so sick and wouldn't put me through any more "damage". Most dr's tell you 3 months. Sorry but I would call his office ask some questions and reschedule it the problem is if you go and don't have any gluten in your system, you may get a false negative. Your body heals itself rather well and quickly in that area. It also is no fun going back on gluten once you feel better, its hard to feel bad again on purpose, I am doing it mostly for my son so I can find out if I have it then he can get tested without the battle.

Lisa

tom Contributor
tom
Posted
. .. . Most dr's tell you 3 months.

Stanford's Head of GI Dept told me 1 month - 1/2 slice of daily bread.

I didn't do it.

jewi0008 Contributor
jewi0008
Posted
Stanford's Head of GI Dept told me 1 month - 1/2 slice of daily bread.

I didn't do it.

So if you didn't do it, did you still get the Colonoscopy/Endoscopy? And if so, what were the resutls? I'm so pissed off right now with Dr's.

Lisa Mentor
Lisa
Posted
So if you didn't do it, did you still get the Colonoscopy/Endoscopy? And if so, what were the resutls? I'm so pissed off right now with Dr's.

jewi:

Let me jump in here.... as you may know, there are three ways to diagnose Celiac or gluten intolerance, blood work, endo/biopsy and positive dietary response. Although you may not have the positive blood work (which can be unreliable), you do have a positive dietary response. Many people here have had negative testing, but quite satisfied with their dietary response.

Further testing with and endoscopy can also look for other issues, which would also be important to rule out. Biopsies can equally unreliable due to the twenty something feet of intestines and not all areas can be sampled.

I can understand your frustration at the inaccurate advise of your doctor, but if I were in your shoes, I would continue with the testing, if for nothing else but a base line test.

jewi0008 Contributor
jewi0008
Posted
jewi:

Let me jump in here.... as you may know, there are three ways to diagnose Celiac or gluten intolerance, blood work, endo/biopsy and positive dietary response. Although you may not have the positive blood work (which can be unreliable), you do have a positive dietary response. Many people here have had negative testing, but quite satisfied with their dietary response.

Further testing with and endoscopy can also look for other issues, which would also be important to rule out. Biopsies can equally unreliable due to the twenty something feet of intestines and not all areas can be sampled.

I can understand your frustration at the inaccurate advise of your doctor, but if I were in your shoes, I would continue with the testing, if for nothing else but a base line test.

That is the best advice I've gotten with regards to this whole thing! I'm going crazy, but you're right...I need some sort of baseline. They already told me that they are also looking for UC and Chrons, in addition to Celiac.

bailey4 Newbie
bailey4
Posted
  • Author
That is the best advice I've gotten with regards to this whole thing! I'm going crazy, but you're right...I need some sort of baseline. They already told me that they are also looking for UC and Chrons, in addition to Celiac.

I hope you didn't think I meant to imply not to get the test, certainly you already know you have some type of gluten intolerance. I wish you the best on Tues I go on Monday. But I would talk to your dr. further about his reasonings for having you go off gluten before the tests, maybe he has his reasonings, it does seem to be a very unchartered territory for these dr's. With the prevelance of celiac and gluten intolerance you would think they would have some type of standard of testing, but they all seem to make their own rules. Good luck.

Lisa

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