Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Not Sure If Celiac
0

8 posts in this topic

I was experiencing stomach pains and gasiness and was referred to a gastroenterologist.  She performed a colonoscopy (I am 50) and an endoscopy. I had a positive biopsy leading to my celiac diagnosis. At the time, May of 2013, they said that was the gold standard for testing, so I accepted it as fact.  Still had pain issues, but less gas and I was no longer anemic.  My blood work for tissue transglutaminase ab (iga) was 8 after being gluten free for a few months. The lab report said anything less than 20 is negative, although others in this forum seem to indicate it should be less than 4. Also had abdominal ultrasound done and they found nothing wrong.

 

Problem is I don't feel any different (stomach pains) even though it is better than it was. My gastro doctor said a celiac may not feel any different, or may not realize they have consumed gluten at all, unlike a gluten intolerant person. I have been gluten free since May of 2013, but have made a couple of mistakes and consumed food that my contain gluten, drank a beer without thinking, and I never felt anything. Have not noticed much improvement other than the reduction in gas, and improvement in blood count.

 

I'm beginning to think I need to do the genetic testing to rule out any doubt. What do you think?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi and Welcome to the Forum!

 

I've never heard of a positive biopsy turning out to be anything other than Celiac - but if I'm wrong about this I'm sure someone will be quick to jump in and correct me.  If you aren't 100% gluten-free (i.e. avoiding cross-contamination, etc.) then you can't expect all of your symptoms to go away.  Not sure why you wouldn't have a noticeable reaction to gluten after having been gluten-free but I think for some people it just happens that way.  Also wanted to mention that the genetic test doesn't really rule out any doubt... it is estimated that approx. 30% or so of the population has the genes but only about 1% actually get Celiac.  And although it is much more rare, there are folks who do not have the genes but do have Celiac.

2

Share this post


Link to post
Share on other sites

Your blood work should be negative after a few months gluten free.  You can't use that to prove you don't have Celiac.    

1

Share this post


Link to post
Share on other sites

if you have had a positive biopsy, why would you not be sure if you have celiac?  and that means gluten free for ever.  you have only been gluten free since last year>  i am on my 4th year and i am still seeing improvements.  maybe you are still getting cc'd somewhere.  if you eat out alot, chances are you haven't been very gluten free.

0

Share this post


Link to post
Share on other sites

Thanks for the comments. I have recently read that the biopsy is not necessarily proof, but the genetic testing is now considered the gold standard. Not only had I considered that they meant a negative biopsy is not proof, but thought they also meant a mis-read positive biopsy is possible. After all, a biopsy has to be interpreted by a human, right? I'm not a doctor and don't know how easy or difficult it is to interpret. My gastro doctor had another doctor verify her findings, so I'm assuming there is room for interpretation.

 

Anyway, yes I had already resigned myself to the fact that I am gluten free for the rest of my life, no going back. But sometimes the doubts creep back in. I asked my doctor about all of these people who rave that they feel so much better after going gluten free, while I have not noticed any difference at all.  My doctor told me that since I am a celiac, I may not notice anything at all.  The only real improvement has been the return of my hemoglobin A1C counts. I guess I was hoping for more.

0

Share this post


Link to post
Share on other sites




Hi and Welcome to the Forum!

 

I've never heard of a positive biopsy turning out to be anything other than Celiac - but if I'm wrong about this I'm sure someone will be quick to jump in and correct me.  If you aren't 100% gluten-free (i.e. avoiding cross-contamination, etc.) then you can't expect all of your symptoms to go away.  Not sure why you wouldn't have a noticeable reaction to gluten after having been gluten-free but I think for some people it just happens that way.  Also wanted to mention that the genetic test doesn't really rule out any doubt... it is estimated that approx. 30% or so of the population has the genes but only about 1% actually get Celiac.  And although it is much more rare, there are folks who do not have the genes but do have Celiac.

Interesting... Thanks for sharing the data on the genetic testing. When I was diagnosed the doctor was looking for the cause of abdominal pain and anemia. The doctor was looking for stomach ulcers during the endoscopy and biopsied the small intestine at that time and found the celiac disease. So it was probably more of a "search for other causes" than it was "looking for proof of celiac," if that makes a difference. I haven't had all of the symptoms that everyone describes, so maybe I have not been celiac for very long. My anemia went away fairly quickly, so I'm thinking I didn't have much damage yet. I question the biopsy only because it is interpreted by a human, and in my case it seemed that it was not easy to determine from the biopsy. Maybe I'm reading more into the need for the second doctor's review than I should.  It just makes me wonder how difficult it is to read these biopsies.  Anything that needs to be interpreted can be mis-interpreted, and it seems nothing about celiac disease is 100% for certain at this time.

0

Share this post


Link to post
Share on other sites

FWIW.. I didn't have any obvious symptoms at all when I was diagnosed.  I requested the blood test because Celiac is in my family and I was getting routine blood work done anyhow so I figured I'd ask to have that one thrown in too - fully expecting it to be negative.  My endoscopy three weeks later showed moderate to severe villi damage.  So you're right... there's nothing about Celiac Disease that is 100% certain.

0

Share this post


Link to post
Share on other sites

Thanks for the comments. I have recently read that the biopsy is not necessarily proof, but the genetic testing is now considered the gold standard. Not only had I considered that they meant a negative biopsy is not proof, but thought they also meant a mis-read positive biopsy is possible. After all, a biopsy has to be interpreted by a human, right? I'm not a doctor and don't know how easy or difficult it is to interpret. My gastro doctor had another doctor verify her findings, so I'm assuming there is room for interpretation.

 

Anyway, yes I had already resigned myself to the fact that I am gluten free for the rest of my life, no going back. But sometimes the doubts creep back in. I asked my doctor about all of these people who rave that they feel so much better after going gluten free, while I have not noticed any difference at all.  My doctor told me that since I am a celiac, I may not notice anything at all.  The only real improvement has been the return of my hemoglobin A1C counts. I guess I was hoping for more.

 

The genetic test IS NOT the gold standard for Celiac testing.  Please make sure you are getting your information from reputable sources ie: not friends and not some odd person on the Internet.  This will only cause you confusion.

 

Tighten up that diet and go over your Kitchen protocols.  And you WILL test negative on blood test AND Negative on Biopsy after being gluten free for a length of time.

 

Good luck to you.

 

Colleen

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,602
    • Total Posts
      918,318
  • Topics

  • Posts

    • to biopsy or not?
      Some other boxed mixes that I think are worth it are  http://www.krusteaz.com/products/gluten-free-mixes/gluten-free-double-chocolate-brownie-mix http://www.namastefoods.com/products/cgi-bin/products.cgi?Function=show&Category_Id=4&Id=21 We didn't care for any of the other Namaste products but the Spice Cake IS very good. Against the Grain Gourmet Frozen Pizza is really good! I hope you can find it at your local stores.   BTW, when I made breads of any kind from the ATK cookbook, when everything was totally cooled off I would wrap tightly in tin foil, slip that into a gallon ziplock & freeze. Slice things like laves of bread & rolls, buns, biscuits before you freeze them. Then I would just take out what I needed & heat in the convection oven or in the case of toast -- just toast it. Everything I froze turned out great so don't think you have to eat everything in 2 days. Of course with a family of 5 and how good this stuff is I imagine you won't need to freeze anything. 
    • Blood results - odd
      Hi I have been given a  working diagnosis of celiac disease TTG 103. I had the endoscopy yesterday and I am awaiting celiac serology ( tests go to a different lab so take longer). my GI Dr ordered more tests and some have come back odd, my ferrtain was 9 ( range 20-204) my folate 4.4 ( range 3.1 - 20.5) my B12 982 ( range 187-883). FBC  mean cell volume 76.9 ( range 80-100) mean cell haemaglobim 24 ( range 26.9 - 32) mchc 312 ( range 320- 359).   All other results appear to be in the normal range.  My question is the high B12 is odd, has any one else had anemia/ b12 deficiency symtoms whilst having high B12.   I went to the Dr as I am feeling awful, dizzy, palpitations and breathlessness and think it's to do with my iron, my gp was beyond useless and thinks it's all due to an infection as I had a temperature of 37.9. I still feel awful but not Like I have flu awful if that makes sense. I have gone gluten free as I have had the panel and the endoscopy now but feeling so much worse than I have in a long time. Gp has taken blood for CRP and FBC to rule out sepsis as I was feeling pretty broken as he though my iron levels would not cause these symptoms. I am going to try and get hold of my GI Dr or his sectary tomorrow and go back to the Gp and beg for iron.
    • Celiac.com: ImmusanT Inc Reports Nexvax2 Phase 1 Data In Patients With Celiac Disease
      A gluten-free diet is the only current management for this disease. The community prevalence of celiac disease is approximately 1% percent in the ... View the full article
    • Washing Dishes
      Gluten is a very sticky protein that cannot be removed easily. Non porous items can be washed safely and effectively, being very careful to throughly rinse, use a dedicated sponge/washcloth to wash. If washed by hand wash and rinse under hot running water not in a sink of water if you don't have a dedicated gluten free kitchen. My kitchen is totally gluten free and I still rinse under running water. I attempted to use the dishwasher for the first time yesterday and I feel like I've been glutened so I'm not sure if it's safe or not. There was no gluten containing dishes in it, but it's a rental house so God knows how the previous tenants used it and whether there may be any lingering gluten in it. I also have other issues that cause a lot of the same problems so I'm going to keep trying to use it for a few days and see if I continue to feel glutened or not. As far as counter tops, sinks etc, any non porous surfaces can be wiped clean, but it takes multiple wipe downs with multiple sponges. Thoroughly wipe down and rinse out the sink to rid it off any lose gluten particles. The same thing I did when first going gluten free. Only the kitchen I had then had laminated counter tops that were all scratched up. There is no getting gluten out of those kind of counter tops or cracks around the sink, etc. The ONLY way to possibly destroy/remove gluten from surfaces it's stuck in is to heat it above temperatures most things cannot tolerate and not all ovens can reach. You're looking at like 600°-700° F for a minimum of 30 min. So some stuff can be effectively cleaned in the self cleaning mode of an oven if it has one. Most cookware and utensils cannot tolerate those temperatures though and it's impossible to heat counters and other items to that temperature. Therefore being in a blended house is very risky if not done right. When I went gluten free everyone in my house went gluten free. Except the fish, you can't find gluten free fish food. My husband who shouldn't eat gluten anyway is gluten free and all our animals are on a grain free diet. Even my snake is gluten free since I breed my own feeder mice and feed them a gluten free organic diet. 
    • to biopsy or not?
      A small suggestion........for banana bread, try the King Arthur gluten free banana bread mix.  Yeah, I know......it's a mix but sometimes, time is short and a mix works well.  My husband and I were shocked at how good this is!  it rose up high and beautiful in the oven and has a really good banana flavor to it.  Really....give it a try.  It is so easy to make also! http://www.kingarthurflour.com/shop/items/gluten-free-banana-bread   The ATK cookbook is a keeper for every Celiac!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,702
    • Most Online
      1,763

    Newest Member
    DaveDaveDave
    Joined