• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gluten-Free 4 Yrs, Contradictory Test Results
0

11 posts in this topic

Hi, I am new here, but thought you all might have some insight.

My great grandfather died of Sprue. I have 2 cousins who react to gluten. I have been having problems for years and 4 yrs ago a friend suggested removing gluten from my diet. I felt better, and have become quite vigilant about remaining gluten free and mostly dairy and soy free.

I was dxed with Hashimoto's thyroiditis (thyroidectomy), gall bladder quit (and was removed), IBS (was perscribed Librax), GERD (told to take Nexium), migraines (prescribed Zomig), arthritis (told to take ibuprofen), chronic sinus infections (given claritin)... early menopause (was given estrogen)... and have been trying to keep positive.... sooo... last year I changed to a new primary care physician, and he has been working his way through my body systems... sending me to all kinds of specialists. Most recently, I have been to a GI doctor... had a colonoscopy and endoscopy and the blood test that checks for gluten antibodies.

I asked the GI doctor if me being gluten free for a few years would affect the blood test... he said "No, almost no one is truly gluten free unless they are working closely with a nutrionist" so, hey, I didn't worry.

Test results? Probably not IBS... was told to wean off the Librax... he found very inflamed innards... pathology showed no crohn's diease, not colitis... but DID show partial villous atrophy. Blood test was negative... soooo... he had me have more blood taken to do the test to check for the chromosomal markers for celiac disease. hmmmmm... said not having the marker(s) would rule out celiac.

Test results may come back next week... the local hospital was not sure how to run the test, so it was to be sent to Mayo's I think.

I am unsure about all this. I DO feel better without gluten and dairy... and have always suspected corn to be an irritant... could the first blood test for the anitbodies have been a false negative? He seemed surprised to find the villous atrophy after the negative blood test.

Sigh.

Any insight would sure be appreciated!

Thanks ever so much!

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


...

I asked the GI doctor if me being gluten free for a few years would affect the blood test... he said "No, almost no one is truly gluten free unless they are working closely with a nutrionist" ...

...

AAAAARGH! That's SO ridiculous he must have almost no experience w/ celiac patients. The antibody tests need the gluten.

(He might really think that 'in theory' the antibody tests are affected, but that no one's gluten-free so it doesn't matter? Either way a horrible point of view for a practicing GI.

"Unless working closely w/ a nutritionist" makes him sound like he thinks all foods are a mystery. Most ingredients are gluten-free - it can be a shock at 1st to have to pay attn to it all, but 100% gluten-free is not at all impossible.

... ... could the first blood test for the anitbodies have been a false negative?

It's not even that imho. An antibody test is invalid when done after that long gluten-free. An actual false neg requires a valid test.

0

Share this post


Link to post
Share on other sites

Also, it's a little goofy for him to be turning to the murky world of celiac genetics when you have villous atrophy AND a positive response to gluten-free.

Imho, every good GI would dx you on these, unless they have some other explanation for the villous atrophy.

Just shaking my head at that Dr's failed attempt at the blood test & warped view of the gluten-free diet.

1

Share this post


Link to post
Share on other sites

First off your GI is pretty ignorant about celiac. The fact you still have villi that are impacted may mean that you have not been as gluten free as you thought you were being. If you are sharing things like toasters, butter, nut butters, condiments, a shared colander, baking with gluten flours for others, eating in restaurants that don't have gluten-free menus etc you may still be getting enough gluten to keep the villi damage going.

Don't rely on the gene tests to rule out celiac as there are more than the two genes that most doctors look for associated with celiac. There are also some rare conditions that can also cause villi damage so do make sure your doctor rules those out. The fact that you improved a great deal gluten free is good and an indication that you do need the diet. You continued issues could be a result of cross contamination. Do make sure you also check all your medications, both OTC and script for gluten and read as much here as you can to learn what you need to do to keep yourself safe. Ask any more questions needed.

0

Share this post


Link to post
Share on other sites

Ask for a SIBO test. It's a bacterial overgrowth that can damage villi. It can mimick Celiac. As far as the blood tests..it's rediculous to say that you are probably still eating gluten because you can't avoid it.

Also..be aware that most Dr.s agree that you have to have DQ2 or DQ8 to be Celiac. They dismiss anything that doesn't fit as not Celiac. I'm one who has DQ2.2..and had total villous flattening when DXed. Two different GIs did scopes and the biopsies said Celiac. Then they did the gene test and said they weren't so sure. It's ridiculous!

Get the SIBO test to see if it could be the cause of the villi blunting. AND..I'm banging the drum now for no GMOs. Corn, soy, canola, cottonseed, sugar beets, papaya, and zucchini and summer squash are all suspect. They have been genetically modified to produce insecticide which doesn't break down and can be released into our systems.

0

Share this post


Link to post
Share on other sites
Ads by Google:


Thanks for the comments :) I had not previously heard of SIBO... that is a good idea... also, I am reading all I can to learn more so when I go in again I can ask better questions. I knew you folks would help :)

0

Share this post


Link to post
Share on other sites

got my test results back today. I have the DQ8 marker... so can't rule out celiac... he didn't really say I have celiac disease, but wants me to go see a registered dietician to follow a gluten free diet... I explained again that I have been gluten free for 4 years and have been very scrupulous (as much as I can be) for 2 years... he told me to humor him, to see the dietician and then come see him in a few weeks. He said if the dietician agrees that I am doing what I need to do, that is great, but I don't think he realizes that I have been sooooo careful. I feel as though my problems have just been handed off to someone else. ah well... at least I am now officially supposed to be gluten free and can tell my family as much :)

0

Share this post


Link to post
Share on other sites




Going against what others are saying I think you have a good GI, he is not jumping to the conclusion of celiacs until all else is ruled out and getting you properly diagnosed and treated with a nutritionist shows that he cares. Be happy you have someone who is very thorough and is not just handing you a celiac pamphlet and saying get the hell out. At least after all this you can be assured of whatever it is you have.

This is an interesting article on a rare case:

http://www.ncbi.nlm.nih.gov/pubmed/9672361

0

Share this post


Link to post
Share on other sites

Going against what others are saying I think you have a good GI,

...

Are we reading the same story? The Dr who said the blood/antibodies test will work fine despite 4 yrs gluten-free?

That's an ignorant Dr.

0

Share this post


Link to post
Share on other sites

Are we reading the same story? The Dr who said the blood/antibodies test will work fine despite 4 yrs gluten-free?

That's an ignorant Dr.

I was looking at the whole picture and not every word that came out of his mouth. My only direction is that you can have more than one issue going on at the same time and at least this doctor is taking his time to look into everything.

Unfortunately not everything that comes out of a doctors mouth is always accurate, but this one seems to at least be trying to find the cause.

0

Share this post


Link to post
Share on other sites




interesting abstract, thanks! Fortunately, they did not find any evidence of crohn's in the pathology report.

it is interesting to me that his first impressions, based on what he saw during the endoscopy and colonoscopy changed dramatically when my pathology report showed villous atrophy. I am glad that that at least now I can say that a doctor has told me I should follow a gluten-free diet... and he does want to make sure I am doing it well and completely... and he does want to see me in a few weeks after I have had time with the dietician... it just frustrated me a little to feel like I was being pushed off onto the dietician and that he really didn't believe that I have been as careful as I think I am being... and maybe he is right... maybe I am being exposed somehow... I do have the damage in there. I just hope we can figure out how to fix it so everything can heal. I worry about not absorbing vitamins and minerals and medicines properly.

But I kinda want to smack him in the head with the blood report I just picked up from his office which says in big all cap pletters that the results of the antigen test would be affected by previous non-gluten diet.

ah well... next hoop... I will jump... I just want to figure it all out. :)

0

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
      107,324
    • Total Posts
      935,501
  • Member Statistics

    • Total Members
      64,986
    • Most Online
      3,093

    Newest Member
    Sue Seguin
    Joined
  • Popular Now

  • Topics

  • Posts

    • Well, thank you for replying. Yes, I would also like to know and have a certain "validation" but I will go on to eat gluten free.  Thank you for the idea of keeping a food diary.  I was keeping one for weight loss, but I guess my primary focus will be gluten-free as well.  I'm sorry you had to eat gluten just to find out both tests were negative. That was disappointing, I can only imagine. 
    • Thank you everyone. Jmg & cycling lady sorry for being snippy . I appreciate your help just frustrated. sorry if I am a bit snippy. Not well as you sense. I hate this particular symptom/ reaction. The gluten challenge opened the door to a bunch of  symptoms I buried for 3 1/2 gluten-free years that I had no intention of waking again. I now know it's always been immune and food, but get frustrated over the the amount of time it has not been diagnosed it feels unjust and that most Dr still don't get it 38 years later.  It was reborn after my gluten challenge and I am beyond sad we discovered my DS has this too. As we removed my allergens from the house and my DS was off the foods, if he ate something at school or a friends (because we just removed it for mom) we quickly found and he that he's like mom. He looks like dads mini me but more handsome, but has moms food issues -yikes.  His ped Dr would not test him for celiac or refer him and does not understand food intolerances vs IgE allergies. when we ask for a prescription for allergen free Advil or Tylenol ( I found a compounding  pharamacy willing to work with us) he had ortho work done , she tells us she does not know how to write a prescription for that.   We really don't like reactions and it did say 100 percent juice and quite frankly we believed it.  The histamine  definetly a potential issue as sulphites does not seem consistent food diary wise. I am not sure what is going on. More likely we are celiacs with leaky guts manifesting as food sensitivities trying to heal. I just know I have more intolerances then when I went in. I went into the challenge not being able to eat gluten and came out with all heck breaking lose.  I quit my PT job so I can Prep and cook from scratch entirely growing all my own herbs etc trying to heal. My husband actually enjoys our food even more and tolerates the "woman he married being gone and replaced by this alien" my words not his. He does want me to heal, believes I will, so he can have his wife back. I question if I just have to accept who I am now. I am disheartened that it's slow to heal and despite my years of this undiagnosed garbage I can't get my son the help he needs in 2017! thanks for letting me rant. It was stupid to believe a processed juice maker I'm waiting to activate my water kefir colony so we can add something to our homemade almond milk and water options.   thanks for letting me rant and why do I still have to rant.   maybe the 43 years of frustration and anger of being an undiagnosed celiac.   so sorry y'all. Cranky few days  
    • My daughter did not test positive for celiac (6 week gluten challenge after being gluten free for 2 months).  So she is technically NCGS. One of her worst symptoms is leg pain. It was a chronic problem when she was 7, to the point where she could no longer play soccer. At 8 we went gluten free because of GI issues and the leg pain went away. It came back with the gluten challenge and again went away when we went off gluten for good after testing. If she gets glutened, that is one of the tell-tale symptoms. She has had to use crutches because the pain is so bad.  And when glutened, the pain usually lasts about 3 days. 
    • Thanks raven and awol--I think she will feel much better hearing that these pains could be due to her celiac.  I don't know about the Epsom salts-never asked-so I definitely will.  I think further compounding it right now is that the doctor did not want her to take ibuprofen for 7 days before the procedure and not sure if Tylenol is allowed but she can't take it because it messes with the continuous glucose monitor that she wears.  Only 4 more days.   I will try to see if my primary can or will run a full celiac panel for me.  Left him a message asking why he didn't test my immunoglobulin a and whether we should be running the full panel.  I have encouraged my husband to test as well--he did just have a colonoscopy and endoscopy last fall--looking for other things but would they have been able to see celiac if there?  He has bad acid reflux and they were just doing the colonoscopy since he turned 50.  My other daughter-who has Hashimoto's-was genetically tested for celiac through Prometheus labs about 6 years ago due to our family history of autoimmune and she was having bad stomach issues--that came back negative.  So I think (hope) she's good?  
    • Omg I love quiche.  https://www.bettycrocker.com/recipes/gluten-free-quiche-lorraine/1d20d2e5-e2cd-4b2a-bc83-38bee7736463 i have trail mix for breakfast. Its nutty goodness is high in protein and helps me stay full.  
  • Upcoming Events