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.

Just Tested....still Don't Know What's Wrong
0

8 posts in this topic

I went to my doctor about 2 months ago. I was advised to be gluten and dairy free for a month and a half and then start eating gluten again. During that time, my symptoms were nonexistent and I felt better. But when I started eating gluten again, my symptoms returned and I felt that my previous symptoms were worse. I just had blood tests to test for allergies to wheat, milk, etc, including Tissue transglutaminase IgA. I just received the results and it seems that they are negative. Could they have come back negative because after being gluten free, I only started eating gluten for 2 1/2 weeks? It is frustrating that the results came back negative and my symptoms are back. I just want to know what my diagnosis is or if its something else. My doctor didn't seem very knowledgable about gluten sensitivity and celiac disease, which from reading from many posts is very common. What should my next steps be? (I 'm waiting to hear from my doctor as I just got my results a few hours ago). In a way, having the test come back positive meant that at least I knew what was wrong but having them come back negative, it just feels that I am back to square one.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hello, and welcome.

I always feel so sorry for those whose doctors do things in reverse -- cause the medical reactions to go aay and then test for the medical reactions. It is absolute insanity. Test first, quit gluten second is the mantra we preach over and over. The blood tests are looking for antibodies to gluten, which start fading away once they are no longer exposed to gluten. And the sad part is, he could do an endoscopy with biopsy to test for intestinal damage, but after six weeks that may also be negative because sufficient healing may have taken place to take you out of range of the testing. There is great dispute about how long it takes on gluten to make the testing results valid, but the majority of doctors tend to underestimate the time required. Six to eight weeks for those not severely compromised seems to be a reasonable estimate -- YMMV.

You can continue eating gluten for a sufficient time for your results to be positive (if it is not too painful for you); you can ask for an endoscopy with biopsy to see if you can get a positive result from that (and make sure he takes at least six samples), or you can just try the gluten free diet and see how it works for you -- how did it work for you??

0

Share this post


Link to post
Share on other sites

I agree with mushroom. I would only add get written or electrinic copies of all test results.

Was the tTG-IgA the only celiac antiboody test run? If so, remain on gluten - if you can - and have the full celiac panel along with nutrient testing. Nutritional deficicies is another indicator of the malabsorption found in Celiac Disease.

Let us know if you have more questions. Iit is unfortunate that this diagnosis process is often extremely frustrating.

Hang in there :)

0

Share this post


Link to post
Share on other sites

And if all else fails and not eating gluten solves your problems, well, I think you know the rest.

richard

0

Share this post


Link to post
Share on other sites

Thank you for that information. It just comes to show that doctors do not have sufficient knowledge on this condition. I didn't have symptoms when I was gluten free and I felt better. Now with eating gluten, the biggest difference is that I am even more tired. It was difficult in the beginning eating gluten free. My doctor didn't really give any helpful advice to what to eat (I lost 10 pounds about less than 2 weeks because I didn't really know what to eat). I have actually had to educate myself on celiac disease because I wasn't reallly obtaining information from my primary doctor and the allergy doctor that reqested the testing.

I have also read about people being non celiac gluten sensitive but that there isn't a blood test, etc to test for this. I don't know if that is something to consider that I could have. I did hear back from my allergy doctor....he said to try gluten free and that there are no other tests to do. I was really disappointed to receive that response. I am considering contacting a local celiac clinic and getting a second opinion. I'm just concerned about the cost for additional testing.

Hello, and welcome.

I always feel so sorry for those whose doctors do things in reverse -- cause the medical reactions to go aay and then test for the medical reactions. It is absolute insanity. Test first, quit gluten second is the mantra we preach over and over. The blood tests are looking for antibodies to gluten, which start fading away once they are no longer exposed to gluten. And the sad part is, he could do an endoscopy with biopsy to test for intestinal damage, but after six weeks that may also be negative because sufficient healing may have taken place to take you out of range of the testing. There is great dispute about how long it takes on gluten to make the testing results valid, but the majority of doctors tend to underestimate the time required. Six to eight weeks for those not severely compromised seems to be a reasonable estimate -- YMMV.

You can continue eating gluten for a sufficient time for your results to be positive (if it is not too painful for you); you can ask for an endoscopy with biopsy to see if you can get a positive result from that (and make sure he takes at least six samples), or you can just try the gluten free diet and see how it works for you -- how did it work for you??

0

Share this post


Link to post
Share on other sites




I was tested for wheat, milk, eggs, etc. and the tTG-IgA only. The response from my doctor was that I should limited gluten but not totally eliminate it right away and to test what my body can tolerate. Maybe I need to accept that I won't likely get a diagnosis and limited gluten based on the fact the effects of my symptoms decreased. But I don't know what internal damage if any I might have. That is what also concerns me.

I agree with mushroom. I would only add get written or electrinic copies of all test results.

Was the tTG-IgA the only celiac antiboody test run? If so, remain on gluten - if you can - and have the full celiac panel along with nutrient testing. Nutritional deficicies is another indicator of the malabsorption found in Celiac Disease.

Let us know if you have more questions. Iit is unfortunate that this diagnosis process is often extremely frustrating.

Hang in there :)

0

Share this post


Link to post
Share on other sites

...

The response from my doctor was that I should limited gluten but not totally eliminate it right away and to test what my body can tolerate.

...

For anyone who IS an actual celiac (regardless of what limited/insufficient testing says) this is horrible terrible horrendous malpractice-level bad advice.

0

Share this post


Link to post
Share on other sites

I had limited gluten for years as I was wheat free 9 years. Gluten free is so different. My life is transformed.

Dreadful advice you got there.

Hope you find a way through, keep asking questions

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
      103,337
    • Total Posts
      917,379
  • Topics

  • Posts

    • Weird Reaction
      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
    • 9 year Old going through testing
      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,470
    • Most Online
      1,763

    Newest Member
    Kiwiana
    Joined