• 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.

15 Months Gluten Free And Still Testing Positive For The Disease
0

11 posts in this topic

Recommended Posts

Newbee    9

Just got back my latest TTG IGA results. I've been gluten free for almost 15 months now and was really hoping this test would be negative. It was close, but still positive. They say anything less than 20 is negative. My score was 20. My first TTG IGA was 125 followed by a score of 33 7 months later. Now 7 months later it only dropped 13 points. I know I should be testing negative by now. I'm very careful in what I eat and have eliminated grains, processed food, and most other food. So I don't think I'm contaminating myself and my doctor agrees. I've probably had the disease for about 38 years. I know that can slow down the healing. I'm curious if others have had similar experiences and how long before you finally tested negative?

Share this post


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


mushroom    1,205

You may never test absolute negative - don't forget that under 20 is negative so you are so darned close - congratulations for getting that low. I think that is wonderful and cannot understand why you are upset :rolleyes: Don't fret, just keep doing what you are doing, tighten up any areas where you may have gotten a bit lax (if any) and test again in another year. It took you a long while to get where you got to, so you have to expect for it to take a while to get back. :)

Share this post


Link to post
Share on other sites
Newbee    9

I'm not really upset, just a little frustrated and curious if others have taken longer than a year to get a negative score. My GI had mentioned after my 2nd test that some people never test negative but he still wants to keep testing me. And I'm still having issues. But just found out I developed thyroid disease in the past year so that might explain issues as I understand that can mimic some celiac like symptoms.

Share this post


Link to post
Share on other sites
mushroom    1,205

I am self-diagnosed so was never tested, therefore there is no baseline I can ever test against. I just go by how I feel :) But I do know that it took me at least three years to heal (sorry if that discourages you, but I am probably older than you, too!).

Share this post


Link to post
Share on other sites
Newbee    9

Interesting to hear how long it took you to heal. I've heard it can take a long time if you've had the disease a long time. I was pretty patient the first 6 months and got antsy after the GI said I should be better by then. I've read it can take as long as 1 year for blood tests to normalize. But I'm past that. I know it is close to normal. Just wish I would hurry up and heal and stop developing other new health problems. I spend way too much time researching my health issues.

Share this post


Link to post
Share on other sites
Ads by Google:


Takala    413

Make sure your thyroid medications are gluten free.

Don't forget, some people never test positive, either, so it's all good as long as you stick to the gluten free diet.

You also might want to look into whether you could be reacting to "other" ingredients.... I had to switch brands on gluten free flour type ingredients because oat cross contamination was setting me off - I may never have figured that one out, except I was lucky enough to have talked to another celiac about it and she explained how different companies have different standards for what ingredient/ products they run thru their lines.

The people with neurological symptoms are supposed to be the most sensitive, I know I was not no where near "normal" after only 2 years gluten free, and there is no way to guesstimate whether I've had this since childhood or developed it as an adult, because I did not have typical symptoms. In retrospect, looking at the bone loss and arthritic changes, it was definitely "there" as a young adult so it's at least 3+ and maybe 4 decades of damage.

Share this post


Link to post
Share on other sites
Newbee    9

Yep, checked with the manufacturer on the thyroid medication before I bought it. I've found that I have a lot of food intolerances so now I mostly follow the SCD diet which is completely grain free. That has helped with symptoms quite a bit but the few foods I don't react to give me a very limited diet. I saw my GI doc today and he told me to keep doing what I'm doing, nothing else will help he says.

Share this post


Link to post
Share on other sites


Ads by Google:


Roda    186

When they checked your thyroid, did they do the thyroid antibody tests? If you have autoimmune thyroid problems or other autoimmune conditions the tTG can be elevated in those as well.

This year is the first time I have had COMPLETELY negative blood work(it had been 2.5 years since my last tests). Initially I only had the IgA tTg done at my time of diagnosis and it was positive at 78 I think(>20 pos). I never had the gliadin tests done. Six months later I had the tTG repeated and it was negative and IgA/IgG gliadin antibodies done and they were both positive. I didn't get upset since on the latter two I had nothing to compare it with. Again retest in a year proved the tTG negative but the other two positive still. At this point I was having symptoms of diarrhea, fat malabsorption, anemia and stomach pain. I had a repeat scope and I had a stomach ulcer and some inflammation in the small bowel. FF a few months and still having symptoms. Doc wanted to put me on steroids but I refused. I did end up getting a RX for pancreatic enzymes and I told him I was going to get rid of everything(even gluten free stuff) and go back to basics. I ate fruits, veggies and meat. If I didn't fix it I didn't eat it. In three months time I felt so good and didn't need the RX enzymes anymore.

I got to looking over the things that could have caused an issue. I noticed I used a lot of a certain brand of gluten free products. I began to wonder about gluten free oat cross contamination(ate them once 7 months after I went gluten free and reacted really really bad). Called the company and inquired and it was a possibility. So to test the theory I ate some baked items from a gluten free bakery that used that brand of flours etc. I reacted horribly.

So not only to I have to make sure my food is gluten free I have to go the extra step and make sure they are gluten free oat free and free from cross contamination from them. I really feel that the avenin protein(the oat protein) is what was causing my labs to stay elevated. It is estimated that appx. 10-15% of celiacs react to the protein just as they do the ones from wheat, barley and rye. You can do more research on avenin sensitive enteropathy. This may not be a problem for you though, just thought I would put it out there.

Share this post


Link to post
Share on other sites
Gemini    785

Just got back my latest TTG IGA results. I've been gluten free for almost 15 months now and was really hoping this test would be negative. It was close, but still positive. They say anything less than 20 is negative. My score was 20. My first TTG IGA was 125 followed by a score of 33 7 months later. Now 7 months later it only dropped 13 points. I know I should be testing negative by now. I'm very careful in what I eat and have eliminated grains, processed food, and most other food. So I don't think I'm contaminating myself and my doctor agrees. I've probably had the disease for about 38 years. I know that can slow down the healing. I'm curious if others have had similar experiences and how long before you finally tested negative?

Hi Newbee......I need to tell you that your doctor is running the incorrect test for dietary compliance. This happens ALL THE TIME and it infuriates me to no end. Here's what you need to do....the correct testing to see if you are still ingesting gluten is the AGA IgA and AGA IgG or the newer test that is run in place of these, the DGP. The tTg test is for intestinal damage (tissue) only. It can be elevated from other autoimmune problems, most notably Hashi's thyroid disease, autoimmune liver disease and a few others. If you run the DGP and it's really low, then you are not ingesting gluten and you could have another AI problem. Or it could be that you are slow to heal but I doubt that as I went my whole life with Celiac, was diagnosed at 46 years old with an extremely high tTg and it was back down in the normal range (albeit on the high end of normal)after 1 year.

I would look into the possibility that you may have other AI issues or, at the very least, run the other tests to see if you are actually ingesting gluten, which it doesn't sound like you are.

Don't drive yourself crazy with your diet because it sounds like you are doing a good job but you won't know for sure until you have the correct test run. Do you have any symptoms that would make you think you are ingesting any gluten?

  • Upvote 1

Share this post


Link to post
Share on other sites
Newbee    9

The doctors did find that I had hashimoto's disease this time (really high antibodies for this), so perhaps as suggested this is why I'm still showing a positive result with the TTG IGA. Blah, hope I don't get anymore autoimmune conditions.

Share this post


Link to post
Share on other sites


Ads by Google:


Gemini    785

The doctors did find that I had hashimoto's disease this time (really high antibodies for this), so perhaps as suggested this is why I'm still showing a positive result with the TTG IGA. Blah, hope I don't get anymore autoimmune conditions.

That 'splains it, Lucy!!!!! :D

Hashi's will keep tTg higher and probably won't come down further until you

get that under control. This is what happened to me also. The gluten-free diet will help with that but it can take awhile so be patient. I would suggest they run the other tests I suggested to make sure you are not ingesting gluten. Those should come down as you remain gluten-free but the tTg will be more stubborn. It can be done, though....I did!

Good luck to you.

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
      107,919
    • Total Posts
      938,677
  • Member Statistics

    • Total Members
      65,843
    • Most Online
      3,093

    Newest Member
    chibody
    Joined
  • Popular Now

  • Topics

  • Posts

    • I'm confused. You don't have celiac? Have you had a blood test or biopsy? Have you been diagnosed with DH?  What were you diagnosed with 9 years ago? If it was celiac or DH why have you only been gluten-free for 6 months? We need a better picture of what's going on here to help you more successfully.
    • Okay good point. I did not know that about ketosis. Thanks for educating me.  
    • Okay good point. I did not know that about ketosis. Thanks for educating me. 
    • Enzyme Latiglutenase improves symptoms in some celiac patients, but which ones? Enzymes have shown some promise for treating celiac symptoms, but so far none has to improve histology or symptoms in celiac patients. There are currently several efforts underway to develop successful commercial enzyme treatments for celiac disease. Efforts include looking at the digestive enzymes in plants, such as the papaya and star fruits, including such predatory plants, such as the pitcher plant. View the full article
    • I am confused too.  I appears that your blood panel was indeterminate, but that your NP had you on a grain free diet for five weeks prior.  You went back on gluten for two weeks (recommendation is 2 to 4) for the endoscopy.  Maybe it was not enough time for your antibodies to build up and start attacking your small intestine.   Doctors can not say for sure that two weeks is enough.  Probably for most, but maybe not all.  I say this because I never even test positively on the TTG and EMA EVER (but my biopsies proved otherwise and my anemia resolved forever on the gluten free diet).  The number of biopsies taken (6 or more recommended) and the location should be determined.  I would ask for all medical and lab reports.    I think a second GI consult might be prudent.   Your symptoms?  If you have celiac disease it can take a few MONTHS to feel better.  Why?  Most often mistakes are made in the diet.  It happens.  There is a steep learning curve.  It flat out just takes time to heal.  I think most members will tell you that healing does not happen that fast even though science tells us that villi regenerates in just a few days.   There is usually a lot of collateral damage. Finally, something is wrong.  Maybe it is NOT celiac disease.  I though for sure my niece had it, but Crohn's was found instead on a pill camera.  She had consulted with four GIs!!!!  Maybe it is NCGI which is determined after celiac disease has been ruled out.  Then a gluten-free diet is in order to resolve the NCGI (Non celiac gluten intolerance or whatever they are calling it now.   So, keep advocating for your health.
  • Upcoming Events