Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Negative Antibody, Positive Genetic Marker ... Now What

Salima

Recommended Posts

Salima Newbie
Salima
Posted

I went to my GP last fall with escalating digestive issues. She suspected a food allergy and put me on an elimination diet. After six weeks, I added foods back and only reacted to gluten with diarrhea, cramping, naseau. I also got poison ivy at the same time, which is very odd since it was December and I've NEVER gotton poison ivy in the 15 years I've lived in this state.

My GP diagnosed me gluten sensitive and told me to stay gluten-free. A Celiac friend recommended I see a GI doc and be tested for Celiac's. The GI doc put me on a three week gluten "light" diet then blood tested me. Today the results came back as anti-body negative but genetic marker positive.

I also have hypothyroidism, and have for years. Now my GI doc says I'm fine, no Celiac's and eat what I want (either gluten or no gluten). My GP says she wants me tested for Hashimoto's Disease, which some studies suggest correlates with Celiac. She recommends gluten-free for the most part because I feel better that way.

My question is, what to do next? I feel crappy when I eat gluten, so I guess I shouldn't. How careful should I be? If I have the genetic markers should I be regularly retested for Celiac's? What's the harm of eating some gluten in my case as long as I feel alright?

Hoping for the voice of experience here!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Roda Rising Star
Roda
Posted

Well it is very likely that you could have gotten a false negative test because of you being off gluten for 6 weeks. That is enough time for some people to skew the tests. Also only back on a "gluten light" diet for three weeks isn't sufficient enough to get accurate testing either IMHO.

If gluten bothers you don't eat it. Or if you want to persue further testing with a scope/biopsy you will need to go back on a full gluten diet for appx. 3 months consuming about four slices of bread or equivilent per day. This still could lead you to a potential false negative. Or it is possible to have non celiac gluten intolerence(NCGI). Some people believe they are two separate things and others believe that NCGI is just a different form or a precursor to celiac. Either way for both type, gluten is bad news. Since you don't really know which one you are, if it were me I would treat is as celiac and be as viligent as can be with avoiding gluten. This is how I do it with my 11 year old son who appears to be gluten intolerent(negative celiac blood work and biopsy).

Definately get tested for the thyroid. Tests should include a TSH, Free T3, Free T4, and the thyroid antibody tests(don't know the names off hand). Autoimmune diseases tend to run in groups. Having one seems to make you more susceptible to others. I am currently diagnosed with three. Hashimoto's in 2000, celiac 2008 and raynauds in 2010.

Skylark Collaborator
Skylark
Posted

The Hashi's tests are anti-TPO and anti-thyroglobulin. :)

Roda Rising Star
Roda
Posted

The Hashi's tests are anti-TPO and anti-thyroglobulin. :)

Thanks Skylark. For some reason I can't seem to remember them.

Skylark Collaborator
Skylark
Posted

Thanks Skylark. For some reason I can't seem to remember them.

I wish I could forget about them. <_<

Roda Rising Star
Roda
Posted

I wish I could forget about them. <_<

I found out I had hashimotos when I was pregnant with my now 11 year old. I was already being treated for hypothyroidism 3 months before I got pregnant. I was having wonky symptoms during my pregnancy that prompted my PCP to test for the antibodies. They went down but I'm not exactly sure "when" since noone ever thought to test them again for a long time. I've had the antibodies checked within the last two years and they were normal. Unfortunately the years leading up to the diagnosis left permanant damage. Also each pregnancy left me more hypo after than before. Nothing improved gluten free since the damage was already done. However I have been stable since 6 months gluten free without any major adjustments in my meds.

UKGail Rookie
UKGail
Posted

I tested negative for antibodies, and also had a negative biopsy after a gluten lite diet. That was 2 years ago, and the GI said to carry on eating as normal. I took his advice and as a consequence my health continued to decline, and I ended up seeing a rheumatologist for a suspected connective tissue condition. The rheumatologist suggested I go gluten free, and that reversed many problems, and I am now much, much better. However I could have saved myself 2 years of pain and struggle, and my health is now much more fragile than it was 2 years ago, if I had stuck to my instincts and not listed to the GI.

I also have an unreliable thyroid, but not to the same extent of the other posters above.

An international group of leading Celiac doctors have just published a summary of the spectrum of gluten sensitivity. This includes a non-celiac gluten sensitivity, which has similar symptoms to celiac, and which responds well to the gluten free diet. There are currently no tests for it, other than by response to the diet, and problems with reintroducing gluten. Someone recently posted a link to the report, if you can find the thread.

As others pointed out, your tests were not properly carried out, so they may well have missed a celiac diagnosis anyway.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Salima Newbie
Salima
Posted
  • Author

Thanks for all your input. This gives me some information to work with. I appreciate the help.

Skylark Collaborator
Skylark
Posted

An international group of leading Celiac doctors have just published a summary of the spectrum of gluten sensitivity. This includes a non-celiac gluten sensitivity, which has similar symptoms to celiac, and which responds well to the gluten free diet. There are currently no tests for it, other than by response to the diet, and problems with reintroducing gluten. Someone recently posted a link to the report, if you can find the thread.

You mean this?

Open Original Shared Link

My thyroid is a mess, very unstable lately. It got bad well after I went gluten-free. I'm praying the switch to natural thyroid will help.

UKGail Rookie
UKGail
Posted

yes, thanks Skylark. It's not wildly helpful on non-celiac gluten sensitivity, but at least it acknowledges its existence. Hopefully it might help reduce the number of GIs telling patients who have had a negative biopsy or blood test to carry on eating gluten...

What still annoys me is the idea implicit in that black and white approach that one day you are fine to eat gluten, and the next you are very ill with malabsorbtion et al and have to avoid it like the plague. Our bodies tell us that you don't get there overnight.....

Sorry about your thyroid playing up. My celiac aunt became hypothyroid 2 years ago, some 8 years after her celiac diagnosis, and didn't think to mention it to anyone else in the family. We only found out about it a few weeks ago when her celiac sister's adult son was diagnosed as very severely hypothyroid. He is now being tested for celiac too. None of them even know what Hashi's is, so I guess their doctors haven't even tested for it.

Ginger7 Rookie
Ginger7
Posted

Just wondering, are you certain it was poison Ivy and not DH which can c

Be extremely itchy with some clear fluid. Need a biopsy of area next to rash to test. DH is demirtitis herpertiformis.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley...
    2. MogwaiStripe
      - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease. Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/
    3. Scott Adams
      0

      Tahini Swirl Fudgy Brownies (Gluten-Free)

    4. Butch68
      - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too. is this everyone’s experience? Can I drink it? I get dermatitis herpetiformis and don’t get instant react...
    5. trents
      - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,211
    • Most Online (within 30 mins)
      7,748
    MogwaiStripe
    Newest Member
    MogwaiStripe
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Gluten Issues and Vitamin D

      By MogwaiStripe · Posted

      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Guinness, can you drink it?

      By Butch68 · Posted

      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.