Negative Antibody, Positive Genetic Marker ... Now What

[Salima]

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!

[Roda]

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]

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

[Roda]

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

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

[Skylark]

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

I wish I could forget about them.

[Roda]

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]

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.

[Salima]

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

[Skylark]

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]

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]

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.