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Celiac Diesease Without Classic "celiac" Genes?

MsModelSara

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MsModelSara Rookie
MsModelSara
Posted

Hello everyone. I've finally decided to write my first post on the forums here. I have been following other threads and researching for months now. I'll give a little background on why I'm posting before I start asking my questions: (i apologize for the length)

I have been having random symptoms for so long now, but they have been slowly increasing in severity. Since high school, I have had issues with dry skin and fatigue as well as migraines. I had my wisdom teeth removed in 2006 and the migraines stopped for awhile. In 2005 I got my hypothyroidism diagnosis and that "explained" the extreme fatigue and weight gain and dry skin, hair falling out and all that goes along with hypothyroidism and was prescribed thyroid hormones. I have battled anemia since birth on and off. I have also kept my symptoms of hypothyroidism despite being on hormones, my Dr was looking at me like I was a hypochondriac for repeatedly returning complaining of symptoms. Still always VERY tired, hair falling out, itchy dry skin, my migraines have returned, random constipation/diarrhea. *sigh* I then got my diagnosis of Hashimoto's Thyroiditis (last August) because I got referred to an Endocrinologist finally and she also tested me for Celiac antibodies and it came back negative. My Hashimoto's was very positive though. The normal range is below 20 I believe and mine was over 270. So I have an autoimmune condition causing my thyroid problem. I was doubled on my thyroid hormone and my Vitamin D has stayed low despite taking 50,000 IU a month. That was doubled as well, I am supposed to take that twice a month now. SMH!!! Why just double it and hope it goes up (it stays around 19 despite taking the rx D) and NOT try to figure out why I am not absorbing it?!?! I left it alone for a few months but was still having this nagging in the back of my mind telling me to retest for celiac. I ordered a test from EnteroLab and sent it in. Here's what it told me:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Anti-gliadin IgA 29 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 16 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score Less than 300 Units (Normal Range is less than 300 Units)

Fecal Anti-casein (cow

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Looking for answers Contributor
Looking for answers
Posted

Hi,

I seriously could have written the same post. I've gone through exactly the same symptoms, tests and experiences, except I haven't been put on thyroid meds yet (my T3 hormone fluctuates from being low to low normal.

I also have the exact genes you do.

I

Skylark Collaborator
Skylark
Posted

Hi, there. Stop eating gluten and stop worrying about pieces of paper and diagnoses. :)

There is not enough known about celiac disease and the genes to make ANY conclusions. For starters, HLA-DQ is definitely not the whole story. There are people of every HLA-DQ type that get sick from gluten. Most but not all celiacs are DQ2 or DQ8.

There is also some evidence for non-celiac gluten sensitivities of various types so you can't necessarily get hung up over whether you are celiac. If gluten makes you sick, it makes you sick.

As for the Enterolab stuff the Enterolab tests are interesting, but Dr. Fine has not done enough research to substantiate what he sends out with his test results. Just about everything you have underlined is the stuff I find particularly overstated and poorly substantiated in those reports. :lol: His interpretations are just not consistent with the published, peer-reviewed scientific literature.

MsModelSara Rookie
MsModelSara
Posted
  • Author

Hi,

I seriously could have written the same post. I've gone through exactly the same symptoms, tests and experiences, except I haven't been put on thyroid meds yet (my T3 hormone fluctuates from being low to low normal.

I also have the exact genes you do.

I

Skylark Collaborator
Skylark
Posted

I've been doing a lot of reading lately on gluten intolerance/celiac, and I can tell you with reasonable certainty that the answer is not out there yet. Celiac disease is reasonably well understood, but there are very clearly people who do not have celiac by any measure and yet cannot eat gluten. There are other people with gluten-sensitive autoimmunity in other parts of their bodies. The genetic studies point to multiple loci, not just DQ2/DQ8. HLA-DQ does have very high LOD scores in celiac familes, but there are other genes with significant scores, and other loci near HLA-DQ that could be involved (like HLA-DR).

Some doctors and scientists want to lump all gluten intolerance in with "celiac" but there is actually not compelling evidence for doing that just yet. There are interesting studies showing that gliadin peptide activates parts of the immune system that are separate from celiac autoimmunity.

Dr. Fine at Enterolab is taking advantage of the confusion to some degree. Anti-gliadin stool antibodies are rather common, and there is peer-reviewed research that very clearly shows the meaning is not as cut-and-dry as he suggests. They appear and disappear in some people, and actually seem to be part of normal mucosal immunity in many people. This gets back to a question of non-celiac reactions to gliadin in some people.

Now while I can't offer that much information, I can offer support. I totally understand how wretched the double-whammy of gluten intolerance and Hashimoto's makes you feel! I'm just getting my thyroid sorted again after another episode of nodules and hypothroidism. (ugh)

nora-n Rookie
nora-n
Posted

I have a similar hypothyroid story, thyroid meds almost did not work.

Turns out I am double DQ5.

Dr. Hadjivassiliou found 20% of his glutan ataxia patients are DQ1 (DQ6 and DQ5 are DQ1)

There are even two-three forums for people like that, where many are DQ1 but they have lots of issues from gluten.

There was at least one officially diagnosed DQ6 here, with antibodies and biopsy.

Someone else knew about one in her support group.

There was a posting about a diagnosed celiac who had the diagnosis a while, and then a random gene test found DQ6 and she lost the diagnosis, but that was before the two above ones.

Maybe a serch on DQ6 can bring up the thread from the officially diagnosed one.

VitaminDGirl Apprentice
VitaminDGirl
Posted

Thank you for replying! I work outdoors so I am in the sun although I wear spf 55 at least...and I don't have time to tan outside lol. I got to school full time, intern and work so I will have to resort to taking vitamin D but a version other than the high doses of D2 in Rx form because that clearly doesn't work for me.

I will check out that site though for sure, thank you again!

Hi--D3 is what you need to supplement with to get the levels up, not D2 as formally thought...

yes, Dr. Mercola has some good info and links about "D".

My handle is 'vitamin D girl' because I was recently deficient and have my numbers up and pain is less. Hope that helps! Oh, and you siad you wear 55 sunscreen. Maybe you could put it on after working in the sun for 20 min. each day to ensure you get the D. Otherwise you are blocking the good rays that help you soak in the D3. I am fair-skinned and avoided the sun and have been studying up so much on it. The many diseases one can die from with low D levels out numbers the risk of fatal skin cancers. From what I've recently researched.

but you can look into it yourself and hopefully get some relief, soon.

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