Blood Test Result Show "unlikely For Celiac"

[CrazyforCandles]

My Blood Test Revealed

Immunoglobulins- IgA 271

I will get the full panel results tomorrow..this is all they had for me today. The lab lady said it showed that "Celiac Disease is Unlikely" Still waiting for the two Biopsy results to come in

Well....if that is true... then why is it that since I eliminated Gluten from my diet

*for the first time in my life

* I actually go to the bathroom each day Gross but YAY

* I sleep soundly

* No bloating after meals

* MOST IMPORTANTLY.. my HD is clearing up without antihistimines or steroids!

So if I am not Celiac then why is eliminating Gluten and reducing Salt helping soo much? I'd say it was all in my head but family/friends are quite impressed on how they see my skin clearing up and I'm not itching like a lunatic every minute.

Are Blood Test Results often wrong with this disease??? Confused in Indiana lol

[quakenbake]

I'm in the process of being tested myself, but from what I understand false negatives are not uncommon (at least 20-30% of negatives are false, I believe). If you're feeling so great going gluten free, then keep at it. You can even get false negatives on the biopsy, so if a diet change has really helped that much, why go back to eating the gluten and feeling miserable? I plan on just going gluten free myself after my biopsy next Thursday regardless of what my tests say

[mushroom]

The celiac blood panel tests for, guess what, celiac disease!!! This is one of the manifestations of gluten intolerance. There are others that do not show up on the test because they do not meet the criteria for specifically celiac disease. Does not mean you do not have a problem with gluten - just means that you do not get to wear that little celiac badge (I always thought that piece of jewelry was rather ugly any way ) Now, as the pp said, it could be a false negative, or you could be a latent celiac - test you again in a few years and you will show up positive, or you could be a non-celiac gluten intolerant. They really know so little about this disease. All we know is that the test measures what it measures, and whatever it measures you don't appear to have it. But that "IT" is not gluten intolerance, it is the very specific celiac disease as defined by the medical profession and manifested by the test results. Got it?? It has nothing to do with whether or not you, specifically, feel better and improve on a gluten free diet.

[CrazyforCandles]

Thank you Mushroom. I was relieved to think my Dermatologist had given me a hope/ answer to this DH problem and in the process solved the rest of the (so I thought) unrelated problems I've had my entire life. When the test came up negative today I was so frustrated, thinking "NOW WHAT?!" Either way, yes, I do feel better gluten free with my IBS problems and sleeping issues so I shall continue, but hope there isn't something else wrong besides.

Not to seem like an idiot but.. So you can have a gluten allergy but not be a Celiac, that much I understand- but what exactly defines you as having Celiac Disease? Is it the extensive damage to the intestines, or a specific cell that makes you diagnosed as celiac disease? Sorry to be a pain.. I am an Optician, so I know about eyes...not this stuff lol

Will keep you posted when I get my biopsy results.

[mushroom]

Yes, celiac disease specifically causes damage to the small intestine, to the villi which are the little finger-like projections on the sides. And at the tip of these villi are the cells which produce lactase to digest lactose, which is why if you have extensive celiac damage you are unable to digest lactose products. So the celiac blood tests test for the specific antibodies and the celiac biopsies test for the flattening of the villi (or sometimes erosion or sometimes just inflammation) in the gut. The testing for celiac disease often does not pick up those who suffer DH or neurological damage from gluten (and who knows what other manifestations of gluten intolerance). It is possible to have the so-called IBS-type symptoms from gluten and have a normal endoscopic biopsy.

[cassP]

Thank you Mushroom. I was relieved to think my Dermatologist had given me a hope/ answer to this DH problem and in the process solved the rest of the (so I thought) unrelated problems I've had my entire life. When the test came up negative today I was so frustrated, thinking "NOW WHAT?!" Either way, yes, I do feel better gluten free with my IBS problems and sleeping issues so I shall continue, but hope there isn't something else wrong besides.

Not to seem like an idiot but.. So you can have a gluten allergy but not be a Celiac, that much I understand- but what exactly defines you as having Celiac Disease? Is it the extensive damage to the intestines, or a specific cell that makes you diagnosed as celiac disease? Sorry to be a pain.. I am an Optician, so I know about eyes...not this stuff lol

Will keep you posted when I get my biopsy results.

wait wait wait a second... did u say u have DH ???? if yes- then you have Celiac...

blood tests run about 20% on the false negatives.

there is still so much the medical community is learning about Gluten Intolerance- they are really just at the tip of the iceberg. i read a medical article the other day- where they are testing children for a totally different antibody i had never heard of! i wanna say it was GLO antibodies- i'll have to go look for the article. but basically they said these gluten intolerant & celiac children had elevated antibodies for @ 2 years before their ttg or antigliadin became elevated.

good luck with your own answers- but as everyone on here will say- listen to your body- it knows best

[cassP]

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[CrazyforCandles]

Thank you CassP. Not 100% positive that the rash I've had for 4 months is DH but my Derm def thinks it looks like it that's why he dismissed my GP's original diagnosis of Contact Dermititis and did immediate biopsys from two spots on my arms..( which are the worst of my body, next stomach and legs). Between my life long problems ( IBS symptoms, anemic, sleeplessness,trouble conceiving w/o any obvious reason, etc) and the rash he was pretty sure that I was on the right track guessing Celiac and HD. THANK GOD FOR THE INTERNET! If I had not done my own research I would still be on steroids, antihistimines, and hopelessly itching. I found an identical rash of HD after looking for hours online at images and thought "OMG THAT'S IT!".

My fear is that my father passed last year from Gall Bladder Cancer and suffered thyroid/ stomach issues for at least a decade before then and my Aunt (his sister) had 6 inches of her intestines removed for blockages...

Wouldn't their doctor's have tested them for celiac disease or is that not common to do? This is strictly a heriditary disease right?

My guess is that they both had/have it and never knew. My father was only 54 when he passed and my Aunt was 55 when she had her near-death experience. What is in store for me It is very worrying.

[GFinDC]

DH (dermatitis herpetformis) is a skin condition only celiacs get. End of story, if you got DH you gotz celiac too.

[nora-n]

Yes, DH= celiac, end of story.

By the way, with DH you ahve ttg-3 antibodies and these do not show up on the ttg-2 blood tests.

With gluten ataxia, one has ttg-6 antibodies and they have no routine tests for that either.

the tests are not perfect.

The blood test you list here, total IgA, is NOT a celiac test. It is just a total IgA test. Nothing to do with celiac.

[cassP]

Thank you CassP. Not 100% positive that the rash I've had for 4 months is DH but my Derm def thinks it looks like it that's why he dismissed my GP's original diagnosis of Contact Dermititis and did immediate biopsys from two spots on my arms..( which are the worst of my body, next stomach and legs). Between my life long problems ( IBS symptoms, anemic, sleeplessness,trouble conceiving w/o any obvious reason, etc) and the rash he was pretty sure that I was on the right track guessing Celiac and HD. THANK GOD FOR THE INTERNET! If I had not done my own research I would still be on steroids, antihistimines, and hopelessly itching. I found an identical rash of HD after looking for hours online at images and thought "OMG THAT'S IT!".

My fear is that my father passed last year from Gall Bladder Cancer and suffered thyroid/ stomach issues for at least a decade before then and my Aunt (his sister) had 6 inches of her intestines removed for blockages...

Wouldn't their doctor's have tested them for celiac disease or is that not common to do? This is strictly a heriditary disease right?

My guess is that they both had/have it and never knew. My father was only 54 when he passed and my Aunt was 55 when she had her near-death experience. What is in store for me It is very worrying.

yes- it's very likely that your dad and aunt had Celiac or Gluten Intolerance... and no- it is not common for doctors to consider Celiac or test for it- it should ALWAYS be considered with those symptoms ALWAYSSSS

basically unless u live in Italy or Finland- you have to be your own investigator and test orderer

its beyond enraging to me how behind the medical community is- especially because i want family members tested- and they're stubborn.. why should they listen to me when they would have to fight their doctors for a test??!!!??

and YES- it's genetic. it does need an environmental or food trigger, but it is an inherited predisposition