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How To Test For Gluten Sensitivity...celiacs Negative

msb11

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msb11 Newbie
msb11
Posted

Both mine and my daughter's celiacs panels came back negative...but, I am almost 100% convinced that this is what it is. It was my dermatologist that ran the panel and she was not too helpful when I wanted to go deeper into the gluten issue (my hair falling out is why I went to the DR in the first place so that is why I was at the dermatologist). Instead I have been referred to derm at Mayo clinic...

What is the testing for gluten sensitivity...Is different than celiacs? I went ahead and found a holistic DR in my area and made an appointment without a referral, but should I press this issue?

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cassP Contributor
cassP
Posted

testing is basically the same... im guessing when the doc doesnt see enough of a "gold standard" whether it's a super high ttg number or a positive biopsy, then he or she will label you as "gluten sensitive". some docs may diagnose you as celiac with just your experience on the diet.

my doctor wanted a positive biopsy, but my insurance wouldnt cover it... so he labeled me as "gluten sensitive"... but he didnt look at all of my test results untill i brought them back this last august, plus my genetic results, plus the DH on my stomach... to which he agreed that he believes i am Celiac.

so, you see, its very complicated- especially if you're getting "negative" or "inconclusive" results.

your first test may not have been comprehensive enough, or maybe you weren't consuming enough gluten, OR you had a false negative.

do you have a copy of your blood test?? it would be a good idea to get a copy and understand what it means. if you feel comfortable, you can post it here- members love to help.

did you say you were getting an endoscopy soon?? or just being referred to a Derm?

cassP Contributor
cassP
Posted

OOOHHH & PS- usually the hair falling out is a symptom of a hypothyroid (which btw many celiacs or family members of celiacs have)- you should get your thyroid checked out!! your PCP can run that easy..

ive been shedding more hair lately... and 4 years ago my TSH was borderline- so im gonna go in for that test soon.

msb11 Newbie
msb11
Posted
  • Author

They have checked my thyroid, iron, hormones, etc...and did a scalp biopsy for lupus.

The dermatologist has referred my to the dermatology center at the Mayo clinic. I just think that they know so little about celiacs and gluten sensitivity that they do not think it could possibly be the cause. I have had 2 blood tests for lupus come back negative, but he is still insistent on going forward with that being the cause of my hair falling out.

I am hoping that the holistic doctor that I am seeing Thursday will be more willing to look deeper into gluten possibly being the cause, but I can't wait any longer and am going to stop eating gluten today...I am seriously becoming so depressed because of this. If I feel better gluten free, then I will know that gluten is the cause.

cassP Contributor
cassP
Posted

They have checked my thyroid, iron, hormones, etc...and did a scalp biopsy for lupus.

The dermatologist has referred my to the dermatology center at the Mayo clinic. I just think that they know so little about celiacs and gluten sensitivity that they do not think it could possibly be the cause. I have had 2 blood tests for lupus come back negative, but he is still insistent on going forward with that being the cause of my hair falling out.

I am hoping that the holistic doctor that I am seeing Thursday will be more willing to look deeper into gluten possibly being the cause, but I can't wait any longer and am going to stop eating gluten today...I am seriously becoming so depressed because of this. If I feel better gluten free, then I will know that gluten is the cause.

GOOD for you- you have to listen to your body!! are you sure your thyroid was ok??? it's so classic- gluten issues/hair falling out to be your thyroid... or maybe its stress.... but again, sorry , im not a doc.

they tested me for Lupus and Sjorgens for a year and a 1/2 when i was a kid.... why they never thought to test for ANY OTHER Autoimmune Diseases INCLUDING Celiac is Beyond me!!!! why these docs are satisfied with just shrugging their shoulders and saying "i dont know" is beyond me. there's always an answer somewhere... geez louise.

i dont know about hair falling out as being specific to gluten, but i have had all of these symptoms from gluten: Dandruff, Excema, Psoriasis, and DH.

good luck

abonadea Newbie
abonadea
Posted

i was diagnosed with celiac disease over 30 years ago, by an iridologist. last year my MD had me get tested, since there are now known blood tests to run, and he is a "text-book" MD. however, he didn't know you had to be consuming gluten for the tests to come back positive. when the test came back negative (i've been gluten-free for over 30 years with a short exception) his response was, "well you can continue to live gluten free if you want." upon learning this result, i researched the issue and gave him the information regarding the relationship between gluten consumption and test results. I was required to find that informaton for myself. i was also not willing to put my body through the discomforts and health risks, which for me are apparent, of consuming enough gluten to have a definite effect on the test results. we must remember that a large percentage of MD's have limited knowledge of nutritional matters beyond low-iron anemia.

also, i (as do many celiacs) tested positive for hypothyriodism in my early 30's. i inherited this from my mother. my sister has continued to test negative. she chooses not to treat her body as though she has no thyriod issues (and certainly not gluten issues) but continues to exhibit many of the symptoms of hypothyriodsm.

my point is, these are related diagnosis' and both have tests with a high risk/percentage of false negatives. please listen to your body, and understand what factors may effect the outcome, when interpreting these types of test results.

GFinDC Veteran
GFinDC
Posted

If you do go gluten-free now, then any testing for celiac from now on will be less reliable. Another celiac disease test they can do is an endoscopy, where they take tissue samples and look for villi degradation. If you want that done, you should stay on gluten until it is complete. But the benefit of a diagnosis is something you have to decide on. Either positive or negative diagnosis doesn't matter if gluten makes you sick. The thing to do is stop eating it so you can feel better. Regardless of test results.

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