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I Get My Test Results On Wednesday

Idiote Savante Goddess

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Idiote Savante Goddess Rookie
Idiote Savante Goddess
Posted

I think it was yer basic Celiac blood panel. I went to see him re increased migraines (and trouble with syntax when tired or stressed). When I told him I have a wheat allergy, he asked me if celiac disease had been ruled out and I said no. I have no symptoms other than "soft" neuro signs, a kid who's an Aspie, migraines, and feeling hungover after eating wheat. There's no known history of celiac disease or gluten intolerance in our family, but we don't know much about my Dad's side.

A few years ago, I had a BAD reaction to a drug used to treat sleep apnea and got a rash that looked suspiciously like DH. The pharmaceutical company believed I had an autoimmune reaction to the medication. My liver enzymes were 4-6X normal levels.

I'm a little concerned about whether or not I'll get a false negative since I haven't eaten much in the way of wheat for a year. However, I have been eating LOTS of oats and rye, some barley. (As a newbie, I don't know if there's such a thing of X amount of gluten in one grain and X-2 in another.)

So, if the results are negative, what do I ask?

If they're positive, I assume I ask if I've won the Biopsy Prize?

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ravenwoodglass Mentor
ravenwoodglass
Posted

If the results are negative you try the diet strictly for a couple of months, that is the truest test there is. If they are postive then you do have a choice, you can continue to eat gluten until you can get the biopsy done, but if those results are negative you are still not in the clear and should try the diet, biopsies can miss us and do. Also the fact that you eat little wheat may very well skew the test, although some of us get a false negative even when eating almost nothing but gluten foods ( I am raising both arms and waving heartly here, does make it tough to type with my nose though). So long story short no matter what the test results are make sure you give the diet a good strict try. And by the way give your neuro a hug for me, he is a good one and I sure do wish I had him in the years I struggled with all my celiac related neuro issues, my GI was clueless that celiac causes neuro problems and my neuro was clueless about it also. It sure would have been nice to be diagnosed before I got to the point that it took 5 years to partially recover from all the brain damage but my canes make nice sculptures now.

Idiote Savante Goddess Rookie
Idiote Savante Goddess
Posted
  • Author

Well, the blood tests were negative (I don't have the numbers, got the results over the phone). However, I spoke to the folks at the U of Chicago about the possibility of a false negative because of my wheat allergy. They said even tho' I'd been eating other foods with gluten, I'd still get a negative result, and an endoscopy wouldn't be any better (because while gluten-containing foods, they have less gluten than wheat). So, they recommended the gene test. If it comes back negative, then I can just do my wheat-free diet, and if positive, then I can go the whole 9 gluten-free yards.

ravenwoodglass Mentor
ravenwoodglass
Posted
Well, the blood tests were negative (I don't have the numbers, got the results over the phone). However, I spoke to the folks at the U of Chicago about the possibility of a false negative because of my wheat allergy. They said even tho' I'd been eating other foods with gluten, I'd still get a negative result, and an endoscopy wouldn't be any better (because while gluten-containing foods, they have less gluten than wheat). So, they recommended the gene test. If it comes back negative, then I can just do my wheat-free diet, and if positive, then I can go the whole 9 gluten-free yards.

Have you considered going with Enterolab? I do want to give you a caution about gene testing, when my DD had her gene tests done they only checked for the two main celiac genes and told her she didn't have the genes and that her relief on the diet was all in her head. Unfortunately she believed and now attributes all her celiac symptoms to stress even after a positive biopsy and bloodwork that she had before she had been diagnosed 4 years ago. She of course had been gluten free for a long time before she took herself to a celiac specialist in the city she lives in. I don't know if she told them she had been gluten free and actually doubt she did. After this I had my genes tested and by gene defination I am not celiac but gluten intolerant. I used enterolab for the panels, they weren't really expensive and they look for intolerant as well as 'true' celiac genes.

nora-n Rookie
nora-n
Posted

ravenwoodglass, DQ9 is the japanese celiac gene. I read an article on that some weeks ago.

We in the west have DQ2 and DQ8 as celiac genes, and they of course only researched those. DQ2 is very comon here.

In Japan, DQ9 is very common but not here. so, they just did not research it.

nora

ravenwoodglass Mentor
ravenwoodglass
Posted
ravenwoodglass, DQ9 is the japanese celiac gene. I read an article on that some weeks ago.

We in the west have DQ2 and DQ8 as celiac genes, and they of course only researched those. DQ2 is very comon here.

In Japan, DQ9 is very common but not here. so, they just did not research it.

nora

In Japan it is also associated with a form of adult onset Type 1 diabetes, that was the more common association until they started eating a more Americanized diet according to one paper I read. In Turkey it is associated with skin conditions. I still find it strange that I got two copies of the gene from parents of such different but caucasian backgrounds.

happygirl Collaborator
happygirl
Posted

Also ask if he ran the FULL celiac panel, or just some of the tests.

AGA IgA

AGA IgG

tTG IgA

EMA IgA

Total IgA.

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Matilda Enthusiast
Matilda
Posted

...

Matilda Enthusiast
Matilda
Posted

...

ravenwoodglass Mentor
ravenwoodglass
Posted
This is an aside, but Ravenwoodglass, I expect you've read Dr Fine's comments on double DQ9's. As I remember, he thinks this combination often gives particularly severe symptoms, which is illustrated by your posts here, I think.

Best wishes,

Matilda

Actually I haven't seen them but will look for them. They didn't come up on a search I did, or I didn't notice them with everything else and when I got the results and asked here if anyone knew anything about the Double DQ9 I didn't get any responses. I will check out what he has to say, thanks for the heads up. My main curiosity is because I am wondering if others have severe neuro symptoms for as long as I did before the GI stuff starts. Off to google Dr. Fine and DQ9. :)

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