Interpreting Lab Results

[Lizz7711]

Hi, i'm just trying to clarify the difference in diagnosing gluten sensitivity versus celiac disease.

I did entero lab first and these were the results:

antigliadin IgA : 56 (normal <10)

anti tTG IgA: 39 (normal <10)

microscopic fecal fat score: <300 units (normal)

anti-casein IgA antibody: 34 (normal <10)

Gene test: HLA-DQ 2,1 (subtype 2,6)

Then I did blood testing:

gliadin IgA antibody: 24.6 = weak positive

gliadin IgG antibody : 35.9 = moderate to strong positive

So I know I have gluten sensitivity for sure and one of the main genes for celiac (DQ2), but since the blood tests were positive, can I assume I do actually have celiac disease? I'd rather not do the endoscopy and do not really want an official diagnosis as this will then stay with me the rest of my life (insurance issues etc). My doc says I have celiac but he's not going to label it that way in the file unless I want him to. He's not the most knowledgable on the topic though, so that's why i'm asking the question here.

BTW, my 8 year old daughter did entero lab tests and was also positive on all, but does not have the DQ2 or 8 gene. We've been gluten free now for almost two months, so i probably will not pursue blood tests for her.

thanks for any input!

Liz

[ravenwoodglass]

Whether you are technically celiac or not is kind of a moot point. You still need to avoid gluten. If it will make it easier to get what is needed for your DD when she begins school to have you have the label 'celiac' then I would let him just put celiac in your file. If you are afraid of future impact on getting insurance the I would just let him put gluten intolerant. Although the two are really one and the same insurance companies for some reason think that intolerance is less serious, it's not but that is the way they think. Logical when you think about it since before we get the 'celiac' label we usually have run up hoards of other autoimmune problems and years of ill health due to US doctor reluctance to diagnose us till we are almost dead.

[Ursa Major]

It looks like you definitely have celiac disease. But just because your daughter doesn't have an 'official' (here in North America anyway) gene, doesn't mean that she can't have celiac disease as well.

In any case, you are right that it doesn't matter. Neither one of you should be eating gluten (and that is for life), because it makes you sick. And since you've been gluten-free for a while, the biopsy wouldn't necessarily come back positive, anyway.

[nora-n]

Yourdaughter must have DQ6 as one of the DQ genes, and this is a subtype of DQ1. DQ5 is a subtype of DQ1 too, by the way.

DDQ1 seem to be even more gluten sensitive than DQ2 when they first are gluten sensitive, judging from all the postings here by DQ1 people.

Dr. Hadjivassiliou found that 20% of his gluten ataxia research subjects have DQ1.

I guess that gluten sensitive would be a good term.

nora

[Lizz7711]

Thanks for the advice...I agree with you that it really is the same as far as seriousness...and I think the medical world is beginning to catch on to the whole non-celiac gluten sensitivity issue.

I'm like you where i've had a whole lifetime of depression, adrenal and hypothyroid problems (undiagnosed), miscellaneous digestion issues...and now at the age of 42 I find out WHY--hopefully it's not too late to reverse some issues. My mom died two years ago of adenocarcinoma of unknown primary...had ulcers her whole life, then two years before cancer she had diarrhea for a year and weighed 87 pounds..they never did determine the cause exactly. My guess now is I got the DQ2 gene from her and she was probably celiac her whole life as well. It's so tragic how many people have died related to this without any knowledge of it, and how preventable it all could have been. But I look at it as my mom gave her life for us...if it wouldn't have been for her suffering and death...I never would have been on this path that led me to figure this all out for myself and my daughter and who knows what would have happened to us!

Whether you are technically celiac or not is kind of a moot point. You still need to avoid gluten. If it will make it easier to get what is needed for your DD when she begins school to have you have the label 'celiac' then I would let him just put celiac in your file. If you are afraid of future impact on getting insurance the I would just let him put gluten intolerant. Although the two are really one and the same insurance companies for some reason think that intolerance is less serious, it's not but that is the way they think. Logical when you think about it since before we get the 'celiac' label we usually have run up hoards of other autoimmune problems and years of ill health due to US doctor reluctance to diagnose us till we are almost dead.

[Lizz7711]

How did you figure out that you were also sensitive to nightshades and salicylates? I think I have a reaction to white potatoes (joint pain issues), but haven't noticed reaction to any other nightshades yet. I was trying to determine if my daughter has salicylate problems, initially that is what I looked at due to her terrible behavior issues (rage attacks, suicidal thoughts etc) as well as food additives/MSG. Do these issues resolve after being gluten-free for awhile? I imagine some of it is due to leaky gut issues?

It looks like you definitely have celiac disease. But just because your daughter doesn't have an 'official' (here in North America anyway) gene, doesn't mean that she can't have celiac disease as well.

In any case, you are right that it doesn't matter. Neither one of you should be eating gluten (and that is for life), because it makes you sick. And since you've been gluten-free for a while, the biopsy wouldn't necessarily come back positive, anyway.

[Lizz7711]

My daughter has DQ1 and DQ3...can't remember the subtypes right now and am not at home to check, but I think it was 6,7. That's interesting that DQ1 are more sensitive initially. My daughter's reactions, while she does have some abdominal pain and hard stool issues...what is most pronounced are her behavior issues when she gets offending foods--she just changes, gets SO impatient, demanding, mouthy, physically angry etc. She and I are both casein sensitive, and she is soy and egg senstive also (I probably am as well but didnt' test for it). I'm really focusing on gluten and casein as far as our diet goes though...still eating eggs occasiionally, and the only soy we get is in soy butter and incidental ingredietns of other foods.

anyway, thanks for your input!

Yourdaughter must have DQ6 as one of the DQ genes, and this is a subtype of DQ1. DQ5 is a subtype of DQ1 too, by the way.

DDQ1 seem to be even more gluten sensitive than DQ2 when they first are gluten sensitive, judging from all the postings here by DQ1 people.

Dr. Hadjivassiliou found that 20% of his gluten ataxia research subjects have DQ1.

I guess that gluten sensitive would be a good term.

nora