Help With My Genetic Results Please

[3groovygirls]

Hi everyone!

I got my results today. I was tested b/c my daugher has Celiac and I am very skinny and had a high amylase reading, but it appears i don't have Celiac BUT I do have the genes for it. I was wondering if you all could look over the test results and tell me what you think. What are the chances someone with my genes gets Celiac? It says I am 10X the risk and am high risk. In real life does that mean I might REALLY get it?

Here's my results from Promethius.

I have DQ2.5(HLA DQA*05:DQB1*0201)

It puts me in Category 4, DQ2 Heterogzygous relative risk HIGH.

But I'm fine now! So what triggers this. I don't want to get it....

my other results were normal;

deamin Gliad pep igg <0.4 (<4.9)

DEAMIN GLIAD PEP IGA 0.3 (<6.1)

TTA IGA 0.2 (<10.3)

ANIT ENDOMYSIAL IGA NEGATIVE

TOTAL IGA 90 (44-441)

so I think i didn't even come close to failing right? other than the genes? It's funny b/c I DO think I am a bit gluten sensitive. Since eating a lot of gluten-free products (but not all) I find i am sensitive to whole wheat stuff now.

[nora-n]

yes, you have the most common gene for celiac.

What is the other gene, or do you have two of them? It would not really change things, though.

Do you think you have celiac without a positive blood test?

That is quite common, at least 20% of celiacs with total villous atrophy have negative blood tests.

Of course you not eating much gluten might just have obscured the picture.....for a gluten challenge the last recommendation I have seen is at least 0,5 grams gluten per kg weight per day for at least 6 weeks. That is a lot of bread.

[domesticactivist]

Nora where did you get that formula for how much gluten to eat on the challenge? I looked and looked for a guideline like that! All I found were a few vague articles and so i settled on 20 grams a day for any adult.

[domesticactivist]

This formula puts me at needing 28 grams a day. That really is a lot of gluten! I think some days I may have hit that but not most days. I held out for just under 2 months. Test results coming back next week.

[Skylark]

In real life, it means you have at least 10% chance of getting celiac, possibly higher because your daughter has it and you are already noticing a reaction to gluten.

It's not clear what triggers celiac, though a lot of us have had a flu, food poisoning, pregnancy, car accident, or stress trigger the disease. Other people have it appear with no warning and no particular trigger. You can minimize the risk of getting celiac by limiting the amount of gluten you eat.

[nora-n]

About the 0,3 grams and 0,5 grams of gluten for a gluten challenge, maybe I have that on google bookmarks, maybe not, but a seach on pubmed would maybe give some results.

There also was an article on celaic.com on gluten challenge.

The problem is that often doctors say two slices of bread a day, which is way too little in adults. It is probably right for children.....

[domesticactivist]

Yes, the article on celiac.com said "about 4 slices of bread a day" and put the average slice of bread at 4.8 grams of gluten. From my label reading, most slices of bread that I saw actually had less than 4.8 grams. I decided on how much to eat for my challenge based on rounding up to 5 grams and multiplying by 4, to be on the safe side.

I saw some references that said 3 months so I aimed for that. But I had to quit at 2 months. (Anyone who wants all the gory details of my gluten challenge can pm me, as I kept a log I am happy to share.)

These "by weight" amounts seem to make more sense than a blanket advisory, but I'd love to see the actual references. I haven't found anything that shows a study, for example, of amounts eaten on a gluten challenge vs test results.

[nora-n]

let

[Skylark]

Here are some challenge references I put in another thread, Nora. Maybe it will save you some time.

[nora-n]

I remember the abstracts that said anywhere from 6 weeks to several years, must find it.

You had one with five weeks here, that is the shortest time I have seen. (and that is children)

[Blue-eyed bandit]

I read it only takes 1/8 a teaspoon daily of gluten to cause continual damage to the intestines. Why would you eat 4 slices of bread?!

[kareng]

I read it only takes 1/8 a teaspoon daily of gluten to cause continual damage to the intestines. Why would you eat 4 slices of bread?!

If you want to have enough antibodies to show up on the blood test after being gluten free for years, you need more than an 1/8 of a teaspoon. these people are talking about people on gluten-free diets.

I don't want anyone to think that less than 1/8 tsp of wheat is OK, because it's not.

[nora-n]

when I did the maths, it was 6 slices a day to reach 0,3 grams of gluten per kg

The damage is often also proportional with the amount of gluten, and reverse proportional with time. Meaning it will take longer time before one gets a positive biopsy on smaller amounts of gluten.