Please help me interpret these celiac panel results - Mothering Forums

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#1 of 17 Old 06-15-2009, 05:10 PM - Thread Starter
 
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My 17 yo type 1 diabetic ds was recently given a celiac panel due to weight loss at his last appt. I was told the results were high and that we needed to see a GI doc to do a biopsy testing for celiac. I'm leaning toward going gluten-free (researching now) without the biopsy or oversight of another specialist. I just received the blood test results, they are as follows:

gliadin antibody IgG 113 High
gliadin antibody IgA 38 High
tissue transglutaminase AB IgA 157 High
tissue transglutaminase AB IgG 5 (Normal?)

Isn't this enough to warrant going gluten free? I confess I do not know what these different facets of the test are, and anyone willing to tell me I'd love to know. Even if he tests negative for celiac, he is still clearly not tolerating gluten, right?

I am pretty convinced after I posted in H&H that gluten-free is what we need to do, but I did not have these results. Curious as to WWYD w/test results like this.
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#2 of 17 Old 06-15-2009, 06:02 PM
 
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Welcome to the allergies forum! Feel free to jump in on the chat thread as well!

I think I posted on your other thread, but seeing the numbers, I'd think you're warranted in going GF. My dd's IGA levels weren't as high as your DS's, but the explanation I got made sense (along with all her other issues, ect...): "When you test for pregnancy, regardless of how high or low the numbers are, the fact remains that you are pregnant--not a little bit pregnant, ect". So the fact that any numbers are elevated at all indicates a problem.

if you go to enterolabs.com, they have a great FAQ about understanding your test scores (I know not all the tests are the same, but they do explain IGA) and a FAQ about gluten intolerances. HTH!

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#3 of 17 Old 06-15-2009, 06:23 PM
 
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One thing to consider is that if you have a formal celiac diagnosis, you can write-off the cost of special foods on your taxes. So, if that is important to you or your ds in the future, he may want to get the biopsy or whatever else the doctor requires for formal diagnosis. Best of luck to your ds. We're gf and it's really not that bad.
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#4 of 17 Old 06-15-2009, 08:24 PM
 
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Originally Posted by Chinese Pistache View Post
One thing to consider is that if you have a formal celiac diagnosis, you can write-off the cost of special foods on your taxes. So, if that is important to you or your ds in the future, he may want to get the biopsy or whatever else the doctor requires for formal diagnosis. Best of luck to your ds. We're gf and it's really not that bad.
You can only write off the cost of the special foods as it relates to the 7.5% of your gross income or whatever it is for medical costs.

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#5 of 17 Old 06-15-2009, 10:40 PM
 
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What does your son think? I would probably go gluten free without a biopsy, but when I was a teenager I may have chosen to "know for sure". You are lucky you found out now - it could save him from developing more autoimmune disorders. You know that all 1st degree relatives need to be tested now, right?

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#6 of 17 Old 06-16-2009, 11:32 AM - Thread Starter
 
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What does your son think? I would probably go gluten free without a biopsy, but when I was a teenager I may have chosen to "know for sure". You are lucky you found out now - it could save him from developing more autoimmune disorders. You know that all 1st degree relatives need to be tested now, right?
He just wants it to all to go away. His diabetes diagnosis was only last Oct. He spent a week in the hospital, and has been through some ups and downs with the adjustment. We were waiting for summer to both transition him to a pump, and have his wisdom teeth removed. Neither of these things has happened yet. We will ultimately give him the final say, but there are a few concerns I have with having this managed by a GI doc, including mainstream nutritional advice, and an ongoing spiral of tests and more tests, when this seems like something would be managed without all this oversight. I am also concerned that a negative result would give ds the green light on gluten, which based on the blood test seems absurd. I'm not sure what the point of the celiac diagnosis is when we must go off gluten anyway.

Autoimmune does seem to be an issue in our family, so I'm thinking this will be a benefit to all of us. I think we'll know whether it is effective w/out testing. I just hope I can cover all bases wrt removing the gluten from our home.

The tax deduction is an interesting twist to all this. We were able to claim it last year w/our high deductible for both medical and dental. I have noticed the high cost of much of the gluten-free packaged stuff.
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#7 of 17 Old 06-16-2009, 11:41 AM
 
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I think I mentioned in your other post that celiac and type 1 are both carried on the same gene, so with those numbers, the odds seem pretty high that he does have it (unfortunately). For my friend's sons who both have type 1 and celiac, they each had the blood test, then each had to wait 8 months for the biopsy, then they went off the gluten (mostly but not all the way) for a year. They only see the GI doc once a year for blood tests to see how their numbers are (this past year, the numbers hadn't improved, so they finally cut out ALL gluten). So I don't think there's much more testing after the biopsy except checks, which would probably be a good idea anyway. Personally, if I was my friend (which I'm not), I would have gone off the gluten immediately and not waited the 8 months for the biopsy (which I thought was an absurd waiting time). And I would have gone all the way, because that's how I do things. My kids can't have gluten either. DD2 and I have been tested (blood) for celiac - negative. DS hasn't been tested. DD2 and DS have shown up as gluten intolerant though, and I went off it too. So I know it is difficult, but not impossible. There are so many more options than there were 10-20 years ago. He sounds like a good kid.

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#8 of 17 Old 06-16-2009, 12:08 PM - Thread Starter
 
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Thanks, kjbrown. He is a good kid. It breaks my heart to put him through more stuff.

Why did your friend wait 8 months to test? If we are going to do it I want to do it soon, as I can't remove the gluten until after the test. Having a hard time continuing to provide this food I now know to be harmful.

When we do go off, it seems that cross-contamination is a huge issue. Must we buy only food manufactured on dedicated equipment? Are there any good discussions on this board about that issue?

Thanks everyone for your help!
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#9 of 17 Old 06-16-2009, 02:36 PM
 
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My blood tests were negative and I refused to waste anymore time and money on a biopsy. I did test postive "energetically" like when I saw a kinesiologist.

Anyway I was sick of being sick and thought what did I have to lose? It took several months to learn the ropes. A new diet is a new lifestyle. I am now TF, raw foodist, grain-free, dairy-free, sugar-lite... and I am amazing I could never share enough how healing all these changes have been. I was in a bad, bad place health-wise and all that is reversing. Keep in mind it has taken me over three years to be in this good place and I still have a ways to go. I can relate to your son and what he will be going through

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#10 of 17 Old 06-16-2009, 05:10 PM
 
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Thanks, kjbrown. He is a good kid. It breaks my heart to put him through more stuff.

Why did your friend wait 8 months to test? If we are going to do it I want to do it soon, as I can't remove the gluten until after the test. Having a hard time continuing to provide this food I now know to be harmful.
At the Children's Hospital in our state, apparently that was the wait time, which I thought was ridiculous, since you need to keep eating the food for the test to work. If someone has celiac, they should be off the gluten ASAP in my mind.

Quote:
When we do go off, it seems that cross-contamination is a huge issue. Must we buy only food manufactured on dedicated equipment? Are there any good discussions on this board about that issue?

Thanks everyone for your help!
Some people get a separate toaster, and separate condiments (so that a knife that has been used to spread mayo on toast doesn't go back in the mayo container and contaminate it). Separate cutting boards (if you do wood, which is harder to clean). I have separate colandars (one for regular pasta and one for rice pasta).

Trader Joe's rice pasta is pretty good (Tinkyada is good too). Rice. Quinoa. Creamy buckwheat cereal (Bob's Red Mill) is good if he likes hot cereal (my kids eat it with maple syrup and cinnamon). If the only thing he's avoiding is gluten, then there's a lot of premade things out there. The thing that my friend found is that the gluten free stuff is often higher carb.

Just because it's campfire season.... I know there are gluten-free graham crackers somewhere, but we do other things for s'mores. Granny Smith apple slices and toasted marshmallow. Slice a banana in half, spread with peanut butter and toasted marshmallow. I'm sure the marshmallow itself is pretty carb-heavy, but the fruit makes it more of a grown-up treat.

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#11 of 17 Old 06-16-2009, 05:19 PM
 
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Just because it's campfire season.... I know there are gluten-free graham crackers somewhere, but we do other things for s'mores. Granny Smith apple slices and toasted marshmallow. Slice a banana in half, spread with peanut butter and toasted marshmallow. I'm sure the marshmallow itself is pretty carb-heavy, but the fruit makes it more of a grown-up treat.
MiDel gingersnaps make this really neat little s'more cookie.

eta: and to be a little more helpful, we switched from plastic food storage containers (Ziploc-type) to Pyrex, plastic containers and nonstick pans can hold onto gluten even when they're scrubbed well. There are celiac boards around, they'd probably have getting-started stickies, I'd expect.

http://www.cookingtf.com/gfcf.html

And this is a website/discussion board run by an MDC member who has celiac and she's put together helpful stuff for getting started with the transition.
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#12 of 17 Old 06-16-2009, 05:58 PM
 
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We all went GF with dd as we figured it would be healthful for all of us, and it has been. (I know not everyone wants to do this). I was worried about xcon issues with young children, which wouldn't really be as much an issue with teenagers, unless the gluten containing products are a temptation...which they would have been to me. ( I had a hard time staying out of my mom's pantry, lol).

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#13 of 17 Old 06-16-2009, 05:58 PM
 
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Originally Posted by Tigeresse View Post
My 17 yo type 1 diabetic ds was recently given a celiac panel due to weight loss at his last appt. I was told the results were high and that we needed to see a GI doc to do a biopsy testing for celiac. I'm leaning toward going gluten-free (researching now) without the biopsy or oversight of another specialist. I just received the blood test results, they are as follows:

gliadin antibody IgG 113 High
gliadin antibody IgA 38 High
tissue transglutaminase AB IgA 157 High
tissue transglutaminase AB IgG 5 (Normal?)

Isn't this enough to warrant going gluten free? I confess I do not know what these different facets of the test are, and anyone willing to tell me I'd love to know. Even if he tests negative for celiac, he is still clearly not tolerating gluten, right?

I am pretty convinced after I posted in H&H that gluten-free is what we need to do, but I did not have these results. Curious as to WWYD w/test results like this.
just wanted to mention that our gastro told me that he would diagnose someone off of a high number score (which you obviously have) and then seeing those numbers go lower or normal on a GF diet--he says that's proof enough--something to think abotu if you can find someone to agree with that before going GF
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#14 of 17 Old 06-16-2009, 06:05 PM
 
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Originally Posted by Tigeresse View Post
My 17 yo type 1 diabetic ds was recently given a celiac panel due to weight loss at his last appt. I was told the results were high and that we needed to see a GI doc to do a biopsy testing for celiac. I'm leaning toward going gluten-free (researching now) without the biopsy or oversight of another specialist. I just received the blood test results, they are as follows:

gliadin antibody IgG 113 High
gliadin antibody IgA 38 High
tissue transglutaminase AB IgA 157 High
tissue transglutaminase AB IgG 5 (Normal?)

Isn't this enough to warrant going gluten free? I confess I do not know what these different facets of the test are, and anyone willing to tell me I'd love to know. Even if he tests negative for celiac, he is still clearly not tolerating gluten, right?

I am pretty convinced after I posted in H&H that gluten-free is what we need to do, but I did not have these results. Curious as to WWYD w/test results like this.
sorry I also wanted to say that on the :
tissue transglutaminase AB IgG 5 (Normal?) i think 1-5 is normal and 6-something is higher--so that is on the higher end of normal.
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#15 of 17 Old 06-16-2009, 06:06 PM
 
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I read this article in Living Without magazine about two college roommates, one celiac and one with type 1 diabetes. Maybe it will help your ds overcome some of his fears about the future.
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#16 of 17 Old 06-16-2009, 10:10 PM
 
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I read this article in Living Without magazine about two college roommates, one celiac and one with type 1 diabetes. Maybe it will help your ds overcome some of his fears about the future.
Good article!

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#17 of 17 Old 06-18-2009, 11:31 AM - Thread Starter
 
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Thanks so much for your support everyone. Although this is still overwhelming, I think we'll make it through! Looks like we may end up doing the test, because in the long run the official diagnosis will most likely be of use to ds.

Thanks for the links to resources as well, turns out I am already a Menu Mailer recipient, I just never paid attention to the GF/CF info. What a wealth of info.!

I'm sure I'll be back w/more Q's as we move along on this journey.
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