Help With Gluten Challenge

[saaa-wheat<3]

For 10 years, I was STRICT, absolutely NO cheats whatsoever, but I ate crackers at a party last month thinking they were gluten-free, discovering they were not after I had eaten a few. I waited a month, expecting to become ill, or at the very least, have DH, but when I didn't have symptoms, I guess I started experiencing all the second guessing someone who might have been eating a gluten-free diet for a only a few weeks, or months, or a couple of years, the second guessing that I never had during my ten years of complete abstinence because I remember how crappy I felt when I made the commitment that I never looked back on, until this past month. Now that I have fallen off the wagon, and have fallen hard, I am feeling quite perplexed that I haven't become ill, because it only took so little in the past when inadvertently exposed. With the encouragement of a post from another member, I've decided since all the past tests I've had have come out negative (most likely because I wasn't eating gluten at the time), that I can take my fall from grace and utilize the experience to perform a gluten challenge. How long is long enough, and because it has been 10 years for me, would it take longer for my system to become affected, than say, someone who has only been gluten free for a couple of years?

[Madagascar]

i'm wondering why you're wanting confirmation of your diagnosis by biopsy. sounds like you were pretty sick and got better by giving up gluten. Have Hashimoto's, DH, autoimmune diseases and cancer in your family history . . . well it seems pretty clear that you've got celiac from here. at least the way you wrote your post it sounds like you think you've got it. what will having the "proof" get you that you haven't already gotten?

my understanding is that when you initially develop antibodies they are contained in your intestines, eventually leaving there. if you aren't having other symptoms yet, it may be that your antibodies are just starting and are still in your gut.

i don't know - i'm new to this, but an avid reader and everything i've read would make me wonder why you're taking this route. but i didn't see your earlier post, so perhaps you have your reasons. i'm not meaning to criticize you or anything, i simply don't understand.

[Madagascar]

oh, btw, i'm highly allergic to citric acid too. i'm amazed how many people on here have mentioned it. i've been allergic to it for nearly 40 years and i've never met a single other person who had that allergy, but on this site there have been quite a few. kinda making me scratch my head!

[mushroom]

I imagine if gluten made you feel really crappy in the past, which was the reason you gave it up, you would have to wait until you feel really crappy again to be sure that you have reactivated all your gluten antibodies

[saaa-wheat<3]

oh, btw, i'm highly allergic to citric acid too. i'm amazed how many people on here have mentioned it. i've been allergic to it for nearly 40 years and i've never met a single other person who had that allergy, but on this site there have been quite a few. kinda making me scratch my head!

I'm not allergic to citric acid, its just what aggravates the acid reflux the most. All it takes is some guacamole with only a few chunks of tomato, and it's quite painful if I don't take meds for it. I know some who get the little blisters inside their mouth, is that what you get?

I imagine if gluten made you feel really crappy in the past, which was the reason you gave it up, you would have to wait until you feel really crappy again to be sure that you have reactivated all your gluten antibodies

This is why I never did the challenge in the first place. I would love to be able to perform it for only a month as someone else had suggested, but I didn't think it would be long enough. Frustrating that it only takes a small amount to be affected, but it takes so much more for a diagnosis.

i don't know - i'm new to this, but an avid reader and everything i've read would make me wonder why you're taking this route. but i didn't see your earlier post, so perhaps you have your reasons. i'm not meaning to criticize you or anything, i simply don't understand.

I don't know why I need a diagnosis after all these years...I guess I think about getting older in a rural area and not having the doctors believe me unless I have a piece of paper. I've lost my faith in doctors, as I've been on thyroid meds for the same 10 years with symptoms it was affecting adversely, and it took me becoming ill and figuring it out on my own that it was the meds. Sounds familiar, as trouble-shooting Celiac is much the same, isn't it? I am lucky I have the NP I have now, but I won't always, and worry what issues I will run into as there are insurance changes in the system. Plus, I work with a new group of people now, and while quite a few are sympathetic, there are those few who I can tell poke me with a stick because they don't understand, don't believe me. As for that, I suppose I shouldn't care so much what other people think, but I do.

[Madagascar]

i understand - it's nice to have proof. after all, there are people who want to say it's in our heads. our primary care doc said that about my daughter (20) who kept having more and more food allergies, and at the same time was melting down emotionally. he told me it was all in her head and i just about hit him. i told him it was in her gut, it's in my gut, it was in my mother's gut - not in our heads. that was a year before the celiac diagnosis, and honestly, that was probably also the reason i got tested, even though after all my reading it was obvious as could be that all of us had celiac.

perhaps what would be a "compromise" is that you could get the genetic test. but heads up - it's expensive. I told my doc i specifically wanted my testing done by Prometheus Labs because that's who the local Celiac Specialist recommended. That was just in November, and they did the antibodies as well as the genetic testing. It was $940 and the insurance covered all except $160, i think. There are 2 genes that they check for in the US, although in other countries they check for as many as 23 genes. If you have one of the genes, regardless of where it is located, then you either have celiac disease or you could have it if something triggered it. i'm saying that because Prometheus said that where my gene was located made it unlikely that I would have celiac. They rated it 2 on the scale of 1-8 (8 being confirmed.) But I have the symptoms and the antibodies and have had the symptoms my entire life. The Celiac Specialist said it doesn't matter where it's located.

anyway, you don't have to go gluten-free to get your genes checked.

There's lots of good information here and also on the U of Chicago's Celiac Center site, if you haven't seen it. Here's their e-book (look in the lower right corner of the page): Open Original Shared Link

The fact sheets under the medical professionals tab are also great: Open Original Shared Link

oh - citric acid gives me a poison oak type of rash, nearly immediately. if i eat it the rash goes on my face. if i touch something with it, like accidentally use a shampoo or something, i break out right where it touches. it lasts a couple of days and itches like mad. i don't think that's DH, but it's been a pain.

[saaa-wheat<3]

ooo.... that rash sounds painful itchy! thank you so very much for the genetic testing info, it's good to know why you like Celiac Specialist over Prometheus. I just popped by the allergist's office today and without being seen, they handed me a sheet for a RAST test. My guess that isn't the test I really want though, because it's IgE and immediate as opposed to the auto-immune tests IgA, IgG and IgM, if I am understanding things properly. The auto-immune tests are what Celiac Specialist and Prometheus test for, right? It is pricey, and I'm not sure if my insurance will cover. If it does, I would have to pay for a good chunk of it anyway, as it gets applied to my deductible, but certainly something to keep thinking about. Thank you for reaching out to me Madagascar and to those of you who are still peeking in on this (namely, Mushroom) I PROMISE not to whine on the boards when I get sick!

[Madagascar]

oh gosh, i totally understand. we're all in the same boat, after all.

i think i explained wrong though - there's a woman here who is an RN who has celiac disease. She left her job as an ER nurse when she got sick with celiac (like thought she was going to die for months) and she now has her own business consulting for celiac disease and as an on-call RN. that's who i was calling a celiac specialist. a dermatologist finally diagnosed her by the DH rash, but even working with docs all day every day, and seeing people specifically for all of her various illnesses that all turned out to be celiac related, she didn't find docs to be helpful. i think that's why she started her own business - she told me that she realized she could save more lives specializing in celiac disease consulting than as an ER nurse.

She is the one who told me about the difficulty getting accurate testing done. i suppose a lot of it is simply because lab techs aren't doing that many tests to be able to get good at them. She basically told me what to tell my doctor that i wanted, and i did and he went along with it. She knows far more than he does about it - in fact, when he sent me the lab report, he said i had a diagnosis of adult celiac disease and he would refer me to a nutritionist if i wanted. he also said there was a wealth of information online about celiac disease. that made the RN choke when she saw it, because she's right here in town. She speaks to groups around the world about celiac disease, but she isn't particularly recognized by docs here. you know how that is. Anyway, she recommended Prometheus Labs. On the Univ of Chicago Celiac Center site, i think in their e-book, they recommend Prometheus, Mayo Clinic labs, or one other, and that name is escaping me. I fixated on the Prometheus name because the RN here had recommended it as well.

Then when i went to the lab to get my blood drawn, i took the Prometheus Lab Paperwork and made a big production out of wanting it done by them. I wanted the genetic testing done and i don't think Peace Health, which is our local lab, does that, plus if i was going to bother and pay for the blood test i wanted it done right. The lab tech didn't know anything about Prometheus, so when i got home I phoned the lab manager and talked to him. He knew of it and said he'd make sure it got sent there. But a few days later i got the lab report from Peace Health labs. oops. So i called back again and the lab manager said they'd realized the error and sent it on to Prometheus and I wouldn't be charged for the Peace Health labwork.

the interesting thing about all of that is that i was able to compare the two lab results. Peace Health was relatively accurate, within a margin of error that you'd expect. So i think that particular lab person did fine.

You completely don't want a RAST test. good grief. that tests for food allergies and it's not even very accurate. i've had food allergies for years (like 40) and skin testing is more accurate than the RAST blood test, but both have false positives. You want the specific test that checks for celiac disease. the fact that they said you needed the RAST would make me nervous. i wonder if they know what they are talking about. Is that an allergy doc or a primary care or ?

The specific test that i had was called the "Celiac Disease Panel" and it checked for the following:

Immunoglobulin A (IgA)

Endomysial Antibody, IgA

Gliadin IgG

Gliadin IgA

Tissue Transglutaminase IGA

that was the list from the Peace Health report.

the Prometheus Lab included the genetic report. Their itemized report named these as their tests:

Deamidated Gliadin Peptide Antibody, IgG (DGP IgG)

Deamidated Gliadin Peptide Antiboy, IgA (DGP IgA)

Anti-Human Tissue Transglutaminase IgA ELISA (TTG IgA)

Anti-Endomysial IgA IFA (EMA IgA)

Total Serum IgA by Nephelometry (Total IgA)

Here's their page: Open Original Shared Link

I had the Celiac Plus panel done that included both of the others. That was the one that cost $940ish, but with insurance i only had to pay $160ish. They did send me a letter that said if my insurance didn't pay all of it, they might assist in the cost of the labs. i thought that was really great. In my mind, to spend $160 to know for certain that i had the gene, and my 3 kids needed the heads-up on the disease, was well worth it.

To compare them - the Prometheus said my Total IgA was 605, the Peace Health said it was 589. The other results were given on different scales. the TTG from Prometheus was 1.3u/ml with a reference range saying you wanted less than 10.3u/ml; peace health called it 29 EU with a desired range under 20.

If you get sick and want to whine, if i see your post, i'll be sympathetic. you just want answers, and no one wants to avoid food if they don't have to!