Frustrated, Met With Allergist

[Metoo]

I met with my allergist last night, he did food allergy testing on me. Which were all negative.

Then he said the IgE gluten test I had done that was positive, doesn't make any sense. And that people can have positive results to 100s of things and that doesn't mean they have an issue with it.

Then he said the celiac blood test also doesn't mean anything, because if there were 100 celiacs the blood test would only find 70 of them, so basically its a very inaccurate test. And that I would need either genetic testing (which my mom carries the genes, HLA-DQ8 variants, HLA-DQA1 03 / HLA-DQA1 05 / HLA-DQB1 0301 / HLA-DQB1 0302. But that even genetic testing wouldn't prove I had it, and would be an unneccessary expense.

He said I would need to see a GI doctor and that they would need to do a scope, and that no GI doctor is going to do a celiac test just because of abdominal pain.

Argh. So he wrote me a script for heartburn medication and said I should keep a food diary and see a GI next. That its probably an ucler or my gallbladder.

I am super frustrated now.

I am going to keep a food diary. But I don't want to go see a GI because the pain is so random, that I feel like I will be scoffed at just like this doctor did.

I am debatting on just going gluten free for 4 months, then add it back in and see what happens. Also keeping a food diary during that time. If I happen to have the pain I guess I will try the heartburn meds he gave me.

He also said my small spot of ezcema is very strange and he also hasn't seen any in that small of a spot...and basically that was it.

UGH.

[stanleymonkey]

skin prick tests arent accurate, the skin is completely seperate and different to your gi tract. my daughter had ana anphylactic reaction to milk in baby cereal at 7 months but it didnt show in a skin prick test till 18 months old. the IgE test are the most accurate as your IgE cells are the ones that react to an allergen and the are in your blood, not on your skin.

[newmom07]

We couldn't be 100% sure going gluten-free would change my DS's life when we started last spring. Within days he could be put down, within weeks he was running around again. Seeing his turn-around, I would give it a try. If you want a positive diagnosis, you'll need to keep or return to the gluten. For us, getting him growing again was more important to us. He also failed the allergy prick tests and the allergy dr said he isn't allergic, but his life experience (going from 10% to 50% on the weight charts in 4 months and not up all night screaming with abdominal pain) proves otherwise. We also appreciated having the test from enterolab to have some independent support. Good luck to you as you find what is best for you.

[nora-n]

there is no IgE test for gluten, only wheat I think

But there is a test for gliadin, gliadin Ab IgG that they often do.

Was it that one that was positive?

[Metoo]

Well....I decided still to stay gluten free until Sunday we had a birthday party...so I said the heck with it and had a piece of cake.

Within 1 hour I had stomach pain that lasted for 5 hours, ugh.

To heck with my allergist. I think he is wrong. I either have an allergy or I do infact have celiac, with just less severe symtpoms.

So I have decided that I am going to remain gluten free, except in a few weeks I will again try gluten. So for the next 3 months until my follow up with the allergist I am going to keep a food diary. So that I can log this stomach pain, so that maybe they will give me more time of day.

I also tried the zantac he gave me also, saying I had an ulcer or gastrisis...and it did nothing for the stomach pain.

I guess I feel better now, having the pain again after eating gluten this weekend, kind of cements to me I am on the right path.

[nora-n]

Can the allergist order the deaminated gliadin tests, both IgA and IgG versions? Those are the newest and most specific tests for celiac.

Those would only make sense as long as you still eat gluten, so after a couple of weeks or so they might turn negative.

You can also order the gene test yourself from enterolab.com and that could shed some light on your risk for celiac. I mean if you are negative you most likely will not get a positive scope, but you can be very gluten sensitive just the same. It sheds light on if it is easy to get a diagnosis or not. We already know you react to wheat or gluten.

Celiac is not an allergy, it is an autoimmune condition. It is serious.

[Metoo]

Can the allergist order the deaminated gliadin tests, both IgA and IgG versions? Those are the newest and most specific tests for celiac.

Those would only make sense as long as you still eat gluten, so after a couple of weeks or so they might turn negative.

You can also order the gene test yourself from enterolab.com and that could shed some light on your risk for celiac. I mean if you are negative you most likely will not get a positive scope, but you can be very gluten sensitive just the same. It sheds light on if it is easy to get a diagnosis or not. We already know you react to wheat or gluten.

Celiac is not an allergy, it is an autoimmune condition. It is serious.

I had the celieac gliadin tests for both IgA and IgG as well as the other total and others. They were all negative.

My mother carries the genes.

According to my allergist, the negative blood test means nothing there is still a chance I could have celiac, but at this point random stomach pain isn't enough to do gene testing or the scope, that the cost isn't warranted.

I am hoping with a food diary for 3 months, that maybe he will refer me to a GI and with the food diary I will at least have some backup information then with the diary.

Although, given I don't have extreme symptoms (no diahrea, just abdomainal pain and low Vit D) I am guessing even with a scope I would come up negative.