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Cheri A

Good News/bad News

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We made our three-hour trek to Wisconsin yesterday to take Carleigh and I to the allergist. It was a very exciting appointment. For the first time in her eight years of going to an allergist, she didn't cry. She had skin pricks and blood taken with barely a tear, and no protest. The blood testing will test all of her food allergies, including wheat. Depending on the results, they would like to us to trial egg and wheat possibly. She is very excited at the prospect. I'm not so sure.

Carleigh has not ever been scoped or been to a GI. After the wheat allergy diagnosis, I asked them to test for celiac. They did and she had three of the five markers. They said that if we wanted a defininitive diagnosis, we'd need to see the GI. We decided not to because at that point we had already taken her off of wheat and seen the positive response of no more vomitting, the eczema was going away, and the poop troubles were resolved shortly thereafter.

I just don't know.


Mom of:

Carleigh~ 10 years old, allergic to wheat, milk, peanuts, strawberries, and many EAs. She is currently soy-light and egg-light ~ celiac testing inconclusive by allergist.

Gluten-Free since 10/05 She's a gymnast. : )

Nick ~ 13 years old with no known allergies.

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MY bad news is, that allergy testing will NOT show intolerances. So, even if your daughter's allergy testing comes back with wheat not being an allergy, that doesn't mean she isn't intolerant to it.

If she had three of the five markers for celiac disease, and reacted to wheat, she likely has celiac disease. In which case it is a terrible idea to reintroduce it. It is possible that she won't even react to it for several years. But if she is truly gluten intolerant it will catch up to her sooner or later and making her sick.

By then she could have developed other autoimmune diseases, osteoporosis or other not so nice things.

In the end, it is your decision. I am just warning you that the allergist may know NOTHING about celiac disease and in his ignorance treats celiac disease like an allergy, which it is not.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Thank you, Ursa. I'm well aware that the testing will not show intolerances. They do not know much about celiac disease, they tested for me after I hooked up on this board. We had decided not to put her through the GI and scoping because she was SO sick at the time. I really wish that I had thought to point out the celiac testing while there.

We'll just wait for the bloodwork to come back. It might be a mute point anyway if the testing shows she's still allergic.


Mom of:

Carleigh~ 10 years old, allergic to wheat, milk, peanuts, strawberries, and many EAs. She is currently soy-light and egg-light ~ celiac testing inconclusive by allergist.

Gluten-Free since 10/05 She's a gymnast. : )

Nick ~ 13 years old with no known allergies.

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This may be a stupid question but what tests are these allergists doing for celiac disease? gluten? and what are these "markers"?


Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11

Son: ADHD '06,

neg. CELIAC PANEL 5/07

ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08

ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08

Gluten-free-Feb. '09

other food allergies

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This may be a stupid question but what tests are these allergists doing for celiac disease? gluten? and what are these "markers"?


Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11

Son: ADHD '06,

neg. CELIAC PANEL 5/07

ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08

ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08

Gluten-free-Feb. '09

other food allergies

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Cheri, I know this is a lot to think about.

Since your daughter has done so well not eating gluten and some serious symptoms have been cleared, that might be proof enough that she should remain gluten-free. I also understand wanting that diagnosis from the GI.

I tend to place more value in how a food makes you feel. If there are clearly symptoms from ingesting that particular food (or a marked improvement from eliminating it) a positive or a negative result on a test isn't going to change that.

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Thanks, Julie. Yes, eliminating wheat was the key to getting her healthy again. I agree with you about placing more value in how a food makes you feel. I REALLY do not want to challenge this. I also spoke to a nurse-friend yesterday about it. Her kids are both allergy patients at the same office. When I told her about the celiac markers, she said she wouldn't challenge it either. Carleigh was there and she was visibly disappointed to hear our conversation. She has only once "cheated" and became so sick again. That was at the beginning of her switch to gluten-free. I have been slowly talking up the benefits of staying gluten-free and not seeing the damage on the inside that it would do to her.

My problem is DH. He has really been on-board about the gluten-free diet for the last two years. WE together made the decision not to scope, but now he seems to want to give it to her again. I am praying that the allergy testing comes back still allergic. Then this will all be a mute point anyway.

Missy, there are blood tests that indicate certain levels in the blood for celiac disease. It can be unreliable in children. The gold standard of diagnosis is the scope and biopsy of damage to the villi in the intestine.


Mom of:

Carleigh~ 10 years old, allergic to wheat, milk, peanuts, strawberries, and many EAs. She is currently soy-light and egg-light ~ celiac testing inconclusive by allergist.

Gluten-Free since 10/05 She's a gymnast. : )

Nick ~ 13 years old with no known allergies.

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Missy, there are blood tests that indicate certain levels in the blood for celiac disease. It can be unreliable in children. The gold standard of diagnosis is the scope and biopsy of damage to the villi in the intestine.

Thank you. It sounds like they are the same ones that the doctors run. I didn't know that allergists did them too and thought maybe they were differnet ones that I hadn't heard of.

I'm interested in everyone's stories because I'm trying to see what's going on with my son. He tested pos. for wheat allergy through blood and skin testing but had a clearly negative celiac panel, although I'm not sure that it was the complete or most accurate tests that were run. We're doing a gluten-free trial now and I'll see what happens.


Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11

Son: ADHD '06,

neg. CELIAC PANEL 5/07

ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08

ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08

Gluten-free-Feb. '09

other food allergies

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I tend to place more value in how a food makes you feel. If there are clearly symptoms from ingesting that particular food (or a marked improvement from eliminating it) a positive or a negative result on a test isn't going to change that.

Hi Cheri,

I tend to agree with what Julie said--and she summed it up better than I could :)

I don't really have any additional advice for you, but I wanted you to know that I completely understand your feelings on this and I hope that the testing will yield some useful information for you.

Your daughter sounds like a smart young lady :D


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Thanks, Patti! I :wub: your avatar, it's beautiful!!

Still waiting on the test results, but I have talked more and more to Carleigh. I think if it is what she wants to do, then DH will go along with it.


Mom of:

Carleigh~ 10 years old, allergic to wheat, milk, peanuts, strawberries, and many EAs. She is currently soy-light and egg-light ~ celiac testing inconclusive by allergist.

Gluten-Free since 10/05 She's a gymnast. : )

Nick ~ 13 years old with no known allergies.

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Carleigh has not ever been scoped or been to a GI. After the wheat allergy diagnosis, I asked them to test for celiac. They did and she had three of the five markers. They said that if we wanted a defininitive diagnosis, we'd need to see the GI. We decided not to because at that point we had already taken her off of wheat and seen the positive response of no more vomitting, the eczema was going away, and the poop troubles were resolved shortly thereafter.

I just don't know.

If your talking about the regular celiac panel markers I believe it's almost certain she has celiac if they show up positive, especially the first one listed below.

Are you talking about T-transglutaminase IgA, antigliadin Abs IgG, and antigliadin abs IgA, T-transglutaminase IgG, and Endomysial Antibody IgA???

Are these the tests that were taken?


Joni

Dx'd with Celiac Disease 8/01/07

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If your talking about the regular celiac panel markers I believe it's almost certain she has celiac if they show up positive, especially the first one listed below.

Are you talking about T-transglutaminase IgA, antigliadin Abs IgG, and antigliadin abs IgA, T-transglutaminase IgG, and Endomysial Antibody IgA???

Are these the tests that were taken?

I'm going to pull out her file, but I think so.


Mom of:

Carleigh~ 10 years old, allergic to wheat, milk, peanuts, strawberries, and many EAs. She is currently soy-light and egg-light ~ celiac testing inconclusive by allergist.

Gluten-Free since 10/05 She's a gymnast. : )

Nick ~ 13 years old with no known allergies.

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