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ItchyMeredith

Enterolab Results For My 3 Year Old- And Vent

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I am a confirmed celiac and I am trying to figure out if my 3 year old son is one as well. We just got his Enterolab results and I think we have our answer. What do you think???? I would really love the advice from people who have been through this.

Here is a list that I have been keeping to help illustrate the problem:


DH positive skin biopsy June 2007

Blood test positive July 2007

Gluten Free- since 6-23-07

Vegetarian since 1991

Stay-at-home Mommy to:

Kellen 2-05

Cameron 10-06

Scarlett 5-09

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That's a tough one. I agree, I think you have your answer. While we went the route of biopsy for my 7yo recently, I'm not sure I would take the same step for a 3 yo, I don't know. My initial reaction would be to not do it, partly because I do believe the "gold standard" for diagnosis will be different by the time your son is a teen, and partly because I think if he grows up knowing that he has celiac, it won't be something he would be likely to question later, I don't know for sure on that one though.

Good luck in whatever you decide.


Blessings,

Amy, mama to 3 awesome boys!

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His malabsorption score is really high. I would take him off gluten immediately before he develops other things besides celiac disease, like diabetes.

Because he has been gluten light for so long, the likelihood of a biopsy being negative is extremely high, in fact, quite likely. Do you really want to keep feeding him food that is poison to him for a biopsy that is likely going to be useless?

Also, I agree with Breila, that it is quite likely that by the time your son is a teenager, the biopsy will long be outdated as the 'gold standard' for celiac disease.


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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You guys are right. I hate feeding him gluten. I would rather feed him a plate full of bacon and fries!!!-and I'm a vegetarian!

Our pediatrician sent in a referral to Dr. Michelle Pietzak at Children's Hospital today. I will talk to her about our options. I think I will keep him on gluten till I talk to her. She may not even want to go the route of a biopsy- hopefully. I know she doesn't put a lot of weight in Enterolab results but they have to have some influence on the path she wants us to go down.

Thanks Again!!!


DH positive skin biopsy June 2007

Blood test positive July 2007

Gluten Free- since 6-23-07

Vegetarian since 1991

Stay-at-home Mommy to:

Kellen 2-05

Cameron 10-06

Scarlett 5-09

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WE chose not to do a biopsy for our DD. WE figured if she had a problem when she was a teenager then she could have a better understanding of how she is feeling, why she is feeling that way, and it will be her own decision to do a biospy or not and go through the pain. aNd who knows? things may change by then.

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I would do the biopsy. Not for the diagnosis, but because they may find other issues and so it's good to have it done to be sure nothing else is going on.

I'd go off all dairy, soy immediately as well because with such high malabsorption he is probably having antibodies to all kinds of foods and dairy and soy espeically can cause alot of problems.

Good luck!

Liz


Liz

Positive enterolab results 11/07:

-antigliadin IgA: 56 (normal <10)

-antitissue tTG IgA: 39 (normal <10)

-anti-casein IgA: 34 (normal <10)

-HLA-DQ: 2,1 (2,6)

Positive blood test IgA and IgG 12/07

Gluten-free Casein-free since 12/07

mostly soy free since 12/07

Diagnosed with adrenal fatigue 08/07

Diagnosed hypothyroid 01/08

Still have mercury fillings, high mercury and lead

Multiple chemical sensitivities

9 year old daughter positive enterolab test for gluten, casein, soy and egg with HLA-DQ 3,1 (7,6)--mostly exhibits behavioral reactions to foods including food dyes, MSG, aspartame

Mother passed away 3 years ago of adenocarcinoma of unknown primary. Two years prior had diarrhea causing her to weigh 86 pounds...Mayo clinic told her to take pepto bismol. NO test for celiac, lifelong hx of ulcers, osteoporosis. I now know she had the celiac gene (my dad has DQ1) and was probably undiagnosed her whole life.

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I never thought of soy being an issue. OMG

He has been off of dairy for years due to an allergy- I cringe at the idea of adding even more to his "can't eat" list but I will do anything to keep him healthy.

Poor little guy.

Thank you all for your opinions. I have no idea what I am going to do. Right now he is not on gluten. My husband strongly feels that we have the diagnosis that we need. I have come to terms with it. I truly believe that my little boy has celiac. I don't need another diagnosis to believe it either- I have just heard so many experts say that you really should push for the biopsy diagnosis. I think I have read too many books!

CRUD!

I wish it were easier! I never thought I would be thankful for my own celiac but I really truly am. If I didn't find out about my own celiac I would have never caught my son's. I shudder to think of the terrible issues that a lifetime of eating gluten could have caused him. I am so thankful that I am finding all of this out now! Who knew that and itchy rash would change all of our lives so completely!


DH positive skin biopsy June 2007

Blood test positive July 2007

Gluten Free- since 6-23-07

Vegetarian since 1991

Stay-at-home Mommy to:

Kellen 2-05

Cameron 10-06

Scarlett 5-09

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Just an update:

We probably can't get an appointment with the GI till late AUGUST!!! There is no way I am putting his little body through all the damage the gluten is causing that long. I have seen an amazing dietary response with him. We are keeping him gluten free. The GI doc and I will talk later about options.

THANK YOU all for your help!!!!

Meredith


DH positive skin biopsy June 2007

Blood test positive July 2007

Gluten Free- since 6-23-07

Vegetarian since 1991

Stay-at-home Mommy to:

Kellen 2-05

Cameron 10-06

Scarlett 5-09

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Just an update:

We probably can't get an appointment with the GI till late AUGUST!!! There is no way I am putting his little body through all the damage the gluten is causing that long. I have seen an amazing dietary response with him. We are keeping him gluten free. The GI doc and I will talk later about options.

THANK YOU all for your help!!!!

Meredith

Many specialists are very hard to get into in my city, as well.

Being celiac yourself, you know that regardless of the "official" diagnosis (celiac vs. gluten intolerance) the treatment is the same. And really - when they're rebellious teens a piece of paper isn't going to make much difference to them. They're going to cheat if they want to cheat - the best we can do is teach them to eat well and give them the info. I think more and more doctors will start accepting Enterolabs as time goes on, too. My pedi does. :)

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