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Testing Please Advise


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5 replies to this topic

#1 Beantree

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Posted 26 February 2004 - 06:36 PM

My 3 yr old got a referral to see a pediatric allergist today.

I suspect she has issues with gluten.

I need advice on what I need to ask for when we see the allergist. What do I need to know and what do you wish you knew when your kids were getting tested.

thanks
Shannon
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#2 kejohe

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Posted 27 February 2004 - 05:40 PM

Hmm, there are differences between celiac disease and gluten/wheat allergy. It seems to me that digestive issuses are more common with celiac disease and for that you might consider a gastroenterologist rather than an allergist. Whereas skin issues and other allergy type reactions (hives, breathing difficulty etc.) are more common with wheat allergy, and that would be for the allergist.

What kind of indicators does your daughter have? That might determine what kind of specialist you need to look for?

Also, the only thing our gi specialist did for us was to confirm our peds dx. After that we never really saw him again, and all our checkups go through the ped, so if yours is willing to do the testing for you, you may not need a specialist at all.
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Kathleen
Son has been gluten-free since December 2001

#3 wclemens

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Posted 01 March 2004 - 11:41 PM

Shannon, When my newborn grandson began having severe reactions to his milk formula, we changed him to soy, and I immediately sent away for Enterolab.com's "full spectrum" home test kit, which tests for whether he carries the Celiac gene (I have Celiac Disease and allergies to milk, dairy, casein, whey, egg whites, and yeast), is gluten sensitive, and is allergic to milk and dairy.

I sent his stool sample and gene swab from the inside of his cheek back to the lab by FedEx, and within 3 weeks they emailed that he carried a copy of the gene for Celiac, was gluten sensitive, and was allergic to milk and dairy.

Since then my husband's and brother's tests have come back negative, but my sister does have Celiac. I am working to get as many people in the family tested as possible. The full spectrum test runs $368 and the gluten sensitive only test runs $118. I trust Dr. Fine to be thorough, since he also has Celiac.

Hope this helps. Always, Welda
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#4 Beantree

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Posted 03 March 2004 - 06:52 PM

This does help.

Ok here is the story, pull up a chair cause it has been a long three years.

My daughter was born and I exclusively breastfed her. Well she had what the Dr diagnosed as colic. I thought that was bunk and knew there had to be a reason for the gas and crying. My dh has a family history of dairy problems. Lo and behold when I was off of dairy for about two weeks, she was better. So no dairy...fine I can live with that. I went to soy milk.

For a year, it was soy milk for me (still breastfeeding) and no dairy for either of us. Shortly after her first bday, I started noticing signs of food allergy again. Ring around the anus, crying fits and greenish stools. What in the heck could it be??? I was so vigilant. Well after she had a reaction to stir fry one night, I realized it was soy. No more tofu or soy milk. Fine, can live with that.


Well she has always been small. I am a small person (cultural) and my Dh is a small person. No big deal. So she is petite.

But there are other signs that are alarming me... she has diarhea often. She has some pitting at the gumline and chipped a tooth. My Dh and I both have VERY VERY good teeth, we eat a primarily whole foods diet and she does not get candies or typical junk food as I will not let her have artificial colorings in her food. She weighs 26.5 pounds at 3.5 years and is 37.25 inches tall. She is also cranky and says her belly hurts.

I am not sure if the belly thing is true, i think it is sometimes. She has been on this "ooh I am so sick" parade when she has to do something she does not want to. I know part of it is show but I am not convinced that ALL of it is show. She is a very lively and imaginative child.

I am going to ask the allergist for a celiac panel. I need this to come from a Dr. who will gain the respect of my Dh's family. My SIL has a masters in Nutrition, so they all think that my daughter has these problems because she does not get enough calcium from dairy in her diet. I love them very much but they do not believe that she has a problem. Not many of the family members do. My mom let me know that they are freakin laughing at me behind my back. GRRRR!!!!!

Many of them are diabetic, some have died from unexplained kidney failure (with diabetes). UGH!!!!!! anyway, that is the end of my rant.


I know what tests I want done and the doctor is simply a tool for getting them.

thanks again
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#5 hillary_henry@yahoo.com

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Posted 05 March 2004 - 10:35 AM

Hi
I have a five year old she weighs 35 lbs. I had the same problem no one would believe me when I said she just wasn't right. I continued to take her to the doctors after many visits to the doctors they did a blood test for her it came back positive for celiac. I wish you all the best it took me a year to finally get her diagnosed (two blood test, both positive and a biopsy later) they discovered her Villi was completely flat. Ronnis's symptoms:no weight gain, white floaty stool, diarehea,vomiting, fevers, muscle and joint pain and black rings under her eyes. I hope this information helps ask your doctor for a blood test.

Hillary
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#6 Beantree

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Posted 05 March 2004 - 10:23 PM

Thank you Hilary!

I know what I want and wont stop till I get it.

Our consultation appt is in 2 weeks and I cannot help but to cut down on the gluten foods.

I know I am not supposed to.

UGH! I am so confused. We eat a VERY healthy diet. I am the "wholefoods freak" in our family and think that I provide very well for my families diet. But all of this is really making me doubt myself.

I have a hard time getting dd to eat and today we went to a bday party. They had hotdogs. She has not had bread in a very long time. well she snarfed down this HUGE nathan's beef hotdog in NO time. She behaved as if she had not eaten in days. I almost wanted to cry. We do not eat hotdogs here because I cannot bring myself to buy processed meat. But now I am second guessing myself.

My mother in law insists that it could be that we eat too much fiber. I am just so confused about food anymore. For a moment, I wondered if perhaps I made "normal" kid food she would eat it. I mean, am I doing her a disservice by giving her nuts and huumus with veggies as snacks???

I hate this and I feel like I am failing my daughter. I just want some answers.
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