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Toddler Diagnosis

Kasey'sMom

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Kasey'sMom Enthusiast
Kasey'sMom
Posted

Hi everyone,

I'm new to the board but I've been reading for some time now. I just wanted to give a little information about us. I have a toddler who has been having IBS symptoms for many months now. She also has a rash that started about the same time. The rash seems to get much worse when she eats gluten. We took her to two dermatologists who said it "kindof" looks like psoriasis and "kindof" looks like eczema. None of the creams they've given us seem to help. She also has inhalent allergies to mold and grasses. We've been doing a treatment for candida for awhile now. The dermatologist told us to stop feeding her wheat. We started limiting wheat in December and now are gluten-free. We didn't realize that she needed to been eating gluten for the tests. Her allergist tested her for antigliadin antibodies and we've just gotten the results. Her antigliadin IgG antibodies are VERY high, but her antigliadin IgA was low (Even though the totoal IgA was normal.) Her Ped. wants her to stay gluten-free and I'm all for it. Her allergist wants to do more tests but she's so sick on gluten. I thought about doing the stool test, but I didn't know if you have to be consuming gluten or not? Does anyone have any suggestions?

Thanks so much for the suggestions.

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mrsfish-94 Apprentice
mrsfish-94
Posted

I would do the stool test. I would if you can afford to..do the mouth swab test from Entrolab (?) The lab mentioned on this site. It is the only one that will do it. It costs around $450.00 I think to do all the tests they offer. I do think one is a stool test. My husband and I haven't been able to afford to order the tests. But we will soon. I think that is the best way. And from what I have read...you don't need to eat gluten to get the right results. I hope this helps.

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tarnalberry Community Regular
tarnalberry
Posted

If she still has the rash, and it's DH, it can be directly biopsied.

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Kasey'sMom Enthusiast
Kasey'sMom
  • Author
Posted

Thanks so much for the information. We had our first appointment with the ped. dermatologist last week. The doctor decided not to do a biopsy right now but they did scrape an area to culture for bacteria. The doctor said the rash didn't look like DH but poriasis and eczema. I really think something else is going on. I'm having a hard time with our extended family. They don't think that gluten intolerance is a big deal now because her IgA was low and the dermatologist said it's not DH. We ate out today coming back from a trip and she must have gotten gluten. Shortly after eating she was sick and was sick several times on the way home. I felt so bad for her.

Thanks again for the help,

Kasey's Mom

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Guest nini
Guest nini
Posted

sounds like part of what was going on with my daughter. Since I already had a positive diagnosis of celiac for myself, her pediatrician was more amicable about not running any more tests after the blood test was inconclusive and the ped. GI was a bit of a jerk and said "oh it's only IBS, the chances of her having celiac are really rare" even with a mother that def. has it and her having def. symptoms??????? My personal opinion is that if the child is doing much better on a gluten free diet and gets sick on gluten, then the obvious answer is to keep her off of gluten. My daughter's ped. also said that as far as insurance (and pre existing conditions) is concerned, that it's better to just label this as "gluten intolerance" then to call it Celiac in her permanent record. Why go through the added expense of more testing (and potential trauma) if you already know that gluten is not good for her? My question is, do you have to know that it's Celiac or DH? Talk to her ped. about it further, see what the benefits would be of having a definitive (maybe) diagnosis... because even after all the testing is said and done you still may be getting inconclusive results. Yes my daughter's ped had sent us to a ped. GI, but she was also smart enough to weigh what he had to say and make her own call as to what was going on. She was open to receiving the information about celiac that I provided to her, and was of the opinion that further testing was unnecessary. My daughter was 3 at the time, now she's 5 and is doing fantastic.

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Guest nini
Guest nini
Posted

next question, does your daughter play with playdough???? it contains GLUTEN and until we figured that out, my daughter kept breaking out in weird rashes all over her body after playing with playdough. I now make her a gluten-free version.

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Kasey'sMom Enthusiast
Kasey'sMom
  • Author
Posted

Thanks Nini,

I would be really interested in your play dough. We did notice that her rash got much worse this fall when she started playing with play dough. She would hold the play dough to her face and I'm sure she ate some of it! We took play dough away a couple of months ago and she's begging me to play with it. I have IBS and have never had testing for Celiac. I think I'm going to call my doctor and seen if I can be screened. Her ped. said we could go to a GI doctor but the GI doctor would be very definite about a biposy. We still have to do the EMA andf tTg blood tests. After the way her digestive system reacted last night, I can imagine giving her gluten again, no matter what the diagnosis. I think you immune system is just really challenged right now.

I 've been hearing a little about the insurance issue with Celiac Disease. Her doctor put on the blood work order from the the diagnosis was sprue. He also listed sprue on our check out forms. Do insurance companies deny you for coverage if you have Celiac Disease?

Thanks so much for your ideas.

Kasey's Mom

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Guest nini
Guest nini
Posted

I had one insurance deny me coverage because I had the celiac diagnosis. I ended up having to get a policy with the same company that my group insurance had been with before my boss was forced to get rid of our insurance benefits because of the insane rising costs. I would have been able to get my husband and my daughter covered with this other company, but they refused to allow me to be on the policy. I told them to bite me. I said obviously you are not aware that treatment for this is simply strict adherence to a gluten free diet, and now that I'm properly diagnosed and on a gluten-free diet, I am healthier than I have ever been. They still denied me coverage. Jerks. This was through USAA through their health ins. division, can't remember the name of that company.

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Kasey'sMom Enthusiast
Kasey'sMom
  • Author
Posted

Nini,

That absolutely stinks! The insurance company doesn't even have to pay for med.'s. I'm finding every day that so many people don't even have a clue about gluten intolerance. I asked the doctor about the diagnosis for my daughter and he said he had to list sprue for the insurance to cover the bloodwork, talk about a double edged sword! Thanks again for sharing your story.

Kasey's Mom

P.S. I thought about ordering the gluten-free playdough but I was wondering about making it myself. Do you use rice flour instead of wheat?

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Guest nini
Guest nini
Posted

I use corn starch and rice flour among other things. Do you want me to e-mail you the recipe?

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Kasey'sMom Enthusiast
Kasey'sMom
  • Author
Posted

Thanks Nilsa!

Take Care,

Kasey's Mom :)

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lcmcafee2 Newbie
lcmcafee2
Posted

We have 3 & 4 year olds that are possibly celiac disease. They see the pediactric GI tomorrow. Could you send me the play-dough recipe? They just love to play with that stuff. Thanks :D

Laura

lcmcafee2@verizon.net

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Guest nini
Guest nini
Posted

your welcome, it's sent. :D

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VydorScope Proficient
VydorScope
Posted

Hey.. can I get that recipe too please! :) Heck if you want I can post it on a website and you can just link ppl to it instead of you having to email it out to everyone....

vydorian@gmail.com

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Guest nini
Guest nini
Posted

sent. it's in HTML format already I believe! LOL!

I don't mind... I used several other play dough recipes to come up with this one, and when I make it to sell I don't try to make a profit on it, I'm just trying to help out busy families... Let me know if you have any questions on it.

It stores really well in those glad reusable/disposable containers and lasts a long time. It can be rejuvenated fairly easily too.

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VydorScope Proficient
VydorScope
Posted

Thanks got it! I do not have any of the ingredients, but will try it when I get them. :)

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VydorScope Proficient
VydorScope
Posted

As promised its at..

Open Original Shared Link

:)

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Guest nini
Guest nini
Posted

very cool! Glad to have helped!

I make enough for my daughters entire class so that the teachers don't have to keep her separate from the other kids when they are playing with play dough . I did this at the beginning of the school year and the play dough is STILL in great shape with only a few weeks left of school.

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VydorScope Proficient
VydorScope
Posted
very cool! Glad to have helped!

I make enough for my daughters entire class so that the teachers don't have to keep her separate from the other kids when they are playing with play dough . I did this at the beginning of the school year and the play dough is STILL in great shape with only a few weeks left of school.

My son starts pre-school in stepember, and I was thinking of doing jsut exactly that. :)

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