how do i get a diagnosis? and how can i tell if celiac dis. is probable?

User - posted on 11/09/2008 ( 5 moms have responded )

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hello wise and informed fellow mamas

my daughter has been diagnosed with some kind of childhood asthma and was perscribed inhalers.
her case is that mucus clogs her lungs and her lungs then shut making it hard for her to catch breathe etc and so she coughs continuously.

now, i know that dairy and wheat can cause excess mucus. i took her off dairy and it seemed to help a bit but still she has lots of troubles with coughing. i want to take her off wheat but it seems SOOOO hard. we eat wheat every day in almost every way! and she LOVES to eat.

is testing a simple procedure or does it cause a lot of stress?

and what are some tell tale signs?

she has always had a "bloated" tummy, but i always just chalked it up to chubbiness because she's always been robust.

i appreciate any and all feedback about this...I'd Love to leave the corticosteroid prescription behind if at all possible.

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Jennifer - posted on 04/15/2009

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My son was tested because I asked and his blood test came back that he does not have celiac, but he does.  The blood test is up to 80% inaccurate.  My doctor told me that my son did not need to be on a gluten free diet although he went from the 75% in weight to the 5% in just 9 months.  After a year of being gluten free he is now back up to the 50% on the growth charts.  Go with your gut instinct....momma's intuition is strong believe it.  The symptoms vary and there can be a lack of symptoms and still have celiac.

Görel - posted on 11/16/2008

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Tricky!
But do not take out the wheat in her diet, if you are to do tests on her she needs to stay on a wheat diet to ensure that the results are correct.

Kathy - posted on 11/12/2008

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There are many symptoms to Celiac, yet many kids have no symptoms whatsoever. That would be the case with my 3 year old. Diarrhea and failure to thrive might be classic, but my daughter has constant constipation and is in the 95% of height and weight! She gets a croupy cough easy and we do breathing treatments with her, but no worse than her sisters. Each of my 3 girls has had pneumonia at least twice and my oldest is only nine. I, personally, have never had pneumonia, but my husband has weaker lungs which cause respiratory issues that must have passed to the girls, so I would look possibly to the father or genetic lines to see if there is a link that way, too.



Point being, I wouldn't look to celiac for coughing symptoms, but Celiac seems to take no classic look with anyone. Some kids are diagnosed as early as 1 and some people are not diagnosed until their 60s. Some are impaired with any amount of gluten, some can have gluten with no reaction. If I were you, and you want to be sure, I would do genetic testing on yourself and the father. If you guys carry the gene, then there is a huge clue about your baby. If you don't, then there is no possible way she could have this disease.



Also, about her eating, my 3 year old loves to eat, too. I have learned that sometimes the very things that they are allergic to, they crave. I don't mean an anaphalactic type allergy reaction, just a reaction such as triggering their appetite or triggering reflux, or diarrhea, or constipation, rashes, coughing, etc.



She very well may have celiac, but she may very well not. I have been told in our search to find out why our daughter has inflammation in her small intestine, that one of the biggest clues we could find is to do genetic testing on ourselves, because celiac is highly genetic and highly familial. Blood tests can be misleading and biopsies are apparently not the gold standard anymore because other food allergies, parasites and viruses can cause inflammation, too, but genetic testing cannot be disputed.



Good luck and keep us posted. And keep kissing that baby. She will be just fine. I know this because I believe my baby is going to be just fine, too. You are a courageous and honorable person to be so dedicated while having to do it as a single parent. Good, job, mom.

User - posted on 11/10/2008

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Tonya,
thanks for the info...i have only seen our family doctor about it so far. this is a new thing for me. Malia seems to get sick a LOT more than her sister and I do...and the croup-cough lasts for soooo long. the doctor (who doesn't know us well as shes new because we moved) automatically told me its this asthma thing.
my gut tells me that i have to treat the reason, not just the reaction. and one of my first thoughts was celiac...BUT it sounds like (and the more i do research) that Malia actually doesn't have symptoms of this disease. she does not have diarreah, and that seems to be a big one.
she only gets fevers when she gets sick and starts the croup-cough (which is actually about once a month or so)

i am waiting on an appointment with a traditional chinese practitioner. i think he may be able to detect some underlying issues.

thanks for your reply!

[deleted account]

My sons symptoms were failure to thrive (he is very small for his age), non stop diahrea, blood in diahrea, and fevers everyday for about 6 months. He was incredibly sick. He had lots of tests run and blood taken before they had any clue what it was. He never had any of the mucous problem. It purely affected his intestinal tract.

Have they tested for cystic fibrosis? Also, are you seeing a pulmonologist or an allergist for the asthma problem? I found that with my daughter who has asthma the pulmonologist treated a lot differently than the allergist. I hope this helps a little.

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