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Lost

haley12mom

Entry posted by haley12mom

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Hi Everybody,

Celiac.com Sponsor (A13):
 My 12 year old daughter has been diagnosed through labs from Interolab with gluten intolerance. Her numbers are very high. She has been ill for two months and even out of school. I'm home with her daily while she trys to get through a school homebound program. My concerns and questions are as follows:

She has been on a strict gluten free diet for about 4 weeks with no cross contamination as far as I know. She still experiences severe stomach pain that quickly leads to nausea and vomiting followed by migrane like headache and hours of severe stomach pain. She's wiped out each day till 1 or 2pm and sometimes is feeling pretty good til right after dinner when we begin this aughful process again! She's been to the Gasto and been tested for everything else excluding any problems except acid reflux (which I suspect is due to much vomiting) Her blood and urine labs are always normal. We've done the emergency room three times for unexplained pain and/or the stomach pain. When she's given various meds for all these symptoms - they seem to make her worse. SO......I'm LOST because everything I've read and the research I've done seems to always say that people start to feel much better fairly quickly or at least have fewer BAD days while giving their bodies a chance to rid itself of gluten. I'm so worried because she just isn't getting better! I would appreciate ANY experienced feedback - Is :( she just going to be this sick for a long time?????

Thank you,

Haley12mom

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4 Comments

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TracyB
I'd encourage you to check out the pre-diagnosis forum. They may be able to help you. Some feel Enterolab is not an exacting science - others swear by it.

If she has celiac and is still sick, she could still be getting gluten unknowingly - you may need to educate yourself on cross-contamination and gluten in products that you don't realize are there.

You may want to see about getting a celiac panel done - go see her doctor. She would need to be eating gluten though for it to be effective.

Good luck,

TracyB
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Anna and Marie
My sister and I thought we were gluten free for the past three years but we were both very sick, and I mean very sick. We found out that there was malt flavoring in our cereal and that we have other allergies along with celiac. We are both casein(lactose, milk) free, legume free, soy free, and egg free. hopefully you find out soon, and I'll be praying for you both. It is oh so painful. We're still recovering so it is still occasinally painful. God Bless,
~ Anna
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spicenator3000
She needs to begin a clean slate as soon as poossible. No processed things from stores what so ever. This is what I've had to do. I have been figthing and now have learned 2 1/2 years later that FRESH fruits and FRESH vegetables and FRESH caught fish/seafood are the only way to go. Except red snapper fish...not sure why but that will give me gas build up like nothing before.

Keep it fresh, no bottled spices from stores, no pills from anyone, no nothing.
Keep it simple, wash all fruites and vegetalbes. Wash white rice grains (carbs), wash vegetables (nutrients/vitamins), wash fresh caught/wild fish (salmon has much nutrients and fats, shrimp holds the iodine for the thyroid which is a necessety to avoid thyroid disorders). Keep bottled/ozoned water on hand.

I learned the harder way, Non-Hodgkins Lymphoma cancer about the size of a grapefruit developed in my chest cavity between my heart and lung. Celiac disease is intense.
Learn to cook like the old days, just no store packaged things. Not even soda pop, coffee, tea, etc.

The system will gain health, kick out the toxins, and recooperate on this diet. My system had to be totally restarted like this after chemo/radiation treaments. It'll work.

If you have any more questions, please feel free to contact me sun2007gw@yahoo.com
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Karrera
I hope that when you say she has been tested that they have done an endoscope and or colonoscopy. This is the safesty way to be sure there isnt a bigger problem with her GI system.
Many people with gluten intolerances also have other food sensitivities. The most common are dairy (Casein protine in milk and dairy) and sugar, processed with sugar especially. There are lots of other food sensitivities she could have as well. There are food sensitivity tests that a naturalpathic dr. can do, non invasive. Not the same as an allergy blood test or test for celiacs, this may give your daughter a better look at what her intollerences are.
good luck, I hope she feels better with a diet free of any processed foods.
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