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DQ2/DQ8

Lizzylulu

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Lizzylulu Newbie
Lizzylulu
Posted

My daughter is two years old and has been consistently small for her age. Last April she became very ill and lost three pounds. That doesn't sound like a lot but that left her weighing a mere 18 lbs. She seem to just drift away from us and become withdrawn around others. She would go hours without sleeping and nap for a quick 5 mins. She was an amazingly light sleeper and if she was woken up she would be very crabby. I became sick after having our third child. I was diganoused with celiac disease. Then a light came on, must be what's wrong with our two year old! So we put her on a gluten free diet and amazing things happened. Her hair started to grow, she smiled more, her eyes which were always the darkest-grey suddenly got specks of yellow & green in them.

When we finally took her to the pediatric GI, we were told she had to be tested and must go back on a regular diet. This was awful! She complained about stomace pain everytime she ate, her skin lost all its color she was VERY irratible. Finally the day of the endo arrived, Doc told us that the small intestines were worn away in patchs. It didn't look good. Finally we got a call, she is DQ2/DQ8, highest catagory. Her endo results were normal. She doesn't have Celiac Deisease. This makes no sense to us. How could she have worn away villi (patches), respond so well to a gluten-free diet and have both of the needed genes and not be celiac?

Can someone give me some advice? Im so fusterated!

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kareng Grand Master
kareng
Posted

My daughter is two years old and has been consistently small for her age. Last April she became very ill and lost three pounds. That doesn't sound like a lot but that left her weighing a mere 18 lbs. She seem to just drift away from us and become withdrawn around others. She would go hours without sleeping and nap for a quick 5 mins. She was an amazingly light sleeper and if she was woken up she would be very crabby. I became sick after having our third child. I was diganoused with celiac disease. Then a light came on, must be what's wrong with our two year old! So we put her on a gluten free diet and amazing things happened. Her hair started to grow, she smiled more, her eyes which were always the darkest-grey suddenly got specks of yellow & green in them.

When we finally took her to the pediatric GI, we were told she had to be tested and must go back on a regular diet. This was awful! She complained about stomace pain everytime she ate, her skin lost all its color she was VERY irratible. Finally the day of the endo arrived, Doc told us that the small intestines were worn away in patchs. It didn't look good. Finally we got a call, she is DQ2/DQ8, highest catagory. Her endo results were normal. She doesn't have Celiac Deisease. This makes no sense to us. How could she have worn away villi (patches), respond so well to a gluten-free diet and have both of the needed genes and not be celiac?

Can someone give me some advice? Im so fusterated!

Get a copy of the endo report and the pathology report. Also, get any blood test & genetic test results. If they give you any trouble, tell them you are taking it to another doctor. At least you need to give it to your pediatrician. Read them and tell us here what they say. I'm assuming you are in the US. If you have any trouble getting the records, PM me. We can throw some legal phrasing at them. Most offices are easy to get copies from. Just talk to the person who answers the phone. They will probably transfer you to another clerk. If you are there for an appointment, ask the nurse to make you some copies.

Start out asking nicely and friendly.

mommida Enthusiast
mommida
Posted

You have enough for a "probable" Celiac diagnoses. You have positive for 2 known Celiac gene test and a positive improvement on a gluten free diet and villi damage as noted from the endoscopy with biopsy.

What was the doctors explaination for the villi damage? Were the biospies tested for Eosinophils?

Unfortunately there are other diseases that have associated damage from gluten or other "trigger" food or airborn allergens.

ravenwoodglass Mentor
ravenwoodglass
Posted

You are a diagnosed celiac, she responded very well to the diet and became ill when you reintroduced gluten, she has both DQ2 and DQ8 plus with the endo "Doc told us that the small intestines were worn away in patches" no matter what the doctors tell you IMHO this child needs to be gluten free. False negatives are not uncommon especially in children. You don't need a doctors permission to make her gluten free and if the GI doctor doesn't give you an official diagnosis to make things easier when she goes to school perhaps your ped will as the ped will see the changes in her health and growth.

Lizzylulu Newbie
Lizzylulu
Posted
  • Author

You are a diagnosed celiac, she responded very well to the diet and became ill when you reintroduced gluten, she has both DQ2 and DQ8 plus with the endo "Doc told us that the small intestines were worn away in patches" no matter what the doctors tell you IMHO this child needs to be gluten free. False negatives are not uncommon especially in children. You don't need a doctors permission to make her gluten free and if the GI doctor doesn't give you an official diagnosis to make things easier when she goes to school perhaps your ped will as the ped will see the changes in her health and growth.

Thank you for this. Its nice to have the support of others.

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