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Need Help In Dallas

dianezman

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dianezman Newbie
dianezman
Posted

My daughter's problems constantly get worse. Doctors dont seem to think there is too much to worry about.

She has severe reaction to gluten.... severe weight gain 3-5 pounds a day, not being able to stay awake, focus problems, severe lack of energy. Has been hospitalized 3 times for being severely impacted. Does anyone know someone in the Dallas area to help. She was tested last summer, results came back negative but she was also gluten free for two weeks prior to the test. Her symptoms improve when she is gluten free. She is 13, and around other children... when offered regular food like sweets has problems saying no and then we go through all the problems again.

I really need a doctor that I can take her too that will give us some guidance.

If anyone can help, you will be an awnser to my prayers.

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celiacgirls Apprentice
celiacgirls
Posted
My daughter's problems constantly get worse. Doctors dont seem to think there is too much to worry about.

She has severe reaction to gluten.... severe weight gain 3-5 pounds a day, not being able to stay awake, focus problems, severe lack of energy. Has been hospitalized 3 times for being severely impacted. Does anyone know someone in the Dallas area to help. She was tested last summer, results came back negative but she was also gluten free for two weeks prior to the test. Her symptoms improve when she is gluten free. She is 13, and around other children... when offered regular food like sweets has problems saying no and then we go through all the problems again.

I really need a doctor that I can take her too that will give us some guidance.

If anyone can help, you will be an awnser to my prayers.

You could try Enterolab. It is a stool test you do at home. It is more sensitive than the standard blood tests. You can find it at www.enterolab.com. It is in Plano, I believe, but it is just for testing. That is how my 8 year old daughter got her diagnosis. Her symptoms were not as severe as your daughters but she was tested 4 or 5 times since she was 1 and they were all negative. She felt better being gluten free but having the results from Enterolab made me realize we needed to be very strict with it.

Or you could just have her do the diet. Some doctors diagnose gluten intolerance based on the diet alone. Since she is a teenager, you will have to work with her to get her to buy into it. Maybe the lab results would convince her. I make sure I have lots of gluten-free sweets and "junk" food around so my girls do have lots of treats and don't feel like there is nothing they can have.

If you do use Enterolab, ask them for a doctor in the area who supports their testing. A lot of doctors are skeptical of them and celiac disease in general, I think. My daughter's GI said she didn't think my daughter needed to do the gluten-free diet even though we have a family history of biopsied celiac in my grandmother, my daughter feels better eating gluten-free, and we had the Enterolab results.

dianezman Newbie
dianezman
Posted
  • Author

thanks so much, I will look them up. I think my son has it to... just that his symptoms aren't so severe as my daughters. I can not thank you, and anyone else that helps us enough. We are so discouraged, and scared for our daughter. She is started to fight depression over it. Again, thank you!!!!!!!!!!!!! :D

KayJay Enthusiast
KayJay
Posted

We go to Dr. Baker he is in Carrolton off Josey Lane. I think he is very informative about Celiac and he might be able to help you too. He is a great ped. GI doctor. PM me if you are interested and I will give you his office number. I am not sure if I am allowed to post it on here.

Good luck

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      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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