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Diagnosis Positive
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Well I promised I would post regarding my expedition to Children's Hospital in Los Angeles. I have very little positive to say about the office staff so I will keep my mouth shut, but Dr. Pietzak was wonderful once we were able to actually get in front of her. She was a wealth of information, took the time to listen to my daughter's very extensive medical history, all the while my two year old was playing devil child and bouncing off the walls(not the child with celiac disease, she was very well behaved, sat quietly and wolfed down a bag of gluten free pretzels). Anyway, given my daughter's off the charts positives on all the blood tests and her amazing reaction to being on a gluten free diet for over a month Dr. Pietzak felt comfortable officially diagnosing her with celiac disease. We need to get one more blood test to test nutrition levels but we are forgoing the biopsy. So, for anyone in the LA area that is looking for a specialist, I highly recommend Dr. Pietzak, but you need to be pretty tough and persistent to get an appointment in a timely manner. I look forward to learning as much as possible, this forum has been a wealth of information already.

Take care,

deb, mom to a newly diagnosed 7 year old.

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    • Acne are not itchy or only mildly itchy and they look like red bumps with or without white centers. The bumps are quite separated from each other. What did you start to eat after going gluten-free? More fruits and sugary foods? This can trigger acne.  http://www.ehealthstar.com/conditions/acne-vulgaris Dermatitis herpetiformis can be very itchy and the bumps are more close together and they tend to crust over.  
    • What about Xanthan gum?  It really bothers me, so I avoid most commercially processed gluten-free breads, etc.  Never bothers my hubby though.  
    • I use to get them before I went gluten-free.  I stopped eating oats because it also does give me canker sores and causes my toes to get cracked underneath.  
    • I had quite a few of the medical problems that you have before I figured out that gluten was the problem. I can’t do basic math or writing when I eat gluten also I get depressed, irritable, low energy, etc. The best route to go is to do an elimination diet and monitor how certain foods affect you. I eliminated MSG (Monosodium Glutamate), Nitrite, and oat based on the reactions that I get once I consume them. You must be disciplined on a gluten free diet, there is not such a thing as –It is just one cookie! If you can manage to go 100% gluten-free for three weeks and you see those problems going away, you will have a good idea if that is the cause of your problems. The blood test I did after being gluten-free for two years came back negative so the doctor just make me feel that I was crazy and making things up. I have a stool test done which came back with elevated igA also a gene test indicating I have two genes that code for gluten sensitivity. My lactose intolerance went away too, eating a lot of cheese now. Rash in arms? gone, Brown spots in teeth? Gone, Intestinal noises? Gone, Lack of bladder control? Gone, Constipation? Gone, and a lot others.   
    • Oh you're most welcome!  Another thing --- no steroids, oral or injected for 2 months prior to a dh biopsy. Lay off any topical steroid creams for 2 weeks prior. Really, stand your ground with them. It would also be great if you can get a friend or family member to go with you in case they take the biopsy from somewhere that you can't see such as the back of your neck. Your friend/family member can watch to make sure they don't take it directly ON a lesion. Do you have a primary care doc? You can also go to that doc & ask for a full celiac panel PLUS an eTG or TG3. 60% of people with dh test negative on the celiac blood panel but maybe you're one of the 40% who will test positive. It's worth a shot.
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