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Tons Of Questions
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Hi everyone :D! My name is Tasha and I'm new to the site and I have some questions that I hope someone can answers for me. My son Brandon is 17 months and weight almost 21 pounds. His PCP referred him to an endo at 1 years old because he only grew 1/2 inch in three months and because his percentile weight went down from 80% when he was 2 months to 5% at 1 year. The endo didn't feel there was anything wrong with Brandon being that he grew 3 inches when checked at her office but they did some blood work anyway. Her office called and said that Brandons blood work came back slightly positive for a wheat and gluten allergy and referred him to the gastro who tested for celiec disease. Brandon doesn't suffer from diaherra unless he's sick, isn't irratable after eating wheat or gluten containing products or act like he has a stomachache, his stools are normal as far as i can tell, hes a happy kid and loves to run around and play but hates to eat. The test results that the endo did came back with the Aig count at 34 and the ENR(?? I'm not exactly sure of the initals) at 25. I haven't got the results back from the gastro but we are still very concerned. Are these numbers high? Why would the gastro do the same tests? Will the results change from day to day? Can brandon have an allergy just to wheat and gluten or does this automactially mean that he has Celiac? I was kinda in shock in the gasro office when he mentioned this disease and have tons of questions i didn't think to ask. I am just hearing of this disease and am trying to learn all i can so any info u guys can send my way is greatly appreciated.

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Exactly what were they testing for? Did they do IGg and IGa, and EMA? If so those numbers are pretty low for being celiac. That is what my daughter had done and her numbers were 131, 133, and negative. Thats the normal celiac panel as far as I know. Did your doctor mention doing an endoscopy? I am kind of in the same boat as far as not really understanding. My 15 month old daughter weighs 17 pounds 14 oz. as of today and they think she may have celiac but they are really pushing the endoscopy which makes me quite nervous. She is so little and frail and has been through so much. It has been 2 1/2 weeks since we got the results back stating she was positive for celiac and started the gluten free diet. There is definately something worng, but dont know if it is celiac or something else. She has a test for cystic fibrosis coming up. I guess we will wait on results from that before we decide on the endoscopy. We are also getting a second opinion. This is all so hard and taxing on you. May God bless you.

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Thanks for the great input. The gastro called today and said that the results came back negative for celiac and we're all glad. I want to thank everyone who writes on this forum. I came to your forum with tons of questions and walked away feeling reasurred that even if brandon had celiac it wouldn't be as horrible as I first thought. It made me see that this disease is not as uncommon as I thought and that you guys are great parents who love their kids very much. Thank you everyone and god bless you all. :D:D:D:D

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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