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Tons Of Questions

brandonsmommy

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brandonsmommy Newbie
brandonsmommy
Posted

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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eliana Newbie
eliana
Posted

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.

brandonsmommy Newbie
brandonsmommy
Posted
  • Author

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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    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      Hi everyone do you know whether when you get a draft cider if there is a chance that it runs through the same tubing as a beer did sometime prior?  the reason I’m asking is that I’m trying to eliminate a source of hidden gluten that I think hits me about once a month. And I have a suspicion it might be cider from the draft at certain bars. When I am out, if I decide to drink, I usually order a cider brand that I know is gluten free.    what I’ve noticed is that a couple times when I got a draft cider, I got symptoms of being  glutened that night and the day after. This doesn’t seem to happen with all times I drink cider. I had a draft at a very clean brewery and I didn’t react from that, which is what made me start to wonder. Does anyone know if this is a possible source of getting glutened? I am like 99% sure that this is the cause and I think I’ll switch to bottle/can only from here on out, but would be interested if others experienced the same thing (or work in a bar and know how this works). Thanks!
    • cristiana
      Struggling to get into a good pattern

      By cristiana · Posted

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      Thanks so much for the responses. I will urge him to go for further investigation. To be 48yrs old and develop a new allergy.. ugh, As if celiac disease isn’t enough! 
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