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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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    • Below is copied & pasted from this thread:   My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE.  I would recommend him to the whole, entire world.  I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having.  I wish all doctors were like him.  I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out.  He's not like that.  Good luck to you.     There are recommendations on this thread too:  
    • I never worried about cross contamination because i was originally told i was just intolerant. after going gluten free i felt so much better up until this last march. dairy and fructose have been giving me problems but both lactose and fructose test came back negative.  this is what my gi doctor emailed me today 
    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
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