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4 Year Old Daughter Having Biopsy Monday Any Advic
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What a long process this has been. My daughter has been suffering with very low iron (2) since last July. At that time my dr felt that it was related to her diet. A very good friend recommended that she have a blood test for Celiac disease but my dr said that she didn't have that. Long story short after months of pleading and lots of sleepless nights we just found out her blood test was positive. I am scared because my dr still feels that my daughter doesn't have celiac disease. She has never has diahera (sp) or any complication to gluten. She does have a big belly and is very small but contiues to gain weight. The level was 57 in her blood (told normal was 0-10) so I am pretty sure that this is what it is but am wondering if anyone elses child has presented with low iron and it the gluten-free diet has made a difference.

Thanks.

Paula

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My 4 year old daughter was just diagnosed 2 weeks ago. I would encourage you to go through with the biopsy even though she isn't having the intestinal problems. With Ashlee it was not the iron, but rather slow growth we noticed and tried to find out what was causing it. Everyone told us if it was celiac disease there would be clear abdominal issues and we would know. Well, finally in Feb she started having diarrhea and losing weight. Since she was so small to begin with, losing 3 pounds had her down to skin and bones and finally after 4 weeks the Dr. refered her to a specialist who made my heart sing when he started asking questions I knew referred to celiac disease! I was so sick of hearing "I'm sure it's viral!" Her Dr. was in shock, she was also sure it was not celiac disease. I really wish I could have avoided the last 2 months and seeing my daughter get that sick. Just because your daughter is not having diarrhea now, doesn't mean it won't be coming, or that she doesn't have celiac disease. The good news is that now after 2 weeks gluten-free, Ashlee is looking and feeling much better!

Michelle

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    • Thanks.  This is very helpful.  Our first post diagnosis grocery store trip took several hours, just trying to read labels to make sure everything is safe.   Our son loves bread and this going to be the hardest part. 
    • i would agree with most of your assessment but overall the popular chefs are very aware. Ed Kenny at Town did have  gluten-free options on the menu.  Mavro's will fix something special given advance notice but its expensive.  excellent but very expensive.  Alan Wong is very aware and will have his staff prepare something as well.  We did find many options at both Oahu  whole foods -- mostly  with tofu. the only thing  there is to be aware of cross contamination with things  next to it.  they make a great gluten-free southwestern tofo dish which is great but not if its sitting next to anything with gluten. Its not whole foods but people use the smae  spoons and tongs i found more at   down to earth in peal city than by  University ave  
    • Hi,  I'm in KOna but my kaiser doctor just retired  who was pretty good about it. I dont know of a specialist here  but most of hte kaiser docs wil test you if thats when you need to talk to them about. good luck  
    • Yes.  And wouldn't it have been nice if your doctor had tested you for Celiac disease before you went gluten free? Then you would know if your issues are Celiac or not.  That would help you know how careful you need to be, what other illnesses and problems to look for, whether you might be passing a genetic disease on to your children, if you should look for another cause of your symptoms, etc  
    • I would be very careful in giving this kind of advice, she is in an advanced stage. I was there and one additional symptom that I was getting was a strong urge to commit suicide so eating gluten for three months might not be the way to go for some people. If a gluten free diet stop the problems them gluten is the problem or a least part of it. I eliminated MSG from my diet because I notice that the common denominator for some products that affected my well being was MSG. I eliminated oats because I notice that I would get canker sores every time I ate it. Wheat is what affect my brain the most, irritability gets uncontrollable, my mental capacity greatly diminish, rash in my arms appear, can't sleep,etc. Barley makes my stomach groan, and constipated. Will try testing how Rye affect me some later time. 
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