OBXMom

Why don't you call your doctor's office and say you won't be able to sleep until you find out what the range is? I don't have any confidence that they would know, since your doctor was so misinformed about celiac, but I bet they'd find out and tell you. In a quick search on this site I found your son's number would be in the low normal of some ranges, and...

There is definitely a link. I have read that all diabetic children should be tested for celiac, as an alarming percentage of them have it. Autoimmune diseases in general tend to cluster, meaning having one puts you at risk for developing others. My son has vitiligo in addition to celiac. It is just a few white patches on his skin, and he is so pale that...

Thank you both for your help. I will add what I learned, too, in case anyone in the future does a search with a similar question. Carnegie Deli was worried about cross contamination in their sliced meats, but recommended the tuna and chicken salads. Dallas BBQ said their roasted chicken is safe, and recommended asking for a baked potato instead of the...

My son did have joint and bone pain, and it took about two years of gluten free living for it to stop. I kept wondering if he could have another autoimmune problem, it was scary. I wonder in his case if it was partially the rapid bone growth that caused the problem. He was a small, slow grower and immediately began to grow faster when he went gluten free...

My son's tummy bugs were worse before his celiac diagnosis, and have gradually disappeared (knock on wood). He still is susceptible to stomach pain unrelated to viruses. For him, it has been constipation - not that we were aware of, since he was still "going", but which was found by xray, and difficulties with other foods. The constipation is unlikely...

I'm sorry your little guy is having such a hard time. Have you seen an allergist? I would look for a pediatric allergist who specializes in food allergies, if you haven't already seen one. With the constant congestion, even if it is celiac disease, there is probably an allergic component going on. Many times celiac and allergies do go hand in hand, and...

My daughter is traveling with a school group to New York, and they are scheduled to eat at the Carnegie Deli and Dallas BBQ. Does anyone know of any gluten free options at either of these places? She is a little intimidated about asking for gluten-free foods, and I am trying to make it as easy as possible for her. Also, if anyone happens to know of...

This is one of those many days when I wish I had a medical degree. Many of the symtpoms you describe could definitely be due to celiac disease, others, I'm not sure about, but that is just my ignorance. Nothing is harder than waiting for those specialist appointments, is it? At least you are armed and ready with all your facts and observations. Definitely...

Jennifer, I am so sorry that your children have had such a tough time. I remember those days before my son was diagnosed with celiac disease when he constantly had "tummy bugs". It was only when a nurse I was talking to over the phone said, "It doesn't sound much like a virus to me" that my light bulb went on. I thought, she's right, it must be something...

Your daughter sounds like my daughter used to be, and I felt really sad for her as I read your post. We pulled out the stops to deal with my daughter's organization issues in middle school. I found a young counselor who had ADHD herself and she helped my daughter a lot. We also had meetings with all her teachers together, and they were very helpful. My...

Did you make a formal request in writing for a 504 plan, and was a meeting held that determined your child is ineligible? According to federal law, an eligibility meeting must be held, and you must be notified when it is held, in response to any request for a 504 plan. Since celiac disease is not specifically listed under section 504, you may have to make...

Two inches growth in three months is awesome! I don't know whether thyroid treatments can result in this kind of growth, but celiac children who are treated can definitely have growth spurts. My son went from 25% in height to 50% within 6 months of diagnosis. His constipation did not go away right away, either, and he is still on miralax. He also has...

I can certainly understand your concern, if you have been gluten free for 6 months and still have such a high number. My son started in the 200s, and after a year he was down to 60 - still not in the good range. It took another year to make it down into the safe single digits. Our GI doctor said that the higher the number is, the longer it can take to...

While we are on the subject, celiac disease also can cause delays in tooth development. The dentist said my 10 year old is about 2 years behind. I'm just happy that he is expected to catch up. I know this doesn't answer your original question, LJ Mom. I agree with whoever said the doctor is probably confused. Maybe he was confusing gluten with milk...