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Thanks for all the input and things to consider. He is eating a ton of gluten. Toast for breakfast, sandwich for lunch, granola bars, pretzels, etc. He knows he might have celiac, but for now we have not made any changes to his diet. He is taking a multivitamin, and I also have him taking a Vitamin D and calcium supplement, thinking the leg pain might be from low D. I myself am very D deficient (taking 50,000 units every 6 days, and this has not improved since dx, even with strict adherence to the diet) and I ache a lot.
My plan for now is to ask the new GI doc to re-run the complete celiac panel, and not leave anything out. While he is taking blood, I'd like to ask he test for vitamin deficiencies. Besides D, iron, and the B's, does anyone have any other suggestions of what to check? Still undecided about the endoscopy. I guess I'll see what he says.
My family doctor admits he knows nothing about celiac, but even still, I was shocked he would recommend gluten-light. I pretty much stopped listening at that point because he was obviously ignorant. I will take some of his time next time I see him to set some of his misconceptions straight.
He does take a daily inhaled steroid to prevent asthma attacks. I have long assumed this was suppressing his growth. Me testing him for celiac was simply following up on the odds of him having it, as a family member, and trying to explain the leg pain.
As far as Dr. Faasano goes, why would 4 out of 5 not be sufficient? What else would a positive biopsy indicate? And what about silent celiac? Not everybody has symptoms, right?
Well, our appointment is in a few weeks. I'll post a follow up in case anyone wants to know. I always think about the people whose questions I read on here and wonder how it turned out for them.
Thank you for responding. I hope others will as well.
My son is ten, almost 11. He weighs 52 pounds. He is a foot shorter than every other kid in his class.
As far as the elevated ttg possibly being from something else, according to blood work, he doesn't have diabetes and his thyroid is fine. He has no symptoms of Crohn's. Besides asthma and seasonal allergies, leg pain, and being very small for his age, he is healthy.
I'm ok with doing the biopsy after we get the ema, if the results point to the need. If a doctor is willing to give an official diagnosis without the biopsy, I'm fine with that too. I do want an official diagnosis though, as opposed to going gluten free without one. My boy is an obedient kid-- if his doctor tells him he has celiac and can't have gluten, he will strictly obey that. But I think he'll struggle with it in his head if he thinks it's just a hunch or there's nothing official. I also would like to have the diagnosis to help with dealing with the school (cafeteria, etc).
I was diagnosed four years ago, and have been watching my son carefully. After reading a lot in May (Celiac Awareness Month) I was encouraged to have him tested. His is very small for his age-- 1% for height and 3% for weight, but both his parents are small. He also complains about his legs hurting. His doctor chalked it up to growing pains, but this kid hasn't grown more than 2 inches in the last 2 years. He doesn't have any GI symptoms, but neither did I.
Got him tested, and unfortunately they didn't do the EMA, but here's what I have:
Gliadin Pep AB IGA 6.0 ( < 20 units) Note: this test was performed using a deaminated gliadin peptide assay. Negative < 20, weak to mod pos 20-30, positive > 30
Gliadin Pep AB IGG 16.1 < 20 units Note: this test was performed using a deaminated gliadin peptide assay. Negative < 20, weak to mod positive 20-30, positive > 30
We have an appointment coming up with a GI doctor at Cincinnati Children's, and he is continuing to eat gluten, as usual, in spite of our family doctor's advice to "go gluten light". I am assuming that with a positive TTG, he does have celiac. My fear is that they will either want to do an endoscopy and come up with a false negative because he is just starting with the disease, or they will want to "wait and see" if he gets worse.
I just thought I'd put it out there to this wonderful group of celiacs and see what anyone else thought.
The brand I have purchased is called Alpine Aire. I have not eaten them-- I keep them on hand for emergency preparedness reasons. The packaging states Gluten Free, but doesn't state whether it was prepared on shared equipment.
Before I realized I had celiac, my synthroid had to be adjusted frequently. I was all over the place, hyper, then hypo. Now that I have been gluten free for three years, I am much more stable, and the amount I take has decreased. I used to be on 137 mcg, and now I am on 100 mcg and holding steady. My endocrinologist said I was not absorbing the medicine as well as I should have, due to the damage celiac had caused to my small intestines.
I have Graves' disease, and my thyroid has been irradiated and killed completely. I am dependent on the medicine to replace my thyroid.
I do experience this. I have noticed it is worse when I eat too many carbs, so I have been intentional about eating more protein and it has gotten better. I also have thyroid problems, and that has given me a fast/fluttery heartbeat in the past. It seems once you are aware of it, you notice it all the time, and then the anxiety about it kicks in, making it worse!