MominWA
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I wanted to update again- My son is still in pain, but has gained weight and all his organs are functioning well. He just had a repeat endoscopy with totally clean biopsies and a normal TTG IGA. We started a formal gluten trial (my son really wanted to, Celiac specialist said ok), and he is showing no response to gluten. I realize he might be a "silent" celiac...
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I wanted to post another update, as my son's symptoms returned on the gluten-free diet and I think we may have another diagnosis. He had complete and sudden recovery after 8 weeks gluten-free, was well for 4-5 weeks, then came down with a cold. After 4-5 days of the cold, abdominal pain, fatigue and dizziness returned and he has now been sick again for 7...
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He had no improvement for almost 8 weeks after starting a gluten free diet (even had to be hospitalized again for weight loss with feeding tube). He improved rapidly around week nine, about a week after I started B1, choline and high vitamin D as suggested on here. I assume if we give him gluten he will likely get sick very quickly again? It's...
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Update on my son's case- We finally met with a pediatric Celiac specialist and they are not convinced 100% that it is Celiac (sudden onset of severe symptoms, low TTG IGA (4-5, < 3 normal). He wants us to plan to do a gluten challenge, more blood tests and another scope. I'm worried about the challenge but also worried that he might have be misdiagnosed...
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We are going to be gluten free at home. My husband has been trying to do the gluten challenge for the celiac panel, so he's been eating some pre sliced wheat products with our old gluten-y toaster, but otherwise we are all eating gluten free. It would be nice to know if I can eat at work events or while traveling without fear. And to know if I have had 4...
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No, he hasn't. He will get a Celiac panel when he goes to the doctor next Tuesday.
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I have to admit I was not eating as much gluten as I should have been for a gluten challenge. I was probably eating enough gluten every three days, instead of every day. I guess I assumed my results would be very positive or very negative, not ambiguous. I have never had any GI issues and we ate gluten often for three meals a day before this. I made my own...
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He is doing much better, thank you for checking @wheatwacked ! It is such a relief. I would say he is 95% better, he is starting to build up strength and endurance again, and is back to reading and making stop motions. School starts in two weeks and so does soccer, he is really excited for both. We will keep up the supplements. I really can't thank everyone...
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I am pretty confident that he has celiac at this point. He did have a positive biopsy, and we did the genetic test too, he has the DQ2 gene. The doctors keep saying that it is normal to not see improvement for 3-6 months.
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I am continuing the B1 supplements. It is hard to pinpoint what has helped him make modest improvement over the last week or two- we upped vitamin D, started the B1 and Choline all at the same time. He has had his glucose tested often and shows no signs of diabetes.
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When he was first diagnosed, I read a lot about common vitamin deficiencies and malabsorption, and immediately started him on a liquid B complex. I only gave him that for 1 week, after which we were able to test for B12 and B6. His B12 was okay, and B6 was high. At the time, I thought it was because of the week of supplements, but it is clear that that is...
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Looking over this again, it still seems unlikely that the high B6 was caused by high dietary intake and the brief supplementation. We are obviously avoiding the nutritional yeast for now. We have not tested for Taurine. We will be getting a homocysteine test this week. We are also doing a GI map test through his naturopath, another ANA test that is more...
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I guess that is why I am concerned- based on the amount and time I supplemented B6 levels shouldn't be that high. I am concerned there is some sort of metabolic or organ issue that is causing B6 to accumulate. Although I did just realize that he was eating a lot of B6 in nutritional yeast, which we sprinkle on popcorn (one of his favorite snacks). He...
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His B6 levels came back higher (although that could just be variation in testing. Here is the B6 timeline: I supplemented with liquid B vitamin complex for about 1 week, at 1/3 the adult dose (20 mg B6 per dose for him, which is a safe dose from what I read). First test for B6 was taken the day I stopped giving him those. His B6 measured 168 ug/L (normal...
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Thank you. Do you continue to take these at these doses after the gut has healed? Do you get tested periodically?
