MominWA
-
Posts
25 -
Joined
-
Last visited
Content Type
Profiles
Forums
Events
Blogs
Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by MominWA
-
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...
-
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...
-
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...
-
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...
-
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...
-
No, he hasn't. He will get a Celiac panel when he goes to the doctor next Tuesday.
-
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...
-
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...
-
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.
-
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.
-
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...
-
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...
-
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...
-
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...
-
Thank you. Do you continue to take these at these doses after the gut has healed? Do you get tested periodically?
-
Thank you for bringing up the different measurements. His was 34 ng/ml. I am increasing his dosage to 10,000/day- I've been doing the gels 3x per day, after meals. He seems to have a little more energy today. The dietician was helpful in validating my exclusion diet and gave the OK to feed him all non-gluten foods but to be wary of dairy while he is still...
-
We tested the B6 again this week, but haven't gotten the results back yet. I gave him liquid B vitamins for about a week (ending on the day he was tested the first time), not sure if that is long enough for such a high reading, but I am hoping that was it. I will update when we get the results back. The high B6 really scared me as far as managing supplements...
-
Thank you. I picked up some gluten-free Thiamine HCL supplements this morning (and Choline), he just had his first dose. I had him try the squat test last night and he passed. I wish the GI doctors told me not to start supplements before getting him tested for vitamins. Even our naturopath didn't mention that.
-
Thank you for your reply. I read about the symptoms of GI Beriberi and thought that might be the solution- it really describes all his symptoms, so we had him tested for B1 on 7/1, which was about 2 weeks after I had stopped giving him B vitamins (after I got the high B6 results back). His B1 was 105. Maybe I should ask to get it tested again? Maybe...
-
He did have an elevated AST on one test at the hospital, and I read that the Reglan can cause liver issues. We just ran a liver panel again and everything came back in the normal range. However, he has had protein in his urine for the last three urine tests, and this last one had "amorphous crystals" in his urine. His stools are back to normal color today...
-
I had his doctor put in another test for Vitamin D- we have been supplementing since we found out it was low. It is now at 34, so it has gone up, but not by much. I will talk to Dr about getting a large dose.
-
I'm not totally sure on the fiber- I've been using "my fitness pal" to track calories and meals- looks like he's getting about 2/3 the recommended amount for his age, He was extremely active before the illness- swim team, soccer, cross country, generally bouncing around the house. Movement increases the abdominal pain, he can only walk a couple blocks now...
-
I was worried about the Reglan side effects. Reglan is gluten-free. We tried stopping it after two weeks (what the hospitalist recommended) and stomach motility decreased again- he became constipated and started vomiting again. We restarted and food started moving through him again. His PCP has recommended weaning him off it- we are going down to half dose...
-
Thank you for your reply. They did do a full panel for the antibodies- total IGA (191, range 52-221), AG Ab IGA (6, range 0-19), and Ab IGG (16, range 0-19) were normal. They confirmed with biopsy- here is the biopsy report: "duodenal mucosa with intraepithelial lymphocytosis and villous blunting." and "The histologic findings in the duodenal biopsies...
-
I am really struggling watching my child not recover with the gluten-free diet, and would appreciate any input or advice. My 10 year old son had a sudden onset of symptoms with what we think might have been a GI virus (although he had had frequent illnesses the 6 months prior, which might have been because of Celiac). He woke up one morning with nausea, vomiting...
