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Jadesmom

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  1. Months ago, we saw a Celiac specialist (M.D.) who charges $400 per hour and doesn't take insurance. She said she wondered if she has SIBO because it can also cause villous atrophy (and maybe not even Celiac given her negative serology) and she put her on VSL3 probiotics. She took them daily for about 2 months. It did not help. She never had a breath test. I can't seem to find out who tests for this and if I can go through my insurance. Any suggestions? She has been on autoimmune Paleo for about 2-3 weeks but today we switched to SCD, without the initial bone broth introductory phase. SCD actually seems less restrictive than Autoimmune Paleo because you can have nuts and some cheeses/dairy. She feels particularly horrible tonight. Ugh. She has developed bad breath and a very bad taste in her mouth. She says her burps (she burps constantly and it gets really bad after eating) smell like passing gas. Could SIBO be causing this? I can't afford to keep seeing the Celic specialist every time I want a test ordered because she charges a fortune. Her regular pediatric gastroenterologist doesn't do the SIBO breath test, he just treats with antibiotics, meanwhile, my insurance won't pay for Xifaxan. He did call in Flagyl but after only two pills, her stomach hurt so we stopped.
  2. Thank you for your reply. Yes, all were normal except Vitamin D was low in April. Put her on liquid D supplements and her D was at a great level by July. She's incredibly difficult about taking supplements claiming everything "bothers her". She'd been off most grains (only brown rice and some tapioca) all along, nightshades, soy, all forms of dairy for months and very little refined sugar. As of almost two weeks ago, I have her off all grains, zero refined sugar, dairy, soy, nuts, seeds, and nightshades. So basically following Autoimmune Paleo. She seemed a bit better during the first week, but then caught a head cold and her gastric issues went South again. I wonder if it's from drainage, who knows. It's all so impossible. I felt that she needed plain kefir and yogurt for good bacteria (no sugar added), so we tried adding that for a few days this week. Maybe that was a mistake. I'm looking into getting her liquid multivitamins, as well.
  3. She never had a colonoscopy so we are repeating the endocopy and also doing colonoscopy in a few weeks to see if duodenal bulb villous atrophy is healed and look at lower intestines to rule out Crohn's or Colitis. ugh.
  4. Thanks for the suggestion. Celiac specialist and regular gastro do not believe it to be the issue. Asked for the medication to try it but gastro does not want to prescribe it.
  5. tessa25, she did not have every antibody test run initially (January), but did have TTG IGA, IGA and EMA and they were negative. This was prior to endoscopy in March. As of March, she's been 100% gluten-free and they didn't feel testing would be beneficial. Last month, I pushed for the full panel (every celiac antibody test now including TTG IGG, DGP IGG and DGP IGA ) even though she'd been gluten-free for almost 5 months to see if that could give us a clue. All were considered negative. DGP IGA: 4 DGP IGG: 14 TTG IGA: <2 TTG IGG: 3 EMA: Negative IGA: 108
  6. I hope someone can offer suggestions or ideas. My 14 Y.O. daughter was diagnosed with Celiac Disease in March. She's been strictly gluten free for five months (don't eat out, our family all went gluten-free at the same time and we only eat certified gluten-free or whole foods). She's been gluten-free for five months and there has been no improvement in her gastric issues or weight gain. Here is the story...she never had any gastric problems prior to this past December. She has struggled with a stubborn and chronic patch of eczema on her face above her lip for years and has always been slight. Around Christmas break she began to have chronic belching and reflux. It came on suddenly and out of nowhere. By early January she had abdominal pain and burning and I took her to the pediatrician who ran some allergy, Celiac antibody and HPylori tests. Celiac was negative, foods tested were negative and HPylori was positive. We were so happy to have an answer. She went on the triple therapy for HPylori (2 strong antibiotics and a proton pump inhibitor) for two weeks. She got worse and ended up with with an additional symptom of chronic nausea. She also lost about 10 lbs. from December to the end of January. She was already very thin at 96 lbs and 5'4 1/2. I pushed for an abdominal ultrasound which was normal. Took her to pediatric gastroenterologist who prescribed meds to calm stomach down. A few weeks later, she was still feeling miserable. Pushed Gastro for endoscopy. He found marsh 3b villous atrophy in one section of the duodenal bulb and referred to it as "mild" and gave diagnosis of Celiac and negative for HPylori. We were sad about the news but glad to get an answer and optimistic that she would finally feel better and started the gluten free diet the day of her diagnosis. Sooo, month after month she didn't get better. I pushed Gastro for more tests to rule out other conditions--stool test for giardia-negative and celiac gene test positive for HLA-DQ2 2 copies. Went to very expensive celiac specialist who suggested may be SIBO and recommended VSL3 medical grade probiotics. After two months, no improvement. Went back to celiac specialist who recommended digestive enzymes because it could be pancreatic enzyme insufficiency. Daughter claims enzymes gave her bad pains so had to stop them. Five months gluten-free and still has chronic nausea, bloating, gas, stomach pain, chronic belching, constipation (never had diarrhea at any point) facial eczema, fatigue, shortness of breath, no weight gain, no period in 8 months, gets extremely hot like a menopausal woman, feels like something is stuck in her throat. Her negative serology and not getting better are nagging at me that maybe it's not celiac? She is also dairy and soy free, by the way. Anyone have any thoughts? Help?
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