Rhyo9
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by Rhyo9
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The Appeal of Vaccine Treatments for Celiac Disease
Rhyo9 commented on Scott Adams's article in Diagnosis, Testing & Treatment
Thanks for this story; I needed some good news today. Is there any work being done on other ways to increase IL-10 or Treg function in Celiac? There has been research showing that mannose (the sugar that is popularly used for urinary tract infections) increases Treg function: https://pubmed.ncbi.nlm.nih.gov/32341776/ Stem cell-based therapy... -
Thanks for your input & for asking your doc about it. I will check her personal care products; she only rarely wears makeup (she did not go out much before the pandemic and now not at all). She doesn't purchase anything herself. There are old products she has left over from the 'before time', however. Another thing I have thought of is that we used to...
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Her liver enzymes were elevated just after she came home from the hospital but went down after a few weeks. Her integrative doctor (no longer sees him since he had IMO some really bad ideas) suggested NOW Liver Refresh, but we declined to use it since it includes a lot of different herbs - some of which are not well-studied. Instead I gave her MitoQ, which...
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For processed stuff I try to get gluten-free certified, but some items are just labelled gluten free; most of those claim to be batch tested. One exception was pesto which did not have any gluten ingredients - she had that one time a few weeks ago. The garlic salt we use is also not labelled gluten-free, but does not have any gluten ingredients. I tested...
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um, no - she is not cheating She has not left the house since mid-March except to go to her high school to pick up her diploma with her father and to her doctor's appointment, also with dad since she does not drive. Prior to the pandemic, she took food with her to school and social gatherings, including her college scholarship interview (which she won...
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Nausea and Vomiting Are Key Symptoms of Gluten Exposure in Celiac Patients
Rhyo9 commented on Jefferson Adams's article in Latest Research
@knitty kitty Thanks so much for the coupon information; I'm looking forward to my x-mas gift. Dr Costantini also did research on HDT and was apparently a great doctor to his PD patients - always available to answer their questions. It was so sad to hear about his passing from covid earlier this year - I hope others pick up the torch on HDT and... -
Thanks for you reply - I felt better reading it. I realize I had been overly negative about the results. She has regained all her weight (from 80 to 98 lbs; she's 5' 1") and is no longer vomiting or anemic. Sometimes she does experience early satiety, however, and she is tired much of the time and sleeps a lot. No oats - it seemed best to stay away...
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Nausea and Vomiting Are Key Symptoms of Gluten Exposure in Celiac Patients
Rhyo9 commented on Jefferson Adams's article in Latest Research
@knitty knitty Thanks for the information. The first source cites the book on thiamine by Chandler Marrs which I have wanted to get for some time, but it is terribly expensive. I may get it for myself for X-mas anyway. I am familiar with high dose thiamine from Parkinson's Disease forums; my father had Multiple System Atrophy [PD forums are more active... -
Nausea and Vomiting Are Key Symptoms of Gluten Exposure in Celiac Patients
Rhyo9 commented on Jefferson Adams's article in Latest Research
I wish I knew what would help you. I don't have Celiac - but what has helped me with GERD is cruciferous vegetables - broccoli sprouts and cabbage juice. The fiber from cruciferous veg can be difficult to digest, but the other compounds - most likely isothiocyanates (e.g., sulforaphane) and indoles - seem to have helped me and there is medical research showing... -
My daughter was diagnosed a year ago and we all went gluten-free - no gluten in the house; she was also diagnosed with Oral Allergy Syndrome. Her symptoms (mainly vomiting) improved after making appropriate diet changes and also using home HEPA air filters. However, a few months ago she developed a bit of a rash on her fingers that looks like dermatitis herpetiformis...
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What is MC? { I could Google it, but there are probably lots of things that MC stands for. }
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Nausea and Vomiting Are Key Symptoms of Gluten Exposure in Celiac Patients
Rhyo9 commented on Jefferson Adams's article in Latest Research
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Nausea and Vomiting Are Key Symptoms of Gluten Exposure in Celiac Patients
Rhyo9 commented on Jefferson Adams's article in Latest Research
I'm so thankful for research like this - thanks for reporting on it. ~ My daughter's main symptoms have always been nausea and vomiting, even before going gluten-free. She was admitted to hospital for intractable vomiting and weight loss and they misdiagnosed her with a rare eating disorder - ARFID. The gastroenterologist had scheduled her for an... -
Oddly enough, her blood tests showed good overall nutrient status*, which is perhaps why the doctors did not put Celiac high on the list of possibilities. It took almost 2 weeks to get the results of the antibody test and in the mean time they subjected her to what's called an 'aggressive re-feeding protocol' designed for anorexics. They made her eat a large...
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Thanks for the info on that and food sensitivites. I just now got to look at some of her medical files - her Marsh score was IIIA, whatever that means. I think her anitbody titre was around 170. She's home now. I was happy that she is now 82.5 lbs (5' tall), 2 lbs more than when she first went to hospital. ~ Thanks, again to all.
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Why Do So Many Women Get Celiac Disease?
Rhyo9 commented on Jefferson Adams's article in Research Projects, Fundraising, Epidemiology, Etc.
I noticed my daughter's Celiac symptoms seem to be worse in the luteal phase of her cycle (she's still in early stages of recover and unfortunately recently got glutened). This is apparently common for women with IBS, but I have not turned up anything on untreated Celiac and symptom severity with menstrual cycle. This is interesting & puzzling since women... -
My daughter was admitted to the hospital for intractable vomiting and weight loss, was misdiagnosed with an eating disorder and transferred to an eating disorders unit. While there, the results of her antibody test for Celiac came back positive, they did an upper endoscopy and biopsy and guess what - she has Celiac. They still insist that she has Avoidant...
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I talked to the Dr (the resident coordinating her care) just now on the phone and I think I stayed pretty reserved but told her to also call my husband. Angry women are often perceived (even by other women) as being 'hysterical' - even when their anger is justified. So I told her to talk to my husband as well. I think my husband's plan is to try to take...
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I would very much like to bring her all her food, but I'm pretty sure we are not allowed to do so. I'm at my wit's end - I'm thinking about getting her transferred to a hospital with a celiac center.
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Today she was served a grilled cheese sandwich at lunch and she ate a bite and realized they had used regular wheat bread. Now I'm wondering about the pasta earlier in the week... ~ How quickly do you notice results of an incident like this?
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How to make my kitchen gluten-free
Rhyo9 replied to Rhyo9's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Nope, cats are most definitely not supposed to be eating grains. I volunteer at a rescue shelter and they try to get the best food they can afford, but the main stuff they use contains grains. The cats that have special medical needs do get special foods, though. One poor cat had really bad atopic dermatitis from a corn allergy; luckily the vet figured it... -
How to make my kitchen gluten-free
Rhyo9 replied to Rhyo9's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Thanks for the clarifications. ~ @cyclinglady: It's just the three of us (plus cat*) and my husband thinks going gluten free might be a good idea for him, too. He's a gene carrier and he has thyroid problems. *oddly enough, the cat has his own Rx hypoallergenic diet since he throws up everything else. It was a long process of trial and error... -
Thanks to all for your suggestions; I'll be looking into them. I'll ask about possible gallbladder issues; she's had a CT scan and ultrasound, but I've not heard of a HIDA scan. ~ Her diet was pretty good before, even though her motivation to be vegetarian was primarily ethical, not for health reasons. I had been telling her in months prior to not...
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Sorry, I should have mentioned that she has been on a gluten-free diet since the blood work came back (I've lost track of time, but I think it's been over a week). What I meant to say is that other than being gluten-free, they have made no adjustments to take into account possible malabsorption or sensitivities (which I hope would be temporary) due to intestinal...
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My 17-yr old was diagnosed a couple of weeks ago after finally getting an upper endoscopy. She's been in the hospital for over a month after intractable vomiting and weight loss. First she was in a regular pediatric ward, then they moved her to an eating disorders unit after misdiagnosing her with an eating disorder. Fortunately, they had ordered a Celiac...
