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Recent Activity
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- Michelle Amirault-Packard replied to ChrisDun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease6Intermittent Fatigue
He should definitely have his vitamin D and Vitamin B12 checked. I have celiac and i always felt tired, sometimes i described it as dopy.My vitamin D is always low at times extremely low which can affect you. But I also did some research and contacted my doctor to see if she checked my Vitamin B12 and She said she didn’t check my vitamin B-12 because a... -
- ShariW commented on Scott Adams's article in Additional Concerns7Is Domino's Gluten-Free Pizza Safe for Celiac Disease? (+Video)
This was Domino's gluten-free pizza. I do not have problems with corn, rice, oats or dairy.- celiac disease
- cross-contamination
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- Scott Adams commented on Scott Adams's article in Additional Concerns7Is Domino's Gluten-Free Pizza Safe for Celiac Disease? (+Video)
Scientific Response to Dr. Osborne’s Claims on Rice and Corn "Gluten" Dr. Peter Osborne, a doctor of chiropractic (DC) and clinical nutritionist (DACBN), has argued that prolamins in rice (oryzenin) and corn (zein)—often called "gluten-like" proteins—may trigger immune reactions in celiac disease, despite not containing the same toxic sequences as wh...- celiac disease
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- Scott Adams commented on Scott Adams's article in Additional Concerns7
Is Domino's Gluten-Free Pizza Safe for Celiac Disease? (+Video)
Yes, and it is safe for celiacs, as is corn gluten (zein), etc.- celiac disease
- cross-contamination
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- knitty kitty replied to Zepplyn's topic in Gluten-Free Foods, Products, Shopping & Medications16Dr. Reddy’s Sandoz sumatriptan gluten-free?
I suggest you eliminate dairy from your son's diet next. Cow's milk protein, Casein, can trigger tTg IgA antibody production, the same as gluten, because casein contains segments of proteins that resemble gluten protein segments. Mucosal reactivity to cow's milk protein in coeliac disease https://pmc.ncbi.nlm.nih.gov/articles/PMC1810502/ I...- 1
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By Michelle Amirault-Packard · Posted
He should definitely have his vitamin D and Vitamin B12 checked. I have celiac and i always felt tired, sometimes i described it as dopy.My vitamin D is always low at times extremely low which can affect you. But I also did some research and contacted my doctor to see if she checked my Vitamin B12 and She said she didn’t check my vitamin B-12 because a wasn’t Anemic and the normal protocol is , if you are not Anemic they don’t test for B-12. She had no problem doing the test for me and it came back super super deficient . So I was given a shot of B12 once a week for 4 weeks and I give myself 1 shot intramuscular once a month now for 18 years. Once your B12 is low it can take a long time to bring it back up and sustain it. I think it took about 6 months to get a decent number and about a year to get it right. I do get my Vitamin D checked but not yearly more like every other year because it is a more expensive test and I tend to always be low. I do take a vitamin D supplement but I would talk to your doctor before taking a supplement to make sure you don’t take too much especially if you are already taking a multivitamin. Because too much D can also have some bad side effects. Celiacs tend to be able to take a higher dose due to our digestive and malabsorption issues but always talk to your doctor before taking. Other things could be making him feel extremely tired like new allergies like pollens, animals, molds etc.. sleep apnea is a huge one( cause extreme fatigue) and some medications. Just other things he can have checked! Good luck -
By knitty kitty · Posted
I suggest you eliminate dairy from your son's diet next. Cow's milk protein, Casein, can trigger tTg IgA antibody production, the same as gluten, because casein contains segments of proteins that resemble gluten protein segments. Mucosal reactivity to cow's milk protein in coeliac disease https://pmc.ncbi.nlm.nih.gov/articles/PMC1810502/ I cannot consume dairy products. Some people find they can tolerate A2 dairy without a reaction. Corn is another frequently hard to tolerate food because the protein zein in corn also resembles the protein structure of gluten. Do research in Dr. Derrick Lonsdale and TTFD thiamine. Taking TTFD really can make a dramatic difference, speaking from personal experience. https://hormonesmatter.com/energy-deficiency-asd/ Keep us posted on your progress! -
By Scott Adams · Posted
It sounds like you're doing everything right with your gluten-free diet, yet still experiencing significant discomfort, which must be frustrating. Since your stool sample came back normal but symptoms persist, pushing for further investigation—like a colonoscopy or biopsy—is a reasonable next step. You might also want to discuss the possibility of additional conditions, such as IBS, microscopic colitis, or other inflammatory issues, with your doctor. Tracking your symptoms, diet, and triggers in detail could help identify patterns. Don’t hesitate to advocate for yourself—if your current doctor isn’t addressing your concerns, seeking a second opinion or a referral to a gastroenterologist could be beneficial. You’re right to seek answers, and I hope you find relief soon. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: -
Hi all, I was diagnosed with coeliac in August 2020. This was via a blood test, as it was during COVID, so I’ve never had a biopsy or colonoscopy or anything like that. I have been following a gluten-free diet since and would expect to feel much better, however, I am still experiencing issues with my bowels. Very strict, so I know there’s no cross contamination etc. It usually seems to be after I have had a bowel movement, my bowels feel on fire, cramping, sore and very uncomfortable. I know it isn’t normal, and isn’t right and I have saw a doctor before, I provided a stool sample and apparently everything was fine- but I know it isn’t. I am just wondering if anyone else experiences this? What would you advise I do in regards to seeing a doctor, I was thinking of asking for a colonoscopy or biopsy, I just want to know what is going on and why I’m still experiencing this. Any advice is welcome and appreciated.. thank you.
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By elizabethhousworth · Posted
Thanks. My son has been on B2 for two to three years now. I found literature about B1 earlier and put him on a B1 supplement, but not thiamine tetrahydrofurfuryl disulfide specifically. He also gets D and Magnesium. He goes to his doctor in June and I am going to ask for bloodwork to look for any deficiencies. What I suspect is that he is having a gluten-like reaction to the proteins in other grains. It is well known that a small percentage of celiac patients react to the protein in oats. Oats are in gluten-free Oreos, so we removed them. He got a little better. The science with oats is pretty solid. My son's nutritionist knows about it and it is easily found in PubMed. I suspect my son is reacting to something else. The next thing that I only just removed was corn, at least things with corn protein. I need to give that a couple of months. If that doesn't work, I will try to replace his cheese with goat-milk cheese, although that will be hard. My son was migraine free for over a year on a strict gluten-free diet before this past fall. I can test his foods for gluten and I have given in to diet rigidity. He eats my homemade refried beans and rice for lunch every day, so his rigid diet contains pretty healthy components. Given his antibody levels (tTG-IgA very low) and that I tested everything under the son that he ingests when his migraines returned and nothing tested positive for gluten, I think he really is gluten-free. So my personal working hypothesis is that he is having a reaction to a similar protein, one in another grain. However, the neurologist sees migraines come and go in lots of normal people, so it might just be that he is now having multiple (3-10) migraines monthly and it is hormonal or weather-related or something that is entirely distinct from an antibody reaction. I just would like them to go away again, as would he. Thanks again! Elizabeth
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