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- Denise I posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease0Celiac Disease Dietician
I am trying to find a Celiac Dietician who works with the Celiac Disease Foundation. They don't have to be located in my area because I can do video visits. Can anyone help with this? -
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- Nacina replied to Nacina's topic in Related Issues & Disorders314 year old with Celiac & EOE still suffering...
Well, that's a big question. When he was seeing the nutrition response testing dr. that changed each time we went in. He hasn't been seeing him regularly for theist ten months. When he had a horribly week in March I started him back on the 4 that were suggested to keep him on. Those are: Standard Process Chlorophyll Complex gluten-free, SP A-F Betafood gluten... -
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- Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms7Waiting for urgent referral.
Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this. When in pain before I was seen by a number of gynacologists...
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Well, that's a big question. When he was seeing the nutrition response testing dr. that changed each time we went in. He hasn't been seeing him regularly for theist ten months. When he had a horribly week in March I started him back on the 4 that were suggested to keep him on. Those are: Standard Process Chlorophyll Complex gluten-free, SP A-F Betafood gluten-free, SP Tuna Omega-3 Oil gluten-free, And Advanced Amino Formula. He also takes a one a day from a company called Forvia (multivitamin and mineral) and Probiotic . Recently he had to start Vitamin D as well as he was deficient. -
Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this. When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting. Wishing you well with your recovery. Many thanks
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By knitty kitty · Posted
Welcome to the forum, @Nacina, What supplements is your son taking? -
By knitty kitty · Posted
@BluegrassCeliac, I'm agreeing. It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together. If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well. If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug. So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms. High dose Thiamine was used in patients having cytokine storms in Covid infections. Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/ -
By BluegrassCeliac · Posted
Hi, Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO, like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B
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