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Coping with Celiac Disease
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- MelissaClinPsyD replied to MelissaClinPsyD's topic in Coping with Celiac Disease8Refractory Coeliac Disease research to reduce anxiety
Thank you so much for your response kitty that is helpful to hold in mind. I am also doing a review on lived experiences of coeliac disease so your blog would be incredibly valuable for me to review, please can I have the link to it? -
- knitty kitty replied to Shining My Light's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms21Virus, celiac disease or both?
@Shining My Light, Yes, celiac is spelled differently in Great Britain. Yes, please do consider us as part of your support circle. I had a serious Vitamin D deficiency, too. I learned Vitamin D acts as a hormone when at levels between 78-100 nmol/L. Mine was in the single digits. I had been in declining health for years without answers. I... -
- Shining My Light replied to Shining My Light's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms21Virus, celiac disease or both?
@trents I’m pretty sure what I’m left with when separating celiac to other causes is my 10% being a virus. The one I had about 3 weeks before taking this TTG test. Everything I’ve read says type 1 diabetes, rheumatoid arthritis, hepatitis and some viruses are what could cause the elevation. The other blood tests I had I can compare things against. I... -
- Alibu replied to Alibu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms16Waiting on biopsy after positive bloodwork, but also not really believing this is real
@knitty kitty My whole family has migraines and I started getting them at age 19, so I'm not sure mine are related to gluten, although I do feel like obviously the more inflamed my whole system is, the more likely I am to suffer from more of these things. -
- knitty kitty replied to Alibu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms16
Waiting on biopsy after positive bloodwork, but also not really believing this is real
@Alibu, Just wanted to add... Migraines can be caused by thiamine insufficiency. I used to have them, regularly, but haven't since supplementing with thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and Magnesium Threonate. These forms get into the brain easily and really improve migraines. I do still get Ophthalmic migraines...
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By MelissaClinPsyD · Posted
Thank you so much for your response kitty that is helpful to hold in mind. I am also doing a review on lived experiences of coeliac disease so your blog would be incredibly valuable for me to review, please can I have the link to it? -
By knitty kitty · Posted
@Shining My Light, Yes, celiac is spelled differently in Great Britain. Yes, please do consider us as part of your support circle. I had a serious Vitamin D deficiency, too. I learned Vitamin D acts as a hormone when at levels between 78-100 nmol/L. Mine was in the single digits. I had been in declining health for years without answers. I had developed hormone problems and clinical depression among other symptoms. I corrected my Vitamin D deficiency with high doses to get my level up quickly. Yes, it's safe. Here's some studies done on high dose Vitamin D. https://pubmed.ncbi.nlm.nih.gov/34737019/ https://pubmed.ncbi.nlm.nih.gov/39125420/ https://pubmed.ncbi.nlm.nih.gov/35470105/ https://pubmed.ncbi.nlm.nih.gov/30611908/ My Vitamin D deficiency was just the tip of the deficiency iceberg. I was deficient in the B vitamins, too. Celiac Malabsorption affects all the vitamins and minerals, not just one. Here are some articles about how the B vitamins and even Vitamin D help lower anxiety... https://pubmed.ncbi.nlm.nih.gov/33848753/ https://pubmed.ncbi.nlm.nih.gov/35156551/ https://pubmed.ncbi.nlm.nih.gov/35851507/ https://pubmed.ncbi.nlm.nih.gov/35851507/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ -
By Shining My Light · Posted
@trents I’m pretty sure what I’m left with when separating celiac to other causes is my 10% being a virus. The one I had about 3 weeks before taking this TTG test. Everything I’ve read says type 1 diabetes, rheumatoid arthritis, hepatitis and some viruses are what could cause the elevation. The other blood tests I had I can compare things against. I’m going to give your article a thorough read. My support in my circle is very small at the moment. @knitty kitty I think before EGD I would like to do the DNA test. I’m going to start keeping a better journal also. I’ve read a crazy amount of these “articles” - these two I’ve not seen. Some articles spell celiac differently. Thank you for sharing! I’m gonna dive into those. I started seeing the functional medicine doctors from fluctuations in my hormones and major anxiety. Recently I realize it’s mostly health anxiety also so this is more challenging to depict real from imaginary thus all the research and the back and forth. I know anxiety to be a common symptom in perimenopause. I’ve fought it my whole life however. Likely due to lots of different trauma but seeing her was my last ditch effort to try something to avoid SSRIs, HRT, etc. She told me not to blame everything on my hormones when there could be an underlying problem, so she ran some tests to see if anything stood out. The TGG tests stood out. I do find it very interesting now that I think about it that I don’t desire bread, pasta and pizza. Sometimes yes, but mostly no. I guess I didn’t give that much thought. Also didn’t realize that those foods do contain more gluten than the tortillas and cake/baked goods. About 3 months ago I started ordering meal kits to make dinner easier. I went back over the menus that I picked. I have probably had bread and pasta a hand full of times over the last couple months prior to having that blood test. We used to get pizza every Friday and stopped doing that also. I’m all fairness about 2 months leading up to these blood tests I had less gluten containing foods than I thought. I’ve been praying for wisdom. Thankful to find some counsel from people who I believe have dove harder into this than most doctors have. Thanks for all the advice. It’s appreciated more than you know. 💕 -
@knitty kitty My whole family has migraines and I started getting them at age 19, so I'm not sure mine are related to gluten, although I do feel like obviously the more inflamed my whole system is, the more likely I am to suffer from more of these things.
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By knitty kitty · Posted
@Alibu, Just wanted to add... Migraines can be caused by thiamine insufficiency. I used to have them, regularly, but haven't since supplementing with thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and Magnesium Threonate. These forms get into the brain easily and really improve migraines. I do still get Ophthalmic migraines which are triggered by computer screens. It's permanent damage from nutritional deficiencies. An Erythrocyte Transketolace test is a more accurate test for sufficient thiamine. Keep us posted on your progress!
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