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Coping with Celiac Disease
Share stories, techniques, and information to help others deal with the disease and the gluten-free diet.
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Recent Activity
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- Scott Adams replied to Itsabit's topic in Dermatitis Herpetiformis13SkinSafe
Most toothpastes are naturally gluten-free, but this article may be helpful: -
- Scott Adams replied to Cathijean90's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease3
I’m terrified it’s too late for me😭
This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.): -
- Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis13SkinSafe
Thank you for your response. It has some good information for me to investigate further. In answer to your question about Vit D, yes, and it was normal. I am having the B12 level done today. Additionally, I am going to have a urine to test for iodine, after a correlation with it to dermatitis herpetiformis was mentioned in another post. I had read that in... -
- cristiana replied to Sunshine4's topic in Related Issues & Disorders5Neurologic symptoms - Muscle Twitching and Hand Tremors
I'd like to second supplementation. Around the time of my diagnosis and for a good while afterwards I had twitching muscles, including my face, as well as pins and needles and numbness. We do have tremors in my family anyway, regardless of being coeliac, so I can't really comment on that. If you can find out where you are with your iron levels and... -
- knitty kitty replied to Itsabit's topic in Dermatitis Herpetiformis13SkinSafe
Hello, @Itsabit, Your journey sounds very similar to mine. I'm very concerned about your diet since you say you don't eat a lot of meat, which is the main source of B vitamins. Nutritional deficiencies go along with Celiac Disease. Blood tests are not accurate measurements of deficiency states. The body robs stored vitamins from organs to circulate...
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By Scott Adams · Posted
Most toothpastes are naturally gluten-free, but this article may be helpful: -
By Scott Adams · Posted
This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.): -
Thank you for your response. It has some good information for me to investigate further. In answer to your question about Vit D, yes, and it was normal. I am having the B12 level done today. Additionally, I am going to have a urine to test for iodine, after a correlation with it to dermatitis herpetiformis was mentioned in another post. I had read that in my research as well. I am praying that I don’t have that! The dietary restrictions, esp when combined with eating gluten free are horrendous! Talk about malnutrition! Anyway, one step, one day at a time. I’m trying not to get ahead of myself. Not easy.
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I'd like to second supplementation. Around the time of my diagnosis and for a good while afterwards I had twitching muscles, including my face, as well as pins and needles and numbness. We do have tremors in my family anyway, regardless of being coeliac, so I can't really comment on that. If you can find out where you are with your iron levels and B12, that's a good start. I am not sure where you are posting from but in the UK normal lab results for B12 are quite a bit lower than in other countries, so you might find if you are borderline you will get some improvement by continuing to supplement that. I found taking magnesium also incredibly helpful against facial twitches. I don't know about you, but all these symptoms increased my anxiety levels as I was worried about them. That only served to make the symptoms worse. So it might be worth looking into addressing any underlying anxiety issues. I still notice that if I'm nervous, or worried, my blood sugar levels are down, some of the symptoms comes back temporarily. It's like there is still a bit of a weakness there.
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By knitty kitty · Posted
Hello, @Itsabit, Your journey sounds very similar to mine. I'm very concerned about your diet since you say you don't eat a lot of meat, which is the main source of B vitamins. Nutritional deficiencies go along with Celiac Disease. Blood tests are not accurate measurements of deficiency states. The body robs stored vitamins from organs to circulate in the bloodstream to supply the brain and heart. You can have deficiency symptoms before blood levels change. I have a hypersensitivity to sulfites, so much so that I had to switch my toothpaste to one that doesn't contain Sodium Lauryl Sulfate. SLS can cause oral irritation as a side effect, too. My mouth would burn and I avoided certain foods. Dapsone contains sulfites, as do antibiotics. Treatment with sulfites can precipitate a Thiamine deficiency disorder because sulfites cut thiamine in two making it useless. https://pubmed.ncbi.nlm.nih.gov/35506963/ https://pmc.ncbi.nlm.nih.gov/articles/PMC10506142/ I have an allergy to nickel, also. Zinc helps keep other metals in balance in the body. Zinc is also terribly important to skin health and oral health. https://pubmed.ncbi.nlm.nih.gov/8445075/ https://pmc.ncbi.nlm.nih.gov/articles/PMC11274920/ https://pubmed.ncbi.nlm.nih.gov/1977254/ Thiamine (Vitamin B 1) deficiency disorder symptoms and altered thiamine metabolism can occur after radiation or chemo. Thiamine and Niacin B 3 are important in nerve conduction. When I was very malnourished, I had paresthesia that made me feel itchy all over, and made my dermatitis herpetiformis extremely unbearable. The form of Niacin that causes flushing, Nicotinic Acid (not the same as nicotine in cigarettes) is beneficial because the flushing helps open the small capillaries in the skin which allows the antibodies to be cleared and disposed. Pellagra can occur in Celiac Disease. I had it, and my doctor didn't properly diagnose it, either. I had a rash around my neck, Casal's Necklace, along with a blistering rash on my arms and any skin exposed to the sun. https://pubmed.ncbi.nlm.nih.gov/8445075/ https://cgp.iiarjournals.org/content/10/4/169 https://pmc.ncbi.nlm.nih.gov/articles/PMC11722086/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6780714/ https://pmc.ncbi.nlm.nih.gov/articles/PMC10229844/ https://pubmed.ncbi.nlm.nih.gov/1977254/ You should be checked for more than just B12 deficiency. The eight B vitamins work together, and we need more of them when we're trying to heal. They are water soluble, so the body can easily excrete them if not needed. Have you had your Vitamin D level checked? Vitamin D regulates the immune system and lowers inflammation. I hope you can find some benefit from my experiences. Keep us posted on your progress. P.S. When trying not to itch the dermatitis herpetiformis, if you press gently on a large area (press with your whole hand) above the itchy spot, the itchiness goes away. The bigger area of stimulation drowns out that one jangling dermatitis herpetiformis itchy nerve in the brain. For skin care products, I use tallow balm which is absorbed better into the skin than petroleum products or plant products. Tallow balm (Vintage Traditions is my favorite) helps my Dermatitis Herpetiformis spots look and feel better quickly. Tallow soap and olive oil soap is beneficial as well.
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