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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 badastronaut's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms20Still unsure.....
Be sure to be eating gluten daily until all of your celiac disease tests are completed (at least 2 slices worth of wheat bread per day for at least 6-8 weeks before any blood tests, and 2 weeks before an endoscopy). -
- knitty kitty replied to maylynn's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease74 Years and very little progress
@maylynn, No, I took over the counter thiamine supplements, thiamine hydrochloride, Benfotiamine, and TTFD (tetrahydrofurfuryl disulfide). My doctors were not very knowledgeable about nutrition and vitamins, and they missed my symptoms being connected to vitamin deficiencies. I studied nutrition before earning a degree in Microbiology because... -
- maylynn replied to maylynn's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease74 Years and very little progress
@knitty kitty Did they give you medication for the Thiamine? I have never heard of that and have never related to symptoms more. My energy is always SO low. Zero drive to get anything done or work out. I used to love being on the go and being active. I am heading to the doctor next week so I will make sure to bring this up! Thank you so much!- 1
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- maylynn replied to maylynn's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease7
4 Years and very little progress
@trents I have had another scope done since being diagnosed. The only thing they told me at that time was my body seems to be healing very well and to continue what I was doing. At that time, I had only been diagnosed 2 years so it may be a possibility that it was healing then but not now maybe. I think you're right that it's about time one was done! I will... -
- maylynn replied to maylynn's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease7
4 Years and very little progress
Thank you so much for the advice, Scott. I am going back to the doctors next week to get more blood work done. The only thing they recommended me to take so far has been two shots of liquid iron in the morning to keep my iron levels high. What supplements or vitamins have worked for you? I never physically feel my celiac symptoms, unless I got cross contamination...- 1
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By Scott Adams · Posted
Be sure to be eating gluten daily until all of your celiac disease tests are completed (at least 2 slices worth of wheat bread per day for at least 6-8 weeks before any blood tests, and 2 weeks before an endoscopy). -
By knitty kitty · Posted
@maylynn, No, I took over the counter thiamine supplements, thiamine hydrochloride, Benfotiamine, and TTFD (tetrahydrofurfuryl disulfide). My doctors were not very knowledgeable about nutrition and vitamins, and they missed my symptoms being connected to vitamin deficiencies. I studied nutrition before earning a degree in Microbiology because I wanted to know what vitamins were doing inside the body. My doctors just prescribed pharmaceuticals to cover the symptoms of poor health due to malabsorption of nutrients. We need more thiamine when we're physically ill, physically active, emotionally stressed and work outside in hot weather. Thiamine works in concert with the other B vitamins, so all should be supplemented together. Vitamin D needs to be activated by thiamine. Vitamin D helps regulate the immune system. Don't take Thiamine Mononitrate because it is not bioavailable. The body has difficulty absorbing and utilizing it. Do keep us posted on your progress! -
@knitty kitty Did they give you medication for the Thiamine? I have never heard of that and have never related to symptoms more. My energy is always SO low. Zero drive to get anything done or work out. I used to love being on the go and being active. I am heading to the doctor next week so I will make sure to bring this up! Thank you so much!
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@trents I have had another scope done since being diagnosed. The only thing they told me at that time was my body seems to be healing very well and to continue what I was doing. At that time, I had only been diagnosed 2 years so it may be a possibility that it was healing then but not now maybe. I think you're right that it's about time one was done! I will be bringing that up to my doctor at my apt. next week. Thank you for the suggestions with food. I have tried diary so far. Seems to not be the issue (luckily!). Will have to try the others!
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Thank you so much for the advice, Scott. I am going back to the doctors next week to get more blood work done. The only thing they recommended me to take so far has been two shots of liquid iron in the morning to keep my iron levels high. What supplements or vitamins have worked for you? I never physically feel my celiac symptoms, unless I got cross contamination which I feel has only happened a handful of times in the last four years. When I eat it feels so different than my celiac. Which makes me wonder if it is another food like you suggested. Has anyone ever had issues with meat? I feel like I can snack and snack until it is a full meal, usually including meat. Could that be an allergy or just my gut not digesting well from the celiac? These are all things I am wanting to bring up to my doctor next week but hearing from other people with the same disease beforehand makes me feel less crazy about all of my stomach issues! Thank you again! I will check out the article.
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