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- RMJ replied to Jane07's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1any advice would be helpful
Were the two tests done by the same lab? Do the tests have the same normal ranges? Each test manufacturer uses their own system of units when reporting results. Have your results gone down at all since diagnosis? Are you sure you’re gluten free? Do you eat at restaurants? I would recommend that you take a really good look at your gluten free d... -
- Elizabeth hoope commented on Jefferson Adams's article in Gluten-Free Foods & Beverages1Is tomato paste gluten-free and safe for people with celiac disease?
I travelling to Spain Benidorm in July it’s worrying me with the food and ice cubes for drinks I will buy bottled water but it has taken me many years to get well with being gluten free I could never stay off the toilet so it’s a bit scared going abroad- celiac disease
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- Aretaeus Cappadocia replied to Deb67's topic in Gluten-Free Foods, Products, Shopping & Medications3is Kirkland Imported French Brie gluten freeL
As a more generalized response to your question, I've been contacting Costco customer service for several Kirkland products because they are either unlabeled or contain the generic warning label about being packaged in a facility that handles all major food allergens. Each time I ask, my question is assigned to a specific person who researches it and... -
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- knitty kitty replied to ChrisDun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease7Intermittent Fatigue
There are thirteen essential vitamins: eight B vitamins, four fat soluble vitamins, and Vitamin C. They all work together. If you are deficient in one, you are probably low in the other dozen. Celiac Disease affects the absorption of all the vitamins, and the dozen or so essential minerals, as well. Cobalamine Vitamin B12, needs Folate B9 and Pyridoxine...
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Were the two tests done by the same lab? Do the tests have the same normal ranges? Each test manufacturer uses their own system of units when reporting results. Have your results gone down at all since diagnosis? Are you sure you’re gluten free? Do you eat at restaurants? I would recommend that you take a really good look at your gluten free diet. It took six years for me to get all my results down to the normal range (I was originally positive for TTG IgA, TTG IgG, DGP IgA, DGP IgG and EMA). I started just avoiding wheat, rye and barley. My results came down but one was still high. Then I made sure any processed foods were labeled gluten free. My results came down more but one was stubbornly positive. Then I would only eat processed foods if certified gluten free or from a manufacturer with an excellent reputation among those with celiac disease. All my results were finally normal. My results went back up a little when I started doing a lot of baking with a reputable but not certified gluten free flour. When I switched to certified gluten free flour my results went back down to normal. -
By Aretaeus Cappadocia · Posted
As a more generalized response to your question, I've been contacting Costco customer service for several Kirkland products because they are either unlabeled or contain the generic warning label about being packaged in a facility that handles all major food allergens. Each time I ask, my question is assigned to a specific person who researches it and emails me an actionable response that says, more or less, "no risk", "possible risk", or "definite risk". All of the answers have the caveat in the example below. Also, they recommend that you buy the product, submit the question ***with the lot # of your purchase*,** and then return it if you don't like the risk profile. This is because some products are made at different facilities with different risk profiles. Here is an example of a recent email response: "This is [name] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response: This item is gluten free. This information reflects the sender's knowledge on the date the information is being provided. Ingredients and processes are subject to change without notice. I hope this satisfies your inquiry about [product name and stock #]. If you have a follow up question for me about this item please don’t hesitate to ask. I am happy to help! If I do not hear back from you within 48 hours I will consider this case closed. " Like pretty much every food source, you have to decide who you trust and then live with that. I tend to trust these responses because a person investigates it, their answers are detailed (not generic), and also because sometimes they say "nah, don't eat it". Hope this helps. -
By knitty kitty · Posted
There are thirteen essential vitamins: eight B vitamins, four fat soluble vitamins, and Vitamin C. They all work together. If you are deficient in one, you are probably low in the other dozen. Celiac Disease affects the absorption of all the vitamins, and the dozen or so essential minerals, as well. Cobalamine Vitamin B12, needs Folate B9 and Pyridoxine B6 to function properly. Pyridoxine B6 needs Riboflavin B2. Vitamin C is needed to interact with B12 as well. Thiamine B1 and Niacin B3 are also needed to provide the energy for these vitamins to function properly. If one is also low in Folate and Pyridoxine, B12 Cobalamine is not going to be able to function properly and the body doesn't bother to absorb it. Vitamin D is safe even in high doses. Vitamin D3 should be supplemented. Vitamin D2 is not as well utilized because it's synthetic, not a form the body can utilize easily. Vitamin D must be activated by Thiamine Vitamin B1. Insufficient Thiamine B1 will make one feel "dopey". Thiamine is needed for brain function. The brain uses as much energy just thinking as your muscles do while running a marathon. Multivitamins do not contain sufficient amounts of essential vitamins to correct nutritional deficiencies. Supplementing with ALL eight B vitamins, extra Thiamine (don't use the form thiamine mononitrate because it's not absorbed nor utilized well), Vitamin C and the four fat soluble vitamins will be more beneficial than just supplementing one or two vitamins by themselves. With sufficient amounts of essential vitamins, the immune system gets regulated and becomes less reactive to other things like pollen, molds and animal dander. Sleep apnea is frequently found in Thiamine insufficiency. The eight essential B vitamins are water soluble and easily excreted if not needed. The B vitamins all work together. Supplement them together. Thiamine deficiency disorders: a clinical perspective https://pubmed.ncbi.nlm.nih.gov/33305487/ -
i have been gluten free for about 2 yrs i had a ttg recently done my blood test was .7 higher then last time. i must be doing something wrong im still not in the normal range. What advice would anyone give?
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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
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