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Related Issues & Disorders
Discussions concerning the various associated health problems, including but not limited to pregnancy, sleep & weight issues.
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Recent Activity
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- TerryinCO replied to TerryinCO's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms19New Guy Here...
They've not made that call at this point. They say it looks more like Celiac's than common variable immune deficiency. They say to get a positive diagnosis another endoscopy is needed after I've been on gluten-free diet awhile. So, waiting for more input from Docs'. -
- cristiana replied to Karen Chakerian's topic in Related Issues & Disorders4Getting rid of the belly bloat
Karen, welcome to the forum. Another thing to add: Belly bloat can persist if you are lactose intolerant, a situation caused by coeliac disease or it can simply be a stand alone condition. In the case of coeliac disease, it could be your damaged gut cannot break down lactose efficiently but, in time, once the gut heals, your lactose intolerance and... -
- badastronaut replied to badastronaut's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms3Still unsure.....
Thanks very much for the in depth reply!!! I'll discuss it with my doctor next week!- 1
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- knitty kitty replied to badastronaut's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms3Still unsure.....
Hello, @badastronaut, I reread your last post on your previous thread... "Had some new bloodworks and an echo done because I still have problems with my stomach. According to my latest bloodworks I'm still negative for celiac and still low on zinc (even after supplementing it for quite a long time), I'm low on folic acid now too and my bilirubin... -
- James47 posted a topic in Coping with Celiac Disease0Long term recovery
Hey everyone I hope all are well and having a good 2025 so far. I am 50 this year and I only got diagnosed with celiac in June 2023. I have followed my diet to the letter since and they said after so many years undiagnosed it would take a long time to recover. Although I feel I have lot more energy and health and wellbeing is a lot better I...
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They've not made that call at this point. They say it looks more like Celiac's than common variable immune deficiency. They say to get a positive diagnosis another endoscopy is needed after I've been on gluten-free diet awhile. So, waiting for more input from Docs'.
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Karen, welcome to the forum. Another thing to add: Belly bloat can persist if you are lactose intolerant, a situation caused by coeliac disease or it can simply be a stand alone condition. In the case of coeliac disease, it could be your damaged gut cannot break down lactose efficiently but, in time, once the gut heals, your lactose intolerance and bloating should improve. You might also find it helpful to stay clear of certain high fibre foods for a while, perhaps keeping a food diary to see if any are causing you to bloat a lot or give you stomach pain. Lentils and soya were an issue for me in the short term, while I was recovering. Also, are you taking iron - that can really hurt your belly and in my case it added to the bloating. The other point I wanted to make is has your doctor looked into any other reasons for your belly bloat.? There are a number of other gastric conditions that can result in a bloated belly. A blood test and an ultrasound to check for possible gynaecological issues could also be something to speak to your GP about. It took me a few months for my bloating to subside, but the journey which involved a few tests along the way to ensure nothing else was was worth it. Cristiana
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By badastronaut · Posted
Thanks very much for the in depth reply!!! I'll discuss it with my doctor next week! -
By knitty kitty · Posted
Hello, @badastronaut, I reread your last post on your previous thread... "Had some new bloodworks and an echo done because I still have problems with my stomach. According to my latest bloodworks I'm still negative for celiac and still low on zinc (even after supplementing it for quite a long time), I'm low on folic acid now too and my bilirubin is quite high (2,5 and 0,6). My ALT is also slightly elevated. I have been doing a gluten free diet quite strict although I did eat some gluten in the previous weeks. "Could my blood result be this way because of gluten sensitivity and me being not strict enough? My echo showed no problems with my liver or pancreas. My bile ducts were fine too (although I don't have a gallbladder anymore). "What to do??? Could this be gluten related?" Your bilirubin is high. The liver breaks down bilirubin. The liver needs Thiamine to break down bilirubin. Without sufficient Thiamine, bilirubin is not broken down and escapes into the bloodstream. High levels of bilirubin suppress the immune system. High levels of bilirubin suppress the production of white blood cells, including anti-gluten antibodies. The suppression of your immune system by high bilirubin could be the explanation for false negative Celiac antibody testing. Thiamine is needed for antibody production. Thiamine deficiency can cause false negatives on Celiac antibody tests. If you are not making a lot of antibodies, you won't have much damage to the small intestine. Your ALT is high. The liver produces ALT. When the liver does not have sufficient Thiamine, the liver produces more ALT that escapes into the bloodstream. Elevated ALT is seen in thiamine deficiency. Your Lipase is high. Lipase is produced in the liver and pancreas. More Lipase is released by both in thiamine deficiency. Your gallbladder has been removed. Gallbladder dysfunction is common in thiamine deficiency. Your Zinc is low. Zinc absorption is enhanced when Thiamine is present. Zinc is not absorbed well in thiamine deficiency. Your Folate is low. Celiac Disease causes malabsorption of all the essential nutrients we need for health, the eight B vitamins, including Thiamine, the four fat soluble vitamin, Vitamin C and minerals like Zinc and Magnesium. Thiamine stores can be depleted in as little as three weeks or even as quickly as three days. Thiamine deficiency symptoms can wax and wane depending on how much thiamine is consumed that day. If a high carbohydrate is eaten regularly, additional Thiamine is needed (500 mg per 1000 calories). Anxiety and depression are symptoms of thiamine insufficiency. The brain just thinking uses as much thiamine as muscles do when running a marathon. I have had thiamine deficiency symptoms like you are experiencing. My doctors did not recognize the symptoms of thiamine deficiency. They just prescribed pharmaceuticals to cover up the symptoms which only made things worse. I had a lot of nutritional deficiencies. I ended up getting a DNA test to check for known genes for Celiac. I have two Celiac genes. Have you had a DNA test for Celiac genes? I took Benfotiamine, a form of thiamine that promotes intestinal healing, and a B Complex to correct my deficiencies. High doses of thiamine need to be taken to correct deficiency. Talk to your doctor about administering thiamine intravenously. Thiamine is safe and nontoxic even in high doses. Thiamine is easily excreted in urine if not needed. Improvement of symptoms should be seen within a few hours to a few days. No harm in trying. Process of elimination, etc. Talk to your doctor and nutritionist. Testing for nutritional deficiencies should be done before taking vitamin supplements, otherwise the vitamin supplements already taken will be measured. I hope this helps you on your journey. References: https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6662249/#:~:text=CONCLUSION%3A,in men than in women. https://pubmed.ncbi.nlm.nih.gov/24923275/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6040496/ https://pmc.ncbi.nlm.nih.gov/articles/PMC3772304/#:~:text=Based on the patient's history,were also no longer present. https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/#:~:text=Benfotiamine (Fig.,]%2C [62]]. -
Hey everyone I hope all are well and having a good 2025 so far. I am 50 this year and I only got diagnosed with celiac in June 2023. I have followed my diet to the letter since and they said after so many years undiagnosed it would take a long time to recover. Although I feel I have lot more energy and health and wellbeing is a lot better I still have severe gluten belly even though I work out daily and have a physical job. Any advice or info of anything else I can do would be greatly appreciated 👍 👍
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