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  3. "I'm pretty low on Vitamin D, but every time I take any type of supplement I have bad reactions. I even went out my way to findVitamin D that is organic and has no sweeteners, fillers or any other ingredients other than what is core to makingvitamin D. But hey, my body doesn't like it." Defokus, Get your Vitamin D level up! Vitamin D is extremely important to your health! Low Vitamin D levels affect many of your body's functions and your immune system. Low Vitamin D can make your eosinophils go crazy.... https://www.ncbi.nlm.nih.gov/pubmed/29050663 "Vitamin D-deficiency induces eosinophil spontaneous activation" https://www.ncbi.nlm.nih.gov/pubmed/28830802 "Impact of vitamin D deficiency on increased blood eosinophil counts" Low Vitamin D also affects your liver... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5622775/#sec3-nutrients-09-01015title "Vitamin D Supplementation and Non-Alcoholic Fatty Liver Disease" I'm allergic to fish and shellfish, and have reactions to cod liver oil and krill oil (both are sources of Vitamin D). Lanolin in another fat based Vitamin D source. Some Celiacs have difficulty absorbing fats like these and so you might opt for a "dry Vitamin D" supplement. Desiccated Liver supplements are a good source of Vitamin D as well as Vitamin A and B12. There are also vegan sources of Vitamin D. These are made from microalgae and lichen. Vitamin D 3 is the natural form of Vitamin D and is easily used by the body. Vitamin D 2 is the synthetic form which is often prescribed, but is not as well used by the body. This is the form added to fortified milk. Some Celiacs become lactose intolerant due to damage to their intestinal villi which produce enzymes to digest dairy. So, dairy with its D2 might not be a good choice. Once you have a significant deficiency, it's very hard to make it up by just getting enough sun (especially in the northern latitude where you are) or consuming Vitamin D rich foods like salmon or milk or liver. (Actually I like eating liver!) Optimum Vitamin D level should be 30 ng/ml (75 nmol/l) or above. At these higher levels, Vitamin D can work as it was intended and fight autoimmune problems. I had a severe Vitamin D deficiency. I can't express what a difference getting my Vitamin D level up made to my health. Please don't ignore your Vitamin D deficiency. Try different Vitamin D supplements until you find one you can tolerate and that works for you and you will see many of your health problems improve. Hope this helps! Knitty Kitty
  4. RealZymes makes ones for each diet, the amount of enzymes you need depends on what your eating since different enzymes breaks down different types of foods. https://www.amazon.com/Real-ZymesTM-Digestive-Supplement-Probiotics-Digestion/dp/B07B9J56G8/?th=1 Enzymepedia makes broad-spectrum ones and high-fat diet versions. https://www.amazon.com/Enzymedica-Potency-Enzymes-Digestive-Capsules/dp/B00HLXPTFA/ https://www.amazon.com/dp/B00028ORWC/ Jarrow Makes one that uses the 3 main ones derived from pig pancreas enzymes and is essentially the same stuff doctors prescribe for pancreatic inefficiency https://www.luckyvitamin.com/p-22289-jarrow-formulas-jarro-zymes-plus-100-capsules?
  5. Looks good to me! Lots of chemicals though (necessary in preventing skin cancer), so avoid eating it. Wash your hands and dry with a paper towel or old towel. Sunscreens stain! Ugh!
  6. Ennis might have a good brand that is gluten free. He also has Ulcerative Colitis which compounds his digestive issues. I think CountryLife is certified gluten free. I have used their lactose version (Dairyzymes) for the times I get a rare gluten exposure. You could also consult with your pharmacist too. My best advice is to avoid processed foods as much as possible and do not eat out until you are feeling much better and are willing to risk an exposure. Soups and stews. Those are my go to safe foods when my small intestine is under attack. Boring, yes. But easier to digest for the short term.
  7. Hi folks, I picked up some moisturizer with SPF. I'm still new to dealing with my celiac, so I can't tell if any of these ingredients contain gluten. Could someone help me with this? Medicinal Ingredients: Homosalate 10.00%, Menthyl Anthranilate (Meradimate) 5.00%, Octinoxate (Ethylhexyl, Methoxycinnamate) 5.00%, Octocrylene 2.00%, Zinc Oxide 6.3%. Non-Medicinal Ingredients: Water, Aluminum Starch Octenylsuccinate, Behentrimonium Methosulphate, Cetearyl Alcohol, Carbomer, Ceramide AP , Ceramide NP, Ceramide EOP, Cholesterol, Dimethicone, Disodium EDTA, Glycerin, Hydroxyethylcellulose, Methylparaben, Niacinamide, Propylparaben, Phytosphingosine, Sodium Hyaluronate, Sodium Lauroyl Lactylate, Xanthan Gum
  8. Oh, you poor thing! If it were at all possible, you could have the endoscopy in two weeks, and if it was negative repeat the endoscopy in 5 1/2 months. But since your GI doc is dubious about a celiac diagnosis given your negative blood test for Celiac antibodies, the more conservative approach would indeed be a return to eating gluten and then the endoscopy 5 1/2 weeks from now. At least that's better than waiting 9 months for the endoscopy. Is the GI do willing to run the other Celiac antibody tests at the endoscopy appointment? Or are there any private-paid options for you in the UK? I don't know about the UK, just that in the US I could pay about $300 of my own money and have all of those tests run. There are traditional blood draw options at a regular lab, and finger prick home test kits here. Anyway, you now seem to have another box ticked in the potential Celiac diagnosis list... you did respond to a gluten free diet.
  9. FruitE, The hardest part about taking any vitamin/mineral is finding the right form/frequency to take it in ... while taking magnesium oxide can help the big "C" it is not well absorbed by the body. see this good thread on magnesium. taking Niacin has had similar issues. ..it flushes people in higher doses and why most won't take it. .. find a 50 or 100mg and just take it with meals....you will have a warm sensation in 20 minutes (always take with food) after a couple days this (warm sensation) will go away and so should the itching. Here is a good article on how it used in the treatment of Primary (Frank) Pellagra back in the day...that I ran across trying to help someone with his skin lupus...but alas they won't listen..I hope you will! https://www.dermatologyadvisor.com/home/decision-support-in-medicine/dermatology/pellagra/ Notice large does are not needed ... and can be counter productive due to flushing associated with higher doses because of low acceptance of this fact. .. a natural process of the opening of your blood vessels/capillaries allowing more oxygen to reach your muscles and why it is often used in low amounts in work out supplements. but take it with meals at only 50mg or the more commonly/widely available 100mg niacin tablet size and you should notice your histamine issues subside over a few months use.... today pellagra is subclcinical and usually only happens in those who also have (other) GI problems...it is more commonly called "refractory pellagra" or 2ndary Pellagra because it happens 2ndary to your celiac diagnosis. gluten free works did a good article on this a few years ago. https://glutenfreeworks.com/blog/2017/07/18/niacin-vitamin-b3-deficiency-in-celiac-disease/ I have now used up my available (forum) free time for the week. .. .thanks to a rain day. Let other's know if it helps you ...so it can help other's too! that is all I have tried to do. https://www.celiac.com/blogs/entry/2167-open-letter-part-1-to-fellow-gi-sufferers-etc-like-ibs-uc-and-other-gi-diseases-like-infant-heartburn-gerd-that-grows-into-in-time-to-ibs-uc-chrons-and-ncgs-as-a-teenager-or-celiac-disease-in-time-as-an-adult-look-beyond-to-the-parent-disease/ see also this forum thread that talks about Corn(starch) can trigger DH symptom's in some Celiac's. I hope this is helpful but it is not medical advice. 2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God,
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  11. Thanks 🙏 do you recommend particular digestive enzymes? Thought I’d ask to save myself using ones that have hidden nasties inside 😉
  12. wheatwacked, I heard it was due to the pasteurization (heat) ...one's stored in chilled refrigerators should have more "live bacteria" by the natural process of fermentation...pasteurization kills off the benefit of fermented foods. I don't 'know of that is right or not?????but that is what I understood. concerning the prebotic/probiotic benefits/effects I ran across this research recently that least in part explains some of these issues in IBS. ...if not NCGS entitled "Tryptophan: ‘essential’ for the pathogenesis of irritable bowel syndrome?" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4266036/ read it all when you get a chance wheatwacked.. .your point on lactobacillus is what drew my attention. I will quote from their concluding remarks. "IBS may be related to disrupted tryptophan metabolism with increased oxidative stress and deficiencies of tryptophan and tryptophan-derived AhR ligands [36]. The cause may be dysbiosis [53] due to high intake of carbohydrates [46]. If the microbes get their preferred food (sugar), they do not produce AhR ligands that strengthen the defences of and barrier presented by the mucous membranes. Without these AhR ligands, the ratio between the lactic acid bacteria and C. albicans is reduced and the immunobalance skewed in favour of the development of IBS, allergies and autoimmune diseases. When we say ‘You AhR what you eat’ [54], it means that a number of disorders, including IBS, fibromyalgia and fatigue, may be indirect consequences of diet, mediated by the essential amino acid tryptophan and its microbial metabolites. So perhaps it is more correct to say ‘You AhR what your microbiota eat?’" I hope this is helpful but it is not medical advice. posterboy,
  13. Really helpful thanks. I also have fatty liver (from years of alcoholism). Been dry for over a year already but it was still fatty pre-diagnosis. my lipase for the last 3 years has always been 5-10 points above the normal range so it’s not like they’re extremely elevated. Really encouraging to hear they can be reduced on a gluten-free diet.
  14. I had a blood test from an allergist and my ECP levels were 3x normal range. ECP differs from standard eosinophil percentage that is common in a CBC blood test. Levels are 66.7ug/l normal is <20ug/l. From what I read this is pretty dangerous and is also a marker for tumours or can cause organ damage. It is also termed as eosinophilia which is quite scary. I couldn’t find anything related to this on the forum which also makes me wonder what is going on. Any advice?
  15. Defokus, If it is just Lipase and not other pancreas enzymes too then going gluten free should help your enzymes go down.... I had elevated liver enzymes that went down after a year. 40 percent of celiac's have elevated enzymes(usually liver enzymes) at time of diagnosis but only 25 percent of celiac's have elevated pancreas enzymes. Here is some research on it. https://www.researchgate.net/publication/7164590_Unexplained_Elevated_Serum_Pancreatic_Enzymes_A_Reason_to_Suspect_Celiac_Disease https://theceliacscene.com/elevated-liver-enzymes-celiac-disease/ I also had fatty liver and don't drink at the time of celiac diagnosis which is now better supported by what the research says ...at about a year most celiac's elevated enzymes will get better on a gluten free diet. https://www.verywellhealth.com/celiac-disease-and-liver-diseases-562618 I hope this is helpful but it is not medical advise. Posterboy,
  16. Awol Cast Iron Stomach. That is good research. Here is another thread and/or other research that might help you. https://insights.ovid.com/crossref/00000381-201603000-00016?isFromRelatedArticle=Y https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4266036/ It is a rainy day here, ...so I had time to come in out of the rain and caught up on the forum... and saw your thread. the regulation of Histamine(s) is very important in MCAS and the research explains how a genetic defect in the use of the amino acid tryptophan can lead to IBS symptom's and mastocystis's associated with digestive issues. I had seen the corn starch research before but got busy and forgot about it. I tend to think anything triggered by corn ...tends to be Pellagra that has developed since you developed celiac disease. gluten free works did the first work I read about it (Pellagra) developing in Celiac's due to low B-Vitamin levels. https://glutenfreeworks.com/blog/2017/07/18/niacin-vitamin-b3-deficiency-in-celiac-disease/ people have forgotten about pellagra today because we enrich our breads but gluten free breads are not enriched.... here is an article about it. https://www.dermatologyadvisor.com/home/decision-support-in-medicine/dermatology/pellagra/ Pellagra actually means "rough skin" ... and why it is typically described as the "4 D's" ...I had forgotten or didn't know it -- it can also be known for it's 3 P's and why I linked this research I recently came across for a friend doing research on his skin Lupus and it described it perfectly! quoting the article about the D's and P's of Pellagra. "Pellagra is classically described as the 4 D’s in order of symptoms starting: diarrhea (watery, but may contain pus or blood), dermatitis, dementia, death. Three 3 P’s also apply: photosensitive, painful, pruritic (itchy)". It was once known as the "Red Madness" and if it is (Pellagra) mimicking DH you can understand why one is confused for the other.... as Lupus is sometimes said to do too other diseases then it is as least plausible....if not like(ly) you have also developed Pellagra since your Celiac diagnosis. you should also have your stomach acid checked it (SA) (Stomach acid (SA)) has also been to be LO/NO (celiacs) and (NO SA) in DH patient's, respectively. https://www.ncbi.nlm.nih.gov/pubmed/3992169 I hope this is helpful but it is not medical advice. Posterboy,
  17. Your symptoms could be attributed to celiac disease or any number of illnesses. The only way to find out if it is indeed celiac disease is to get tested. It starts with a simple blood test. Make no changes to your diet. All celiac disease testing requires you to be on a gluten diet. http://www.cureceliacdisease.org/screening/ You can develop celiac disease at any age: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4635160/ A “wait and see approach” is not good in my non-medical opinion. Why wait? For you to become sicker? Consider some new doctors! If you are stuck with yours, document in writing your request to be tested for celiac disease. Nothing like a potential lawsuit to get a doctor to take action. Remember, you are the customer!
  18. I have felt like I have the flu for about 4 months. I went to the doctor and my blood tests came back with leukopenia. I have felt extremely tired, sometimes feverish (no fever), headaches, sometimes tingling in my arms & hands, itchy skin, low appetite, nausea, inconsistent bowel movements, and joint problems. The internet is a scary place but I still go to it to try to figure out whats going on since my doctors are taking a "wait and see approach". So my question, does anyone have experience with this list of symptoms? I am 39 years old so it seems kinda late in the game to have celiacs but one never knows. Any thoughts from everyone here would be greatly appreciated.
  19. There's a good chance that the gluten-free fettuccine alfredo you ordered may come with a side of gluten. 32% of restaurant foods labeled gluten-free ... View the full article
  20. Tate’s are gluten free (gluten-free). All their gluten free cookies are made in a dedicated gluten-free facility and are tested to under 5ppm. https://www.tatesbakeshop.com/faq/ Your reaction? It was most likely an intolerance to Xanthan Gum or another ingredient in the cookie and not one that activates celiac disease. I have celiac disease and personally can not consume Xanthan Gum which is found in most gluten-free processed breads, crackers and cookies. That often leaves me to bake my own baked goods. Keep in mind that Tate’s gluten-free cookies are still “junk” food packed with sugar and carbs. Not exactly healthy, but sure nice to indulge in occasionally. The article? It is almost 10 years old and a bit dated. It was about flours that are in theory gluten free naturally and were labeled gluten free as a result. But flours can be cross contaminated. This was a huge problem back in 2010 before the FDA set up gluten-free labeling guidelines as to what constitutes gluten free. Purchase four that has been labeled gluten-free today and it should be under 20 ppm. Purchase a certified gluten-free flour for piece of mind and it should be under 5 ppm (the lowest testing result you can get and no test can get to zero). I use Pamela’s gluten-free flour mix because it does NOT have Xanthan Gum. Trisha Thompson is the best. I strongly recommend her Gluten Free Website. For a small monthly subscription, you can get reports on gluten-free products. You can even request that she test a product of your choice. It is like a mini Consumer Reports. Go Gluten Free Watchdog!
  21. "We know that celiac disease is a multifactorial disease with about 57 genes ... the genes returned to normal when patients were placed on a gluten-free diet, ... Identifying potential targets for therapeutic intervention in celiac disease ... View the full article
  22. There are others who have posted on this topic, and these links might help:
  23. That is not true! A Celiac cannot have gluten. You can have everything else. Some people choose to not eat other things for a number of reasons. But Celiac disease is not one of them
  24. Development in the predominance of celiac diseases is the main ... Also, the reliance on gluten rich food and patterns of ready-to-use packaged food ... View the full article
  25. Hi everyone, I'm getting a blood test for Celiac next week, but I've been dealing with this really embarrassing problem and it's really made my life difficult. For the past 2 years I've had strong body odor, described as fecal/sulfur like. This body odor only began when I was hired to work in a bakery (it's so gross, I'm sorry). Before this I've been on long plane rides and out in public with no complaints, but now it's impossible for me to even go to the movie theater. I've seen ENTs for this, dentists, etc. -- no tonsil stones, gum disease, cavities. No doctors seem to have any idea what this could be. My only clue is it began when I started working at the bakery, and I'm constantly inhaling gluten for hours each day. The weird thing is I can't smell this on myself but everyone around reacts the same, so it has to be from me. Also forgot to mention, I had a blood panel done to see if it could be diabetes - and it came back with a severe B12 deficiency and vitamin D deficiency. My doctor said the normal level for B12 should be 1200, but mine was at 200. Has anyone here dealt with something similar? I'm not sure what else I can do. I know for a fact it's not TMAU since my in-laws reacted to me recently, but before that I would see them often and there was no complaints about any smells. And I traveled a lot on planes before all of this too (maybe 6 or more times a year) and there was zero reactions.
  26. Two weeks is enough time for a gluten challenge to obtain intestinal biopsies via endoscopy. https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Perhaps, your GP is basing a six week challenge on blood tests requirements which range from 6 to 12 weeks depending on the celiac disease research center. Maybe they want to repeat those blood tests on the day of your endoscopy. 13 days off? I would not worry. Take this time to enjoy gluten. Skip the cheap bread and crackers and focus on artisan bread. I literally consumed a loaf of sourdough a day! Then I hit my favorite restaurants for special exotic desserts to go. I bought old favorite processed cookies and cakes and sampled them and gave away the opened packages to my friends and neighbors. Those processed cookies were not all that great. 😆. I was pretty sick by the time I had my endoscopy, but it sure made it easier to give up gluten for life! There was NO DOUBT that gluten made me ill. I should clarify that when I had the blood panel, I was really only suffering from anemia. My hubby had been gluten free for 12 years, so I was a bit gluten light. I had to wait seven weeks for my endoscopy due to work constraints, so I really ramped up my gluten intake because I knew what being gluten free was actually like. They say that you become one in marriage, but who would have thought we would both have to be gluten free?
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    • "I'm pretty low on Vitamin D, but every time I take any type of supplement I have bad reactions. I even went out my way to findVitamin D that is organic and has no sweeteners, fillers or any other ingredients other than what is core to makingvitamin D. But hey, my body doesn't like it." Defokus,  Get your Vitamin D level up!   Vitamin D is extremely important to your health!  Low Vitamin D levels affect many of your body's functions and your immune system.  Low Vitamin D can make your eosinophils go crazy.... https://www.ncbi.nlm.nih.gov/pubmed/29050663 "Vitamin D-deficiency induces eosinophil spontaneous activation" https://www.ncbi.nlm.nih.gov/pubmed/28830802 "Impact of vitamin D deficiency on increased blood eosinophil counts" Low Vitamin D also affects your liver... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5622775/#sec3-nutrients-09-01015title "Vitamin D Supplementation and Non-Alcoholic Fatty Liver Disease"   I'm allergic to fish and shellfish, and have reactions to cod liver oil and krill oil (both are sources of Vitamin D).    Lanolin in another fat based Vitamin D source.  Some Celiacs have difficulty absorbing fats like these and so you might opt for a "dry Vitamin D" supplement.  Desiccated Liver supplements are a good source of Vitamin D as well as Vitamin A and B12. There are also vegan sources of Vitamin D.  These are made from microalgae and lichen.   Vitamin D 3 is the natural form of Vitamin D and is easily used by the body.  Vitamin D 2 is the synthetic form which is often prescribed, but is not as well used by the body.  This is the form added to fortified milk.  Some Celiacs become lactose intolerant due to damage to their intestinal villi which produce enzymes to digest dairy. So, dairy with its D2 might not be a good choice.   Once you have a significant deficiency, it's very hard to make it up by just getting enough sun (especially in the northern latitude where you are) or consuming Vitamin D rich foods like salmon or milk or liver.  (Actually I like eating liver!) Optimum Vitamin D level should be 30 ng/ml (75 nmol/l) or above.  At these higher levels, Vitamin D can work as it was intended and fight autoimmune problems.  I had a severe Vitamin D deficiency.  I can't express what a difference getting my Vitamin D level up made to my health. Please don't ignore your Vitamin D deficiency.   Try different Vitamin D supplements until you find one you can tolerate and that works for you and you will see many of your health problems improve.   Hope this helps! Knitty Kitty                  
    • RealZymes makes ones for each diet, the amount of enzymes you need depends on what your eating since different enzymes breaks down different types of foods.  https://www.amazon.com/Real-ZymesTM-Digestive-Supplement-Probiotics-Digestion/dp/B07B9J56G8/?th=1 Enzymepedia makes broad-spectrum ones and high-fat diet versions. https://www.amazon.com/Enzymedica-Potency-Enzymes-Digestive-Capsules/dp/B00HLXPTFA/ https://www.amazon.com/dp/B00028ORWC/ Jarrow Makes one that uses the 3 main ones derived from pig pancreas enzymes and is essentially the same stuff doctors prescribe for pancreatic inefficiency  https://www.luckyvitamin.com/p-22289-jarrow-formulas-jarro-zymes-plus-100-capsules?
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