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Awaiting dermatitis herpetiformis confirmation following biopsy
knitty kitty and one other reacted to suek54 for a topic
Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later. The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied...2 points -
Doctors and Celiac.com
Jmartes71 and one other reacted to Theresa2407 for a topic
Our support groups in Iowa have tried for years to educate doctors and resource sites like this one. We have held yearly conferences with continued education classes. We have brought in Dr. Murray, Dr. Fasano, Dr. Green and Dr. elliott. In those many years we may have had 2 doctors attend. We sent them information, with no response. I talked to...2 points -
A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)
Oldturdle and one other reacted to Scott Adams for an article
2 points -
Increased intraepithelial lymphocytes after 10 yrs gluten-free
knitty kitty and one other reacted to cristiana for a topic
Watch this space! 😊2 points -
If you successfully digest gluten with enzyme supplements so it won’t give you side effects, your challenge won’t be worthwhile because the digested fragments of gluten also won’t stimulate antibody production or cause intestinal damage.2 points
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What's missing, for me, from this article, is a timeline for implementation in countries. Western countries are often quite slow to implement, and some countries I've been to have no labelling whatsoever...2 points
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Mallorca Guide
Scott Adams and one other reacted to Mettedkny for a topic
You already got some great recommendations. Just want to second that Mallorca (and Spain in general) is one of the best and easiest places for celiacs to travel. I have been to Mallorca multiple times and have never experienced any cross contaminations and there are SO many easy to buy options in regular supermarkets. Hope you have a wonderful trip.2 points -
Blood Test for Celiac wheat type matters?
Scott Adams and one other reacted to trents for a topic
Welcome to the celiac.com community, @GlutenFreeChef! Your question begs an ongoing controversy in the celiac community and you are likely to get a variety of answers from different responders. It is true that we have gotten numerous posts from celiacs traveling in Europe who state that they could eat wheat products there without getting a celiac reaction...2 points -
A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)
Sheila G. and one other reacted to Threecents for an article
I did not realize there is an HLA type that is associated with Celiac. I google it and found that while 90% of people with Celiac carry that marker, so do about 25% of the general population.2 points -
Global Experts Recommend Gluten Reference Dose: What It Means for Celiac Safety (+Video)
Oldturdle and one other reacted to Scott Adams for an article
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Healthy diet leading to terrible bloating
knitty kitty and one other reacted to cristiana for a topic
That sounds very hernia inducing work! You confirm what I have suspected, I get pain just to the right of the umbilical hernia, I am sure there is a connection. If do see my gastroenterologist I'll mention it again. I can't help thinking I've also got an issue in my groin, perhaps a hernia threatening, I guess an ultrasound would be needed to confirm...2 points -
Healthy diet leading to terrible bloating
knitty kitty and one other reacted to Scott Adams for a topic
I had double hernia laparoscopic surgery two months go to repair both an Inguinal hernia (a recent home project injury) and an umbilical hernia (which I had for many years, but fixing it at the same time made sense), and am now more or less fully recovered. Recently on the forum someone mentioned the idea of hernia induced IBS, which I now believe was a real...2 points -
Celiac support is hard to find
tiffanygosci and one other reacted to Scott Adams for a topic
I am so glad you found this forum and shared your journey. Hearing about your experience navigating those major food holidays so soon after your October diagnosis truly highlights your strength and resilience, even through the inevitable learning curves with cross-contamination. It's normal to feel isolated, especially when in-person support seems scarce...2 points -
Celiac support is hard to find
tiffanygosci and one other reacted to cristiana for a topic
Hi @tiffanygosci Well done for reaching out, fantastic you have found this forum. It sounds like you are managing the diet well, it can be overwhelming at first, but it will get easier. I wonder if you have seen the short film 'Glutened'? - someone shared it on this forum a few months ago and it reminded me of how isolating it can be,...2 points -
Desperately need a vitamin D supplement. I've reacted to most brands I've tried.
Jane02 reacted to knitty kitty for a topic
Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...1 point -
Well with all my fighting last year waisting my time " schooling" about celiac disease and scrambling to find a careteam and talk about other issues that are affecting me, I was able to discuss my headache, nerve issues eye sensitivity ect.Got lots of mri' s done with the last month and just found out i have MS! All because celiac was downplayed, ignored...1 point
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Doctors and Celiac.com
Scott Adams reacted to Theresa2407 for a topic
I see it everyday on my feeds. They go out and buy gluten-free processed products and wonder why they can't heal their guts. I don't think they take it as a serious immune disease. They pick up things off the internet which is so far out in left field. Some days I would just like to scream. So much better when we had support groups and being able to teach...1 point -
need help understanding testing result for Naked Nutrition Creatine please
Scott Adams reacted to TheDHhurts for a topic
I wrote them back seeking clarification on their testing. The response was that they test to ensure the product is 5 ppm or under. So far no trouble with the product but I hate to see these companies drop the outside certification.1 point -
Gluten Free Coffee
Scott Adams reacted to Peace lily for a topic
Well this is what happen to me . I was still having a little problem with constapation and stomach problems and I’m the only one in the kitchen . I started looking into coffees and it seem like the flavors were the ones to avoid I use k pods.well that wasn’t it I just used breakest blend . Then I found out it was the caramel syrup I was using in my ...1 point -
Medications
Scott Adams reacted to Jmartes71 for a topic
Thankyou because I met up with K B with well known bay area hospital once and she said she knows I don't like to take meds, I said thats incorrect, I have issues.Thats the one that said I was deemed " unruly " when she admitted I was celiac when I asked why am I going through this.1 point -
Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out
Scott Adams reacted to trents for an article
@Brenda Sanchez, you must have a true allergy to wheat or some other ingredient that was in that pizza since a celiac gluten reaction isn't the same as anaphylaxis.1 point -
Increased intraepithelial lymphocytes after 10 yrs gluten-free
Scott Adams reacted to cristiana for a topic
I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10). Since then it has gone up to 10. I am not happy with that. I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I...1 point -
Increased intraepithelial lymphocytes after 10 yrs gluten-free
cristiana reacted to Scott Adams for a topic
Celiac disease is the most likely cause, but here are articles about the other possible causes:1 point -
Going for upper endoscopy today
Scott Adams reacted to Midwesteaglesfan for a topic
UPDATE: here I am a couple months past my full diagnosis and going gluten free. I’ve been feeling a lot better. More energy, joint pain has gone down a lot. Haven’t really had the headaches and migraines I’ve had for years. My daughter(age 17) has had some symptoms which we thought were something else, but with my diagnosis I said, have ...1 point -
New issue
Scott Adams reacted to Jmartes71 for a topic
I was taking medicine for sibo but it was not agreeing with my stomach at all.Was on gabapentin but it amps me up.I was taking in morning because it wasn't allowing me to sleep.This has always been an issue with medicine and me.Even going to dentist, the good shot that numbs you once, I can't take because it makes my heart beat fast and I get the shakes...1 point -
Doctors and Celiac.com
Scott Adams reacted to Jmartes71 for a topic
I showed one doctor I went to once because completely clueless of celiac disease and yes that one was connected to a well known hospital and she said oh thats just a bunch of people that think they are celiac coming together. I said um no they have doctors and knowledge behind what is being written. So bay area is Downplaying this site! SADLY1 point -
Seeking advice on potential gluten challenge
knitty kitty reacted to JudyLou for a topic
Thanks so much!1 point -
Blood Test for Celiac wheat type matters?
Scott Adams reacted to Wheatwacked for a topic
In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide. Both linked to cancers. Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers. A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor. Sourdough...1 point -
Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food
Scott Adams reacted to Flash1970 for an article
He should have gotten millions. How much is your life worth?1 point -
Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food
Russ H reacted to Scott Adams for an article
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New issue
Scott Adams reacted to Jmartes71 for a topic
Nope its just me because they can eat wheat and when we use same pans I found out last year thanks to you guys and the autoimmune website im learning,we are not to share though clean, same with sponge. I just wish doctors understood. I am with new gi and new pcp but im falling apart because blood work is fabulous.Im so ANGERY.I have reached out to my local...1 point -
Can Your Gut Microbiome Predict Celiac Disease Years in Advance?
knitty kitty reacted to Scott Adams for an article
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heaps of hope!
RMJ reacted to wellthatsfun for a topic
i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free...1 point -
Thanks for your reply I’m a nearly 69yr old female. My only medications are Fosamax and Lamotrigine for seizures. Thank you for that drugs.com link! There are soooo many common side effects for Reclast and almost nothing for Fosamax. Since it’s working well and I haven’t had any side effects from Fosamax (stomach bleeding, pain or upset) my d...1 point
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Blood Test for Celiac wheat type matters?
knitty kitty reacted to cristiana for a topic
I agree with you @GlutenFreeChef that you should still react to European flour, so long as it is regular gluten containing flour. Even if the reaction is not anything you can actually feel, the damage should be going on internally if you do a proper gluten challenge. My gastroenterologist has told me more than once that he has coeliac patients who...1 point -
Severe severe mouth pain
cristiana reacted to Caligirl57 for a topic
Hi Charlie, I was living in Harrogate, UK when I was diagnosed with lichen planus in my mouth. They are very painful sores in the mouth.The dentist there told me I should get tested for celiac disease as she said there is a strong correlation between the two. I also had stomach issues. I had an endoscopy and it confirmed I have celiac disease. I have...1 point -
Shingles - Could It Be Related to Gluten/ Celiac
ShariW reacted to Scott Adams for a topic
Speaking from experience, and as someone who was taking zinc in my multivitamins at the time of my outbreak, I would not rely on zinc or other supplements to prevent a shingles outbreak. That is what the new, extremely effective, 2 shot shingles vaccine is for, and this vaccine is very effective at preventing outbreaks. In my case I've not had shingles symptoms...1 point -
Shingles - Could It Be Related to Gluten/ Celiac
Scott Adams reacted to cristiana for a topic
Thank you for your thoughtful contribution, @Tazfromoz. I live in the UK and the National Health Service funds free vaccines for people deemed to be at heightened risk. I was pleasantly surprised to discover that as a coeliac in my 50s I was eligible for this vaccine, and didn't think twice when it was offered to me. Soon after diagnosis I suffered...1 point -
Celiac disease symptoms
Scott Adams reacted to Churro for a topic
I'm no longer dealing with constipation. I got my liver test last month and it was in normal range. Two years ago I did have a vitamin D deficiency but I'm know taking vitamin D3 pills. Last month I got my vitamin D checked and it was in normal range. I don't believe I've had my choline checked. However, I do drink almond milk eat Greek yogurt on a daily...1 point -
How the Gut Microbiome Shapes Celiac Disease Risk (+Video)
Scott Adams reacted to pweidema for an article
Very interesting! Thank you Scott!1 point -
Vitamins I Take
Scott Adams reacted to knitty kitty for a blog entry
I like Life Extension Bioactive Complete B Complex. It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease. Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible. (Read the ingredients listing.) Thiamine Mononitrate is the "shelf-stable" form of B...1 point -
Mallorca Guide
Scott Adams reacted to hjayne19 for a topic
This is great thank you very much @Scott Adams1 point -
Mallorca Guide
cristiana reacted to Scott Adams for a topic
Mallorca sounds like a great travel destination! This article may also be helpful--it contains a gluten-free restaurant card that might be handy when eating out:1 point -
Help understand results
knitty kitty reacted to Aretaeus Cappadocia for a topic
tldr: "we tested your daughter with one test and that result does not suggest Celiac. However, the test we used should not be used as the initial screening test for celiac (like it appears they did) because it misses a lot of cases ("low specificity"). No further testing is scheduled or pending" We eat "gluten" and our bodies digest part of it into ...1 point -
Mallorca Guide
Scott Adams reacted to cristiana for a topic
Forgot to add... Quite a lot of 'tapas' are gluten free. Ones to look for: Tortilla de patata (a thick omelette made with potatoes and onions) should be 'sin gluten', and chorizo cooked in red wine makes a nice dish. Look out for sobrasada, which is very Mallorcan, a softer type of sausage/pate which you can spread on gluten free crispbread which...1 point -
Mallorca Guide
Scott Adams reacted to cristiana for a topic
Hi Jayne Great choice for a gluten-free cycling holiday, I know the island well. The words you need to look for are 'sin gluten' when you are out and about. I think you will be amazed at how many packets and canned goods are clearly labelled 'sin gluten' in the supermarkets - many more than one sees here - often in quite large type. There seems...1 point -
Making significant changes in our diets, even when it is in, what would we are told by the experts, a healthy direction, can be upsetting to our system until it adjusts. To make an analogy, it's like beginning an exercise regiment when we don't ease into it gradually. That's one thing that occurs to me as a response. And I think as we get up in years this...1 point
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Hi. So sorry to hear about your shingles. There is a lidocaine cream that you can get at Walmart that will help numb the pain. That's what I used for mine. It can't be put near your eyes or in your ears. I hope your doctor gave you valacyclovir which is an antiviral. It does lessen the symptoms. If it is in your eyes, see an ophthalmologist. They have...1 point
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DH Photo Bank
jenniber reacted to Scott Adams for a topic
It's frustrating that you endured extra years suffering, which some simple tests could have been done years ago to figure this out. Your story reinforces the idea that the only person who will truly look after your health is yourself, and not necessarily doctors. They are often too busy to really focus on you, or are missing the symptoms and key knowledge...1 point
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By knitty kitty · Posted
@Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe and nontoxic. Vitamin D level should be above 70 nmol/L. Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L. Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer. We need more thiamine if we eat a diet high in simple carbohydrates. For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy. If there's insufficient thiamine the carbs get stored as fat. Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease. This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease. Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts. Adding a B Complex and additional thiamine improves health for Celiacs. Thiamine is safe and nontoxic even in high doses. Thiamine helps the mitochondria in cells to function. Thiamine interacts with each of the other B vitamins. They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/ -
Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten. My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity. Thanks again!
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By knitty kitty · Posted
Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy. Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil. Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label. I have a crustacean/shellfish/fish allergy. I like Life Extension Bioactive Complete B Complex. I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D. Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta. It's rare to have a single vitamin deficiency. The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests. These are subclinical deficiencies within organs and tissues. Blood is a transportation system. The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart. If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician? -
By Scott Adams · Posted
I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
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