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I developed a heart arrhythmia and on several occasions had to wear a 24 hour Holter monitor. Among other things, I had premature atrial complexes (PACs) and occasional AFib. I was very fit at the time, running and cycling. This completely disappeared following my diagnosis and following a strict gluten free diet. I haven't had a single episode since, in...2 points
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We all would but that one is a pipe dream. There just isn't enough demand from a business standpoint to justify a whole fast food chain converting operations to comply with GFCO standards.2 points
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FDA says that most drugs are gluten-free???
Vanessalynn and one other reacted to Tuba1971 for a topic
I had been glutened from somewhere since I pretty much make all my food from scratch. I had to have an endoscopy which should gluten damage, had blood work which also indicated high gluten. 4 years ago when I had these tests my gluten levels were all in good alignment. It comes down to my levothyroxin accord brand that must have gluten in it. I switched to...2 points -
FDA says that most drugs are gluten-free???
Vanessalynn and one other reacted to Kathleen Mostek for a topic
I had to stop many medications due to being glutened. I slowly took one medication at a time and did a “drug holiday” of at least a week. If I was not sure, I waited a few weeks and tried again. Interestingly, some medications that I was on for decades, were outsourced to a specific company in India. Some meds had 15 or more additives! It took hours of res...2 points -
Is Chipotle Gluten-Free? A Celiac's Guide to Safe Dining
M Savarese and one other reacted to cam6 for an article
A tip I have learned when placing an order using the app is to use this name on my bowl instead of my actual name: Gluten Allergy2 points -
New Study Reveals High Risk of Digestive Cancers in Patients with Celiac Disease
RobinGroenevelt and one other reacted to cristiana for an article
I went to France about five years after my diagnosis and at that time found I was reacting a lot to food that made no mention of gluten in the ingredients, and my antibodies were raised after my visit as I had my annual review just after the trip. I felt that food labelling wasn't as reliable as the UK, and cross contamination a more marked problem...2 points -
Does anyone here also have Afib
Scott Adams reacted to Yaya for a topic
My heart went into A-Fib following my recovery from Covid. It is now known that Covid is a catalyst for Long Haulers syndrome. In Dec 2022 I missed the last booster until I was already incubating COVID. Became ill 5 days after the shot. I thought I was completely well 10 / 12 days later, felt great. Then collapsed on Feb 17, 2023 as my formerly perfect heart...1 point -
All growing up I've had canker sores- more would erupt when I ate walnuts. Once I was diagnosed and started eating gluten-free, no more canker sores-, not even when I eat walnuts. My siblings get them and refuse to be tested. They often say to me, jokingly, 'I'm allergic to gluten-free'. One of my sister's has dental enamel discoloration and...1 point
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Help Understanding Test Results
Scott Adams reacted to Brown42186 for a topic
That was a typo. It was supposed to be one. I still don't have my biopsy results from my endoscopy, but the findings according to my paperwork were grade B esophagitis and localized continuous erythema and friability of the mucosa in the antrum which is compatible with gastritis. She took lots of biopsies of my stomach, esophagus, and small intestine...1 point -
Getting sick much more often
knitty kitty reacted to Sanna King for a topic
I’m doing OK except for an instance of cross contamination that knocked me for a loop over the weekend. Feeling much better today with still a little fatigue. Picking up tips on how to avoid future such incidents and becoming aware of just how sensitive I am. Looking forward to better days with more hope for improved health than prior to diagnosis.1 point -
Getting sick much more often
knitty kitty reacted to DebJ14 for a topic
I had the exact opposite thing happen. Prior to my diagnosis and introduction of the gluten-free diet, I was sick all the time. My file at the ENT was so thick because it was one upper respiratory infection, one sinus infection, one ear infection after another. Year after year after year. I have only been sick once in 18 years and I know exactly who gave...1 point -
DR1-DQ5 neurological symptoms
Scott Adams reacted to Murilo P for a topic
It has been a while and I would like to post an update. The hallucinations are completely gone. Thanks to one bottle of B1 as benfotiamine and one of B3 as niacin, both taken together. I will buy more. The other symptoms are still being treated. Now I can already affirm that the symptoms are part of Borderline Personality Disorder. Yet I do have...1 point -
If there were stains or particles on a drink can in an area that would either contact the drink or my lips, I would wash that can whether or not I had celiac disease.1 point
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Not Just Wheat, Barley and Rye Glutens that make us sick
Scott Adams reacted to Bebygirl01 for a topic
You are on the money, but I should also add that Italian, French and other countries research shows exactly what I have said. Our FDA is behind the ball when it comes to this research and I am hopeful that Kennedy can straighten this out soon, albeit he is giving the food companies too long to just remove food dyes from our foods when in fact they have to...1 point -
Ten Things to Try if You Accidentally Eat Gluten
Scott Adams reacted to Kathleen Mostek for an article
Gluten free peppermint Tums!1 point -
Does anyone here also have Afib
Scott Adams reacted to larc for a topic
Thanks for your thoughts on this. My reactions to gluten are complex and involve more than just my heart and arteries. The problems with what It does to my cardiovascular system do present me with a bit of a conundrum at times. For instance, I had cardio bypass surgery in 2002 (at age 53) and then again had angina and artery issues in 2006. At the same time...1 point -
Immediate Reaction
Scott Adams reacted to Beverley Ann Johnson for a topic
HI, yes I get this reaction if I eat gluten by mistake or if I eat high fodmap foods as well. I become nauseous, vomit then it hits the muscles, my legs sometimes give out. It takes a while to feel "normal" again.1 point -
No crypt hyperplasia but there's lymphocytic infiltration and villi atrophy?
knitty kitty reacted to trents for a topic
Welcome to this online community, @Mina H! 1. Apart from any consideration of crypt hyperplasia, villous atrophy is the hallmark of celiac disease. There are some other things that can cause villous atrophy such as an intolerance to cow's milk protein (CMP), chronic NSAID use, a certain blood pressure med, certain parasitic intestinal infections and...1 point -
NEW - 7 year old daughter diagnosed but 'not officially' - negligence from NHS
cristiana reacted to Scott Adams for a topic
I think both systems have merits and faults, but in my opinion no citizen of any country should be denied health care, and it should be a basic human right, no matter your income.1 point -
The Environmental Triggers of Celiac Disease: Are We Missing Something? (+Video)
Scott Adams reacted to trents for an article
Don't we wish there were!1 point -
Does anyone here also have Afib
Russ H reacted to Scott Adams for a topic
It’s frustrating how little awareness there is around celiac complications, even among doctors. Your discovery about histamine intolerance makes so much sense. It’s interesting how interconnected these reactions can be (heart arrhythmias from food? No one warns you about that). It’s great that antihistamines helped, and the ranitidine connection is a ...1 point -
Are Good & Gather Products Safe?
Scott Adams reacted to ZandZsmom for a topic
Are you using the same mixer that you used for your gluten containing baking? That could be your culprit.1 point -
Father, it's been some time since my last hookworm larvae innoculation
John Scott reacted to dixonpete for a blog entry
I did a 5-day fast in March that really messed up my stools making faecal sample collection problematic. Apparently I'm one of the few people that really need fiber always going through my system to prevent things going to hell, so next time I fast I'll be doing that even though it does break the spirit of fasting. Seven days ago I set up 5 small jars...1 point -
Father, it's been some time since my last hookworm larvae innoculation
John Scott reacted to dixonpete for a blog entry
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R there any organizations that help with financial costs of food?
captaincrab55 reacted to trents for a topic
Welcome to the forum, @CiCi1021! Well, to begin with, most of us have found it isn't necessary to buy a lot of specifically labeled "gluten free" or "Certified Gluten Free" prepackaged food items as long as you are willing and able to cook from scratch. This is especially true since testing by celiac watchdog groups has cast some serious doubt on how...1 point -
Thanks for sharing, Karen. Certainly a needed reminder what we already knew (and I've posted many times on this forum) but sometimes forget, namely, autoimmune disorders tend to cluster. Where one is found, you can look for others to show up eventually. The thing that is unusual in your son's case is the onset of several of them at such a young age. My sister...1 point
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Hi there. My son is turning 16 this month. He had an endoscopy and biopsy to confirm celiac. He went gluten-free and his pain never got any better. I think it got worse. Months went by. The pain started around 7th grade. He missed a lot of school in 8th grade, and a whole lot in 9th grade. He couldn't go to school in 10th grade. All along the gastroenterologist...1 point
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Inhaler problem
Momma Cas reacted to knitty kitty for a topic
Hello, The medication in these inhalers can cause a thiamine deficiency if used by someone already low in thiamine. We don't absorb sufficient amounts of vitamins and minerals due to the inflammation and damage done to our villi in Celiac Disease. Even a long term strict gluten free diet may not provide sufficient amounts of vitamins and minerals...1 point -
Gluten-Free at Taco Bell: A Celiac's Guide to the Menu (+Video)
Scott Adams reacted to SBT4 for an article
Would love to see some of these fast food places be certified gluten free. I have a teenaged grandson with celiac and it’s so hard to be a teen and not able to go where your friends go.1 point -
I was the one that was asking about vaccines. I was also the one with my antibodies over 500's that continues to go up. Just told to take out all gluten-free processes foods out of my diet because they can still contain gluten. ( 20 parts per million) Have been put on folate, vitamin D and B12 . Hope this helps. Thanks for the article on gluten-free food...1 point
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Thanks Christina. The Granola products I tried were marked Gluten Free so supposed to be suitable. I've had many tests done but no results yet but I get the results in next day or so. I may well have these issues due to deficiencies. Just wanted to get some anecdotal feedback about the issue before I see the GE specialist If and...1 point
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Hard Rock Cafe Customer Feels Mocked Over Celiac Disease
Scott Adams reacted to markpadgett8245 for an article
It does seem the customer here was looking for a fight. Best to state your needs at the beginning when dining out--be it a person with Celiac or with gluten sensitivity. I have never seen or heard of someone with Celiac who can drink regular beer. All that being said, a little civility goes a long way but if you are going to claim you are allergic to gluten...1 point -
6 week challenge; How much gluten?
Scott Adams reacted to Pinkdoglady for a topic
Thank you everyone for your answers, they were all very helpful, and some very useful links. I am rethinking the value of having the biopsy as I’m not sure it will give any actual benefits.1 point -
Question
Scott Adams reacted to fritz2 for a topic
My first post includes the blood test report done by the second doctor. They told me to take two Naproxen tablets per day. Absolutely worthless but I'm doing it. I get to visit the doctor again in two weeks. These doctors are worthless. I had to clue them in to the fact that they used to treat me for fibromyalgia 15 years ago with vicodin until some...1 point -
I’m terrified it’s too late for me😭
cristiana reacted to Scott Adams for a topic
@Parkrunner Your journey with undiagnosed celiac disease highlights how easily this condition can be overlooked, especially when symptoms are mild or mistaken for other issues. It’s frustrating that it took decades—and serious complications like osteoporosis—before getting answers, but it’s inspiring to hear how much your health has improved since going g...1 point -
New Here…
Scott Adams reacted to PixieDixie for a topic
Yeah, hard for me to not eat salmon though it does cause varying degrees of irritation to the rash. Alright, guess I’m gonna have to be careful with iodine. Thanks for the article.1 point -
I’m terrified it’s too late for me😭
cristiana reacted to Parkrunner for a topic
I probably had celiac for 40 years, late 20s to late 60s, before being diagnosed. I was a runner and had mild intestinal symptoms most of the time. There was a couple of months in my late 40s where I had significant diarrhea every day for 6 weeks. Saw two PCPs about it and celiac wasn't on their radar. In my 30s, 40s, 50s, and 60s I had insomnia, hot...1 point -
Does anyone else have seborrheic dermatitis
Scott Adams reacted to bohanley for a topic
Yes I have an itchy scalp and some small area of itchy scaly skin at the base of my scalp on my neck. My hairdresser noticed it also.1 point -
Does anyone else have seborrheic dermatitis
Scott Adams reacted to cristiana for a topic
Hi @CarolTN I haven't been diagnosed with seborrheic dermatitis but as @Scott Adams says, like a lot of coeliacs I do suffer from itchy skin, and now adult onset eczema. The latter started during one of the lockdowns. I find my skin is often itchy if the temperature changes from hot to cold or cold to hot, that seems to set it off. This time of...1 point -
Question
Scott Adams reacted to VinnieVan for a topic
Thank you so much! This is helpful, just to know. Over the years, I’ve seen the scope and understanding of the disease broaden. In some ways, I think it’s remarkable a doctor in Oregon way back then could diagnose a baby he’d never met so quickly. I wish I’d asked more questions!!1 point -
Anyone Here Sensitive To Fillers Such As Cellulose?
Scott Adams reacted to Theresa2407 for a topic
Yes mostly found on RX pill capsules and store bought shredded cheese are the worst for me.1 point -
Is Chipotle Gluten-Free? A Celiac's Guide to Safe Dining
Scott Adams reacted to trents for an article
@cam6, the problem I see with that is if multiple people call in an order around the same time using the name, "Gluten Allergy". You might get someone else's order.1 point -
So I’ve been eating gluten free since doing a further blood test and that came back giving a positive result, they said I could go back and have another endoscopy but just didn’t want to go through that again. I’ve been gluten free since October and do feel a lot better so have just accepted that this is the way for me now, even though results are still...1 point
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RobinGroenevelt and Scott Adams, Thank you for your comments but I think your responses don't address my question. I am curious about the extent of diet compliance in the large meta study and whether they did subgroup analysis by diet. This retrospective study found evidence of increased risk of cancer and other co-morbidities in their Celiac cohort...1 point
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gluten-free scanner
Scott Adams reacted to Mollie Hart for a topic
Thank you Scott! This is very helpful1 point -
New Study Reveals High Risk of Digestive Cancers in Patients with Celiac Disease
cristiana reacted to RobinGroenevelt for an article
I live in France and recently assisted a colloquium on Celiac and there were two French experts (doctors) there. They said that with a good diet the risk of increased cancer is pretty much no different than non-celiac people, which was a big relief for me to hear. They were more concerned about bones and said that even that can be “normal” with a good die...1 point -
Vitamin Levels and constipation
knitty kitty reacted to Celiac16 for a topic
@Manaan2 hi Manaan, this is going to sound very random but vitamin b1, thiamine, helped me with constipation. It can also cause anemia if low (so can other b vitamins so a b complex or multivitamin could help, probably a good safety net too). My pediatrician had me take a multivitamin when I was diagnosed as a kid too just to cover all the bases.1 point -
gluten free flour blend recipes
Bonnie Sonaldson reacted to lmemsm for a topic
I've been trying various gluten free flour blend recipes. I'm not happy with the taste of any of them. Does anyone have tips on how to create your own gluten free flour blend recipes? Any good books covering the subject? I have an intolerance to xanthan gum, but I can use alternatives like flax, chia, psyllium husk and gelatin. I bought at least a dozen...1 point -
I looked back at my records working with my previous naturopath (the one who diagnosed me with Celiacs and I had all kinds of vitamin deficiencies), and see that I did have a B1 deficiency. My notes say that the B1 greatly improved my energy, no notes about asthma. I'm not sure why I am no longer taking separate B1 or a Multi B supplement, I guess I ran...1 point
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By elizabethhousworth · Posted
Thanks. My son has been on B2 for two to three years now. I found literature about B1 earlier and put him on a B1 supplement, but not thiamine tetrahydrofurfuryl disulfide specifically. He also gets D and Magnesium. He goes to his doctor in June and I am going to ask for bloodwork to look for any deficiencies. What I suspect is that he is having a gluten-like reaction to the proteins in other grains. It is well known that a small percentage of celiac patients react to the protein in oats. Oats are in gluten-free Oreos, so we removed them. He got a little better. The science with oats is pretty solid. My son's nutritionist knows about it and it is easily found in PubMed. I suspect my son is reacting to something else. The next thing that I only just removed was corn, at least things with corn protein. I need to give that a couple of months. If that doesn't work, I will try to replace his cheese with goat-milk cheese, although that will be hard. My son was migraine free for over a year on a strict gluten-free diet before this past fall. I can test his foods for gluten and I have given in to diet rigidity. He eats my homemade refried beans and rice for lunch every day, so his rigid diet contains pretty healthy components. Given his antibody levels (tTG-IgA very low) and that I tested everything under the son that he ingests when his migraines returned and nothing tested positive for gluten, I think he really is gluten-free. So my personal working hypothesis is that he is having a reaction to a similar protein, one in another grain. However, the neurologist sees migraines come and go in lots of normal people, so it might just be that he is now having multiple (3-10) migraines monthly and it is hormonal or weather-related or something that is entirely distinct from an antibody reaction. I just would like them to go away again, as would he. Thanks again! Elizabeth -
By knitty kitty · Posted
Welcome to the forum, @jamiet06, Yes, it does point in that direction. Your report says "Correlation with clinical findings and results of serological studies is recommended" is saying you should undergo a gluten challenge and be tested for antibodies associated with Celiac Disease. These antibodies are produced in celiac disease in response to gluten, but you have to eat generous amounts of gluten for the antibodies to show up in the bloodstream. A gluten challenge means you eat 10 grams or more of gluten (4 to 6 slices of gluten containing bread or equivalent or more) per day for a minimum of two weeks. -
By knitty kitty · Posted
@elizabethhousworth, I found that supplementing with Riboflavin Vitamin B2 has helped my migraines immensely. Effect of Vitamin B2 supplementation on migraine prophylaxis: a systematic review and meta-analysis https://pubmed.ncbi.nlm.nih.gov/33779525/ "Conclusions: A pooled analysis of available randomized controlled clinical trials demonstrated that Vitamin B2 400 mg/day for three months supplementation had significant effect on days, duration, frequency, and pain score of migraine attacks." Dr. Derrick Lonsdale and Dr. Chandler Marrs have found supplementing with a form if thiamine vitamin B1 called TTFD (tetrahydrofurfuryl disulfide) helps in autism. Treatment of autism spectrum children with thiamine tetrahydrofurfuryl disulfide: a pilot study https://pubmed.ncbi.nlm.nih.gov/12195231/ The Rationale for Vitamin, Mineral, and Cofactor Treatment in the Precision Medical Care of Autism Spectrum Disorder https://pmc.ncbi.nlm.nih.gov/articles/PMC9964499/ Hope this helps! -
By knitty kitty · Posted
Interesting reading on Histamine Intolerance (HIT): Histamine Intolerance: The Current State of the Art https://pmc.ncbi.nlm.nih.gov/articles/PMC7463562/ Histamine Intolerance—The More We Know the Less We Know. A Review https://pmc.ncbi.nlm.nih.gov/articles/PMC8308327/ We need the enzyme DAO (Diamond Oxidase) to break down histamine. Our body can make DAO with Pyridoxine B6, Vitamin C, and copper. B12, zinc and magnesium, as well as thiamine, help, too. DAO supplements made from beef or pork kidneys are available, too. -
By Sanna King · Posted
Thank you! I did not realize the role of thiamine in hit healing. I will look for Life Extension then.
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