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Key word, "gluten-like". By the way, have you looked up Dr. Osborne's credentials and his background? He is a licensed nutritionist but his scientific? medical? clinical background is that of a chiropractor. He is not taken seriously by many experts in the medical and scientific community. If it is helpful to you to see these other cereal grain...4 points -
@Bebygirl01, if you want to play word games with the term, "gluten", we can do that. The proteins you list in these other cereal grains besides wheat, barley and rye are somewhat different from that found in wheat, barley and rye and, technically speaking, are not "gluten". Technically speaking, "gluten" should only be applied to a particular protein found...4 points
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Welcome to the forum, @Marie70! The first thing to know is that celiac disease has a genetic base. The two main genes that have been identified as providing the potential to develop celiac disease are HLA-DQ2 and HLA-DQ8. About 40% of the general population carries one or both of these genes. However, only about 1% of the general population ever develops...4 points
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Supplements for those Diagnosed with Celiac Disease
Barbra S and 3 others reacted to Scott Adams for a topic
I am often asked about which supplements I take, so I'm sharing it here. I think you'll find a big variation of what supplements different people on this forum take, but here is a breakdown of the many I take. This regimen has worked well for me, but it has take many years for me to add and remove different ones. Also, all of this list may not apply...4 points -
I went through issues with oats when first diagnosed. I thought I couldn't eat any oats at all, even certified gluten-free. Then I learned about purity protocol oats. The list here has gotten smaller through the years, so I check it every time I order. I had been ordering one brand on the list that was later found to contain lower levels of gluten. I...3 points
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Lectins are carbohydrate storage proteins. Different plants have different lectins. Gluten is a lectin, but not all lectins are gluten. Lectins are made up of a protein "spine" with a bunch of carbohydrate molecules stuck to it. During digestion, the carbohydrates get pulled off, but that protein "spine" can get stuck to cell membranes. In...3 points
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I’m terrified it’s too late for me😭
knitty kitty and 2 others reacted to NavyMom for a topic
Hi CathiJean, Wipe those tears my friend. Finding out that you have celiac just gave you the cheat code on how to start feeling better! It may feel like a loss right now, but honestly within 6 months you will start feeling better. Within a year you will look back and wonder how in the world did I survive feeling like that for what feels like a lifetime...3 points -
The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a...3 points
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FDA's Inaction on Gluten Labeling Fails to Protect Celiac Patients (+Video)
KelleyJo and 2 others reacted to Helen Vajk for an article
Amen. Even worse than the food labeling is the near-complete absence of medication labeling.3 points -
Family education
knitty kitty and 2 others reacted to cristiana for a topic
@sillyyak52 Welcome to the forum! I'm just about to go away for a couple of days but read this and just had to reply. I am so sorry for what you are going through... it is really tough. Perhaps finding a short video online which explains the seriousness of celiac disease might help. Just sit your family down and say, "Please just watch this...3 points -
Being a burden to family/friends
Awol cast iron stomach and 2 others reacted to dublin555 for a topic
I totally agree, it’s so much more than just the physical struggle that occurs, there is the emotional struggle that goes along with it. It’s almost like you’re always navigating people who are uncomfortable with your needs and that pressure really wears you down. The fact is, the one that really did care will understand. This has nothing to do with you b...3 points -
Is this safe for someone with celiac disease?
knitty kitty and 2 others reacted to RMJ for a topic
I am also asymptomatic. Not everyone with celiac disease reacts the same way to the same amount of gluten, so it is impossible to say for you whether or not such small traces of gluten would be safe. I am tested for tTG-IgA and DGP IgA and IgG annually. My DGP IgA went up once when I was using a certain brand of supposedly gluten free flour, it went...3 points -
Hi @DayaInTheSun Welcome to the forum! I've been a Mod on this forum for some years now and your feelings are shared by many of us. I am not sure how long you have been diagnosed, but in my own case I do find that time has helped. It was pretty exhausting at first trying to explain to friends but they now have a pretty good grasp of coeliac...3 points
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Two things: 1. If you are using drops 3x a day you should be sure to use preservative free. The preservatives themselves can cause irritation. 2. If the problem does not resolve, you may want to have a rheumatologist check for Sjogren's. There appears to be a relationship between celiac and Sjogren's.3 points
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Vomiting - celiac or constipation
Scott Adams and 2 others reacted to sh00148 for a topic
Morning All, Just an update, I got an urgent appointment through my contact with PALS. The doctor confirmed her levels were the highest possible so she likely had higher levels of inflammation. Since the appointment, they ordered a second set of bloods, but as many of you confirmed he felt there was no doubt she was coeliac so asked us to start...3 points -
Yes, get serum antibody testing done for celiac disease. You could also have NCGS (Non Celiac Gluten Sensitivity). NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common...3 points
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Celiac Maybe a Possibility?
Aleda D and 2 others reacted to Wheatwacked for a topic
It seems you have proven that you cannot eat gluten. You've done what your doctors have not been able to do in 40 years. That's your low vitamin D, a common symptom with Celiac Disease. Zinc is also a common defiency. Its an antiviral. that's why zinc gluconate lozenges work against airborne viruses. Vitamin D and the Immune System+ ...3 points -
Lymph nodes in neck + thyroid issues
knitty kitty and 2 others reacted to RMJ for a topic
I’ve had on and off swelling of a salivary gland below my jaw - sialoadenitis. It was very visible when it swelled though.3 points -
Premature Graying and Celiac Disease: A Case Study and Implications for Diagnosis
Wheatwacked and 2 others reacted to AnnaNZ for an article
I started greying in my 40s, gave up gluten in September 2023 aged 59, have taken courses of Vitamin D, B complex and zinc and my completely grey hair has started to regenerate dark brown. Real visible proof of malabsorption.3 points -
I need to correct something I wrote earlier this thread. The energy bars from Costco no longer have the Gluten Free certification on their labels. It disappeared sometime this year. The ingredients do not contain wheat, rye or barley but this product is processed in a facility where they also process items with wheat. I assume this is the problem. I...3 points
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10 years later, my celiac is progressing
GardeningForHealth and 2 others reacted to Scott Adams for a topic
It definitely makes sense to get your vitamin & mineral levels tested before you start supplementing, and unfortunately my doctors never recommended this approach at the time of my diagnosis, nor did they ever recommend any supplementation. Unfortunately this led to many years of dealing with gluten ataxia issues that were mostly only resolved decades...3 points -
Gluten as a Proinflammatory Inducer of Autoimmunity in Everyone
Lucille Cholerton and 2 others reacted to KDrutz for an article
Wondering if they tested both organic and non-organic gluten, and if herbicides or pesticides exacerbated the inflammation response. My personal experience is that I suffered with seasonal allergies and cat allergies for years until I stopped eating gluten (when my daughter was diagnosed with Celiac). After six months or so, all of my allergies were...3 points -
I understand the concept of rewarding those companies who are consistently in compliance with GFCO standards and the idea of doing so has merit but it is also true that while the cat is away the mice will play. As others have suggested, perhaps the introduction of unannounced, random drop in testing needs to be added to the mix to keep them on their toes...3 points
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Celiacs should also have the right to complete labeling of gluten presence in medications, and all essential medications should be manufactured gluten free.3 points
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@PosterboyThanks for the article - it definitely helped when I was looking into thiamine and niacin for celiacs. Interesting too is that schizophrenia has been linked with undiagnosed celiacs and in orthomolecular therapy is treated like pellagra with high dose niacin. I have supplemented with both and have benefited from them… they are kind of counterparts i...3 points
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From: https://en.wikipedia.org/wiki/Gluten "Gluten is a structural protein naturally found in certain cereal grains. The term gluten usually refers to the elastic network of a wheat grain's proteins, gliadin and glutenin primarily, that forms readily with the addition of water and often kneading in the case of bread dough. The types of grains that contain...2 points
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Thanks for the information, knitty kitty. It helps bring some clarity and reduces the confusion that misinformation such as is contained in this thread title introduces into the community. People new to the celiac experience are already struggling to wrap their minds around not being able to eat just wheat, barley and rye any longer. We don't need to unnecessarily...2 points
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I’m terrified it’s too late for me😭
knitty kitty and one other reacted to jeema for a topic
@Cathijean90 It's pretty common to suffer from symptoms for a long time. I had symptoms for a decade before I was diagnosed and I think that is about average. The problem is the symptoms are often vague enough to be attributed to other digestive issues and that was the case with me. It was only after I found out I was anemic from routine bloodwork and...2 points -
Hiya..I was 48 when diagnosed two years ago and I was in right bad way but strict gluten-free diet you will recover I promise x2 points
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Thank you for this! "Medical" advice, and I use the term loosely, is so rampant and so unproven nowadays (I even have relatives that fall down these rabbit holes and are shocked I don't follow.), so I am skeptical of everything. I appreciate the confirmation of my suspicions that this was more hearsay. Onward with my rice and corn. lol2 points
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Being present in same room as gluten pasta cooking
Scott Adams and one other reacted to RMJ for a topic
Scientist here: Actual steam shouldn’t contain gluten - the gluten molecule is too large and heavy. In distillation the larger/heavier molecules stay with the liquid. However a quick google search shows plenty of people who say they react when pasta is cooked. Vigorously boiling pasta water could also create droplets that are larger than steam droplets t...2 points -
Could ZED1227 Pave the Way for Celiacs to Eat Gluten Without Harm?
MamaBearLiv and one other reacted to Scott Adams for an article
Celiac.com 09/16/2024 - Celiac disease is an autoimmune condition that affects individuals when they consume gluten, a protein found in wheat, barley, and rye. In those with the disease, the ingestion of gluten triggers an immune response...2 points -
Weird Symptoms
Scott Adams and one other reacted to Jeff Platt for a topic
Ear pain and ringing your entire life may or may not be TMJ related but could be something else. A good TMJ exam would be helpful to rule that out as a potential cause from a dentist who treats that. I have teens as well as adults of all ages who suffer from TMJ issues so it’s not a certain age when it shows up.2 points -
To be certain that the "gluten challenge" results in valid testing down the road, I would plan on having your daughter restart gluten consumption four weeks prior to the blood draw or the endoscopy/biopsy (whichever the GI doc wants to go for first) to the tune of 4-6 slices of wheat bread (approximately 10g of gluten) daily. But be aware that once you withdraw...2 points
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How Celiac Disease Could Increase Your Risk of Kidney Problems
Barbra S and one other reacted to Scott Adams for an article
Celiac.com 11/04/2024 - Celiac disease is an autoimmune disorder that primarily affects the digestive system, but its influence extends far beyond the gut. When individuals with celiac disease consume gluten, an immune response is triggered...2 points -
Those iron tablets are probably your current culprit for stomach pain. I am also anemic and was prescribed the iron tablets as well. I wouldn’t wish those things on my worst enemy! They constipate me horribly and cause the most awful abdominal pain! I refuse to take them. I’m trying gentle iron right now and I think it’s still bloating me.2 points
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Celiac diagnosis
knitty kitty and one other reacted to trents for a topic
Welcome to the forum, @Vickey Matteson! What you describe is actually very common in the celiac community. We call it "silent celiac disease". Silent in the sense of not causing significant discomfort or distress. After diagnosis, many silent celiacs look back and realize they did have some symptoms but they were so minor as to not grab their attention...2 points -
Yes, by all means, get another doc. Believe me, the ignorance about celiac disease in the medical community sometimes amazes me! Some of them treat it as if it were the latest "fad" diagnosis. It is getting better but there are a lot older docs, even GI specialists out there, who are operating on very outdated notions concerning celiac disease.2 points
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Premature Graying and Celiac Disease: A Case Study and Implications for Diagnosis
knitty kitty and one other reacted to icarumba for an article
I started getting symptoms of celiac in 2007, diagnosed in 2011, and now with 13 years of a mostly gluten free diet and now a strict gluten free diet (I used to cheat on vacation and holidays, but haven't for years now), at 71 years old (today is my birthday! lol) my hair is dark except for my temples and my beard is just grey on the chin, I'm very pleased...2 points -
Difficulty to breath without taking a deep breath
knitty kitty and one other reacted to Wheatwacked for a topic
I am unsure, did the breathing issue start with eating gluten free, or was that the reason you were tested for Celiac? Shortness of breath can be a symptom of thiamine (vitamin B1) deficiency, particularly when accompanied by other symptoms. Vitamin D deficiency can cause breathing symptoms in children and adults. Since Celiac Disease...2 points -
Constant Hunger
knitty kitty and one other reacted to Beverage for a topic
I was 59 when diagnosed with Celiacs. I had not had the typical intestinal symptoms, mostly the pain, brain fox, etc. When I started gluten free, OMG, I couldn't get enough food and I dropped a ton of water weight / inflammation in the first few weeks. I was like a teenager, couldn't get enough and didn't gain back any weight, was actually too thin (bcuz...2 points -
Good experience at The Olive Garden
Scott Adams and one other reacted to Oldturdle for a topic
An anecdotal update. I am sure that Gliadenx only works for small amounts of cross contamination only. I have taken one or two before eating "gluten free" foods at restaurants, and never had a problem. Recently, I was at a pizza party at a restaurant, and thought "what the hell." I didn't want to make a stink and insist that an expensive gluuten free...2 points -
Advice regarding symptoms
Scott Adams and one other reacted to Wheatwacked for a topic
I like to think of it as amazing that one ingredient (gluten) can cause so many different symptoms. I had improvement in 19 different symptoms in my first few years of gluten free diet. Choline is essential for fat digestion. In 2011 the European Food Safety Athority authorised a number of choline-related health claims. It was concluded that a cause...2 points -
The mental toll
knitty kitty and one other reacted to oliver2023 for a topic
Thank you for your information. I have stopped eating milk and I'm monitoring the development. It's just so frustrating to deal so many restrictions.2 points -
DR1-DQ5 neurological symptoms
knitty kitty and one other reacted to KathleenMK for a topic
I love that you are looking for nutritional ways to help your wife and Knitty Kitty has given some detailed research about the B vitamins which are so needed in nerve and brain function. Craving gluten filled carbs maybe be a symptom of needing those B vitamins. Chemistry is only part of the problem. I come from a family history of depression( lost family...2 points -
@Blue Roan Hi Blue, sorry as this is going to have to be a bit of a rushed not properly edited post as I'm going on a trip for a few days but will try to check back on replies, if there are any, when I can. I have felt like you do (and still sometimes do) with arms and legs not being mine. It wa particularly bad following a neck injury (picking up...2 points
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Cristiana, it also needs to be said since test scales are not standardized in the laboratory world, comparing numbers from different test periods can be misleading unless the same labs were used each time.2 points
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Welcome. I ate at restaurants and people's homes for many years after I was diagnosed, and I felt bad a lot. For years. I considered it cheating, but it was not worth it. Restaurants and friends may mean well, but they're correct when they tell you that they can't guarantee anything. I had a girlfriend who would get angry when I looked at ingredients...2 points
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gluten-free Bread
plumbago and one other reacted to Peace lily for a topic
I live in Rhode Island so I’ve been having a problem with the bread issue too . I just bought a gluten-free white sliced bread not bad it’s pretty good big slices compared to others it’s called Live Free I bought it at Aldi . I’ve made bread also but some times I don’t have the time . peace lily2 points -
14 year old with Celiac & EOE still suffering...
knitty kitty and one other reacted to Posterboy for a topic
Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results. The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal...2 points
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By Scott Adams · Posted
Thanks for this update, and it is scary that drug manufacturing is being outsourced to India, a country that is notorious for having very little, or extremely relaxed business regulations. -
By Scott Adams · Posted
Just so you know GliadinX is not supposed to be used in place of a gluten-free diet, and may only be able to break down small amounts of gluten in the stomach. Small amounts might mean some wheat bread crumbs on your scrambled eggs at a restaurant. I'm not sure how your taking it, but I can say that I used to get glutened ~30% of the time when eating out, but now if I take a couple of GliadinX shortly before I eat a restaurant meal I no longer have issues, even though I suspect that the cross-contamination issues are likely still present in the restaurants I'm at. It won't work with large amounts of gluten, which they disclose on their website--and full disclosure, they are a sponsor here, but that is not why I'm responding. -
By Scott Adams · Posted
No everyone with DH has issues with iodine, but some do, so it's good to be aware of this just in case you fall into that group. -
By Scott Adams · Posted
@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 gluten-free. The fact that you’re running again, sleeping better, and avoiding medications in your 70s is a testament to the power of proper diagnosis and dietary changes. It’s also a good reminder that celiac can manifest in so many ways (like your arrhythmia, muscle cramps, and night sweats) and that food intolerances, like lactose, often go hand-in-hand. Your experience gives hope to others—even after years of undiagnosed damage, healing is possible. Keep enjoying that gluten-free, active life—you’ve earned it!
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