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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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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...3 points
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@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...3 points
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Celiac disease does not damage the stomach. It damages the lining of the small bowel, the part of the intestines immediately below the stomach. Also called the duodenum. Do you know if biopsies were taken from this area to look for celiac disease?2 points
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Can anyone offer any advice/help please!
Beverage and one other reacted to knitty kitty for a topic
I agree with @cristianacristiana, @Scott Adams, and @trents. You probably weren't eating sufficient gluten for the test to be accurate. Ten grams of gluten for at least two weeks before testing is needed for accurate blood tests. Three gram of gluten is enough to make you feel unwell. Ten grams of gluten is required for the antibodies to leave...2 points -
Can celiac cause widespread pain??
knitty kitty and one other reacted to cristiana for a topic
Hello @Paula Andrews I started to get a whole host of new pains around the time of my diagnosis and afterwards, quite apart from the expected gastric pain. Pelvic pain was caused by bloating from dairy products; pain in my chest due to bloating caused by iron supplements; costochondritis in my ribs, which was a dull diffuse pain not emanating from the...2 points -
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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Can celiac cause widespread pain??
knitty kitty and one other reacted to Beverage for a topic
I didn't have the typical intestinal symptoms before I was diagnosed, but had severe allergies, asthma, and failing kidneys. I often felt that horrible body achey felling like when coming down with a super bad flu. Now if I get glutened, I feel like I've been hit by a truck.2 points -
Yes, lectins can be problematic for some people. IGG testing can be used to detect celiac disease but not IGE. IGE antibodies have to do with allergic reactions and ceilaic disease is not an allergy, it is an autoimmune reaction. The IGG tests are not as reliable for detecting celiac disease as are the IGA tests but they can be be very helpful, particularly...2 points
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Thank you for clarifying! Something to possibly consider as I continue on my “non-gluten” quest and if I do not improve, but being new to this whole realm and already overwhelmed and stressed, this would have pushed me over the edge right now. 🥹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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Oats gluten free?
Scott Adams and one other reacted to trents for a topic
Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new...2 points -
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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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...2 points
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Previous Biopsy Results
Scott Adams reacted to Katya773 for a topic
Hi thank you so much for your input. It’s been very difficult to navigate this whole Celiac thing with everything that’s happened. What you said makes sense. I have a better understanding of how my doctors NP was able to give me a diagnosis. Yes I agree that staying gluten-free is best, I’ve been doing some research and it seems like DQ 2.5 homo...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 -
Recently diagnosed with Celic disease
Scott Adams reacted to Kathleen Mostek for a topic
I just moved from Bay City. With gastritis, I found that conventional meds (Pepcid, pro tonic, sucrafate) made it worse. Peppermint tums (gluten free) saved me. There are additives in all meds. “Off the Wheaten path”, in Midland, is a drive for you….great sweets. Baynes in Freeland carries some “Third Coast” items, delicious! I also order from them, they are...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 -
Does anyone else have seborrheic dermatitis
captaincrab55 reacted to trents for a topic
Welcome to the forum, @CarolTN! Can you give us some background? Have you been officially diagnosed with either celiac disease or dermatitis herpetiformis or both?1 point -
Blood Test Results(20yo): Celiac?
Scott Adams reacted to dfgray for a topic
I appreciate your insights. Thank you1 point -
Gluten free Eggroll wraps
Scott Adams reacted to Theresa2407 for a topic
those are spring roll wrappers and will not work for true egg rolls; they kept fall apart. But thank you for your reply.1 point -
Anyone Here Sensitive To Fillers Such As Cellulose?
Scott Adams reacted to CelluloseSick for a topic
Scott, thank you. This article is very informative and cogent. Thank you for sharing.1 point -
Anyone Here Sensitive To Fillers Such As Cellulose?
Scott Adams reacted to ShariW for a topic
No problems (that I know of) to cellulose, but I have found that I have a "glutened" response to products containing inulin. Another thing to check for on labels!1 point -
Anyone Here Sensitive To Fillers Such As Cellulose?
Scott Adams reacted to cristiana for a topic
This is a very good comment. I found all sorts of things difficult to stomach for about 2 years after my diagnosis , that I was able to eat again after a while. Eventually there was one thing that I still couldn't eat and that was pure oats (i.e. those certified uncontaminated with gluten, the only oats we coeliacs should be eating). I think it took...1 point -
Anyone Here Sensitive To Fillers Such As Cellulose?
cristiana reacted to Scott Adams for a topic
How long ago were you diagnosed? Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy...1 point -
New diagnosis for 3 year old. Help!
Scott Adams reacted to Beverage for a topic
The doc that diagnosed me emphasized that the ears, eyes, nose, and mouth all drain to the same place. He said, besides obviously not eating foods containing gluten, to eliminate flours from my world immediately. If gluten flour is used, it gets into the air, and would be breathed in through the nose, which drains down to the stomach. Also, if it...1 point -
Anyone Here Sensitive To Fillers Such As Cellulose?
cristiana reacted to CelluloseSick for a topic
Cristina, it’s possible you may find other foods that also give you the same reaction. My advice: make a list and stay away from them.1 point -
Anyone Here Sensitive To Fillers Such As Cellulose?
Scott Adams reacted to CelluloseSick for a topic
Thanks Scott. its been a tough journey. i haven’t been able to take any painkillers for pain, because they all contain some form of cellulose. I’m finally working with a compounding pharmacist to get compounded Ibuprofen w/o cellulose filler … I’ll let you know how that works out. when I tell doctors about my problems with cellulose and med...1 point -
Hi Cosyfeyre and welcome to the forum. Hashimoto's thyroiditis can cause moderately raised levels of tissue transglutaminase antibodies (as can other autoimmune and inflammatory conditions). This could explain the weak positive shown for tTG IgG. It is certainly worth following up. Some people can react to gluten without having coeliac disease, and many...1 point
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Recently diagnosed with Celic disease
captaincrab55 reacted to trents for a topic
Welcome to the forum, @Babygirl877! You may find that your gastritis and your gastroparesis improve once you begin following a gluten free diet consistently. But to arrive at consistency in eating gluten free can involve a real learning curve. This might help:1 point -
Celiac And Eggs
Scott Adams reacted to Scoobygirl3 for a topic
I switched to egg beaters and have no issues. Try that and see if it is a difference maker. I would eat regular eggs and feel like a rock in my chest and stomach and just feels bloated and terrible.1 point -
Hi Cristiana, we're italians, we eat pasta everyday so I guess consuming gluten won't be a problem. Thanks for the help Violet1 point
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I’m terrified it’s too late for me😭
Scott Adams reacted to Cathijean90 for a topic
@NavyMom Thank you so much for this message!! I needed this positivity! There’s already been a huge difference. After a year of no menstrual cycle, it has returned. I made a mistake and ate something with gluten, my rash on my hands came back, my neuropathy pain in my feet was really intensified. I have no idea how I went for so long just dealing with these t...1 point -
Can anyone offer any advice/help please!
cristiana reacted to Scott Adams for a topic
It's possible celiac disease has been ruled out, but that depends on whether you followed the proper protocol of eating tons of gluten for at least 2 weeks before the endoscopy. If you were eating minimal gluten during that time your results could be false-negative. If they did the endoscopy for celiac disease you should have received results--feel free to...1 point -
Oats gluten free?
Scott Adams reacted to Toms for a topic
Something to thing about:- Coeliac Australia supported a study into Oat Toxicity in Coeliacs and found that oats triggered an immune response in eight percent of the 73 people who participated in the study. The study was published in the November 2024, Journal of Autoimmunity.1 point -
On my Celiac journey and discovered I was also reacting to other types of gluten. The FDA in it's finite wisdom only classifies 'wheat, barley and rye' as the gluten's to be considered when a company tests for and stamps their products as gluten free. I am curious as to how many of you are aware of the other types of glutens? And another question to those...1 point
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Headaches / Migraines and Hypoglycaemia
Beverage reacted to knitty kitty for a topic
You're very welcome, @Sarah Grace, You do need a B Complex, but the TTFD is not the same at all. B Complex usually contains Thiamine Hydrochloride (good) or Thiamine Mononitrate (bad) and the other seven essential B vitamins. Don't get vitamins containing Thiamine Mononitrate. This is used because it has a long shelf-life (it won't break down...1 point -
New diagnosis for 3 year old. Help!
knitty kitty reacted to Jsingh for a topic
Hi, I am mother of a six year old who was organized a year ago when she was fine. to answer your question about removing gluten from your kitchen- it will be a mammoth task but your entire kitchen has to be free of gluten for her to be safe. Now I’ve learnt from this forum and others that different celiac patients show different level sensitivities t...1 point -
@Liquid lunch, I prefer the AutoImmune Protocol Diet, developed by a Celiac, Dr. Sarah Ballantyne. I would be interested on your point of view about the AIP diet compared to the Lectin Free diet. Here's some research on both.... Dietary Lectin exclusion: The next big food trend? https://pmc.ncbi.nlm.nih.gov/articles/PMC660380...1 point
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Oats gluten free?
Beverage reacted to knitty kitty for a topic
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...1 point -
Oats gluten free?
Beverage reacted to Lori Lavell for a topic
In fact ALL grains contain different forms of gluten that go by different names. Corn contains Zein and Rice contains Orzenin. We all need to realize that a very small amount of any of these grains can cause continued systemic inflammation which is not optimal for allowing the body to heal itself.1 point -
Test results
Scott Adams reacted to Levi for a topic
Search “deamidated gliadin Abs, IgG is 26.6/abnormal high” online for articles on your exact question above, and I’m sure this forum has an expert in explaining your test results as well.1 point -
Has anyone struggled with high blood pressure?
Scott Adams reacted to Beverage for a topic
I had horrible reaction to lisinopril, a severe cough that kept me up all night. The cough is apparently common. I did better with irbesartan, no cough, and it controlled my BP better too.1 point -
SkinSafe
Itsabit reacted to knitty kitty for a topic
@Itsabit, Ask your doctor for an erythrocyte transkelatose test to measure thiamine. It's a better measure of thiamine deficiency than a serum test.1 point -
Perhaps you would still like to answer the questions I posed on this topic, because that is all I asked. I am curious to know the answers to those questions, I do not care about the background of Dr. Osborne as I am more aware of the situation than you are, and he is also one of the best known authors out there on Celiac disease. But did you even bother to...1 point
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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 Scott Adams · Posted
Most likely cross-contamination I believe. -
I think it takes different people different amounts of time, but in my own case I had pain, bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went. I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks. That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better. Now I can tolerate it well. From Coeliac UK "The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary." So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids. Bear in mind you should be able to reintroduce it. As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12. Were these levels tested? If not, I would suggest you get them done. If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.
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By knitty kitty · Posted
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. There are eight B vitamins that all work together. Thiamine deficiency often shows up first because our bodies use so much of it and it can't be stored very long. Thiamine deficiency symptoms can appear in as little as three days. Without thiamine, the other B vitamins may not be able to function properly. Thiamine is needed to clear lactic acid accumulation caused by the inhalers: Shoshin beriberi provoked by the inhalation of salbutamol https://pubmed.ncbi.nlm.nih.gov/12951730/ Significant Lactic Acidosis from Albuterol https://pmc.ncbi.nlm.nih.gov/articles/PMC5965110/ Albuterol-Induced Type B Lactic Acidosis: Not an Uncommon Finding https://pmc.ncbi.nlm.nih.gov/articles/PMC7263006/ Lessons of the month 1: Salbutamol induced lactic acidosis: clinically recognised but often forgotten https://pmc.ncbi.nlm.nih.gov/articles/PMC6964186/ An Overview of Type B Lactic Acidosis Due to Thiamine (B1) Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC10731935/ Thiamine has antifungal and antibacterial properties. Thiamine helps keep Candida in check. Thiamine helps keep SIBO in check. Thiamine helps with black mold, Aspergillis infection. Riboflavin helps fight Candida infection in the mouth. Riboflavin Targets the Cellular Metabolic and Ribosomal Pathways of Candida albicans In Vitro and Exhibits Efficacy against Oropharyngeal Candidiasis https://pubmed.ncbi.nlm.nih.gov/36625571/ Thiamine deficiency can make ones voice hoarse and can cause localized edema. Niacin deficiency can make ones voice hoarse. (Niacin deficiency and Thiamine deficiency can each cause irritability, agitation, and lability.) Hoarseness in pellagra https://pubmed.ncbi.nlm.nih.gov/21507655/ Hidden Hunger: A Pellagra Case Report https://pmc.ncbi.nlm.nih.gov/articles/PMC8152714/ Anesthesia can cause B12 deficiency. B12 deficiency can show up as mouth sores and geographic tongue, diarrhea, and dementia. Vitamin deficiency, a neglected risk factor for post-anesthesia complications: a systematic review https://pmc.ncbi.nlm.nih.gov/articles/PMC11823251/ Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency https://pubmed.ncbi.nlm.nih.gov/8250714/ Subacute combined degeneration of the spinal cord following nitrous oxide anesthesia: A systematic review of cases https://pubmed.ncbi.nlm.nih.gov/30144777/ The Effect of Vitamin B12 Infusion on Prevention of Nitrous Oxide-induced Homocysteine Increase: A Double-blind Randomized Controlled Trial https://pmc.ncbi.nlm.nih.gov/articles/PMC4052402/ Eating a diet that is heavy in carbohydrates can precipitate a thiamine deficiency. As the amount of carbohydrates consumed increases, additional thiamine is needed, otherwise the carbs will be stored as fat. Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/ Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ The deficiency symptoms of some of the B vitamins cause gastrointestinal symptoms that resemble the same symptoms as when being glutened. Thiamine deficiency can present as vomiting, diarrhea and abdominal pain (Gastrointestinal Beriberi). Niacin deficiency can present as diarrhea (Pellagra = diarrhea, dermatitis, dementia, then death ). B12 deficiency can present as diarrhea or dementia. Not everything is caused by hidden gluten. Gluten free processed foods are not required to be enriched with vitamins lost in processing like gluten containing foods are. Blood tests are not accurate measurements of vitamin levels, but do talk to your doctor and nutritionist about supplementing with the eight B vitamins, Vitamin C, the four fat soluble vitamins and minerals like magnesium. Your physician can give you a shot of B12 before anesthesia administration. By the way, Celiac Disease genes have been traced back to having originated in Neanderthals. I'm not a singing teacher on the net. I earned a degree in Microbiology after studying nutrition because I wanted to know what vitamins are doing inside the body. I've experienced nutritional deficiencies myself. Hope this helps! Keep us posted on your progress! -
Welcome to the forum, @jnstefan! She should start feeling better within a week or two if she is truly avoiding gluten and if she isn't also showing intolerance to other foods. It is quite common for celiacs to be dairy intolerant (not just the lactose but the protein casein in dairy) and to oats (protein is avenin). Casein and avenin have structures similar to gluten. We call this cross reactivity (not to be confused with cross contamination). So, you might look at pulling these two food items from her diet to see if there is improvement. But achieving a gluten free state is more challenging than people realize when the first start in. It is hidden in so many foods you would never expect to find it in like soy sauce and canned tomato soup, just to site two examples. This might help:
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My 10 year old daughter was diagnosed with Celiac 2 weeks ago. We've been on gluten free diet now for 2 weeks. She still experiences abdominal pain at times , and is struggling with fatigue. What is everyone's experience with how long it takes for the body to heal and stabilize after starting the gluten free diet? Thanks for any feedback!
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