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Showing content with the highest reputation since 12/17/2024 in Posts
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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...5 points
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7yo struggling!
wellthatsfun and 3 others reacted to Scott Adams for a topic
It's incredibly tough to watch a young child grapple with the frustration and sense of deprivation that comes with a restrictive diet, and your empathy for her is the first and most important step. At seven, children are deeply focused on fairness, and her feelings are completely valid. To support her mental health, shift the narrative from "missing out"...4 points -
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...4 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...4 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...4 points
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Supplements for those Diagnosed with Celiac Disease
Zuma888 and 2 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...3 points -
@HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying...3 points
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Taking Probiotics but Still Getting Sick After Gluten – Advice?
knitty kitty and 2 others reacted to trents for a topic
I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where...3 points -
Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but...3 points
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My only proof
Colleen H and 2 others reacted to Scott Adams for a topic
It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...3 points -
Not a scientific reply, but I thought I'd just chime in to reply the first part of your question: how long? Before I started to have gastric symptoms, I weighed about 66 kilos, and in the course of the following months, I seem to recall I lost about 6 kilos. From memory the last 2 or 3 kilos dropped off even when I was beginning to eat gluten free, from...3 points
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Welcome to the forum, @Crossaint! Are you living in the same home with your mother? Your experience with the cravings is very common in the celiac community, especially among the recently diagnosed. It might surprise you to hear this but gluten has addictive qualities much like opiates. It plugs into the same pleasure sensors as gluten in the brain...3 points
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Diagnosed gluten allergy but not Celiac
Barbra S and 2 others reacted to Waterdance for a topic
Thank you so much for this thorough and informative post. This information does help me to understand my body better. I will commit to a strict gluten free diet. I may not have a diagnosis but I know gluten is causing issues. The worst offender, white bread, causes a reaction within 20-30 minutes. Which I hate because I like sandwiches. Lol. Common sense...3 points -
Struggling to get into a good pattern
Beverage and 2 others reacted to Rejoicephd for a topic
Oh I have 2 dogs. And I just looked up the ingredients in their food and it does contain barley as a main ingredient. Maybe some other things too that aren't helpful but barley just caught my eye on a quick look. And yes I spend lots of time with them, they're always cuddled up on me. I even have wondered before if I was allergic to them and I take...3 points -
Diagnosed gluten allergy but not Celiac
knitty kitty and 2 others reacted to Pamela Kay for a topic
Waterdance, celiac disease is notoriously difficult to diagnose from symptoms alone. Symptoms of celiac disease are as varied as the people who have been diagnosed with it. AWOL has some good suggestions about the AIP diet, and I've included some food suggestions below, but I would like to give you a bit of information about how celiac disease develops that...3 points -
Struggling to get into a good pattern
knitty kitty and 2 others reacted to cristiana for a topic
The early days are often tricky for the newly diagnosed. There were times I thought I'd never feel better, but it just takes some people longer than others. Hang on in there, and keep posting with any questions as they occur or if you need any encouragement.3 points -
Struggling to get into a good pattern
knitty kitty and 2 others reacted to cristiana for a topic
Since I've been a member of this forum, I've seen some people write that they have not been able to tolerate corn, and others nightshades - tomatoes, potatoes, eggplant, and peppers (including bell peppers, chili peppers, and paprika). However, intolerances can be short term, just while you are healing. So bear this in mind if you start dropping...3 points -
I strongly agree with others about processed gluten free foods, like breads and pasta, being bad for us. Read the labels, full of this starch and that starch, seed oils that are inflammatory, etc. Before you were celiac, you probably wouldn't even touch something with those ingredients. I do much better with whole foods, meat, veggies, a little fruit. I made...3 points
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Personally, I would get a new GP. Advice to continue eating gluten, even after a Celiac disgnosis, is ridiculous. Clearly the GP knows nothing about the disease. That advice could be dangerous to your health. I too found out by accident. I was searching for help with ulnar neuropathy. The first doctor took xrays of my elbow and hand. Surprise, surprise...3 points
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Could you be having acid reflux? I used to get it soooo bad before I was diagnosed, now very rarely. I didnt have stomach upset, aka silent reflux, but pain in chest (thought I was having a heart attack) and food would get stuck from the esophagus irritation. The things here really helped, especially raising head of bed, sip of apple cider vinegar before...3 points
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Hi Mags, I was diagnosed almost 4 years ago at 57y.o, also of Irish heritage, my mom's from Co. Galway. Have your doctors run an immune globulin panel. My IgA was undetectable & that is what the usual bloodwork for celiac relies on. For example, my tTG IgA was below 2 & deamidated Gliadin IgA was 5, both in normal range. In other words, you do not...3 points
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confirmed via biopsy, quite depressed
knitty kitty and 2 others reacted to cristiana for a topic
We've definitely all had such thoughts. But as Scott says, it does get easier with time. I'm not sure where you are posting from but in England where I live, over the last ten years or so most things I missed at first now have gluten free substitutes. I still miss Twix bars, and chocolate Penguins (a type of biscuit) but I'm hoping sooner or later someone...3 points -
4 Years and very little progress
knitty kitty and 2 others reacted to cristiana for a topic
Hello there @maylynn I'm a slow healer from the UK. I sympathise. Despite three endoscopies which showed nothing wrong, I frequently suffered from a very sore stomach, bloating, feeling queasy. For some time I was taking the wrong iron supplement (Floradix instead of Floravital - the former has gluten in it, but the latter none). But...3 points -
Welcome to the forum, @Redlima! Not sure if this could relate to your issue but it is well-known by the celiac community that gluten has an opiate-like effect that causes some people to experience withdrawal symptoms upon going gluten free. This usually manifests itself within the first few weeks. So, I'm not sure that fits with your time frame. Also...3 points
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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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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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Hi Marie Welcome to the forum. I am so sorry your daughter is pointing the finger at you like this. I am afraid children of any age can be very cruel to their parents - I certainly look back at some of the things I said to my mother and father in the past, and wish I could unsay them. Sometimes people just need a safe place to vent, and unfortunately...3 points
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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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Shingles - Could It Be Related to Gluten/ Celiac
knitty kitty and one other reacted to Russ H for a topic
I hope you are on the mend soon. About 1 in 5 people who contracted chicken pox as a child go on to develop shingles in later life - it is not uncommon. There are 5 known members of the herpes virus family including chicken pox that commonly infect humans, and they all cause lifelong infections. The exact cause of viral reactivation as in the case of shingles...2 points -
Years ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came...2 points
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Taking Probiotics but Still Getting Sick After Gluten – Advice?
knitty kitty and one other reacted to Xravith for a topic
My genetic test results have arrived - I’m homozygous for DQB1*02, meaning I have HLA-DQ2. I’ve read that this is one of the genes most strongly associated with celiac disease, and my symptoms are very clear. I’m relieved that the results finally arrived, as I was getting quite worried since my symptoms have been getting worse. Next step, blood test. ...2 points -
Celiac getting dentures
Beverage and one other reacted to Martha Mitchell for a topic
Scott Adams. I was dealing with a DR that didn't care about me being celiac. I repeatedly told him that I was celiac and is everything gluten-free. He put an acrylic lens from j&j. I called the company to ask about gluten and was told yes that the acrylic they use has gluten....then they back tracked immediately and stopped talking to me. The Dr didn...2 points -
Coeliac and Thyroid?
Russ H and one other reacted to knitty kitty for a topic
This article explains how thyroid problems and Celiac are connected... Celiac Disease and Autoimmune Thyroid Disease: The Two Peas in a Pod https://pmc.ncbi.nlm.nih.gov/articles/PMC9312543/2 points -
Update: I have a wonderful new gastroenterologist. She wants to be sure there’s nothing more serious, like refractory celiac, going on. She ordered various tests including some micronutrient tests that no one has ever ordered before. I’m deficient in folate and zinc and starting supplements for both. I’m so glad I decided to go to a new GI!2 points
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Lymphocytic Colitis with Celiac
ShellsKeathley and one other reacted to Katerific for a topic
I was diagnosed with microscopic colitis and celiac a couple of years ago. The GI doctor prescribed a course of budesonide, which moderately helped until I tapered off. After a lot of ups and downs over the course of 2 years, I am finally in microscopic colitis remission. Since I am also diabetic, I was started on metformin and Jardiance. Metformin...2 points -
Am I celiac or not?
knitty kitty and one other reacted to somethinglikeolivia for a topic
Fascinating! This was very helpful, thanks for sharing2 points -
Gluten challenge and Hashimoto's Thyroiditis
Beverage and one other reacted to Scott Adams for a topic
I’m so sorry you’re going through this—it sounds like your body is sending a clear signal that gluten is a major trigger for your Hashimoto’s. The dramatic spike in your anti-TPO (from 50 to 799!) and the severe symptoms you’re experiencing suggest a strong immune reaction, even if celiac testing wasn’t done earlier. While a formal diagnosis would clarify cro...2 points -
Wends is correct in that for generations the food pyramid chart we were given with carbs at the base is incorrect. The average person gets far too many of their calories from carbs and coincidentally, more calories than they need for good health since carbohydrate rich foods are also calory rich foods. The body can learn to convert protein and fat into energy...2 points
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So sorry and sending well wishes. Replying from the UK. The NHS Coeliac Screen test is igAttg (including total igA). Your toddler is unlikely igA deficient with a titer of 22, as a positive test. When the igA anti-tissue transglutaminase antibodies are raised above the reference value or positive, the endomysial test is performed. The TTG t...2 points
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confirmed via biopsy, quite depressed
cristiana and one other reacted to wellthatsfun for a topic
i am australian. we do have plenty of substitutes, but most are very expensive compared to the originals. i believe i'll just stick to home cooked meals and not have many treats at all. it's sad but it's just so much easier. also, ive heard far too many horror stories of people ordering gluten free food from restaurants and cafés, explicitly telling servers ...2 points -
The way these tests are developed is they take a bunch of blood samples from people with active celiac disease, and a bunch of samples from people without celiac disease, and run them. Then they decide where to put the cutoff line for positive such that most samples are on the correct side of the line. So could it really be a low positive? Yes, although...2 points
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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...2 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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Increasing symptoms after going gluten free
Scott Adams and one other reacted to ognam for a topic
I had a lot of weird/random symptoms for a few months after going gluten free. But eventually they evened out and I felt SO MUCH BETTER. The person above wrote a very detailed message that looks helpful. I'd add don't forget to check for gluten in places like medicine. Advil liquigels, for example, have gluten. It's very frustrating trying to figure...2 points
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By knitty kitty · Posted
@xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables. Not only are these high in fiber, they also are good sources of magnesium. Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation. Thiamine Vitamin B1 and magnesium work together. Thiamine in the form Benfotiamine has been shown to improve intestinal health. Thiamine and magnesium are important to gastrointestinal health and function. -
Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
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By knitty kitty · Posted
@EndlessSummer, You said you had an allergy to trees. People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits. Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease. Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet. Vitamin C and the eight B vitamins are needed to help the body clear histamine. Have you been checked for nutritional deficiencies? -
I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia. going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored?
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Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
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