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Showing content with the highest reputation since 10/14/2024 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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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 -
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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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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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 -
7yo struggling!
Oldturdle and 2 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"...3 points -
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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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 -
Draft gluten-free ciders… can they be trusted ?
knitty kitty and one other reacted to Rejoicephd for a topic
That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth. She said the combination of the alcohol and sugar would be very likely to worsen my candida problem. She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry. So in summary, I...2 points -
Hi! Thank you so much! This was truly helpful. Most doctors I went to were absolutely uninformed and unprepared to treat a celiac patient. I will check for all the things you shared and focus on healing first! Really really thank you! Have a blessed day.2 points
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is my celiac disease gone?
Wheatwacked and one other reacted to Rogol72 for a topic
I can confirm this. I no longer have any issues with Iodine since being strictly gluten and dairy free.2 points -
Struggling to get into a good pattern
knitty kitty and one other reacted to Beverage for a topic
Are you exposed to any airborne sources of gluten? We have an older house and constantly fixing something. Cutting into old wall board or plaster can release gluten into the air. Also, the sickest i ever got was from taking care of my neighbor's chickens, they get excited and kick up everything, air filled with dust. Sure enough, their food contained...2 points -
Diagnosed gluten allergy but not Celiac
knitty kitty and one other reacted to Awol cast iron stomach for a topic
"...hemorrhoids, constipation and diarrhea" . Heard of indeed. Experienced too. In hindsight, I can remember from age 2 having, and trying to convey my issues. I went 38 years misdiagnosed. So yes one can have these issues. I did have to go back on gluten for a gluten challenge. I failed that challenge and 6 days in they give me permission to stop, and I...2 points -
Should not be a problem except for the most sensitive celiacs. The amount of gluten that would get in the air from cooking alone has got to be miniscule. I would be more concerned about cross contamination happening in other ways in a living environment where others are preparing and consuming gluten-containing foods. Thinks like shared cooking surfaces and...2 points
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@Scott Adams Xiromed is one of the generic manufacturers of Progesterone pills.2 points
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Chest pain from celiac
ShariW and one other reacted to Scott Adams for a topic
It sounds like you've done an amazing job managing your health since going gluten-free in 2007, and it must be incredibly frustrating to experience these unexplained chest pains now. Since you were never formally tested for celiac disease, we can't rule out whether you have celiac or non-celiac gluten sensitivity (NCGS), but your clear symptom improvement...2 points -
Is it common to develop a wheat allergy in addition to Celiac Disease?
captaincrab55 and one other reacted to trents for a topic
Welcome to the forum, @Stephanie Wakeman! I don't know how common it is but it is certainly possible. In fact, as you may already be aware that, if you live in the USA, the FDA lists it as one of the eight most common allergens and if it is present in a commercial food product it must be declared in the allergen section of the product's nutritional analysis...2 points -
Inflammation and Menier’s disease link?
Beverage and one other reacted to knitty kitty for a topic
@MagsM and @leenora, Thiamine improves Alzheimer's. Thiamine has anticancer effects in high doses. Thiamine helps improve Hashimoto's. I'm linking information you may find helpful. Evaluation of neuroprotective role of benfotiamine in Alzheimer's disease model: A randomized control study https://pubmed.ncbi.nlm.nih.gov/40176579/ Supplemental...2 points -
Still unsure.....
badastronaut and one other reacted to Wheatwacked for a topic
Zinc glyconate lozenges (Cold Eeze) helps fight off viral respiratory infections by coating the mucous membrane cells to protect them from virus. Zinc is an antiviral essential mineral. Choline deficieicy can be the cause of Non Alcoholic Fatty Liver Disease. It is estimated by some experts that less than 10% eat the minimum RDA of around 450 mg. ...2 points -
Help needed
knitty kitty and one other reacted to nanny marley for a topic
Thankyou I will definitely have a look your very insightful and a lot is making sence 👍2 points -
I wonder if refractory celiac is just people reacting to other lectins they’ve not yet identified. If I was rich I’d spend all the money on igg tests and give them out freely to people when they sign up to this site, I’d never heard anything about other lectins until kitty pointed them out, probably lots of people in the same boat as me. My theor...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 -
Hidden Gluten in distilled vinegar
Scott Adams and one other reacted to Manaan2 for a topic
@knitty kitty I can't thank you enough! My husband and I already started looking into those supplements. We definitely plan to give it a try. We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it. We've made many attempts to gradually decrease but...2 points -
Muscle Twitching
Wheatwacked and one other reacted to Yaya for a topic
For me, with osteoporosis, Celiac and more than 1 heart condition, the slower, safer route is preferable. I'm on 5 meds per day. Too much of anything can disturb absorption of this or that. Have a Happy Thanksgiving. I'm gone for a few days.2 points -
What everyone favorite Gluten Free Bread?
John.B and one other reacted to Carolyn guancione for a topic
I found that the brand schar to be very good there sour dough is very good and so are the bagels but the best bagel so far is Trader Joe’s in the purple bag2 points
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Hi Theresa, A few of my friends have your same story. You may be right about barley, etc. 18 years ago at a football game while clapping, suddenly my 4th finger was in agony. It looked like a vein had burst. It was blue for a couple hours, then disappeared. Finally realized it happened every time when drinking beer. It's occurred several times over the years when opening a jar, lifting something that was a bit heavy, holding on to tight to something. Immediate icing stops the pain and discoloration. Now avoiding wheat in the US, it rarely happens. Thanks for the reminder. Will have Entero Labs run another test. Unfortunately they've relocated to Switzerland/Greece.
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The EMA test is an old and less sensitive test for anti-tTG2 antibodies. It relies on a technician using a microscope to check for fluorescence of a labelled substrate (typically monkey oesophagus or human umbilicus), giving a simple positive/negative result. It is similar to running a standard anti-tTG2 test but with a high cut-off, making it more specific but less sensitive. Transient rises in tTG2 can be caused by e.g. viral infections and inflammation. Very high levels of anti-tTG2 (>x10 standard range) are almost certainly coeliac disease but moderately raised levels can have several causes apart from coeliac disease. Other food allergies can cause villi blunting but that is much rarer than coeliac disease or other non-coeliac causes. Not All That Flattens Villi Is Celiac Disease: A Review of Enteropathies
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By Theresa2407 · Posted
Maybe you have a low intolerance to Wheat. Rye, Barley and Malt are the gluten in Celiac disease. It has always been stated Wheat and Gluten, not just a Wheat intolerance. Barley will keep me in bed for (2) weeks. Gut, Migrains, Brain fog, Diahrea. It is miserable. And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow. Boy was he off. But at that time the US didn't know anyone about Celiac. This was the 1940s and 50s. I had my first episode at 9 months and did not get a diagnosis until I was 50. My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product. It was mostly the cereal industry. 3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction. -
Thanks much Scott. Well said, and heeded. I don't have Celiac, which is fortunate.
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By Scott Adams · Posted
Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that? Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:
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