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- trents replied to Itsabit's topic in Dermatitis Herpetiformis1SkinSafe
Welcome to the forum, Linda! Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas. I will deflect with regard to your question about meds... -
- Itsabit posted a topic in Dermatitis Herpetiformis1SkinSafe
Hi. I’m 70 years old, and a 22 year survivor of head and neck cancer treated with chemo-radiation, which resulted in non-existent submandibular salivary glands and extreme dry mouth and altered oral mucosa. I have been using dry mouth toothpaste, Rx oral dentrifices and moisturizers for years. I’ve recently been diagnosed with severe celiac dermatitis her... -
- trents replied to Cathijean90's topic in Introduce Yourself / Share Stuff1
I’m terrified it’s too late for me😭
Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis... -
- Cathijean90 posted a topic in Introduce Yourself / Share Stuff1I’m terrified it’s too late for me😭
I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomitin... -
- Quiet Spirit commented on Scott Adams's article in Spring 2025 Issue4The Ultimate Guide to Dining Out Gluten-Free: Tips and Restaurant Picks (+Video)
Where we live, a pizza place, Marcos, has cauliflower crust pizzas. They only have 10 inch crusts. For my husband and me, that is large enough.- dining
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Welcome to the forum, Linda! Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas. I will deflect with regard to your question about meds and oral products but take you in another direction. Have you tried a low iodine diet. Iodine is known to exacerbate dermatitis herpetiformis and some find that a low iodine diet helps reduce the number of outbreaks. By the way, have you had your celiac antibodies retested recently? If they are elevated that might be a clue that you are getting gluten in your oral hygiene products or meds. -
Hi. I’m 70 years old, and a 22 year survivor of head and neck cancer treated with chemo-radiation, which resulted in non-existent submandibular salivary glands and extreme dry mouth and altered oral mucosa. I have been using dry mouth toothpaste, Rx oral dentrifices and moisturizers for years. I’ve recently been diagnosed with severe celiac dermatitis herpetiformis. I was being treated with oral Dapsone, but it was not effective and I developed some serious side effects. So, the medication was stopped and I was started on Doxycycline (another antibiotic) for inflammation. I’ve been using Rx Betamethasone steroid ointment with little to no effect. I have tried every oral and topical antihistamine treatment available OTC. None have touched this horrible relentless itching. That is my history. Now to my question. Does anybody know about gluten free toothpastes and mouth moisturizers? I ask because a very common dry mouth brand stated to me that they were indeed gluten free. But as I am not getting any better with my dermatitis herpetiformis, I was wondering if I was getting glutenized some way other than diet as I have been following a strict clean gluten free diet, but I am not seeing any improvement at all. So, I started looking up the toothpastes and moisturizer ingredients individually and nine (9) of the eleven (11) or so listed showed up as containing gluten or that may have gluten! Am I getting glutenized orally by these products? As an aside, I checked on my favorite lavender scented baby lotion which is supposed to be gluten free, but many of those ingredients when investigated separately, show they do contain or may contain gluten as well. I stopped using the lotion. But I cannot forgo my dental care. I was unable to get any information from the manufacturer of my current brand of chewable multivitamins either. They told me to check with my doctor. If THEY don’t know what’s in their product, how do they think a PCP will? In light of all this, I am confused and angry that I might keep getting contaminated with gluten through products I am using that are supposedly gluten safe. *I should also state that I have a nickel allergy since I was about 12-13 years old. And I developed a contact allergy to latex (gloves) when I was a student nurse at 19 years old. I know and I’m sorry that this is so lengthy. I’m trying to do everything I can to combat this condition, and I’m feeling very confused, anxious and angry about not getting adequate information as I try to educate and advocate for myself. I’m hoping someone here is more knowledgeable than me of how to navigate through all of this. Can anyone offer any advice? Thank you for your time. Respectfully, Linda
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Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is. The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
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By Cathijean90 · Posted
I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomiting, I have horrible rashes on my hands, I’ve lost a lot of weight, I’m always in pain, I haven’t had a period in about 8-9 months. I’m so scared. I have children and I saw it can cause cancer, infertility, heart and liver problems😭 I’ve been in my room crying for the last 20minutes praying. This going untreated for so long has me feeling like I’m ruined and it’s going to take me away from my babies. I found this site googling and I don’t know really what has me posting this besides wanting to hear from others that went a long time with symptoms but still didn’t know to quit gluten. I’m quitting today, I won’t touch gluten ever again and I’m making an appointment somewhere to get checked for everything that could be damaged. Is this an automatic sentence for cancer and heart/liver damage after all these symptoms and years? Is there still a good chance that quitting gluten and being proactive from here on out that I’ll be okay? That I could still heal myself and possibly have more children? Has anyone had it left untreated for this amount of time and not had cancer, heart, fertility issues or liver problems that couldn’t be fixed? I’m sure I sound insane but my anxiety is through the roof. I don’t wanna die 😭 I don’t want something taking me from my babies. I’d gladly take anyone’s advice or hear your story of how long you had it before being diagnosed and if you’re still okay? -
Genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out and also to establish the potential to develop celiac disease. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop it. To develop celiac disease when you have the genetic potential also requires some kind of trigger to turn the latent genes "on", as it were. The trigger can be a lot of things and is the big mystery component of the celiac disease puzzle at this point in time with regard to the state of our knowledge. Your IGA serum score would seem to indicate you are not IGA deficient and your tTG-IGA score looks to be in the normal range but in the future please include the reference ranges for negative vs. positive because different labs used different reference ranges. There is no industry standard.
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I do not have personal experience but my mom was a vegie for a while. When she started eating meat again it did not always sit well with her. It took several months for this "feeling" to go away. Keep in mind she was not dx as celiac yet so that might have had something to do with it as well. Hope you find better health with or without it!
Hez
We were veg or vegan for 8 years.
We've added meat back in due to all our intolerances. Amazingly we didn't have any problems picking back up on meat products. We buy our beef and chicken from www.uswellnessmeats.com
Wonderful meat.....100% grass fed.
Start out slow just in case though.
BTW, we all feel much better eating meat than not eating it. I really think it depends on each person. Some do better with, some do better without.....you have to listen to your body.
thanks for everyone reponses. i'm also blood type O which is supposed to eat meat. i hate meat, it grosses me out but im gonna try and see- maybe i wnot feel exhausted all the time.
thanks
I feel for you. I haven't eaten meat ever in my life, but now that I can't eat SO many things and I am so sick of the stuff I do eat after two years, I have seriously considered it. I just wouldn't have a clue how to cook it. Plus, I am scared my body wouldn't know what to do with it. Beans don't seem to agree with me very well and that is what I have been eating alot of the past two years. Goodluck trying it and let us know how it goes.
Monica
What kinds of bean and/or bean products have you tried?
My middle daughter didn't eat meat for probably 10 years. She wasn't a strict vegetarian, but simply didn't eat meat. Not too long after she was diagnosed, she began to eat it again, fearing she couldn't get the protein she needed. It didn't take her long to begin saying, "Man... I missed this stuff!!"
I was a pretty lax vegetarian for a couple of years.... my girlfriend was so I only ate meat viviting parents etc.
I had a friend that was vegetarian strictly for 7....
I think if you think its disgusting its going to sit badly... regardless...
As an example I always haten fish, especially fishy-fish (if that makes any sense) but after diagnosis I ended up eating sushi...
First few times I really gagged... it was a struggle to just keep it down and after it felt like lead...
I'd say the main thing is quality meat/fish in small amounts... better a little organic beef than a burger or steak of supermarket meat?
Overall I'd say why not just gradually introduce it as a subsistute in your normal veggie diet...
A little in a stir-fry instead of a steak .... some chicken in a fajita with LOTS of vegetables. etc. ??
We require amazingly little meat to get our daily dose... of proteins... so I don't think either the standard meat 3 times a day or strict vegan is healthy .. rather sometihng inbetween in moderation...
Personally now I tend to eat meat once a day... sometimes a huge steak but sometimes just a bit of chicken in a risotto or something... So instead of making meat meals make meals with some meat???
For me, I buy organic free-range chicken and my conscious feels better about it. First, if you can afford it, organic tastes really great. Second, at least I know they had a quality life before they went to market. I only buy one or two chickens a month. This gives us three meals of chicken. Then I make stock/soup with the leftover carcasses. I also eat fish and shellfish.
I tried beef after not eating it for many years and I didn't like the taste anymore. Even though I like pork, I just can't bring myself to eat it anymore.
Start slowly! Your body needs to gear up to produce the proper enzymes to digest the meat. Might take a couple of weeks to adapt.
I was once vegetarian, had horrible problems with blood sugar. Would probably be diabetic by now if I'd kept it up. I'm finding the Paleo diet is doing me a lot of good.
I ate red meat when my boyfriend said, "Baby, there's nothing on this menu you can have!"I ate steak strips on a salad. (It was late at night and I hadn't eaten all day, so a salad wasn't going to cut it.)My stomach hurt.
And since then, I've eaten it once or twice a week with NO problems.
I only eat good quality steak and good quality ground beef, and pork ribs.
It was weird cooking it, to be honest.
btw-- b4 dx, when iron was too low to give blood- I was perplexed since I ate so many dark green veggies, and do you know what the blood bank people tell you to eat to raise iron? CREAM of WHEAT!! It has TONS more iron per gram than any meat or veggie!! I ate it, was so sick(didn't know about celiac yet), but my iron skyrocketed in just a few weeks!
so i had a few pieces of chicken last night- just two bites really was all i could handle mentally. i didnt get any weird stomach aches so thats good. i guess ill slowly just increase it to three bites and then four bites- it tastes so weird!!
Glad at least it didn't make you feel sick
I went about 10 years only eating chicken or turkey occasionally. No red meats at all--I was prettty strict with it. When I tried steak for the first time after that, it tasted odd--very strong and the texture took some getting used to again.
I'm glad I went back to eating meat because since I've been gluten-free, I can't tolerate plant proteins at all.
I think your plan is a good one--go slowly and carefully to see how different things sit.
I just started eating meat again after five years of being veggie. I find that meat sits well in my stomach. I never feel sick after eating it. Veggies and grains do not always sit well, I think because they're harder for the body to digest. It's frustrating because I want to not eat meat, but I know it won't make me sick and on days when my stomach is already upset, I don't want to eat a bunch of veggies and make it worse. I do buy free range/hormone free.
Oh, the one meat that doesn't sit well is beef. That always seems to upset the stomach so I don't eat it. Chicken, turkey, fish, etc seem to be ok.
Groan...I'm dealing with this right now. I've been a vegetarian for 30 years, but with my current problems, I am running out of foods to eat. Several of my friends have been suggesting that I should start eating meat again, but I just can't imagine it. I'm not a radical vegetarian by any stretch (one of my friends is a deer hunter), but when I visualize eating meat again, I just picture myself throwing up all over the place. My vegetarianism is real tied into my identity, plus I have a real aversion to meat. I am going to try eggs this weekend, though. Maybe that will be enough.
I credit eating meat again for helping me figure out my Celiac!
I had been vegan/vegetarian/pescatarian (in that order) for 12 years, and been having celiac symptoms for about as long. Last September, while in England, I fell off the wagon when a favorite aunt made a favorite child hood meat dish. Loved it.
Starting eating meat again, a few weeks or a month after returning, went on the South Beach diet to lose weight, something I'd never consider before because I thought it would be too hard as a vegetarian. Lot's of things started feeling better. One thing leads to another, and I figure out the Celiac and get diagnosed.
My wife likes to joke about the 3 weeks she's known me where I could order anything on the menu.
What's so funny is how I remember eating vegetarian things that were meant to taste like meat. You'd think it'd be just a quick hop back to real meat...