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Newbie Info 101
Klugett and 38 others reacted to IrishHeart for a topic
You have been diagnosed and you do not know what to do next. First, do not panic! and Welcome to the Forum! I have posted this information in pieces and parts on this site during the past year so many times and some newbies suggested it would have been helpful if they had seen it ALL --right away after they were DXed.... so, I thought, why not paste...39 points -
Scott Adams' Story of His Diagnosis of Celiac Disease
J1707 and 29 others reacted to Scott Adams for an article
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Forbidden Gluten Food List (Unsafe Ingredients)
Jelly bean and 13 others reacted to Scott Adams for an article
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This particular forum on celiac.com is described on the main page thus: It is not intended to be about products that are labeled gluten-free. If it were that simple, we would not need this discussion forum. Here, in the Gluten-Free Foods, Products, Shopping & Medications section, we talk about products that are not labeled gluten-free, but...11 points
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Supplements for those Diagnosed with Celiac Disease
Zuma888 and 9 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...10 points -
What Are the Symptoms of Celiac Disease?
Zuma888 and 9 others reacted to Scott Adams for an article
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There's hope for you yet!
Aussienae and 7 others reacted to paisleydaisy for a topic
Hi! Just a positive note from someone 4 years into the gluten-free diet who had questions about worsening food intolerances, no change in lifelong insomnia and ongoing panic attacks (which came out of the blue a few years prior and lead to full blown agoraphobia quite suddenly 'for no reason'). It ALL went away. It took a while but all went away and feels...8 points -
Newbie Info 101 - Start Here
Debbiere and 6 others reacted to Scott Adams for a topic
For those just starting out, please see this article: And this post, which is rather old, but mostly still useful:7 points -
Gluten-Free Alcoholic Beverages
SwagQ and 6 others reacted to Scott Adams for an article
7 points -
A Journey Through the Nexvax2 "Celiac Disease Vaccine" Clinical Trial
Sandykr and 6 others reacted to Kelly Carter for an article
7 points -
Ten Things to Try if You Accidentally Eat Gluten
Grlybrainiac and 5 others reacted to Jefferson Adams for an article
6 points -
Nutrient Deficiencies and Celiac Disease: Understanding the Connection
Chaparra and 5 others reacted to Scott Adams for an article
6 points -
The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free
Aretaeus Cappadocia and 5 others reacted to Scott Adams for an article
6 points -
Intestional Permability could a Vitamin Deficiency Cause It
ch88 and 5 others reacted to ravenwoodglass for a topic
I developed DH as a young child after being impaled. It was one of my first celiac symptoms. At that time I was eating lots of cereals and breads that were fortified. There is no way I was niacin deficient. Unfortunately we have two posters who seem to think that niacin is a cure-all for celiac. I do hope newbies are not mislead into thinking a few vitamins...6 points -
Overwhelmed and unable to accept
Martin-0123 and 5 others reacted to Ennis-TX for a topic
.....OK NOW, I blunt ass%$@# coming out here. I feel like I need to go punch your lights out drag you to my house and force you on the gluten-free diet for you to heal. I would also show you a social life can exist. We would make meal prep boxes, shakes bars, our own breads live a normal like bloody diet with gluten-free versions of foods. Show you that YOU...6 points -
I personally feel that we should be happy that they voluntarily let us know about the shared equipment (or facilities) ; since the equipment is thoroughly cleaned between runs, they are not obliged to. I worry more about the companies that change the ingredients without letting anyone know, just to keep you on your toes A market I buy from makes...6 points
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Domino's "Gluten Free" Crust
Oscar and 5 others reacted to IrishHeart for a topic
I'm with you, Karen. Can't seem to get people to understand the following: Gluten FREE eating means Gluten FREE. FREE of GLUTEN. ENTIRELY. It doesn't mean "maybe, kinda, sorta" It doesn't mean dabbling in it or "gluten lite" it doesn't mean 4 out of 7 days and on holidays we take breaks. It doesn't mean use non-gluten grains, but...6 points -
We Need To Start A Thread On Stupid Stuff Doctors Say!
Dima Salahi and 5 others reacted to ElseB for a topic
Gastroenterologist walks into the room, looks at my chart and says: "You have Celiac Disease. Go look it up on the internet. Come back in 6 months". Then walks out. That was the appointment where I was given the diagnosis. Another doctor: "since the Celiac came on so quickly, I'm sure it will disappear just as quickly."6 points -
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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More info about Vitamin Deficiencies
placey0918 and 4 others reacted to knitty kitty for a blog entry
I went through very similar symptoms, being misdiagnosed and told it was all in my head for most of my life. It's not all in our head. It's what's NOT in doctors' heads. Doctors don't think of vitamin deficiencies as causes of symptoms like we have. Doctors are trained to prescribe pharmaceuticals in medical institutions funded by pharmaceutical companies...5 points -
Psychiatric and Neurological Manifestations of Celiac Disease in Adults
Dtoc and 4 others reacted to Jefferson Adams for an article
5 points -
I am a school nurse (Pre-k-8th grade) and a parent of a child diagnosed with celiac disease in 4th grade (6 years ago). I have gone through this battle many times. When my daughter was a student here, there were strangely 7 kids with celiac disease out of 500. (4 in her grade of 50 kids...which is odd...but seemed to help my case). In 2009 revision...5 points
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Terrible Neurological Symptoms
Beverage and 4 others reacted to HectorConvector for a topic
I'm just reviving this thread to update with *factual* information. Not assumptions, or anything vague but known facts. 1). results of an MRI scan show a herniated disc in the lower spine area. However, the letter from the doctor says they don't believe this explains the symptoms. However, the symptoms were very severe and violent when I did weight training...5 points -
Celiac Disease Treatment and Continuing Symptoms
Zuma888 and 4 others reacted to Mary Anderies for an article
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Worried
Scott Adams and 4 others reacted to Wheatwacked for a topic
Natural tendency to fear worst case. So many on this forum were misdiagnosed only to learn it was Celiac Disease all along. To really get a scare look up "200 symptoms of Celiac Disease". It can mimic anything because of autoimmune response and vitamin deficiencies. Once you start GFD and or correcting malnutrition you start healing so you will need...5 points -
Safe Gluten-Free Food List (Safe Ingredients)
SwagQ and 4 others reacted to Scott Adams for an article
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How do I deal with people who are ignorant of Celiac's disease?
TurtleSeaba and 4 others reacted to GF-Cate for a topic
Hi Turtleseaba, I don't know if it would help (and maybe you have already tried this), but perhaps a phone call (or email) to the pantry manager/ director/lead volunteer on a day that is not a distribution day to talk, explain your situation and explain about celiac and ask if it's possible to receive safe food and/or have gluten-free food service aside...5 points -
Hello, I have found everyone's responses very helpful and it's reassuring to know I am not alone in this journey. I am now in week 2 of cutting out dairy in addition to the gluten. Also, starting this week I am eating only what I make for myself. I have a glimmer of hope as I do feel as though my symptoms are improving. Thank you to all of you for the...5 points
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Writer looking for people with celiac and other autoimmune conditions
Angeline Fergusson and 4 others reacted to trents for a topic
I have a suggestion for you. Sit down and develop a list of more detailed, targeted questions you would like to have data on that would provide a framework for people's responses. I feel like your current questions are too vague and too general to be very helpful to people trying to provide input for your writing project or to you trying to distill and...5 points -
I was and am almost completely ostracized by my family and friends.....I find this forum to be more of my family now days. I actually feel more welcome here. >.< does not help I was adopted as a baby but when the rest of the family learned I had a genetic disease like this on top of autism...I was dropped and ignored pretty much and everyone stays away...5 points
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Dear egs1707, You will not like what I have to say. But, like Squirmingitch (whose entire post I agree with), I am only trying to help you. 1. You have already been given all the best advice possible by the nicest people. 2. You seem unable to accept this advice; so I won't focus on being nice. 3. I believe you are clinically depressed...5 points
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Wine Barrels Sealed With Flour Paste
ravenwoodglass and 4 others reacted to Jestgar for a topic
Bottom line, if it bothers you - don't drink it. If you are super sensitive, or early in the gluten-free process, you might want to avoid drinking in general, or at least some of the wines others have had issue with. You can test specifics for yourself, when you're up for it.5 points -
Wine Barrels Sealed With Flour Paste
dilettantesteph and 4 others reacted to JNBunnie1 for a topic
I will repeat myself. We need to be able to come here and report something made us sick, safely, without being blown off. I have lost count of the number of people who have reported a gluten reaction to wine, and they deserve better than to have the 'experts' on this board tell them they are imagining it. Everyone reading can see both sides of the issue...5 points -
Domino's "Gluten Free" Crust
Fire Fairy and 4 others reacted to kareng for a topic
"Domino's and the NFCA found that while the crust is certified as gluten free, current store operations at Domino's cannot guarantee that each handcrafted pizza will be completely free from gluten," the company's news release said." I hate these pseudo gluten-free menus. It confuses the non- gluten-free people who think we can eat at these places...5 points -
Non-Specific White Matter On Mri? Anyone Else Have This?
squirmingitch and 4 others reacted to Takala for a topic
I had a positive for the brain lesions, aka "bright spots," which were not the same type as seen in MS. Had quite the falling out with the nasty, idiotic neurologist who found this and still insisted it had nothing to do with my diet, as she had spent the past year testing me for "other things" instead of what I told her I already had and had been tested...5 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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I was diagnosed with Celiac 4 years ago and went completely gluten free but still had issues with nausea, diarrhea and occasional sharp abdominal pain. Just by chance my sister told me she had tested positive for fructose malabsorption because she was having similar issues. I decided to test and was also positive. I had never heard of it, but once adjusting...4 points
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I’m so sorry to read this. I know when I was diagnosed it was a struggle at first but my husband threw all our food away with gluten and now he is gluten free too. You really need support. Maybe you can get them a book to read about the disease? There are lots of gluten food recipes too. I pray you get the support you need.4 points
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Celiac Disease Raises Risk for Pregnancy and Delivery Complications in Women
KathleenMK and 3 others reacted to knitty kitty for an article
The "why?" can also be related to the nutritional deficiencies that most Celiacs develop, not only before diagnosis, but afterwards when these deficiencies are not corrected or worsen on the gluten free diet.4 points -
Looking for helpful advice/ help...
cnazrael89 and 3 others reacted to knitty kitty for a topic
Welcome to the forum, @Beck123! Longtime DH sufferer here. I had to remove everything dairy from my diet. Not only am I lactose intolerant (I can't digest the sugar in milk, lactose), I am sensitive to the protein in milk, casein. Not only does milk cause continuing inflammation and damage like gluten, dairy is high in iodine. I also found...4 points -
In what ways did you feel better after going gluten-free?
ajesmond3 and 3 others reacted to Lucille Cholerton for a topic
After going gluten free, my headaches disappeared immediately, my sinusitis and drippy nose cleared up within 2 weeks, my constipation cleared up within a month, my severe rheumatoid arthritis cleared up totally in 5 months. I have now been gluten free for over 30 years!4 points -
The What's For Dinner Tonight Chat
Cookingpapa and 3 others reacted to jess-gf for a topic
I thought it might be fun if we had a thread where we shared what we're cooking up for dinner:) I am not an experienced cook so coming up with gluten free menus for me and my boyfriend feels like a challenge. It's also weird since I only started eating meat since my diagnosis, so I have 0 experience preparing meat. Tonight I'm going to try that Tinkyada...4 points -
I’m 7 years out since diagnosis but I can tell you with certainty that I felt worse the first 9 months after diagnosis and going strict gluten free. Your body is detoxing in so many ways. Stay super strict and stick it out....you will be amazed at how well you will feel when you really begin to heal from the years of damage. Nourish your body with clean, ...4 points
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Anyone try einkorn?
Awol cast iron stomach and 3 others reacted to kareng for a topic
Einkorn is a type of wheat. It contains a lot of gluten. It is not for people with a medical need to be gluten free - such as Celiacs.4 points -
Anxiety and depression
apprehensiveengineer and 3 others reacted to cyclinglady for a topic
Joe, Your doctor can check you for vitamin deficiencies (lab test), but more importantly, you need to have a serious conversation with your doctor about your anxiety. It seems pretty high from what you described. You just might need medication for a while and you might see some benefits from taking it. Talk to your doctor. In the meantime,...4 points -
Need help desperately now!
Fairy50-dust and 3 others reacted to pschwab for a topic
Bring your own food is my advice. I don’t think the host will be offended if you explain you have an autoimmune disease and must avoid certain foods. Profusely thank her for the invitation, gush about her house, gloss over the food stuff like it’s no big deal and move on doing what you need to to remain healthy. If we don’t focus on the food I think it he...4 points -
High Incidence of celiac disease in Long Term Study
plumbago and 3 others reacted to ravenwoodglass for a topic
Interesting. Not surprising to me that they found a higher percentage than they thouught. I think that percentage would be even higher if they tested older folks in their research.4 points -
I have to say I agree with this. I think this poster might have a lot of other problems and Celiac is just the one he or she is focusing on.4 points
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Keep pursuing this. It's not normal and you need to get to the bottom of it ASAP. We kept goofing around with antibiotics (at my own insistence.) until it was too late. I'm not trying to scare you. It might very well be a bad infection, but mine turned out to be cancer.4 points
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Glutened By Vapors
dilettantesteph and 3 others reacted to msmini14 for a topic
Gemini and Irishheart. I did not respond to this post to stir up everyone4 points
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By Rejoicephd · Posted
Thank you @cristiana. Its really helpful to hear your experience, thanks for sharing. 8 years is a long time! And its also good to know that others have experienced worsening before it gets better. I've just started doing the food diary recently, and I'll keep that going. It's at least helping me try to get a handle on this, and also helps increase my overall awareness of what I'm putting in my body. I will also message my GI doc in the meantime too. Thanks, it's really helpful to talk through this. -
Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance reactions are just too strong and present too much health risk.
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I've been gluten free for 5 years, as well as being intolerant to gluten, my list of intolerances is growing.. from dairy, eggs, soya, yeast, to mushroom, garlic, onion, spinach and quite a few in-between, basically my diet is gluten-free cornflakes, rice, banana, almond milk and fish anything else causes bloating, severe abdominal pain, mucousy diarrhoea, lethargy, muscle and joint pain, kidney pain, headaches, and mouth ulcers. I've been told it's IBS, I think it's more than that... I've been sent to a gastroenterologist who tested for coeliac, if course it came back negative because, as I told him, I haven't eaten gluten for 5 years, he's asked me to eat gluten for 4 weeks and redo the blood test, so I've tried small amounts of crispbread for 3 days and am in agony, I can't do this for 4 weeks and then however long it'll take to recover. Has anyone got any suggestions, and is multiple food intolerances a common side effect of coeliac? I'm struggling! And struggling to be taken seriously 😒
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I think going back to your GI isn't a bad idea - my visits to the GI did not stop following my diagnosis as I had annoying issues on and off for some time. Thankfully he is a fantastic GI, with a great sense of humour, so it wasn't a chore to see him again although I'd rather not have had to, obviously! But I needed my mind to be put at rest as my symptoms didn't seem to go away overnight as I'd hoped they would. Initially I recall he recommended I went Dairy Free for three weeks, and he told me it would take that time to see an effect. At that time, even lactose free milk went straight through me, so it is important, I would say, to even avoid that during a Dairy Free trial. My ongoing symptoms were bloating which did respond a bit to that trial. However, within about 18 months there was a return to a very sore stomach, plus various aches and pains. It turned out some gluten was sneaking in with my iron supplement (I was buying Floradix instead of Floravital), but I also think the dishwasher, the oven and eating out were contributors, too. Before my numbers normalised (from memory, about eight years!) I had several follow up appointments and a few more tests, but things gradually did get better. Having read many accounts on this forum over the years, I don't think it is uncommon for symptoms to get a bit worse before getting better, that was certainly the case with me. Your gut is damaged so you may well have issues digesting other food in the short term. But do try to be as scrupulously gluten free as you can possibly be as a first step, and I'd definitely try a three week Dairy Free trial. Your villi because they are damaged are not able to create the lactase required to digest dairy at this time so you may well see some improvement if you come off dairy for a while. Perhaps keeping a food diary of what you eat, where you eat it, whilst a bit onerous to do, will help identify foods that are causing issues. For a while, apart from oats, I found peas, lentils and soya products hugely aggravating. Things should calm down.
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By Rejoicephd · Posted
Thankfully those are normal. B12 was on the low end of the normal range when I first got diagnosed. When I last got it checked, it had come up a lot (455 last time checked).
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