This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I have been gluten-free for almost three years now, following the discovery of severe, non-Celiac gluten intolerance. (For all I know, it could legitimately be Celiac's, I just haven't tested positive yet.) I, too, react very, very violently now to ingesting even small amounts of gluten, but this wasn't always the case.
My reaction to ingesting gluten used to be passing out, ataxia, mouth sores within 20 minutes of ingestion, 9-11 bowel movements a day, total lethargy and brain fog, etc. Now, within just 1 hour of ingesting gluten, I vomit continuously and uncontrollably for hours and hours. What makes this more difficult for me is that I used to be able to take an over the counter anti-nauseal, but I seem to have developed a severe corn intolerance that leads to a lot of equally bad symptoms. Because of the corn issues, I also have to steer clear of anything in pill form, so I'm turning to homeopathic remedies like teas, etc, in lieu of being able to take conventional meds.
I usually ride it out with popsicles and ice chips. Club soda with homemade ginger syrup or lemon slices helps, too. Then, when my stomach calms down and starts to 'reset' itself, I make a sipping broth with carrot, fennel, ginger, and vegan bouillon that's gluten-free. (I ordinarily eat a lot of ginger and fennel because they are both great for stomach upset.)
I am extremely strict with my diet: I've never ever had an 'open meal' or small bite of anything containing gluten, no eating anything processed on shared equipment, but occasionally, I have made bad decisions by being too trusting of servers (not asking enough questions or being insistent) or by ordering menu items that I was told were gluten-free, but were actually not (like a piece of fish dipped in searing flour) or ordering a mixed drink that was made with a well liquor instead of the gluten-free, top shelf item I had asked for. I never order anything that doesn't come in a bottle now if I am out with friends, especially in a busy, loud environment where people don't hear you or are so busy they make mistakes. My fiance and I refer to these as 'the rules'!
I've had four (4) incidents in the past 3 years like this (since going gluten-free), when I thought I was being safe and I wasn't, but it was only in the three most recent that I vomited, so my experience jives with that of other forum users who seem to say that over time their reactions to gluten worsen. It takes me longer to recover from ingesting actual gluten in food form than it does drinking liquor made with gluten. What scares me the most about the fact that my reaction has worsened is my heart health. Vomiting like that is not just uncomfortable, it's scary!
For the last month, I've been religiously taking a probiotic, as well as a B complex vitamin. I've also been making a concerted effort to eat lots of naturally gluten-free and corn free fermented foods, like Kombucha, miso made without soy, relishes, etc. I think that these things are really improving my overall energy and health, and hopefully they'll help my gut. They seem to have decreased my recovery time after my last vomiting bout. Usually it would take me a full week to feel 'normal', but I bounced back much more quickly this time. I wish I had started with the probiotic right away.
I don't think so (re: Sjogren's), as I don't have any of the symptoms and my eyes are not generally dry. I think I'm going to give up contacts, too. Not worth the risk of losing eyesight! Thanks for the response! Sorry to hear that you have such issues with dryness - I hope you are able to find a solution.
I have been diagnosed with Celiacs, gluten-free and Soy Free (I have an intolerance) for a little over 6 months.
Just got back from the eye doctor for a visit that surprised me. Though there are some other threads on this forum dedicated to topics like contact solutions, etc, I wanted to start another dedicated solely to the topic of contact lens issues (intolerance, etc).
I thought that I had scratched my cornea in my right eye (hiking or via a collision with a friend's pooch), but it turns out that my contact lenses have been suffocating my eyes for some time now. My corneas have literally been starved for air and moisture and the contact solution I was using (Opti Free Express - recommended for a Toric Lens wearer like myself) is contributing severe irritation. I have an astigmatism and wear special toric lenses as a result. My doctor says that in order to survive, my cornea is growing blood vessels. There are pock marks around and on the cornea. This causes hyper-sensitivity to light, air, etc. Thankfully, we caught it.
I have been ordered to stop using contacts until I get the all-clear - could be weeks, could be months. I am also advised to switch to a hydrogen peroxide-based lens solution once I go back to contacts to avoid all of the chemicals in other solutions. Right now, I'm in a lot of pain and discomfort, am sensitive to light, and not looking forward to a summer filled with hiking, swimming, etc. while wearing glasses. But such is life! And it could be worse!
Has anyone had similar issues? I didn't consider possible issues with contact lens solution, so I'm interested to hear if others have had similar diagnoses like corneal damage.
Notably, my doctor told me to be patient, to which I replied 'I have honed that skill via my dealing with Celiacs'. He seemed surprised to hear that I was a Celiac. I did ask him directly whether or not there might be chemicals in contact solution derived from verboten grains or soy, but he wasn't sure. He did say that it would be very difficult to comment on any kind of correlation between the issues I was having with my eyes and Celiacs because a) frequency of Celiac patients in an Opth. office and lack of self-reporting of Celiacs to Opth.'s would complicate the ability to determine some kind of correlation.
YES!!! THERE IS!!!! I have Celiacs and am also soy intolerant and a vegetarian, so giving up my beloved soy sauce was killer!
However, my boyfriend recently found me a soy-free, gluten-free soy sauce substitute: Coconut Secret. I broke the stir-fry fast!
Coconut Secret is made with Coconut Aminos. Not sure how this will jive with some people's systems if they have a nut allergy. In any event, my gosh it's good. Less sodium than tamari, loaded with vitamins, slightly sweet flavor. You will not miss your soy sauce!!
Coconut Secret is sold at Whole Foods (maybe Wegman's, but I haven't looked) for about $6.00 a bottle. It's got essentially the same price tag as Tamari, but I can totally justify it if it means I get a nice bowl of rice with ginger, scallions, and some tasty Coconut Secret!!!
Swedish Fish are the only conventional candy I will allow myself to eat since discovering my Celiacs (and going Soy Free - I have a definite intolerance). I am also a Vegetarian, so the fact that they do not use gelatin in Swedish Fish is very important to me. I have never been affected by eating Swedish Fish, so for my system at least, which is hyper-sensitive to trace amounts, I believe that they are 'safe'! The company that makes Swedish Fish also makes a Sea Life mix that has different flavors (lemon, lime, etc) and I have had those candies and did not suffer any after-effects.
If you are looking for other candies to eat when you have a craving, Whole Foods has been selling gummy oranges, stars, and a couple of other items in their Bakery section lately. The stars are gelatin, soy, and wheat/gluten free! The ingredients are listed right on the label, so they may or may not be individually safe. I am inclined not to eat them if they come out of a gluten-filled bakery and are not in a bag (they keep them in big apothecary jars), but that's just me. Maybe I'll give it a go!