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 use joico shampoo and conditioner www.joico.com they emailed me a list of their gluten-free products and indicate that their vitamin E is synthetic.
Also recommended from my derm I use Vanicream and free and clear. You can get it at some drugstores or order it online. They have shampoo, conditioner, sunscreen, lotion, lipbalm, shaving cream, soap, skin cleanser etc..
I kissed a guy that had drank a few beers and it made me sick!
My Dad has celiac (for 20 yrs) and my mom just doesn't eat gluten because it's easier...turns out her side of the family has it too and she probably has it. 2 of my 3 sisters just found out they have it. I think my brother in laws probably aren't eating gluten like before knowing my sisters LMAO!
I'm having pretty much the same promblems you describe. I'm in western MD.
I have family memebers with celiac and also I have Dermatitis Herpaformaris. I had a biopsy done 3 years ago that was negative but my symptoms were so bad it prompted me to eliminate some gluten from my diet. I got diagnosed by a dermatologist by the DH.
When I saw the specialist in Baltimore I didn't need any testing to prove. He said my dietary reaction and skin was enough.
I've been on prednisone for a breakout I think has been caused by almond milk from 4 weeks ago. I had chocolate with almonds in it the other night and had similar breakout. I am pretty sure I'm also allergic to Soy, peanut butter, lactose, MSG, maltodextrin (in a lot of spices) some fruits and vegetables and now almonds.
I am supplimenting my diet with "Boost Resource" It's a juice drink but has to be ordered from medical supply.
I also eat lara bars a lot.
My dad has had it for 20 years and 2 of my 3 younger sisters are just discovering they have it as well.
I eat a lot of meat that has a small amount of (mccormick spices) on them, vegetables and bland fruit. Also thai rice noodles, basmati rice (hate white rice) and I'm still working on other things to eat.
It is really darn frusterating.
I can totally relate! I was diagnosed in Sept '09 and none of the Dr's could figure it out! It was actually a dermatologist who realized I have DH! I have all of the other symptoms and my dad, grandmother, great aunt, 2 of dad's cousins and 2 of my moms sisters ALL have it. 2 of my 3 sisters are realizing they have it too!
I have discovered allergy after allergy to other foods as well! I feel sometimes like I am going crazy for something to eat. I have figured out I can't eat dairy, soy, peanuts, maltodextrin (even corn), msg (even not derived from wheat), some of the more acidic fruits and some vegetables! Now I'm just figuring out that almonds make me break out pretty horribly as well and it feels pretty much like glutening and 4 weeks ago i had almond milk and broke out so bad i had to go on prednisone. I ate chocolate last night with almonds in it, probably 4oz of chocolate and here I am breaking out and itching like crazy, stomach making noises, brain fog, aches, insomnia, headache...
I too am "afraid" of food. I lost 70lbs since last Feb putting me back to my early 20's weight of 125 lbs! People tell me "oh great job" or "I would love to lose weight like that" yeah I want to tell them to shut up because I didn't do it on purpose and it's absolutely no fun at all figuring out all the other allergies that seem to crop up with the gluten-free thing.
I never ever eat gluten intentionally, have had a few mistakes but for the most part it's cleared up everything else too. I'm just a little frusterated with these "other allergies". Especially the way almonds make me so itchy and blister so bad as well.
Saw your post and just wanted to comment...sorry, mind has gone blank "brain fog"!
I used to get that too! Actually I get it somewhat if I get glutened or eat soy, lactose, peanuts and almonds, some fruits and vegetables.
A lot of people do have lactose intolerace from the beginning is what my Dr. told me. He also said is common to notice some that become more prevalent since going gluten-free frees up so much of your body's resources. I have been lactose free pretty much just after going gluten-free.
For the person with the tomatoes...I know some people are also allergic to "nightshades" (tomatoes, potatoes etc) and perhaps it is just showing up now.
I can't eat any acidic fruits at ALL! give me that feeling too. For me blander is better LOL.
My dr said remove the offending food and try it again in a month to see if your reaction changes.
I have been gluten-free since Sept of '09 with a few "accidents" but none really in the last couple of months.
I have DH in addition to the stomach/intestinal issues, cognative problems "brain fog", Fibromyalgia symptoms, chronic fatigue, anxiety, depression and a few other things. All of the symptoms go away when I am gluten-free.
At the same time I went gluten-free I also went lactose free since it seemed that dairy bothered my stomach as well.
My Dr. told me it is common to have allergies show up that weren't as noticable before or show up but go away after a month or so. (or not)!
Since going gluten free I have had to eliminate peanuts, maltodextrin (even corn), msg (even not made from wheat), soy, and some fruits and vegetables. I had a huge breakout about 4 weeks ago and thought it was soy from the boost that I drink but I think it was because I had almond milk. I broke out everywhere, was itchy, irritated and it has taken more than 3 weeks and dapsone gel wouldn't even work. I had kenalog cream and that make it worse so I have been on Prednisone.
I JUST ate some chocolate with almonds in it yesterday. I am totally breaking out again, itchy, irritable, can't sleep, hot etc. Was a really small amount too. Was a small amount of almond milk I had ingested as well, over a couple of days. Oh yeah, I am having GI issues as well. Also the inside of my lips peel and my tongue is raw. It all is similar to getting glutened. I might have to look at the cashews too...
I am also still having stomach cramps after 5 months of being gluten free. I just saw a celiac Dr last week and he told me it's not uncommon to have temporary allergies to common foods like lactose (which I stopped eating 4 months ago)
soy, peanut butter and maybe a few other things. He told me to eliminate them for a month and slowly reintroduce them one at a time.
I seem to react to maltodextrin and MSG badly. Even if the MSG is made from corn I react to it. I never drink soda because I think there is something in the dark sodas (root beer) possibly the carmel color even though it's supposed to be made from sugar in the US.
I also cannot use any personal hygine products containing gluten.
I have the same reaction after eating something suspect, I start itching. I have DH as well though. In the last month it is almost like I have had a relapse and my stomach really hurts and I broke out in blisters everywhere. I'm pretty sure I didn't eat anything.
When I go anywhere, I bring Larabars, boost, rice noodles and any fruits and veggies I can eat. Depends what area of the country you are in but there are some areas where there are more gluten-free restaurants than others.
I was diagnosed with Fibromyalgia with all 18 trigger points in 1998. Also had chronic fatige, was overweight, lethargic and had bad insomnia.
My GP put me on Savella for FMS. That stuff did something to me. It is similar to effexor (a SNRI)
I have always had what I thought was acne but I broke out EVERYWHERE! I felt worse and more irritated that I ever have. I could only tolerate it for 4 days and I took myself off it. I do take some other meds and have for years. I had been feeling so crappy and in the next several months I lost about 50lbs.
Finally I went to a dermatologist who diagnosed me with dermatitis herptaformaris, the skin's reaction to gluten. Since my dad has celiac and so do other family members it was very clear where all my problems were and I immediately went gluten free.
I saw a top celiac Dr. yesterday and he said it is common to also become allergic to lactose and soy sometimes temporary after going gluten free.
I have NO pain anywhere since going gluten free. I am strict and don't eat anything produced in a facility that manufactures anything with gluten. I don't have any cross contamination, I don't eat out.
The dermatitis went away with the gluten free diet and only flares up if I accidentally eat gluten.
I kissed a guy who had been drinking beer the other day and it flared up!
I can't eat gluten, I can't touch gluten. I break out in hives. I think it's a crazy attitude to think you can eat it once in awhile, you're only damaging your intestine again.
I also think many people don't know how many things do have gluten in them. Even my dad who has been gluten-free for almost 20 years didn't know about a few things I told him about.
Savella did NOT work for me, made everything worse, now I wouldn't eat any gluten for money. That's how much better I feel. I had so much fog in my head before and now I'm very clear headed.
I was looking at the Pure Silk Almond milk today and it says Lactose Free and soy free but not gluten free. I did contact them by phone and was told that as per the FDA guidelines they weren't required to put it on the label but that it is gluten free.
I don't know why they wouldn't put Gluten free! I told them they should for easier identification.
Out of frusteration I went to a dermatologist for my persistant "acne" and he immediately recognized it as DH!!! I had all of the celiac symptoms too. Diagnosed with DH in Sept '09. After going to Dr after Dr for 5 years trying to figure it out it was a welcome diagnosis since it runs on both sides of my family.
Matthew Bruntel, DO
Frederick Skin Care
604 Solarex Court Ste 205
Frederick, Maryland 21702
I get to see Dr. Fasano at U of MD in a couple of weeks.
Still looking for a dentist that understands celiac! suprising few do!
I feel "glutened" if i drink or eat anything with "carmel color" in it. Barqs root beer is supposed to be ok but had me sick for 3 days. I also had that "metallic taste", it went away. I was getting bad mouth sores and figured out it was the toothpaste i was using so I switched that too. Also had to switch to gluten-free shampoo/conditioner/makeup/lotion etc...things improved. I also suffer from DH and am finding that staying away from dairy has helped immensely. Am seeing a celiac specialist in Feb so hopefully he can help me sort this all out.
Either dextrin bothers "some" people or I am also lactose intolerant because M & M 's bother me every single time...
I am also irritated by "carmel color" such as that in some of the root beer's (barqs), dry roasted peanuts, maltodextrin in spices and many of the "gluten free" marked instant rice noodle soups.
I just ate some m&m's and i am suffering!!! ugh!
Just FYI...anyone else have that problem? I also break out in hives from touching any wheat/rye/barley/oats (products) and cannot be in the same room or smell range as something baking or a baking aisle in a grocery store because I start wheezing and getting a closed throat!
I have dermatitis herptaformairs too so I guess you could say I'm pretty easily irritated.
I am having a reaction as I type this. I had probably about 1/2 cup of Barqs. I didn't even think to look, but I am very reactive and also have DH. Itching all over and have horrible headache and brain fog. I think it's the Carmel color. I seem to react to it in other things and I don't see anything else on there that I would react to...seem to be pretty darn sensitve though. Just started itching and have had gas for the last 6 hours, my lips start to get really chapped feeling too. Need to take benedryl too as I have an "allergic" hayfever type reaction. Drank it at about 6pm and it is almost 4am. I will be up all night!