bearodilla

I have been gluten-free for about a year and only had a couple of glutenings, however in the past it was easy to pinpoint and I only had intestinal symptoms but a few weeks ago I started drinking Coke a few days a week and now I have DH on my hand? I have been through my house and written down my diet the only change is the coke but I haven't had a problem with it or caramel coloring in the past. Has this happened to anybody else?

Forget the second language barrier. I work in a business with all of seven employees and despite my multiple explanations of celiac and what I can't eat they still use my gluten-free food in the office kitchen which are labeled gluten-free DO NOT CROSS CONTAMINATE. for months i was getting glutened and couldn't figure out from where until I caught somebody using thier glutenny knife in my peanut butter they said "i thought that you wouldn't mind sharing" WHAT THE HECK!? I plan on spontaneously developing an illness before this years christmas party last years was not fun. Hours of people offering you food that you can't eat. Anyway i know that i sound pesimistic and i only hope that your event goes well but i am at the point where i feel if they don't get it before the event don't expect anybody to get it when they are having fun with a drink in thier hand, (oh yeah no beer and no wine, sulphites)

I'm not sure where to put this (so moderators please move it if you think it belongs elsewhere!), but I think this is getting ignored by both the celiac community and our doctors on a regular basis, so I just had to say it.

Celiac disease has been in the news quite a lot lately, and while this is a good thing in general, I worry when I hear people (both celiacs and doctors) explaining celiac disease in a way that is misleading or just plain wrong. I've said it before, and I'll say it again (probably a thousand thousand times): Celiac disease is not a gastrointestinal disorder. Celiac disease is a systemic auto-immune disease. What brought this to the boiling point was a recent discussion with my newest doctor (I moved postcodes, and had to acquire a new physician. . .damn) about celiac disease. Like most GPs, my new doctor doesn't know much about celiac disease (he admits "we studied celiac disease in med school for about five minutes"), but he's relatively open minded and wants to learn what he can. So we talked.

I said: "Celiac disease is an auto-immune disease in which the presence of gluten in the body causes systemic immune responses that manifest in each patient in diverse and potentially changeable ways. The most common manifestation is a gastrointestinal response - so-called 'classic' celiac disease - characterised by diarrhea, malnutrition, vomiting, weight-loss and lethargy. A second common manifestation is in dermatitis herpetiformis, lesions in the skin, frequently on elbows and knees in a circular pattern, but also relatively common on arms, legs, face, scalp and torso. The most definitive diagnostic symptoms of DH are therefore symmetricality and improvement on a gluten free diet, with positive biopsy where possible. A third subset of celiacs may present with one symptom or an inconclusive cluster of symptoms, so-called 'silent' celiac disease. In keeping with the systemic nature of the disease, celiac disease may also manifest in other organs, including the liver, kidneys, gall bladder, and brain."

"Hang on," he said. "Celiac disease can affect the brain?"

"Yes," I said. "A number of studies done since the 1970s suggest that gluten antibodies may cross the blood-brain barrier to form lesions (usually calciferous lesions similar to those found in alzheimers or parkinsons patients) in the brain. These lesions usually resolve, for the most part, on adoption of a strict gluten free diet. The evidence for neurological effects of celiac disease are supported by the experiences of many celiacs who report symptoms such as depression, migraine, or mood swings that would suggest the involvement of the brain. Other celiac patients present with specifically neurological symptoms such as ataxia, poor motor-coordination, neuropathy, vertigo, loss of sensation, epilepsy, speech problems and memory loss, but without significant symptoms that would otherwise lead to a traditional neurological diagnosis.This has led to the adoption of the term 'neurological celiac disease' to describe patients with significant neurological responses to the presence of gluten who may or may not experience (severe) gastrointestinal symptoms."

Most of you will probably recognise yourselves in the first part of the above discussion, but some of you will recognise yourselves primarily in the last part of the discussion: you hear 'ataxia' and remember stumbling and staggering through life as if you were drunk, clinging to handrails and walls and occasionally wiping out in the midst of crossing busy intersections, while 'neuropathy' conjures up the thousands of times you've sat at your desk shaking your hands and feet like a compulsive freak in a desperate attempt to make the pins and needles go away. You may remember the horrible feeling of searching desperately for the word you used to know and loved to use, and stuttering out an inadequate alternative because the silence has stretched too far. Or maybe you remember feeling the world spin underneath you when you lay down, or that funny disconnected feeling that made moving your body feel like trying to drive a car made of jello. Maybe, like me, you played thousands of hours of catch and never once caught the ball. And you can probably remember the day you felt, for the first time in years, like you truly inhabited your body - the day you made it to the bathroom at the end of the hall without tripping over your feet or walking into a wall, or the day you caught the keys somebody tossed to you, or maybe it was the day you crawled into bed and didn't feel the world spinning. The day you realised that all of your stuttering and stumbling and spinning had a cause: gluten. That was a magical day (although I must admit I do miss feeling the world spin. . .I rather liked that. . . ).

On the whole, I think we've done pretty well as celiacs in educating our doctors, nurses, anesthesiologists, dentists, family and friends on what it means to be a celiac - in some places, the tests for celiac disease are now ordered as a matter of course when diagnosing digestive difficulties. But just as researchers are still studying celiac disease and coming up with new information, we need to keep educating. What I'm asking is that we start to mention neurological celiac disease to our doctors and nurses and dentists and family and friends when we talk about celiac disease, because our brains are not as resilient as our digestive systems. We all know how hard the diet is, but I know of one little boy who will not only have to cope with a gluten free diet, but will always need a walker to get around, and will suffer from severe mental disabilities all his life because it took four years worth of doctors - and thousands of tests - to realise that he had neurological celiac disease.

I am wondering if anybody out there knows of a book of mainstream gluten-free foods other than the clan thompson (very incomplete, very useless) because as much as I like to eat organic etc. I cannot always afford it. Can anybody help. Maybe somebody out there in gluten-free land can share their own list. If I can collect enough of them it would be terribly helpful. FYI ther is now whole foods within 300mi and I only get 2% off at my co-op for being a member.Thank you

What are sulphites? I was reading another thread and lately I have been eating a lot of fruit salad with a lot of grapes (they are cheap right now) and my stomach has been really upset. I started eating all of the fruit after being glutened three times in two weeks and wanted to make sure that nothing got into me. I have been really confused at the upset stomach. Is there anything else high in sulphites that I might want to avoid?

Since going gluten-free six months ago I have noticed that my PMS has gotten worse, but the period itself shorter. I too quit soda a few months ago so maybe it is related. However this last week I was glutened and my mouth soars are back with a vengence, so is the fatigue. Sucks. I have been so careful but my family is not always supportive and cc can be an issue. Is your partner kissing you after they eat gluten? Maybe that is where you are getting the cc. Just an idea... not sure if it is a real problem.

I love the stuff but my chiropractor got on my case about the caffiene. However since stopping I have had horrible brain fog, and i am talking like three weeks of it. I want to start again but read in another thread that it isn't safe. I really want to drink it again. Any suggestions?

I was just diagnosed with celiac (and now possibly crohns) a little over a week ago and am finding it quite overwhelming trying to figure out what I can eat and new recipes, etc. while still holding a full time job and trying to raise (not to mention worry about) a 1 1/2 year old toddler. I have been debating taking a leave of absense or going part time, and was just curious what other people did when they first found out they had celiac. I'm just feeling very depressed today (last night was when my dr. called with the news on crohns) and am thinking a break might do me good. Of course, it would not help my career at all.....

I had a really hard time too when I started. I have a 3 1/2 year old and am going to college working full time etc. I am just now able to get reallly into my "new" diet now that school is over (I have been gluten-free for 6 months and so busy i have been living on corn flakes blah blah) I am now diving in and having a great time. You just need to take a week or two to really devote yourself. this is a lifetime long lifestyle change that you are undergoing. It takes time to learn and accept, not to mention grieve this change.

It will get better but you have to be patient with yourself and open to give yourself the time. You will be a very unhappy person if you don't get better and comfortable about your diagnosis. If you aren't happy and relaxed your child can't be either. A child is like a barometer of their environment and your toddler picks up on your emotions. Get better for both of you. Good Luck.

where do you buy them? Are they frozen or in a mix that you have to make? I haven't found any fresh bread that is gluten-free, just the frozen stuff that is so old the ice crystals are covering all of it!

The dry mix is great and quick. I make muffins and buns quickly with it. It also makes great loaves. I AM IN LOVE WITH THE STUFF!!

I have the dermatitis herpetiformus type of celiac. My acne really cleared up and i know that I have eaten something bad when I break out. My stomach really doesn't react badly like other people but my skin tells me what is going on with my body. Acne is a side effect of celiac because your body is weak and can't fight the bacteria as easily as a healthy body.

First off thank you to those who wrote back about my fist thread and there is no costco, whole foods, trader joes etc in a ten or twenty county radius. I went to my local teeny tiny co op and spent two hours scouring ingrediant lists but i am unsure whether all hydrogenated and hydrolized oils are out. It seems as if everything has them.

Is cool whip for instance safe? How about chocolate milk?

I am on month five or six of gluten-free and I am bored and confused. I live in a tiny town and the nearest support group is 100 miles away. If i eat another lunch of hummus and rice crackers or dinner of chicken and potatoes I may go insane. I have some cookbooks but it is like reading another language to me. The list of hidden glutens that i found is so long that i feel like giving up and living on gluten-free corn flakes for the rest of my life. Is there a simple way to learn this stuff? I am a mother of a three year old and work full time and go to college half time i don't have the brain space to relearn how to eat.

I want icecream again, i would settle for a candy bar. HELP