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  1. I've noticed over the last few years as my celiac disease progressed to the point of being diagnosed from the increasing symptoms, I've had more and more problems with dairy. The most obvious symptom is a stomach ache, and often loose BM's, but now my tongue actually feels like it is sizzling, or mildly burning, when I eat it. Milk and ice cream are more noticeable, but hard cheeses can cause this too. What is happening in physiological terms?
  2. My wife was diagnosed with IC about six years ago (hers was confirmed through a cysto-scope done in the hospital, the urologist rated her a 7 out of 10 for the damage inside). There is more to the IC diet than just citrus. Also, no alcohol, no chocolate, no caffeine, no fresh tomatoes, no acidic fruits and vegetables (think: pears are mild therefore good, hot peppers are spicey and are bad), no soda, no artificial sweeteners. Make sure to drink enough water, without throwing your bladder into a fit. This is so important it can not be stressed enough. When I first met my wife she was only drinking coffee and diet sodas. She laughed at me when I pleaded with her to drink more water everyday. (She apologized when the doctor agreed). My wife was given weekly instillations of TICE BCG, which is a liquid form of partially denatured tuberculosis bacteria, into her bladder for 8 weeks. It reacted with her bladder lining and sloughed off a layer of skin, forcing the bladder to regrow the surface lining. It took about a year before my wife was out of the dangerous waters of constant flares, not sleeping, peeing 25 times a day. But now she is near normal and in fact probably pees less often than some so-called "healthy" people. She still follows the IC diet but can have occasional cheat days (her favorite thing in the world is coffee, so this usually her choice) but she makes sure to stay away from spicey foods or she will have problems at night laying down prone. One other thing that helps is PRELIEF brand acid controller you take over the counter with your meal. It isn't made for IC treatment but helps to nuetralize your food a little, which eases the acidity of the urine as it comes through. There is another over-the-counter medication which has the active ingredient Phenazopyridine, which goes by several different common names including Azo-Standard and Uristat. These can be found in the big chain pharmacies like CVS and also most supermarkets. It gently numbs the bladder, providing some relief to the extreme pain IC patients can feel during a flare. Always keep some with you. It's like an aspirin for a headache. The cause is unknown although in my wife's case we believe it was related to the many fertility tests she went through years earlier with her first husband during which all sorts of chemicals and dyes passed through her system. I personally belief, as celiac who is somewhat diet obsessed, that diet is a huge part of this too. Her diet was fast food, coffee, and artificially sweetened sodas, and chocolate bars every night as a snack. Now she eats completely different and everything about her health, from her cholesterol to her energy levels, even her weight, has changed. It's crucial to treat your body well, especially if it is suffering. Hope this helps.
  3. I know if I don't eat SOMETHING I'll be worse off very soon after leaving the house, and although I have checked my blood sugar for a period of a year to see if this was the culprit, it wasn't. My sugar numbers are perfect. But it FEELS like my blood sugar is off if I don't eat. My choice then becomes: eat and feel nauseous, or don't eat and feel like fainting. Ursala's "night owl" theory makes a lot of sense. I'm wide awake and full of energy at 11:00 pm, when I should be hitting the sack. Less than 8-9 hours of sleep for me worsens the symptoms dramatically, but falling asleep before 11:00 pm just doesn't happen easily. I find that eating something within an hour of bedtime helps me to fall asleep - maybe this is having a detrimental effect overnight.
  4. I've been subject to morning sickness all my life. As a child I would frequently throw up before going to school, which my parents thought was just me being a little "nervous" about going. It was never considered that I was reacting to the bowl of cereal and milk I ate because I was celiac! Anyway, fast forward twenty-some years and I finally get the diagnosis last year. Since going gluten-free (and enduring a terrible DH rash for several months as a result) I now have healthy BM's and my energy level is much improved. I'm still working on what foods bother me along with the gluten items, but one thing that is still puzzling is why I wake up nauseous each and every morning. I would have thought that after discovering I was celiac and I got on the gluten-free diet this would have resolved itself, but it hasn't. It makes for some very difficult breakfasts as I prepare for work - most days I leave the house on the edge of throwing up and to sit through early meetings is absolutely unbearable. I have tried all different types of meals, from simple fruit which only lasts about twenty minutes before I'm starving, to eggs which usually make me dizzy, to leftover chicken and vegetables, different types of gluten-free breakfast cereals with and without milk. It doesn't seem to be as much about the type of food I'm eating as the time I'm eating it. On the weekends I usually will just drink water until lunchtime if possible. By lunch I'm usually fine and in fact I can eat all sorts of foods later in the day without any reaction that would otherwise nail me at breakfast. Any idea what this might be about? Or what to do about it?
  5. I crave just about all the gluten foods I can't have (naturally) but I'm especially haunted by my favorite desert - a buttery smooth slice of pound cake. Can anyone supply a real good pound cake recipe using a gluten-free flour mix I can try? It just has to be gluten-free - I can have dairy, yeast, etc.
  6. The last year has been frustrating and confusing to say the least. Three different doctors gave me three different dx's and advice based on those dx's (two of them said I can eat gluten, just "not too much"). So after getting my gene test back right before the Holidays showing I have HLA-DQ2 to go along with my high level of anti-gliadin antibodies, I've decided to try a gluten-free diet again. After two weeks my usual symptoms are the same - sometimes dizzy, brain fog episodes, forgetfulness, hot then cold hands, hungry all the time, headaches after I eat, terrible dry eyes, tired all the time... but my bowel movements have worsened. My diet is very clean. No coffee, sodas, candy, sugar. Lots of fresh fruits, salad and veggie with my main dinner including plain chicken or meat. So what is going on? Why would my diarrhea be getting worse if the gluten was removed? Oh yeah, and I'm casein-free too. Dairy gives me wicked stomach aches.
  7. Just curious, but knowing that many with celiac disease have problems with other types of foods such as dairy, corn, soy, (etc) - what other foods are you "free" of in your diet, and how did this choice come about? Are you as cautious about the accidental intake of these other foods as much as gluten?
  8. Famous Dave's BBQ in central NJ is a favorite of my in-laws (and therefore my wife). They do not offer any allergen info on their website and since being diagnosed last year I've managed to steer them to safer alternatives, but I think my time is running out. Anyone have positive or negative experiences to share regarding this restaurant before a social obligation puts me back there?
  9. I get that at work too - the puzzled look, the remarks such as " on your wierd diet" or "whatever it is that you CAN eat!" Really terrific stuff at this time of the year with the Holiday parties starting up. If it gets bad enough I will wiggle out of a party where the pressure seems most intense, opting to attend the ones with bigger groups of people to get lost in, or where the food choices are better. Even my father-in-law (80 year old italian who loves his italian food) will act totally surprised again and again that I can't eat the bread he brought to dinner, and will almost always follow up with a bigger surprised look when I tell him I can't eat the pasta either!! It's like we never had the conversation the first 100 times. (I just remind myself that he is 80 after all)
  10. So much of what we celiac disease patients deal with is related to grass/grain species, I was wondering if anyone here on the forum was allergic to drinking tea? Does the tea that we drink have any protein in it?
  11. What is the actual process that takes place to cause the antibodies to attack the intestine, and how do they accomplish this? Are there other antibodies in the body that work similarly on other foods (and cause damage to other body parts)? Are there other blood tests like the IgG and IgA antibody tests that can find other autoimmune system reactions to food?
  12. Someone with gluten intolerance probably could ingest small amounts, depending on the degree of symptoms that resulted.
  13. Here's the simple question and I'm sure the answer won't be as easy: My anti-gliadin blood tests came back highly positive but my intestinal biopsy was negative. My GI doctor said they were false positives and not to worry about going gluten-free, just take Immodium as needed. (Unfortunately that would have been everyday!) He blamed it on stress. I researched the issue for myself through this board and other websites and believe I am gluten-intolerant. What I need to know is for a gluten-intolerant person, if they cheat now and again will celiac disease kick in at some point? How much cheating is too much cheating? On a positive note I have been able to stop my diarrhea altogether just by limiting my intake of gluten and other foods I am mildly allergic to. But is this enough?
  14. I've tested positive to egg allergy (both whites and yolks) and I really feel dizzy if I eat anything with egg in it, but I'm fine with chicken meat. Why is this? What is going on chemically between the two that makes my body react differently to them?
  15. After years of being poked, prodded, and generally told by my doctors that my physical ailments were just stress-related, I was finally diagnosed with celiac disease nine months ago. It has been difficult emotionally and I have been struggling with my diet during this time so that my symptoms have not improved much except that I have gotten control over my diarrhea. A somewhat annoying secondary symptom has been constant burning pain in my eyes since I was a child. After seeing a highly recommended opthamologist, he found that I have "Ocular Surface Disintegration" of my eyes, to the point where I now have cornea involvement. He put me on Restasis. He thought there could be a correlation between my autoimmune disease and the problem with my eyes but wouldn't go as far as saying that if I got my celiac disease in order my eyes would heal. I would really appreciate any info on similar experiences or advice that can be shed on this particular symptom. Obviously my biggest fear is in going blind.
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