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  1. I have been on a gluten free diet since Sept of 2005. My intestinal symptoms have vanished, but I also had to give up tomato's and anything containing citric acid (either natural or additive). My health has improved, but I used to be a really energetic person and I barely make it through a 40 hour week (I'm in the Air Force). I don't have a problem with navigating the diet but I feel like maybe I'm still nutritionally deficient. I have a lot of chronic pain in my joints, my hair is very thin (started falling out about 19 years ago), I have dark brown hair but the skin color of a red head. Maybe there are better vitamin's, foods I should add (since I have deleted so many). Is there anyone who knows of a good specialist in the Dayton area. It just still seems like I'm not getting what I need. I work in the hospital and I can't get any help from anyone.
  2. Maltodextrin is ok. I picked up a subscription to the Gluten Intolerance Group Magazine and it has been very useful. Turns out a lot of stuff I initially cut were ok because of the new labeling guidelines and rules on how things are defined. Their web site is www.gluten.net, maybe you can get some back issues that talk about the new labels. The new FDA guideline for labels made a big difference, but they only had to start printing them January 1, they are still using the old stock of labels or some of the food is older so watch out for that. Usually you can tell because it will list milk or soy as an ingredient but not have the comment "contains: Milk/Soy". Bob's Red Mill makes a good chocolate cake mix, and make home made icing with cocoa from the recipe on the container. One major brand of icing has gluten the other has soy, so that is a problem if you can't tolerate soy too. I switched to Lactate milk because when you are first diagnosised you are going to be lactose intolerant too (lactase is made at the ends of the villi which are damaged). You may be able to tolerate it better later, but make get similar symptoms from milk as you do from gluten initially. I just started to be able to eat cheese after about 8 months gluten-free. Everyone at work ate the cake and had no idea it was gluten free.
  3. I justed wanted to say that I am one of those people with Non-celiac Gluten intolerance. The antibody test was negative and the biopsy taken 1 month after I went gluten free was negative (except for lymphocyte agregates). I was positive for both DQ2 and DQ8 and when I don't eat it I am fine and when I eat it I am sick. If you feel better then just keep doing it. My gastroenterologist said I could eat it for a month and try again, but why get sick again. Do you need the diagnosis for any special purpose or just to feel sure? If it won't change your insurance, disability, or help you in any way then don't make yourself sick just to get the doctor on board with the fact that you can't tolerate gluten. My doctors were not really on board but the genetic testing and the elimination diet experience got them to list it as Non-Celiac Gluten intolerance. It isn't easy to stick to the diet, but it sure feels great to stick to the diet. Hope you continue to have good health with the diet. J.P.
  4. I have Non-Celiac Gluten Intolerance, but I also have problems with rashes. Most of them went away when I went Gluten Free. But other food intolerances cause me to have them, oranges (citric acid) and blue no. 1. I also read that DH may take a while to resolve on the gluten-free diet, but it will resolve. I worry because I have DQ2 and DQ8 meaning my oldest has DQ8 and my twins have DQ2. All have mild eczema occasionally and my oldest has been saying my stomach hurts a lot more often in the last month. I'm hoping that the studies that say breast feeding helps are right. My oldest breast feed for 4 months and my twins for 15 months. It was very hard for me to change my diet, just kept getting it accidentally (the new labeling requirements are so helpful but not everyone has used up their old stock yet). I have reduced my children's intake, but I have not been able to force a switch without any labs telling me they have it. How is it that these labs can do the tests without a doctors request? I know we can't test without an order and we can't give out lab results to patients (I'm a Medical Technologist). I'm tempted to have one of those food intolerance panels run, but I wonder what sort of accrediting agencies inspect these facilities. Can't help it, I've been involved with too much quality assurance.
  5. DH, Celiac and Non-Celiac Gluten Intolerance are all caused by Gluten Intolerance. The symptoms and lab test results are different but the need for the Gluten Free diet what is need for all of them. People with DH can take medications to make the symptoms decrease, but the cause is still there. I also read that even without villi damage you will still have vitamin malabsorption. If you have any of the three you should follow a gluten-free diet. I'm trying to convenience a colleage with DH who was diagnosised the same month I was diagnosed with Non-Celiac Gluten Intolerance to go gluten-free. He takes Dapasone and still cheats, but at least he is starting to make the transition. J.P.
  6. Growing up I was a very thin child. During junior high my parents switched us to a whole grain diet which included a lot of whole wheat. I missed 30 days of school (not in a row) due to stomach pain. We were only allowed shreaded wheat and grapenuts (only cereals with no added sugar). The doctors did upper and lower GI series and the diagnosis was teenage queazies because I didn't like my school. At about 5ft 4 I weighed 88lbs, and was 13 years old. I had chronic constipation and only had a bowel movement every 4-5 days and I had no idea that that was not normal until I went off to college and we talked about daily bowel movements in biology. I was 5'6" and 110 when I graduated from high school. During college my hair began to fall out and I started having abdominal pain and bloating. The doctors did all sorts of tests for the hair loss and came up empty. By age 22 I weighed 117 lbs and was 5'6". I stopped drinking milk but didn't give up all milk products. Age 24 I had appendicitis. Abdominal pain, chronic constipation and bloating were a constant problem. At age 29 I had my first child, she didn't sleep at all and was very cranky. I weighed 137lbs which is a good weight. My daughter was in the 80th percentile for weight. By the time she was 2 I was developing chronic fatigue and would sleep in very late on weekends and had trouble getting up during the week to go to work. I started gaining weight and over a 2 year period gained 20 lbs dispite 5 days a week exercise and all sorts of diets. I got pregnant again, I weighed 160 and gained 40 lbs tipping the scale at 200 lbs when I delivered twins 5.5 weeks early. They are both small, below the chart, but healthy and sleep well and not cranky. I was able to get down to 155 lbs, but over a 3 year period gained weight until I weighed 176 lbs, I had no energy, I couldn't exercise strenuously due to pain all over my body (fibromyalgia, constipation predominate irritable bowel and chronic fatigue). I was able to get rid my problems sleeping at night when I had a hypernodule removed with half of my thyroid. I figured out and tried a gluten free diet on my own, when the antibody test was negative I tried one bit of a tortilla and 15 minutes later I was sorry I did. I started a gluten free diet and felt better, I had a biopsy which was 1 month later and it was negative except for lymphocyte aggregates, but the HLA testing was positive for HLA DQ2 and DQ8. I am down 17 lbs now and have been able to go down in sizes again. The gluten free diet can make you gain or lose weight, if you focus on meats and vegatables you will lose weight easier than if you focus on lots of gluten free starches or high calorie gluten free treats. I still eat those lovely cookies, but one at a time. I have a herniated disc and tend to get tendonitis. I try to keep up with sit ups, stationary cycling and pushups so I can pass my AF physical test, but I usually feel bad after the test because I go all out. Standard lose weight advise works, just add don't eat food you are intolerant too. My diagnosis is Non-Celiac Gluten intolerance and let me tell you it takes you down slowly. My children all carry DQ2 or DQ8, the antibodies like mine are negative, the twins are small but energetic. My oldest had constipation problems early on and bad teeth (both could be from letting her have too much juice). For them I will try to keep an eye on their health and look for indications of the illness. My older sister has thinning hair, and is over weight with asthma, but tried a gluten free diet and noticed no difference when reintroducing gluten. My younger sister had a goiter (hashimotos), but it went away, she has an intolerance to chocolate and lactose. The chocolate gives her migranes. They have not been tested. My parent obviously both have one HLA that puts them at risk. My mom use to call me her healthy child, but not any more. I'm getting better and the weight loss is so much easier on the right diet.
  7. Celiac disease damages the villi in your small intestines. Lactase, the enzyme that digests lactose is producted on the ends of the villi. Your continued symptoms could be caused by lactose intolerance caused by damage to the villi. Lactose intolerance can be reversed, but may not. First you will get rid of the intestinal symptoms, but if the damage was done over a long period of time, it may take a long time to feel well. You should also pay attention to what you ate if you feel different. I started finding that things that did not have gluten in them also bothered my stomach and caused skin irritations. I have figured out two other items, the food coloring blue no. 1 and citric acid. You can have other food intolerances or even allergies. I feel better on the days that I remember my vitamins. I take Natures Made (gluten free) multi vitamins, B Complex, calcium, Co-enzyme Q-10, vit-C (need to find one without orange flavors just in case). You may also make mistakes in your diet because you will pop something in your mouth without even thinking about what is in it, say a breath mint or a piece of candy. Try sticking to meats, vegatables, fruits, potato's, rice, and corn. Prepare items yourself and don't buy processed foods for a while. Soy sauce has wheat in it and lots of things have that in it. Watch out for meats with flavors added, marinades, fake crab meat. Hope you start feeling better real soon. J.P.
  8. -Hi just started reading this, but not the whole thing. I have non-celiac gluten intolerance. I am a Medical Technologist (run a hospital laboratory). I figured out the gluten intolerance all on my own. That is not to say that I didn't see lots of doctors along the way for lots of different problems (my medical record is on to it's 3rd volume and the first one started at age 22 when I joined the military). I think that gluten intolerance can start without you even knowing it, cause damage slowly, and you think that you just feel that way because that's normal. My health deteriated over a long period of time, when I was in college my once thick beautiful hair began to fall out and now my white scalp shows through my dark hair. I do not cheat on my diet, having to travel and eat out makes me nervous. When other people prepare food you don't know what you are going to get. I was at a conference and the very first night I got exposed and I don't know what it was in. My stomach will expand as much as 5 inches, and let me tell you that hurts. I don't get D... most of the time I get constipated. I even had a hospital stay due to a bowel obstruction. I couldn't tell that gluten was my problem because I ate it all the time. When you don't eat it you feel normal, then you can feel the difference better than you could when you ate it all the time. If your body is feeling bad already, eating a little more may not make it worse and you won't be able to tell the difference. I figured this out last year and have lost 15 lbs, my stomach doesn't expand everyday, everything is more regular. I'm sad for what I lost, but after all these years I'm glad that now I can do something to feel better. I'm one of those people diagnosised with Fibromylagia and constipation predominant irritable bowel, and chronic fatigue. I had half my thyroid removed due to a hyperactive nodule and there were lymphcyte infiltrates (white blood cells) characteristic of hasimotos disease (my sister, aunt and grandmother all had goiters). I'm hoping that the other half will be ok now that I'm on this diet, so far it is working in the normal range and I feel so good. I would encourage anyone with any form of gluten intolerance to stick to the diet. Is there a good way to figure out what other food I may be sensitive too other than trial and error? I can't eat citric acid (oranges and rice cakes with citric acid irritate my stomach and cause rashes), food with blue no. 1 (marshmellows and red drinks) also irritate me J.P.
  9. Ascorbic Acid is Vitamin C: you have to find a source other than citris fruits. Citric Acid is found naturally in citrius fruits: lemon, lime, orange, grapefruit and tangerine. I have non-celiac gluten intolerance and recently realized that food with citric acid bother my stomach and cause itching and rashes (not hives).
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