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  1. Celiac.com 12/03/2018 - Biomarkers in blood samples are not effective indicators for diagnosis or monitoring of celiac disease. A team of researchers recently set out to assess biomarkers of celiac disease derived from neoepitopes of deamidated gliadin peptides (DGP) and tTG fragments, and to assess their usefulness in identifying patients with celiac disease with mucosal healing. The research team included RS Choung, SK Rostamkolaei, JM Ju, EV Marietta, CT Van Dyke, JJ Rajasekaran, V Jayaraman, T Wang, K Bei, KE Rajasekaran, K Krishna, HK Krishnamurthy, and JA Murray. They are variously affiliated with the Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, MN, USA; Vibrant Sciences LLC, San Carlos, CA, USA; and with the Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, MN, USA. The team began by analyzing serum samples from 90 patients with biopsy-proven celiac disease, along with 79 healthy control subjects for immune reactivity against the tTG-DGP complex. They used a fluorescent peptide microarray platform to estimate the antibody binding intensity of each synthesized tTG-DGP epitope. They validated results in 82 patients with newly diagnosed celiac disease, and in 217 control subjects. They assessed the ability of the peptide panel to spot patients with mucosal healing based on histologic results and using serum samples from 85 patients with treated and healed celiac disease; 81 patients with treated but unhealed celiac disease who showed villous atrophy despite adhering to a gluten-free diet; 82 patients with untreated celiac disease; 27 disease control subjects who showed villous atrophy without celiac disease; and 217 healthy control subjects. To assess their data, they relied on principal component analysis followed by machine learning and support vector machine modeling. In all, the team found 172 immunogenic epitopes of the tTG-DGP complex. Compared with control subjects, celiac patients showed substantially higher immune reactivity against these epitopes. In the test group, neoepitopes derived from the tTG-DGP complex identified people with celiac disease with a remarkable 99% sensitivity and 100% specificity. Blood samples from untreated celiac patients showed the greatest average antibody-binding intensity against the tTG-DGP complex. Blood from patients with treated but unhealed CeD mucosa (15.1 ± 7.5) showed significantly higher average antibody-binding intensity than blood from patients with treated and healed CeD mucosa (5.5±3.4) (P<.001). The test spotted celiac patients with healing mucosa with 84% sensitivity and 95% specificity. The research team discovered immunogenic epitopes of the tTG-DGP complex, and found that a test that measures immune response to epitopes accurately identified both celiac patients and patients with mucosal healing. From this study, the team concludes that the biomarker method for celiac testing could be useful in both the detection and monitoring of celiac disease. Read more at: Gastroenterology.
  2. So my son (age 20) was diagnosed with celiac early Feb 2018. He had symptoms since November so was a fairly quick diagnosis. Around December he started developing a swallowing difficulty which has progressed a lot in the last few weeks. He found swallowing liquids hard but now food is getting harder. During the few months before diagnosis he lost about 15lbs and probably another 10lbs since. I’m really concerned he isn’t getting enough calories and nutrients. He has seen every specialist from gastro to ENT to allergist plus ct scans barium swallow X-rays you name it and everything for swallowing comes back normal. Anyone else had this issue related to their celiac? If so what helped. He is also going for counselling because it is causing him so much anxiety. So number one any ideas in the swallowing and number two after nearly 5 months gluten free how can I get him to gain weight. Thanks worried mum.
  3. Celiac.com 10/13/2017 - Tissue transglutaminase (tTG) immunoglobulin A (IgA) testing is a sensitive adjunct to the diagnosis of coeliac disease. The threshold for positivity was developed for diagnosis, with negative results reported as below the reference value (<4 U/mL). A team of researchers recently set out to investigate if an undetectable tissue transglutaminase IgA antibodies (tTG IgA<1.2 U/mL) is more predictive of healing compared to patients with negative but detectable serology (1.2-3.9 U/mL). The research team included H. Fang, K. S. King, J. J. Larson, M. R. Snyder, T. T. Wu, M. J. Gandhi, and J. A. Murray. They are variously affiliated with the Department of Medicine, the Division of Gastroenterology and Hepatology, the Division of Anatomic Pathology, the Division of Clinical Biochemistry and Immunology, the Division of Biomedical Statistics and Informatics, and the Division of Transfusion Medicine at the Mayo Clinic, Rochester, MN, USA. The research team conducted a retrospective study of 402 treated coeliac disease patients seen at the Mayo Clinic with negative tTG IgA values drawn within 1 month of duodenal biopsy between January 2009 and December 2015. The team used Corazza-Villanacci scores to assess mucosal healing, and logistic regression to assess the relationship of clinical variables with a normal biopsy. They also noted the presence of gastrointestinal symptoms. Their results showed that patients with undetectable test levels more frequently had normal duodenal histology, as compared with patients with detectable tTG IgA levels. Asymptomatic patients more often showed normal duodenal histology as compared to symptomatic patients. Patients with undetectable blood levels, and who followed a gluten-free diet for ≥2 years were more likely to have no villous atrophy, as compared to patients with detectable blood levels. Follow-up biopsies revealed that people recovering from celiac disease with negative tTG IgA serology showed that undetectable test levels are associated with normal histology. Source: AP&T
  4. I've been eating gluten free for just over a year now after being diagnosed with celiac disease and T1 diabetes. I had just started to feel "normal" right around the 1 year mark, meaning I felt little to no pain and my stool didn't seem too out of the ordinary. Yay, finally some healing! However, the past few days I've started to feel that pain after eating, and I don't know if this is because I recently ate something contaminated and my body is healing from, or if something I'm eating is too hard to digest, or if I'm still just healing from the damage done 1 year ago!! It seems like there are so many factors when it comes to keeping gluten out of my food in my shared household (did I wash my hands? what if my soap has gluten in it? was the plate/utensil clean and not contaminated? did one of my family members accidentally put their glutened hand in my bag of chips?) and even then, what if the issue is within the food I'm eating itself? I find myself almost paranoid and feeling like no matter how many times the food package says "gluten free", my stomach is going to hurt from eating it. Does anyone else feel this way? I feel like it might be I'm eating too many processed things made with food that's hard to digest, but I don't want to limit my diet any further, though I will cut back. I was just so hopeful during those couple of weeks I was having no symptoms that I was actually finally healing!! But now I'm back to the pain. It's been putting me down pretty hard and I've been neglecting my blood sugars and insulin because of it, so that's not helping. Does anyone have any suggestions to how I can figure out what I'm eating that's hurting me? Should I catalog everything I eat and record my reactions to it? Will this pain just go away in time and this is a part of healing from mini-glutenings I get from accidental contamination? Thank you for your help. I definitely feel a LOT better than I did when I was eating gluten, but it's so frustrating to still be in pain after eating gluten free for what feels like a long time.
  5. Past few days I've been working on a diet plan that will hopefully help more than what I've been doing. This morning I woke up feeling like I did a few hundred crunches yesterday though all I did was rest. My constipation problems haven't ever given me this type of discomfort so I'm not sure if it's the intestines actually starting to heal more. Any suggestions or related experiences? Thanks!
  6. Hi, I gave up gluten five years ago and have gradually been learning how to avoid cross contamination. Five months ago I started to get gluten reactions back to back and have only twice made it through two weeks without an obvious gluten reaction. I haven't been able to tolerate gluten free bread for a couple of years and recently went grain free which I believe helps. However, I have still been getting glutened up to twice a week. For instance, from airborne gluten (driving through a wheat field that was being harvested and walking past the air vent of an industrial sized bakery) and last night I got sick from cooking in my oven which had had a pizza cooked in it by my family - a rookie error, I know. I have finally got an agreement that my family won't use the oven for gluten and won't eat bread in the house, just cereal but this last one was the straw that broke the camel's back. I am losing hope that I will get a chance to heal. I live a few doors away from a Papa John's and on the other side is a pub kitchen. I just CANNOT face eating any more because I spend all day cooking from scratch vegetables, fruit, meat (I react to beans/eggs/soy and need to do a dairy challenge) but I am CONSTANTLY ill. I am even scared today to breath outside my house because of the Papa John! I have a young baby to care for and it's sunny outside but I am too weak, tired and depressed to do anything. Is there any hope for a (potentially) super sensitive. P.S. I am not diagnosed as I didn't know about celiac or NCGS etc when I gave it up. I am working with a dietician who very much approved of the range of nutrients I was getting, understands gluten etc. She wants us to find a way to get a kind of diagnosis and I am grateful but I know that I am on my own really because I have to be able to manage my environment. Have any super sensitives managed to go for any length of time without being glutened?
  7. Celiac.com 02/17/2015 - Homemade bone broth is a great foundation for a healthy diet, and helps to promote gut healing, and overall health. Simmering animal bones and marrow, feet, tendons, and ligaments in water for one or two days turns collagen into gelatin, and produces a rich complex soup of amino acids and highly absorbable minerals like calcium, magnesium, sulfur, silicon, phosphorus, along with trace minerals. For best results use organic pasture raised, or free-range chickens. Many commercially-raised chickens produce stock that does not gel properly. Ingredients: 1 whole free-range chicken or 2 to 3 pounds of bony chicken parts, such as backs, breastbones, necks and wings 2-4 chicken feet gizzards from one chicken 4 quarts cold water 2 tablespoons vinegar 1 large onion, coarsely chopped 2 carrots, peeled and coarsely chopped 3 celery stalks, with leaves, coarsely chopped 1 bunch flat parsley Directions: If you are using a whole chicken, cut off the wings and remove the neck, and the gizzards from the cavity. Cut chicken parts, including neck and wings, into several pieces. Place chicken or chicken pieces in a large stock pot with water, vinegar and all vegetables, except parsley. Let stand 30 minutes to 1 hour. Bring to a boil, and skim away any froth that rises to the top. Reduce heat, cover and simmer for at least 6 to 8 hours, and up to 24 hours. Longer simmering time makes richer and more flavorful broth. About 10 minutes before finishing the stock, add parsley. This is important, as is adds ionized minerals to the broth. Remove chicken carcass and any meat and bones with a slotted spoon. If using a whole chicken, let it cool and then strip the meat away. Keep the meat to use in other meals, such as chicken salad, casseroles, enchiladas. You can also add it to any soup you might make with the broth later on. Strain the stock into a large bowl and refrigerate until the fat rises to the top and hardens. Skim off fat and store the stock in covered containers in your refrigerator or freezer. Use broth liberally whenever a recipe calls for broth.
  8. I just wanted to share that I saw my GI today and got the results of my blood work from 2 weeks ago. All of my antibodies were in the normal range! Yeah...go me! My D was up to 45 which is awesome for me as I was deficient at diagnosis and my ferritin is better as well. I've been gluten free for just over a year and a half. Thanks for letting me share my excitement!
  9. Celiac.com 02/11/2015 - Broth is the new black. Read the food magazines and blogs and you will inevitably come upon an article about the benefits of broth. But, unlike so many health foods, broth is not an overhyped fad food. Broth can be digested by every body, and broth is healthy for everyone. For people with celiac disease or gluten-intolerance, broth can be part of a diet that promotes healing and wellness of the gut, the immune system, the bones and more. From baby to granny and from sickest to healthiest, broth has something for everyone. Ingredients: 4 pounds beef marrow and knuckle bones 3 pounds meaty rib or neck bones 4 or more quarts cold filtered water ½ cup cider vinegar 3 onions, coarsely chopped 3 carrots, coarsely chopped 3 celery stalks, coarsely chopped several sprigs of fresh thyme, tied together 1 teaspoon dried peppercorns, crushed l bunch flat parsley, chopped Directions: Place the knuckle and marrow bones into a very large pot with vinegar and cover with water. Let sit for one hour. Meanwhile, place the meaty bones in a roasting pan and brown at 350 degrees in the oven. When well browned, add to the pot along with the vegetables. Pour the fat out of the roasting pan, add cold water to the pan, set over a high flame and bring to a boil, stirring with a wooden spoon to loosen up coagulated juices. Add this liquid to the pot. Top with water, if needed, just enough to cover the bones. **NOTE: Remember to keep the liquid no higher than one inch below the rim of the pot, as the volume expands slightly during cooking. Bring pot to a boil. A large amount of frothy scum will rise to the top, and it is important to remove this with a spoon or mesh skimmer. After you have skimmed, reduce heat and add the thyme and crushed peppercorns. Simmer stock for at least 12 and as long as 72 hours. Just before finishing, add the parsley and simmer another 10 minutes. At this point, the broth will look more like a scary brown liquid with globs of gelatinous and fatty material. It won’t even smell very good. However, all you need to do is to strain it properly to get a delicious and nourishing clear broth that you can use for myriad soups and stews and other dishes. So, remove bones with tongs or a slotted spoon, and strain the stock through a sieve or mesh strainer and into a large bowl. Refrigerate the bowl and, once it’s cold, remove the hardened fat from the top. Transfer to smaller containers, and freeze for long-term storage.
  10. Celiac.com 02/24/2015 - I've posted recipes for chicken and beef broth lately, and now it's time for what may be the healthiest of all broths, fish broth. Naturally gluten-free fish broth offers a delicious way to promote gut health, and recovery from illness. Ideally, fish broth is made from the bones of sole or turbot. Unfortunately, it's hard to get whole sole fish in America. However, you can make a great broth using any non-oily fish, such as snapper, rock fish, or lingcod. Ask your fish merchant to save the carcasses for you. Avoid using oily fish such as salmon for making broth, mainly because oily fish will make the broth turn rancid during the long cooking process. Be sure to use the heads as well as the bodies, as the heads are especially rich in iodine and fat-soluble vitamins. Use the broth any time you make seafood-based stews, soups, or chowders. Ingredients: 3 or 5 whole carcasses, including heads, of non-oily fish such as sole, turbot, rockfish or snapper about 3 quarts cold filtered water 2 or 3 sprigs fresh thyme 2 or 3 sprigs parsley 2 onions, coarsely chopped ¼ cup dry sake, white wine or vermouth ⅓ cup vinegar Sea salt to taste Directions: Melt butter in a large stainless steel pot. Add the vegetables and cook very gently, about 30 minutes, until they are soft. Add wine and bring to a boil. Add the fish carcasses and cover with cold, filtered water. Add vinegar. Bring to a boil and skim off the scum and impurities as they rise to the top. Tie herbs together and add to the pot. Reduce heat, cover and simmer for at least 4 hours or as long as 24 hours. I usually cook it for about 12-24 hours. Remove carcasses with tongs or a slotted spoon and strain the liquid into pint-sized storage containers for refrigerator or freezer. Chill well in the refrigerator and remove any congealed fat before transferring to the freezer for long-term storage.
  11. Hi all. I am sorry if this gets long, but I have a story to tell and I think if I tell it to people that understand and relate I will feel a lot better emotionally. Even if no one reads anything this long. I remember having my first health problems my first day of second grade, that was 30 years ago. I had the worst headache and puked up my spaghetti on the principle's shoes. The first of many migraines. They started out just a few a year and then gradually increased to the point that my mom was taking me to a specialist. They swore up and down that childhood migraines were so rare and I didn't have them. How right they were. They just kept gradually getting worse and more frequent which then led to years and years of tests, ER visits for pain, hospital stays for intense vomiting. Those are they only symptoms I had until I was 17. At 17 I started getting stomach aches all the time, sometimes followed by vomiting, D or C ( either one depending on which one the gods felt I needed to go through) and intense pain. More doctors visits, more tests, more BS. You are constipated, you have IBS, you have a stomach virus, more BS. I learned to deal with it and quit frequenting the doctor so much. I was also breaking bones, some of them multiple times. Around 20, I started gaining weight. I have always been a little on the thin side, always had a low BMI, so when I gained 50 pound out of the blue I was concerned. I also started getting a tingly sensation in my arms and hands. Off to the doctor I go, more tests, more BS, yada, yada, yada. This time it was muscular, off to the physical therapists. Didn't work. Imagine that. After about three years of more testing to figure out why the physical therapy wasn't working, I started to get awful back pain. I also started to get weird reactions to food. My lips were swelling after eating, constant runny nose, rashes. Off to the allergist and off to a back specialist. More testing, more ah crap, you know the drill. The lip swelling cleared and no food allergies. Amazingly I wasn't tested for wheat. Fast forward a year and I end up pregnant with by boyfriend. I ended up with a tubal of one baby and a vaginal miscarriage of the other. Guess what, twins. I had to have surgery for the tubal. At this time I heard that on of my co-workers said " she just got her period late". They were fed up with all the missed work I had and thought I was making it all up. Hard things to swallow. A few months later I got pregnant again. This time the fetal heart tones were too low and I ended up getting a D&C after the heart tone was Zero. No late period this time. About six months later my migraines were getting progressively worse, I was getting about three a week some weeks. More testing, different doctors, and more BS. This time it Polycystic Ovarian Syndrome. Hormone replacement therapy. It didn't work. We then tried a ton of different rescue meds for when I get the migraines. None of them worked. HMMM. Then we tried medications for prevention. Some of them were anti-depressants cause "hey I'm depressed I just lost three babies". They didn't work, didn't help with the mood swings that I had attributed to the lost pregnancies. Mean while, I am planning a wedding with the man I was pregnant with. Two months before my wedding I found out I was pregnant. Sicker than a dog with morning sickness, hellacious migraines, swollen feet at two months ( was concerned, was blown off). I then started to have some other problems as my pregnancy progressed. I was having stomach pain all the time, racing heart, the vomiting never ceased, and awful heartburn. I was going to the doctor multiple times a week trying to figure out what was wrong. On March 28th 2003 I went to the ER because I wasn't feeling well at all. I had just been diagnosed with pneumonia a few days before and I have an awful migraine and just felt like over all poo. My aunt came and picked me up. When I opened the door she suggested that maybe I pack a bag. I guess I looked as bad as I felt, or worse. She thought I was going to die on the way to the hospital. When I got there, my blood pressure was 220/180. Doctors told me I was lucky I didn't stroke out and die. Was immediately admitted and treated for preeclampsia. They then induced me, which didn't work at all. It was three days of hell. On Monday morning March 31st 2003, I was rushed into emergency surgery because they couldn't pick up the babies heart rate and my blood pressure was sky high. They were running down the hall way trying to give me drugs on the way and then my blood pressure bottomed out. From what I heard, my daughter was born without a heart rate and not breathing, they had to resuscitate her. Glad I wasn't there for that. Also learned that my placenta was 80% dead. I woke up half a day later to learn I had a baby girl. Spent eight days in the hospital and almost died, but it was worth it. Fast forward four months, my milk dries up. No cause what so ever. I have also lost 60 pounds since the baby was born. But hey, I just had a baby. About five months later I couldn't walk up the stairs, I had profuse sweating, rapid heart rate, hair falling out. Then I couldn't even pick up my daughter. I was at work one night as a lab tech when I started asking my co-workers what they thought it would be. Everyone said thyroid. They drew my blood and off to test my TSH, T3, and FT4. Hell, I will be my own doctor now. Grave's disease. I went to the doctor the next morning, was told I had a huge goiter ( I some how never noticed it until it was pointed out), and my heart rate was through the roof. Was admitted to the hospital, was told I was hours away from a thyroid storm. Another close call with death. Get the radioactive iodine and things improve. UNTIL..... I am still dealing with the migraines, I am on FMLA at work so I can keep my job, and I find out I am pregnant again. My endo told me it would be impossible for me to get pregnant with my TSH so high. It was 80. We had a very hard time regulating my TSH. I had just switched hospitals, so I had a new doctor. He wanted to see me quite frequently for the first few months, they were good months. Until I hit 3 months. Migraines with auras four times a day. I had to go on bed rest. My son was born 2 months premature at 3 pounds 6 ounces and spent a month in the NICU, that was March 23rd 2005. My placenta was also very dead and there was almost no amniotic fluid. I am lucky they were monitoring me so close or my son would have died. My OBGYN actually bluntly told me he was going to die and then promptly left the room. She was fired that day. I lost my job due to missed work shortly after I had my son. Then came the year long struggle with nausea, awful pain under my ribs, no matter what I ate I felt like crap. It was an inactive gallbladder. More surgery. Felt a little better for a little while. Things from there just got worse. Weight fluctuations from one extreme to the next, the tingly sensation in my arms then went to my back and neck and was no longer tingly, it was painful. More testing, find a mediastinal ( I sure am glad I took all those medical terminology courses in school) mass surrounding my aorta. More testing. PET scans, CT's, referrals. The pulmonologist said it was a broncho-somthingerother cyst ( I am calling brain fog) and it needed to be removed. The surgeon he sent me to said that it would be to risky of a surgery and didn't think it was causing my pain. He referred me to Mayo. Back to another Pulmonologist. He tested me for everything under the sun, couldn't determine what the damn thing was. " It needs to come out". Off to the head of the Cardiothoracic department of Mayo Rochester. I am someone special now. He agreed, explained it would be an extensive surgery to get it out. They would have to make an incision from the front of my chest in-between my breasts, and loop down below the right and continue to the middle of my back. While they are explaining this to me he gets a call from the CT people and the thing has grown. It's Friday, we are going to do the surgery Monday. I go home, get my affairs in order, I am going to be in the ICU for a week and then in physical therapy for three before I can come home. I won't see my kids in a while. I am wheeled into the operating room Monday morning still awake. I look up to a gallery full of people, guess the surgery was a big deal and they wanted to watch. They were disappointed! They decided to do a small incision in my neck and look at it with a scope. The then sliced it up the middle and slid it out. I was in the hospital that morning for 7 hours and then filled full of drugs and sent on my way. I was back to work six days later. Lucky me. A month later I left my husband. Best thing I ever did. He saw all my sickness as a burden, was never supportive. I lost 30 pounds right away. Pretty soon, I was losing weight, sick all the time, tired all the time. More tests, more no answers. I lost another job due to missed work. Fast forward to January 30th 2014. I was very ill and in lots of pain so I went to the ER. Had a CT scan done, all that was noticed was an inflamed appendix. Did some labs, no increased WBC, no fever, no sign of infection. Sent home. Meanwhile, the brain fog is so bad I am starting to think I have early Alzheimer's. By the end of March I was so sick I had been to the doctor 8 times in a month. Someone finally sent me to GI. The admitted me to the hospital and schedule my endoscopy and labs for the next morning. I wasn't sure what they were testing for, I had just come out of the procedure when they told me. Sent me home, made an appointment for two weeks later. Diagnosed with Celiac on Monday April 7th 2014, they think I have had it since birth. My daughter was diagnosed a few weeks later, same with her. Had never heard of it. I was just so happy I had a diagnosis. My GI walked me through the beginnings, I read a lot on here, and I set myself to work. You know the drill. Two weeks ago, I was again seen in the ER. My appendix is still inflamed, still no elevated WBC or fever. Given anti-nausea meds, pain meds, told if the pain and vomiting get worse to come back. I'm back six hours later. They repeated all tests ( to make sure something didn't change in six hours), was ready to send me home again. I refused. Got my s$#&ty (literally, it was impacted with stool) appendix out two days later. That morning I had a colonoscopy and the surgery was a triple header ( they fixed a hernia that they had discovered during the CT's, my appendix out, and they explored my lower belly). Yay, more holes and scars. Since my diagnosis I have found out I also have diverticulosis, slow intestinal movement, osteoarthritis in my spine, an elevated ANA ( more testing to figure out why), and all the other related deficiencies that we like to have. To date I have lost 168 pounds and they just keep flying off. I have had three glutenings in the last two months ( accidental, I didn't go eat that blueberry donut I have been craving). I was at the doctor on Friday and had lost 6 pounds since my surgery ( went from taking three anti-nausea pills a day to three in two weeks) so I would say my surgery has been successful. I have been eating up a storm. My TSH is high so I should at least be leveled off on the losing. Went to the doctor Monday morning and had lost two more. My GI thinks there is something else going on. I have to keep a diary until July 8th of everything. What I eat, calories consumed, what I drink, when I poop, everything. Then if I have lost more than ten pounds on my next appointment, it's off to the hospital for more testing, nutritional therapy, more BS. Does it ever end? One good thing is I haven't had a migraine in over two month. Childhood migraines are really rare LMFAO I called my GP this morning to see if I could get on an anti-depressant, this is all too much to take. Well, it took a lot longer to write about thirty years than I thought it would. If you read this, Thank you for taking the time. I hope you didn't see too much of yourself in this. If you didn't read it, that's ok. I already feel a little better just getting it off my chest.
  12. learning2cope

    Things Are Going Well - Mostly. :d

    Well, since my last post things have really turned around in a good way. My mom is now on my side fully with going gluten-free. I feel so much better, though I am now having huge flare-ups of new and typical allergies, and also now having loose stool and gastro pain. I think it's my daily pills... I'm having issues with lactose still, gluten (of course), my tea tree organic castile soap (Dr. Bronner's Tea Tree Bar Soap), any shampoo (currently am using Mane and Tail), an organic body wash called 100% Pure White Peach Hydrating Body Wash which I used to be able to use to wash my face and now it causes an awful full-faced itchy, burning rash, and I'm sure other things which I can't think of at the moment. I take 40mg Lexapro daily for depression and anxiety. I have for about 10 years. Well all of a sudden on Thursday when I took all my pills in the afternoon I began having this awful panic attack - but it wasn't the kind where my brain is panicking - like "THE SKY IS FALLING" no, it's a body-only thing where my body gets super hot in the core and upper arms/legs and my hands and feet get freezing cold! and It's like there is a fire burning inside my torso. It's freaky and awful and I hate it! I eventually got over it mostly Thursday night and was finally able to fall asleep at about 4am. Then Friday afternoon I took only 2 Lexapro and no other medications. Same reaction, though not as severe. So I googled it and it seems it may be seretonin toxicity. Hmm. My gut may be healing - so it's absorbing more of the Lexapro - which makes my brain more saturated or whatever. So today I will only take 1 Lexapro (20mg) which is half dose. I'll see how I do tonight. I think I will take my blood pressure pill though. I do need that one. So, yeah, my body is freaking out severely and I have no idea why. Allergies, pain, rashes, panic attacks. I'm a walking mystery at this point. But hopefully I can get over these problems. *shrugs* I do see my allergist March 21st - this coming Friday. I will tell him everything that is going on and hopefully he can help me figure this out.
  13. Celiac.com 04/22/2014 - Blood tests are highly valuable for diagnosing celiac disease. However, their role in gauging mucosal healing in celiac children who have adopted gluten-free diets is unclear. A team of researchers recently set out to compare the performance of antibody tests in predicting small-intestinal mucosal status in diagnosis and follow-up of pediatric celiac disease. The research team included Edith Vécsei, Stephanie Steinwendner, Hubert Kogler, Albina Innerhofer, Karin Hammer, Oskar A Haas, Gabriele Amann, Andreas Chott, Harald Vogelsang, Regine Schoenlechner, Wolfgang Huf, and Andreas Vécsei. They are variously affiliated with the Clinical Department of Pathology and the Department of Internal Medicine III of the Division for Gastroenterology and Hepatology, the Center for Medical Physics and Biomedical Engineering, the Department of Pediatrics and Pediatric Gastroenterology of St. Anna Children's Hospital, all at Medical University Vienna, and with the Institute of Pathology and Microbiology, Wilhelminenspital in Vienna, and with the Department of Food Science and Technology, Institute of Food Technology, University of Natural Resources and Life Sciences in Vienna, Austria. The team conducted a prospective cohort study at a tertiary-care center, where 148 children received biopsies either for symptoms ± positive celiac disease antibodies (group A; n = 95) or following up celiac disease diagnosed ≥ 1 year before study enrollment (group B; n = 53). Using biopsy (Marsh ≥ 2) as the criterion standard, they calculated areas under ROC curves (AUCs) and likelihood-ratios to gauge the performance of antibody tests against tissue transglutaminase (TG2), deamidated gliadin peptide (DGP) and endomysium (EMA). They found that AUC values were higher when tests were used for celiac disease diagnosis compared with follow-up: 1 vs. 0.86 (P = 0.100) for TG2-IgA, 0.85 vs. 0.74 (P = 0.421) for TG2-IgG, 0.97 vs. 0.61 (P = 0.004) for DPG-IgA, and 0.99 vs. 0.88 (P = 0.053) for DPG-IgG, respectively. Empirical power was 85% for the DPG-IgA comparison, and on average 33% (range 13–43) for the non-significant comparisons. A total of 88.7% of group B children showed mucosal healing, at an average of 2.2 years after primary diagnosis. Only the negative likelihood-ratio of EMA was low enough (0.097) to effectively rule out persistent mucosal injury. However, out of 12 EMA-positive children with mucosal healing, 9 subsequently tested EMA-negative. Among the celiac disease antibodies examined, negative EMA most reliably predict mucosal healing. In general, however, antibody tests, especially DPG-IgA, are of limited value in predicting the mucosal status in the early years after celiac diagnosis, though they may do better over a longer time. Source: BMC Gastroenterology 2014, 14:28. doi:10.1186/1471-230X-14-28
  14. Hello everyone, I just want to share my story and see if it sounds like I have DH. I was never diagnosed by a dermatologist, this was a self-diagnosis, but I have many reasons to believe that I am right. I am a 25 year old caucasian female. I consumed gluten for most of my life until the age of 21 or so; then, I developed a weird lesion on my neck that would not go away. I tried different antibiotics, but nothing worked. Then, more lesions started popping up on my neck and then face. Sometimes they would form a line pattern, so I suspected sporotrichosis and took some antifungals, which helped at first, but then stopped helping. The lesions were huge, like the size of a dime, but they mostly hurt and leaked pus (sorry this is gross); however they did not look like boils (that I see on some DH pictures); I think they immediately came out as open sores, but of course I might have picked at them without realizing at the time (being on adderal did not improve things). Their center would be pretty hard and moist, and filled with what looked like granules of some sort. They never really itched (still do not itch); however, they do hurt/sting, rubbing them feels sorta good so I guess they do kinda itch (I am confused lol), but the one on my lip REALLY stings, if I start picking at it, tears would start flowing from my eyes involuntarily. It feels like a thousand pins in my lip. Also, after healing, they would leave a purple and white scar that would not go away and stand out against the rest of the skin; the ones on my face are actually idented sorta like cystic acne scars; the one on my nose is uneven and bumpy. Sometimes the scars would form a mini-blister that would be painful and unproductive to pop; sometimes they would form a pimple. I (mostly) do not eat gluten anymore except rare random exposure due to my forgetfulness or lack of food to eat (the other day I bought Rafaellos and ate a couple before realizing they do have some gluten in them; but I take Gluten Cutter, not sure if that works or not). So, anyways, to summarize: - The lesions do not exactly itch, but they definitely sting/burn, and it feels good to rub some of them (not my lip, that is too painful). - If I remember correctly, they never looked like blisters, and started with pretty large open sores. - If I get an outbreak now, it will start looking almost exactly like a pimple, but if I try to squeeze it, it is a painful, hard, watery blister with nothing coming out. It feels like there is a cluster of granules under the blister. Sometimes it starts as a brown, VERY TOUGH piece of tissue (a little crust that is almost impossible to rip off, later it falls off by itself and a regular crust forms). - The lesions leave scars that are either indented or discolored or both. Even the scars still feel kinda prickly and they never go away. - Cutting down on my gluten intake decreased the number and severity of outbreaks, but I still do get them from time to time. Right now my face does not look so good without make-up. The weirdest part: At some point I though I had Morgellons disease, and my lesions did look exactly like the Morgellons lesions with little "roots", etc; I was also finding fibers on my skin and even under my skin. I am not sure if I was losing my mind or what, but I even studied samples of my skin under microscope and found ingrown fibers, etc. Later those symptoms mysteriously vanished when I started cutting down on gluten intake. I am still not sure what it was. So can anyone relate to this? I am REALLY interested in your feedback! Thanks!
  15. Celiac.com 09/25/2013 - People with celiac disease have higher rates of lymphoproliferative malignancy. Currently, doctors just don't know whether risk levels are affected by the results of follow-up intestinal biopsy, performed to document mucosal healing. A team of researchers recently tried to find out if overall risk for lymphoproliferative malignancy in people with celiac disease is connected with levels of mucosal healing. The research team included Benjamin Lebwohl, MD, MS; Fredrik Granath, PhD; Anders Ekbom, MD, PhD; Karin E. Smedby, MD, PhD; Joseph A. Murray, MD; Alfred I. Neugut, MD, PhD; Peter H.R. Green, MD; and Jonas F. Ludvigsson, MD, PhD. The are variously affiliate with the Columbia University College of Physicians and Surgeons, New York, New York; Karolinska University Hospital and Karolinska Institutet, Stockholm, Sweden; Mayo Clinic College of Medicine, Rochester, Minnesota; and Örebro University Hospital, Örebro, Sweden. For their population-based cohort study, the team looked at data from all 28 pathology departments in Sweden. They evaluated at data for 7625 patients with celiac disease who received follow-up biopsy after initial diagnosis. Measurements: They used expected rates to assess risk for LPM, compared with that of the general population. They then used Cox regression to compare rates of LPM in patients with persistent villous atrophy against rates for patients with mucosal healing. Of the 7625 patients with celiac disease and follow-up biopsy, 3308 (43%) showed persistent villous atrophy. Overall risk levels for LPM were higher for celiac patients who had received biopsy (standardized incidence ratio [sIR], 2.81 [95% CI, 2.10 to 3.67]) than for the general population. LPM risk levels were higher for celiac patients with persistent villous atrophy (SIR, 3.78 [CI, 2.71 to 5.12]) than for those with mucosal healing (SIR, 1.50 [CI, 0.77 to 2.62]). Compared with mucosal healing, persistent villous atrophy was associated with an increased risk for LPM (hazard ratio , 2.26 [CI, 1.18 to 4.34]). Risk for T-cell lymphoma was higher (HR, 3.51 [CI, 0.75 to 16.34]), but not for B-cell lymphoma (HR, 0.97 [CI, 0.21 to 4.49]). One limitation of the study is that it gathered no data about patient adherence to a gluten-free diet. Higher risk for LPM in celiac disease is connected with follow-up biopsy results, with a higher risk among patients with persistent villous atrophy. Follow-up biopsy may be an effective way to classify celiac disease patients by risk for subsequent LPM. Source: Ann Intern Med. 2013;159(3):169-175. doi:10.7326/0003-4819-159-3-201308060-00006
  16. Hello, I recently just joined and find this forum to be very helpful. After two long years of all sorts of weird issues (joint pain, numbness and tingling, acid reflux) and thousands of dollars in medical bills with no answers for my symptoms turns out about 3 weeks ago monday my biopsy and blood test came back positive for Celiac Disease.. FINALLY looks like i may have an answer. Long story short my doctor is having me take Nutrametrix supplements ( ORAC, OPC-3, B-Complex, Might-a-mins, Aloe Vera Juice, and a Probiotic) To treat the nausea and burning sensation in my gut. Have any of you taken these supplements? Have they helped you? ORAC OPC-3 2x daily empty stomach Activated-B Complex Nutriclean Probiotic 2x daily before meals Might-a-mins after/or before meals or PRN (as needed) Aloe Juice natural flavor 2oz 4-5x as PRN
  17. background in case it's helpful to the vets or any with info: I always had an "irritable bowel" since a teen or as long as I can remember I was quite embarrassed by it too because of the degree of gas and bloating ...always a ton of gas and bloating I was always trying to go off to relieve it privately which really seemed all the time it was very hard as i had bad self esteem and felt quite helpless with such bad stomach problems, and a lot of D all the time but too long ago to remember the frequency. However I was eating disordered from age 12 to 26 in different varying ways. I am a low panic person so to me between my mother having an obviously messed up stomach gas and bloating/pain, my first daughter seeming to follow in our foot steps I chalked my issues up to what runs in the family, and my eating issues for so many years. I would go through such severe periods of restriction of calories and sugar that when i caved once and ate a huge bowl of pasta, my poor body couldn't handle so much food after such a long period of restriction and i had a lower GI bleed for 5 days off and on. Of course the last thing an ED person does is seek help lol. I was incredibly delivered from my ED in later 2006 and I love the freedom and love my natural weight when exercising and eating what i want when i want (5'7" 135-140..no matter how much i exercised my body loves this weight and I call it my natural healthy weight regardless of others etc usually this is a size 4-6 for me) in 2009 when bowel problems, bloating pain were getting to be a bit much and escalating and I was also starting to feel drained and malnourished, a feeling I knew WELL as an ED person. the memory, feeling groggy and hung over next day etc. I made a GI appointment In the meantime my cousin told me that some people can't tolerate wheat (not gluten) she's a healthy eater and advised me to try cutting wheat so i did at that point i was worried only 3 years from recovery I didn't want to find out the hard way if I could be triggered to go back to ED. I was 1-2 months wheat free when i had blood work done. the GI told me i had some levels of some antibody but not over a threshold to be celiac??? i had no knowledge and no idea if cutting wheat could affect it He said well you're just stuck with IBShe never advised more tests or cutting gluten. In his defense I'm not sure if I told him I had been wheat free..so considering my normal food I'm pretty sure i was consuming fairly low amounts of gluten I went back to eating whatever after his saying it wasn't a problem and it's just gotten progressively worse...as i said in another post the last year has been REALLY bad, and the last 6 months UNBEARABLE..D alternating with constipation every day, bloating to a preggo sized belly, the gas and the pain, so bad I have to breathe through it like labor and I am used to pain from my spinal cord A friend pointed out their other friend had EXACT issues also 32 yrs old, weight loss and everything i did and she found out it was celiac and finally gained weight and felt normal...i never even considered it as i typically blow off sickness. I have so many issues from my spine (neurogenic bladder atrophy and spasticity) that I try not to get hung up on recording symptoms as I want to hold onto an identity that's not all about being sock, i have enough sickness and try to find other parts of life to enjoy .I was told it would take months to get seen and tests done, and i was also told if I go gluten-free for those 2 months the tests will come back negative. So without a second thought i could not bear another 2 months if going gluten-free would help i didn't care i was desperate for relief (oh and I have been 10-15 poundds underweight for 2 years now despite 3000 calories a day) I also irrefutably am malnourished because i know that feeling. I tried probiotics, digestive enzymes, 3000 cals of healthy foods, supplements milkshakes and still i feel like i did on a 400 cal diet years ago. My question is is there any point in tests??? will they just come out negative at this point since going gluten-free maybe 1.5 months ago? i can't remember lol i am stunned!! i have not been doubled over (which was every day) I haven't had D since, no cramps, no bloating, very little gas copmaratively. I feel slightly clearer brain wise but not perfect I'm hoping the malnourished brain faog improves with more time but being a rookie I have no idea about whats normal time frame for symptoms resolvign I have goofed a couple-few times since gluten-free and WOW the reaction is violent and I only realize it after the fact as I have D all day the next day violent cramps a few hours after eating it, and pain lasts a day the gas bloating and D slowly setlled down and I would wake after gettign dosed, feeling like a train hit me after getting drunk the night before. It's so night and day Gluten vs gluten-free that there is no doubt in my mind lol. after recovering from ED I hate being restricted and never have will power to avoid foods but i think i was so so ill i never want to go near gluten So is it worth seeing a doc? are there tests that would even show anything? by the time I see one it'll have been 4 months gluten-free and I have issues with many docs after going through hell and back again with my DX for my spine I spent 8 months being treated like crap, muscles wasting and twitching and they'd say stupid things like it was my achilles heel (serious) and ADHD amplified into my body (huh?) finally someone did and MRI and thankfully the syrinx was there clear as day but it took almost a year of watching my body waste away from the neck down and unreal pain and muscles cramping and spastic before the atrophy, a year of begging for help to get taken seriously. I don't want to go through that all over again if I don't need to. So i was curious if it truly matters? if it is enough that the gluten-free trial is irrefutably the first thing in as long as I can remember that has helped the bloating/gas and D, and I gained weight!!! haha I've been trying for years so it was exciting to think I might even get my booty back ;p if anyone has thoughts i'd love to hear I don't even know all of the tests they can do etc. This is all very new to me and I didn't want to read too much on the web while trying gluten-free because i didn't want to taint my observations of the effects, ie see things that weren't there from reading about it. How long does it take to really feel good, sometimes i get worried I still have some groggy head, malnourished feelings after a month and a half but i wondered if maybe it takes more time...on a diff thread about coffee I know many said it takes time for the gut to heal so i was curious how long it normal for what symptoms? Thanks a lot everyone. Now that I feel safe to let myself read up on it I am swimming in all this learning lol..it's worth it to me because of knowing how sick i can get now I think i have a handle on a lot of things, but some are still a little confusing to me so anything you have is likely helpful
  18. My daughter, diagnosed celiac in November, so gluten free nearly two months now, is having a hard time no matter what she eats. She has a tremendous amount of damage - seen on her endoscopy / colonoscopy - and her GI told us that it will take 6 months to a year for her body to heal. My question is what have are you taking to promote healing? I would like to add digestive enzymes, more probiotics (currently she eats yogurt and drinks kefir), and maybe Vitamin C in addition to the multivitamins she takes. What has worked for you? I can't stand watching her suffer after eating for a year! I know that we probably need to cut out the dairy, but she is very resistant to this. For those of you who have cut out milk, do you have an easier time with cheeses? I am open to suggestions and trying to learn -- all of this is still quite new to us.
  19. January 9, 1999 post by Ron Hoggan to the Celiac Listserv: Im posting this response to the list as this information may not be common knowledge in the celiac community, and perhaps it should be. There are a number of reports, regarding celiac patients, of coexisting intolerance to milk proteins. One recent report was of an investigation for cross reacting antibodies. They found none, but a number of these patients displayed antibodies against gliadin and parallel anticasein antibodies (1). Another group has indicated that 36% to 48% of celiac patients demonstrate antibody reactions to milk proteins (2), although there are some reports that the frequency of such sensitivities reduce with treatment of a gluten-free diet (3), although the latter publication reported a higher initial frequency of reactions to milk proteins. There is another report of one celiac patient thought to have refractory sprue who recovered with the additional dietary exclusion of egg, chicken, and tuna (4). The patient became very ill before the possibility of immune reactions to other dietary proteins was considered. These reports suggest to me that we need to be vigilant about the possibility of additional food sensitivities. Before leaping to the use of steroids, further antibody testing seems prudent. The therapeutic use of systemic steroids carries the potential for some very dangerous side effects. Dietary exclusion of allergenic proteins, on the other hand, is just an inconvenience, one that most of us are already well versed in. ELISA or similar testing ought to be done prior to beginning steroids, as such drugs may be unnecessary, or they may compromise the accuracy of such testing. Sources: Paranos S, et al. Lack of cross-reactivity between casein and gliadin in sera from coeliac disease patients. Int Arch Allergy Immunol. 1998 Oct;117(2):152-4. Volta U, et al. Antibodies to dietary antigens in coeliac disease. Scand J Gastroenterol. 1986 Oct;21(8):935-40. Scott H, et al. Immune response patterns in coeliac disease. Serum antibodies to dietary antigens measured by an enzyme linked immunosorbent assay (ELISA). Clin Exp Immunol. 1984 Jul;57(1):25-32. Baker AL, et al. Refractory sprue: recovery after removal of nongluten Dietary proteins. Ann Intern Med. 1978 Oct;89(4):505-8.