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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About Karrin

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  1. I was wondering if anyone has had a Jennie-O turkey recently or knows if they are gluten-free? It's on the menu tomorrow for Thanksgiving and I've not had much luck surfing their site. It's a regular frozen bird. They have everything else under the sun listed but their frozen poultry. Or I'm blind.
  2. I know how you feel in regards to feeling like a 'burden'. I went undiagnosed for years, nearly 5 of those I have been too sick too work and not knowing why. My poor husband has had to pick up all the slack and I feel awful about it. I'm very luck to have such an understanding man in my life. It can be extremely frustrating - the isolation and the complete lack of control over your own body. It's often like life is passing you by. If you are still getting sick all the time I would be a little concerned, especially with the extreme fatigue you say you are still experiencing. Sometimes people with autoimmune disease have overtaxed immune systems - that is our immune system is so worn out fighting our own body that the stress makes us very prone to illness. In my case I had other undiagnosed autoimmune conditions beside celiac sprue that failed to turn positive in blood tests, my doctor had to go off of my symptoms, many of which improved or went away with the gluten-free diet - but not all. I was still very sick 6 months into the diet. I'm now on prednisone and having a period of remission - the best I've felt in at least 5 years! So be on the lookout, know your own body and don't be afraid to pester your doctor about all your options if you are still concerned something isn't right. Don't settle! I hope you feel better! Here's hoping for a great 2010!
  3. Glutened Or Just Healing?

    It seems quite possible you were glutened - maybe by the spices put on the chicken, many contain wheat to make them stick - or maybe from a contaminated surface or where it was cooked, a shared spatula etc. I've had similar experiences going out to eat, been fine once and the next time there was a different chef who perhaps wasn't as careful. Now, I like to speak to the chef or whoever is preparing the food if possible. I've never been glutened this way. It is also possible you might still be healing, since it has only been two weeks, though I think the CC seems far more likely. I actually needed prednisone to help my gut heal, so I'm not as keen as others here on how usual or unusual your healing is progressing. Six months into the diet and I was actually worse than before I began. I think my situation is rare however.
  4. I have had thyroid panels done and they are always normal. I'm thinking it could have been the lack of food absorption that was causing it. It's a relief to hear your husband's story. It sounds very similar to my own and I wish I'd heard it earlier. I think it's important to get the word out to those of us who are suffering without result from the diet alone. I had no idea in some cases it wasn't enough. I've not been on the sterioids long but, like you said the improvement was dramatic. I could barely move I was so weak and less than 12 hours after my first dose I started to perk up. I'm able to eat now and actually digest my food. My skin is soft and the rashes I was getting are gone. Even my hair is shinier and isn't falling out like it was. Oh and the joint pain is gone - for the most part. I fear there has been permanent damage to my knee, fingers and wrists. The inflammation is all but gone except in one troublesome finger, my stomach is even looking flat. No more preggo belly! I have a waist! The best part is that I'm actually digesting food like a normal person - oh and my reynauld's is all but gone - and in late fall no less. My husband is actually the one trying to snuggle into ME for warmth! hah! And thank you! I will certainly pm you if anything unexpected pops up.
  5. Thanks, I'm hoping so too. So far this seems to be doing the trick, but if things turn around again I will go in for that endoscopy without delay. I'm in constant contact with my doctor and he's keeping a close eye on me. My stool turned normal only a day or so after going on the prednisone and the terrible nausea I was experiencing has gone away too. I'm also glad to hear that I'm not the only one who has needed the prednisone after going gluten free. As for my response to the diet, I was diagnosed at the very end of May and started the diet immediately (I just start counting from June since the dates are so close). I experienced relief most significantly during June - but was still weak. July and August were still okay, less energy, and September onward everything progressively went downhill. I was pregnant briefly during that time and wonder if that might have put me in a slight 'remission'. Interestingly though, minus the gnawing feeling in my stomach and nausea, my digestive issues were completely different this time. I was always constipated when I ate gluten, had the preggo belly and painful gas - none of these have returned since going gluten free. It was only about a month ago that I started passing undigested food and bright yellow stools, otherwise I was just exhausted/weak. I'm banking on the idea my gut probably was too severely damaged to repair itself on its own.
  6. I had a positive blood test for RA and celiac sprue - the only positive blood tests I have had. The reason I feel I have something more than these two, maybe refractory sprue, is due to my continuing digestive issues - which are now clearing up along with all my other problems with the prednisone. I have not had any endoscopies to verify this however, and don't really want to unless necessary. My years of illness and inability to work have left my husband and I in debt over medical bills. If my digestive issues do return though, I will have to have one to rule out cancers or other bad stuff. I would like to exhaust the least invasive options first though and so far this one is working.
  7. My only official diagnosises are celiac, ra, endometriosis and reynaulds. I do believe I have another autoimmune disease however. I was receiving no relief from the diet except in my first few weeks. My digestive symptoms were also atypical for me - before going gluten free I was chronically constipated and was inflated like a balloon. For me the prednisone is worth it for my RA alone. I'm very sorry I did not start it earlier. I was too afraid of all the side effects I read about and in the meantime my RA really took a bad toll on my joints. My fingers are slightly deformed, hands weak, and my right knee makes it hard to climb stairs. I was also using my celiac symtoms (joint pain/swelling) as an excuse for the damage and hoping the diet would clear it up. Bad mistake. Perhaps my other symptoms might have cleared up after a year or more on the diet alone, however I was and am not willing to take that chance. The last 2-3 months my health had taken a new turn for the worse. I was as bad, if not worse than before starting the diet in June - worse than I have ever been. I really think I was heading for disaster. I was not digesting any of my food - it was all passing through - solid. I must stress my diet has been all whole organic foods - avoiding things like nuts, eggs etc just in case. I've been taking supplements, but I doubt I was absorbing any if I wasn't digesting food. Whatever was going on it has stopped. My stools are normal -solid and brown for once! - and the nausea is gone alone with all my other symptoms. It makes me suspect refractory sprue, which I've read does not clear up with diet alone. It needs help to get there. I've also put on a bit of healthy weight finally! The dose I'm on is also not nearly as high as some of what I've been reading in this thread. My doctor actually just reduced it. I am on 15mg a day. My side effects have all but disappeared with the lower dose (I was on 20 before). I can not imagine 50.
  8. Oh it didn't at all and I didn't mean to imply you were in any way demonizing its use! My reply was a general one to anyone who might stumble upon this thread that is not feeling any relief. I think you are absolutely right to caution others and I was trying to do the same, but wanted to make sure they also understood that it had helped me tremendously and not to fear bringing up the option to their doctor it if they were still sick with no other explanations. I have and I am sure most people who come here have known their fair share of 'brush you by' doctors - or might not realize they have one. Very dangerous! I was simply afraid that others might stumble upon this thread and assume the treatment is always worse than the sickness, overlooking possible benefits as I once did (or think it was a way to cheat the diet). I am a big chicken and have always hated the idea of taking medicine, even tylenol, so I know how scary it can be to take that little leap! ;p I was trying to help inform as well, in my own clumsy little way.
  9. I understand it is no ones intention to frighten me off this medication, but to educate. However, I do think anyone stumbling upon this thread that is not feeling any relief from the diet alone might read this and freak. I know I did after stumbling on some older threads on this site regarding prednisone. We read the side effects and think the worst. We think, oh no, do I want to take such a powerful medicine for life and how will it effect me? Until recently (like celiac disease) I had no awareness of refractory sprue, which does not clear up with the diet alone. If you think celiac disease is unheard of try getting answers on refractory sprue! Many of us also suffer with other serious autoimmune diseases that go undetected by blood tests alone. For us prednisone is a godsend and worth a look into. I was terrified of the idea of taking it before, but it has already changed my life 180. The worst side effects I have experienced thus far are a bit of sleeplessness now and then (even then I have energy to spare the next day) and a slight increase in appetite in the beginning, which has tapered off and is easily controlled by eating healthily - not hard to do when you're already on a gluten free diet. Everyone's body is different and not everyone reacts to medication the exact same way. Prednisone isn't and shouldn't be a forever thing, it is only taken to control flares. I can assure everyone that I would not, nor would my doctor - a man I trust implicitly after years of bad doctors - be taking this drug lightly. Nor am I cheating on my diet in any way, or should anyone use this as a cheat with celiac sprue - I simply was receiving very sporadic relief from the diet at first and the last 3 months + not at all. I am aware of the possible side effects and dangers of abruptly stopping - as should EVERYONE who takes this drug! Make sure you trust your doctor and have a good rapport. Consequences or none, I personally refuse to live out my life from bed anymore. Honestly, even the worst side effects are NOT guaranteed for everyone, but even if I get every last one I do not care at this point. If it buys me even a year of a real life, even at half the energy of a normal, healthy person I will be happy. I pray this medicine isn't one I will have to take for life, of course, but probably will at the very least on and off to control flare ups due to my RA and whatever this other condition is that is making me so ill/weak. My bones grind together painfully in my wrists and knee and I'm terribly sorry I waited so long to begin the prednisone. I could have prevented some serious joint damage that I now have to live with. But for celiacs who do not receive any relief from the diet alone and have ruled out CC, allergies etc, I think living with the continuing symptoms of celiac disease is insanity. Refractory sprue is something serious that must be looked into as well as other autoimmune diseases which can closely mimic one anothers symptoms. If you are still not feeling better - be proactive! Just because you have been diagnosed with celiac disease does not mean it is the only thing wrong with you.
  10. I'm curious about a few fertility studies I've stumbled upon online. My husband and I have been trying to get pregnant for 5 years, after going gluten free (blood test confirmed celiac disease) I unexpectedly conceived in June but miscarried (we'd given up it was possible). I've suspected in the past I was getting pregnant, but losing the pregnancies before they had a chance to progress to the point of dectection. A long story short, I have other autoimmune problems and have just begun prednisone and am finally feeling GREAT! (YAY!!!) I've read prednisone has helped women with autoimmune problems (who've had infertility/miscarriages) - sometimes using heparin or aspirin in conjunction with the predisone. I'd love to hear from anyone whose done this and if they had any success. I'm going in to see my gyn this Monday. My rheumatologist has told me it 'might' help my case. Here's hoping! For anyone curious here are two links I stumbled on with some info on the treatments:
  11. I was diagnosed with celiac sprue back in June and felt some relief after switching to the diet (yes I am very strict and I have ruled out CC's/other allergies). Many symptoms never went away completely - only sort of fade in and out -, and about September all my symptoms started coming back with a vengeance - minus the constipation and trapped gas which were the worst of most my celiac problems. I had a positive test for RA, but on top of the debilitating weakness and fatigue I was still getting rashes on my face, hair was falling out, reynaulds, brain fog, and I was passing undigested food, nausea, short of breath...etc. I recently started predisone and I have never felt better. Minus a slight bit of insomnia I feel absolutely amazing. I have a lot of my energy back, my reynaulds is gone, joint pain and swelling is gone, no more brain fog, and my stools are returning to normal. My skin is also 'young' again. I just turned 27, but when I'd get sick I got large backs under my eyes, the rash and even the texture of my skin looked old. Except for celiac sprue, my blood tests are always negative for other autoimmune, thyroid etc diseases. I was wondering if anyone else here has had this problem? Anyone with refractory sprue? Or lupus? I can't find much info on refractory sprue, but I think it might explain some of my digestive issues that only now are clearing up with the prednisone. Can lupus cause digestive issues too?
  12. I have had similar problems with family members not understanding the smallest drop of gluten hurts (despite every effort to explain I still get, 'oh just a bite of stuffing') - and that it hurts beyond an upset stomach, it absolutely debilitates me for weeks. They can't seem to wrap their heads around the fact it isn't an allergy let alone what an autoimmune disease is like. The sad thing is I've seen in a lot of newsclippings and articles it referred to as such - and people tend to think of sniffles when they hear allergy, sadly. Celiac disease is grossly misunderstood and not nearly enough is knowledge has been taught to doctors yet. I too received no help from the gastroenterologist I was referred to. What people did before the invention of this forum or internet is beyond me. I'd never have gotten well.
  13. I've read a lot on it as well. There have been a few times inflamation was mentioned. My periods have always been clockwork - different than your situation. My husband and I had been trying for roughly 5 years to conceive and less than 2 weeks gluten free I discovered I was pregnant. I did end up miscarrying shortly afterward. But I do tend to agree with the hypothesis that for whatever reason I was probably conceiving prior to starting the diet but losing them before it ever progressed enough to be noticed. I just stumbled upon an interesting bit of info the other day while researching side effects of prednisone (my doctor just started me on it - we have been suspecting other immune related disorders like RA and lupus). I plan on bringing it up to my doctor on my next appointment. Aspirin/Heparin/Prednisone The use of heparin, baby aspirin, and prednisone may be suggested to help you achieve or maintain a pregnancy. Although there is little published evidence on the benefit of these medications (except in cases of recurrent spontaneous miscarriage and pregnancy complicated by preeclampsia), the premise is that the unexplained infertile woman may actually be able to achieve fertilization and embryo development but the embryo fails to implant. In that sense, they are having very early miscarriages. There are many theories on why this occurs: lack of blocking antibodies, the presence of autoimmune disorders that activate the immune system to over-respond and injure the pregnancy, the prevalence of silent hyperclotting states. We believe that patients with endometriosis, salpingitis isthmica nodosa, Hashimoto's thyroiditis, Raynaud's disease, lupus, rheumatoid arthritis, and other autoimmune disorders may initiate a response that makes a woman's blood more likely to over-clot. In infertile patients, blood flow in the ovary and uterine lining/endometrium is predictive of outcome. In other words, the ability of the endometrial to develop adequately to support a pregnancy determines whether or not the pregnancy will be successful. The use of low dose aspirin pre-conceptually (cycle day three and on) has improved pregnancy outcomes. Dr. Alan Beer, Chicago, has published improved pregnancy rates among women who suffer recurrent miscarriages using heparin, also starting on cycle day three. Infertility is associated with higher perinatal morbidity and mortality: three fold risk of stillbirth, five fold risk of preeclampsia, four fold risk of miscarriage, two fold risk of pre-term labor, and increased risk of intrauterine growth retardation. Current literature is beginning to pose associations of these complications with increased clotting and fibrin formation. Since 1993 we have suggested that the invariance among all these things may be fibrin deposition with vessel spasm and abnormalities in implantation and development of the placenta. This means there may be a hidden clotting disorder (s) that is unmasked during pregnancy and interferes with the maternal-fetal interchange. Excessive fibrin deposition is the most common finding of the placenta in these situations. If soluble fibrin monomer (SFM) in a non-pregnant state is greater than 40, the risk of stillbirth is 5%. In our experience of 8 patients who had SFM greater than 100, 6 achieved pregnancy and 4 of the 6 delivered babies between 30 and 34 weeks. Recent literature shows a direct connection with polycystic ovarian syndrome, insulin resistance, and increased net clotting. The defect, a deficient anti-clotting mechanism, makes normal clotting a problem. The end result is an elevated fibrin deposition. (A scab is made of fibrin.) It is our belief that elevated fibrin is also associated with many abnormal reproductive states. Over the past few years, there has been much interest focused on the role of nitric oxide (NO) as an enhancer of uterine blood flow as well as a mediator of blood vessel smooth muscle dilation in other areas of the body. Heparin increases nitric oxide that in turn leads to improved blood flow throughout the body: Hands are warmer and less blotchy and most of the thin endometrial linings we see improve. Because we have seen a significant number of women with defined clotting problems, heparin appears to address the clotting issues as well as the vessel spasm issues and improve pregnancy outcomes. Other medications that may produce increased nitric oxide formation include Viagra and calcium channel blockers (used to treat high blood pressure). Heparin, a naturally occurring substance produced from our blood vessels, helps maintain the blood flowing as a liquid. Given by injection (subcutaneous or intravenous), it is a large molecule that does not pass through the placenta. Excessive amounts of heparin, however, will prevent blood from clotting that can lead to bleeding. For this reason, heparin doses are monitored through blood tests (prothrombin time, or, PTT) drawn four to six hours after the morning dose and carefully titrated to keep your PTT slightly above normal. Short-term use of heparin is considered safe. Long-term heparin use, however, is associated with increased bone loss. Pregnancy is a bone-losing situation and heparin adds to that loss. As a result, the risk of a bone fracture is thought to be as high as 15%. The fracture could be as slight as a stress fracture in the hand or foot or as significant as a vertebral crush fracture as seen in elderly postmenopausal women. Unfortunately, taking calcium does not appear to reverse that effect. Another risk associated with long-term heparin use is a drop in circulating platelets. Platelets help initiate the blood clotting mechanism that blocks small holes in the vessel walls. If platelet counts drop, heparin will have to be discontinued and another medication considered. A drop in platelets, called thrombocytopenia, occurs in 1-3% of the patients on long-term heparin therapy and most often resolves spontaneously once the heparin has been discontinued. Heparin can also cause bruises and wheals to form at the site of the injection and an infection can develop if the injections are not done using aseptic technique. A daily baby aspirin has been shown to be effective in several disease states during pregnancy including preeclampsia and recurrent miscarriage associated with antiphospholipid antibodies. Aspirin, in conjunction with heparin, is used to treat women who have
  14. Gluten Free Poll

    How many years have you been trying to live a gluten-free life? Started June 2009 How often or many times do you think you've been hit with wheat? Probably once a month in small cc'd doses. Anyone been diagnosed with cancer, kidney or liver problems? Just got over a kidney infection. Have you ever said "what the hell" and just ate something you aren't supposed to? Yes, homemade pumpkin custard that I suspected might have been cc'd. What is your age? 27
  15. I suspect I had a sensitivity to it through my teen years. I was lethargic a lot and had periods of time where I would gain a lot of weight and then suddenly my appetite would disappear and I'd drop it all, becoming a bit scary skinny. I had a lot of head fog too as well as bouts of constipation/diarrhea. I have enamel missing too that started in my teens. It was only in my early twenties that everything became a million times worse. I'd never heard or thought back to how certain foods made my appetite increase, but I do remember going through boxes of mac and cheese and, later after I changed to a mostly veggie diet, becoming ravenous - after eating apples in particular!