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Found 9 results

  1. WHAT IS CELIAC DISEASE? Celiac disease is an autoimmune condition that affects around 1.4% of the population (91.2 million people worldwide, and 3.9 million in the U.S.A.). People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems. Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases. Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. CLASSIC CELIAC DISEASE SYMPTOMS Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others. LESS OBVIOUS SYMPTOMS Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important. NO SYMPTOMS Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. CELIAC DISEASE VS. GLUTEN INTOLERANCE Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS) Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there. There are four main differences between celiac disease and non-celiac gluten sensitivity: No Hereditary Link in NCGS Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary. No Connection with Celiac-related Disorders Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption. WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)? IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS. To add more confusion, many cases of IBS are, in fact, celiac disease in disguise. That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS. Crohn’s Disease and celiac disease share many common symptoms, though causes are different. In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis. Crohn’s treatment consists of changes to diet and possible surgery. Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection. Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS Diagnosis of celiac disease can be difficult. Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult. Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis. TESTING There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis. Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products. BIOPSY Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide. WHY A GLUTEN-FREE DIET? Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years. For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease. WHAT ABOUT ENZYMES, VACCINES, ETC.? There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease. There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes. Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement. ASSOCIATED DISEASES The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions: Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include: Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers: Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES: Global Prevalence of Celiac Disease: Systematic Review and Meta-analysis. Clinical Gastroenterology and Hepatology 2018;16:823–836 Celiac Disease Center, Columbia University Gluten Intolerance Group National Institutes of Health U.S. National Library of Medicine Mayo Clinic University of Chicago Celiac Disease Center
  2. Hello, I'm hoping some of you can provide me with some insight here. I don't always react to gluten but I do enough of the time to give me pause. Several years ago I had migraine headaches almost daily. I went on a diet for weight loss but it turned out that the migraines went away within 3 days. I looked at the ingredients of the diet products and the only thing I could figure was that all the products were gluten-free/almost gluten-free. After being on the diet for a week and a half, I ate one slice of white bread. Half an hour later, I felt like someone took a sledgehammer to my head. I went gluten free for 2 months. Tried to reintroduce it and it didn't work. Tried again after 2 months and for some reason, I didn't have a reaction again. And the migraines never returned. Fast forward to now and I've been eating gluten since then. I had gastro issues on and off for years (gas, diarrhea, stomach pain, nausea) but they got much worse this past year. So I looked up the symptoms of gluten intolerance and celiac and I have all of them. The only one that didn't fit for celiac was that I've always been heavy, although I've read some people can still be heavy and have celiac. Other symptoms I've had include stomach pain, fogginess, vomiting, constipation. I also have severe depression which I read can be linked to gluten either because of celiac or even IBS. I read that in studies they found that people with depression and IBS get better not eating gluten anymore, even if they don't have celiac. I went gluten free again for about 2 weeks. Two days ago, I ate a few mini donuts and couldn't eat all day after that. The pain in my stomach was horrible, just under my breasts. Yesterday, after eating half a frozen dinner that was a breaded product, I threw up twice and crawled into bed for several hours. My head was foggy and I felt like I was drugged. My limbs felt heavy. I had knee pain really bad. No injury there but the ligaments are tight and sore sometimes. Just never that bad before. At lunch today, I ate three bites of a turkey sandwich. I almost threw up. I stopped eating it. For dinner, I ate cheesy bread from dominos. The only reaction was my knee started to hurt again but not nearly as bad as yesterday. I see my doc for bloodwork in a few weeks and want to ask for the celiac test. I ate gluten products 4 times over the last 2 week, once being today. Yesterday was the worst reaction. I was trying to narrow it down and everything that has caused a bad reaction has gluten. I've been eating dairy, eggs, and nuts but subtracted just gluten and had no problems. When I reintroduce bread products and stuff with gluten, I feel awful. But it doesn't happen every time. It seems that when I reintroduce gluten it gets bad for a day or so. Then the symptoms ease up and I feel "normal." But I know that continuing to eat stuff with gluten in it will bring back the problems in the long term. Am I right in thinking that my body is literally trying to readjust from my abstinence from it and that's why I didn't react with dinner? Could it be something else that I'm eating that's the problem but am eliminating it and not realizing it when I go gluten free? I know you guys aren't doctors. But tbh, I don't always trust doctors. Doctors have screwed me over in the past. I had a back condition that took over 2 years to treat due to several misdiagnoses and one doc almost killed me with a medicine interaction that she had every reason to catch. So I want to go into the doc appointment with as much info as possible. Thanks for taking the time to read all this. Sorry it's so longwinded but I don't really know anyone who can help.
  3. Hi Everyone- I went to my doctor recently and had my second Celiac blood test. I have been gluten free for about 9 months now. My first test was "inconclusive" because of a low IgA. My second test is negative- but again, Im gluten free now. My doctor does not want me to have to eat gluten again for a months, so he suggested ELISA/ACT Lymphocyte reactivity testing. Has anyone ever heard of this? Its a blood test that tests my white blood cells reactivity to MANY foods and chemical additivies- gluten /wheat being one of them. The test is fairly easy, though I have to go off all antihistamines for 4 days, and for 2 days, I have to consume/use NO chemicals- so no body lotion, hair conditioner, make up, etc. The test also is not covered by insurance, so there is a cost I have to consider. Wondering if anyone had heard of this kind of testing, or better yet had any experience with it? I really do want a true diagnosis as I am getting married soon, and we are talking about children and I want to know what Im dealing with before I go down that road. But.... Im pretty convinced be it celiac or intolerance, my body doesnt like gluten - so I dont want to have to eat it to find out!! Thanks !! RNRN
  4. I recently became aware that I have been Gluten Intolerant. I began immediately eating gluten-free even though it's a large learning curve, and I fail often to eliminate gluten from my diet. This results in symptoms such as swelling of the belly, joint pain, anxiety, almost within 30 min or less, then other times I will have Migraines, foot pain, diarrhea gas and bloating. Recently, The symptoms are more pronounced and come much faster than when I first found out I was intolerant. The bottom line, I would like a diagnosis whether or not I have the disease. If I have only been eating gluten-free since May (and that with Several mistakes) does anyone think I would have an accurate result either by blood tests or Endoscopy?
  5. Can anyone interpret these numbers? I got a genetic test from EnteroLab & this is what was sent back. I know they said I have one gene plus an additional gluten intolerance gene. My mom has severe celiacs. Plus I was off gluten when I did this test. But i'm curious about the numbers. I'v tried to understand them but there's so many combinations with different meanings. Things are saying diabetes (my dad has type 1), autoimmune, celiacs.... HLA-DQB1 Molecular analysis, Allele 1* 03:02 HLA-DQB1 Molecular analysis, Allele 2* 02:02 Serologic equivalent: HLA-DQ 3,2 (Subtype 8,2)
  6. Hi there, Hoping to get some thoughts from others out there who are familiar with the range of symptoms and issues associated with celiac disease (or gluten intolerance). My story is sad and complicated, but basically starts with the fact that I'm 26 and have had 5 early miscarriages in the past year. Testing was inconclusive, until finally my RE found that I have an autoimmune thyroid condition (anti-thyroid antibodies/hashimotos). He started me on a low dose of synthroid to boost me up (even though my current TSH is considered "normal". Anyways, in reading more about autoimmune thyroid conditions, I found out that they are highly related to celiac disease and that they can also respond to a gluten-free diet. So I decided to go gluten-free because, well, at this point I'm willing to try anything to be able to have a healthy baby. After doing all this reading, I've done done more reflecting and an convinced I have done kind of gluten intolerance issue. I did blood testing a couple of days after first deciding to try gluten-free, and the clinic said that should still be Ok for identifying the antibodies/tissue transglutaminase). I'll find out in January. Anyway, my symptoms include: - recurrent pregnancy loss (infertility) - thyroid autoimmunity - skin rashes (Not DH), possibly eczema or chronic hives - dairy intolerance developed in the last few years (this has *completely* improved since going gluten-free 2 weeks ago) - stomach gurgling, gas and bloating (also stopped on going gluten-free) - chronically loose, smelly stool (sorry TMI! But, my BMs have been completely normal on going gluten-free!) - grandmother recently told me my uncle "was celiac as a child but grew out if it" (right. ) It seems fairly compelling to ne, especially given my digestive improvements. I'm even thinking that if the blood test comes back negative, I might just stay gluten-free to see how it goes (with pregnancy, thyroid condition, digestive health, etc). What do you think? Thoughts, insights, or advice greatly appreciated! Thanks
  7. Hi all I'll give a little back ground...Like many people's stories here, I've been having life long issues that peaked last year (I'm 36) with a very painful blister rash on my face and scalp, digestive problems, brain fog...and all the rest of it. After 9 months of it all, a GP asked about celiacs, I'd never heard of it but looked into it, thought it made sense so went gluten free and then got referred for a blood test for it which, unsurprisingly, came back negative. In the 2 years prior to this, my diet was gluten light- other than treats and holidays when I would go all out and ALWAYS got very sick, which I thought was food poisoning. So, I discounted the blood test results as I hadn't ate enough gluten. After the negative blood test, my GP was a dead end so I decided to try a strictly gluten-free diet as an experiment and it was the only thing that cleared up my skin and about 90% of my other symptoms. I continued to get some occasional random extreme bloating with extreme fatigue- about once a week or 2 weeks. I then went back to my GP and explained this and was referred to Gastro- 7 months later I saw the consultant and was referred for testing- stool, bloods and endoscopy as well as a lactose test. He said he was testing for crohns (I have family history) and celiacs. It's now 6 weeks before my endoscopy so I started my gluten challenge last night. The build up to this has been immense. It's almost been a year now of thinking I may have celics and 10 months of gluten-free. I've been keeping a list of all the foods I've wanted to try, preparing my work for possible sick leave, telling my husband and friends what to expect and I'd even preprepared a 'lounge wear' wardrobe for my sick brain fogged self just in case I was struggling that bad. Last night it all started, I had a pizza and beer and a yum yum (like a doughnut). Oh wow, they were amazing and certainly better than I'd remembered, I actually felt a little emotional eating it! (so sorry to all the gluten-free-ers reading!!) I was then waiting on the after effects and totally expected to be bed bound today. BUT other than a racing heart rate last night and maybe feeling a little tired today, I FEEL FINE!!! Now, I don't want to have celiac disease but this is just confusing me! It's now been about 17 hours and surely I'd be feeling ill by now?!! Can anyone cast any light on what might be happening?
  8. Hello, I recently had blood work done and I'm a bit confused by the results and was hoping to see if anyone could help figure it out... I tested weak positive on TGG IgG but negative on everything else. My doctor says I need to go on a gluten free diet and I have celiac disease. Additionally, I had some blood work done at my allergy doctor a few weeks prior to this and have low IgA (IgA deficiency)...my level was 55 and it was supposed to be between 90 something and 400 something. I'm a little confused by the terminology. I read a couple articles that said having IgA deficiency can cause some of your celiac test results to be lower than they are or have a false negative. The doctor said people typically either are really low or really high, but don't usually result with a weak positive. "While it is rare, it is possible for patients to have a negative antibody test results and still have celiac disease. IgA deficiency is one example where this could occur. Further medical evaluation is important for anyone who is still experiencing symptoms, to establish the diagnosis or to rule out celiac disease as a part of establishing another diagnosis." http://www.uchospitals.edu/pdf/uch_007935.pdf In addition to this I was diagnosed with Fibromyalgia at 16 years old (almost 32 now). I went to the doctor because I have not been treated for FMS for years and wanted to verify the diagnoses was correct as I've still had symptoms for many years. Out of the blood work that has been done I had low vitamin D and the weak positive on the IgG (plus the low IgA results). Is it normal to have only one positive out of the results? Any FMS - celiac connection? My typical symptoms - stomach issues, muscle/joint pain, headaches (migraines or in both eyes), tired...all the time, sleep issues, muscle cramps, etc. The doctor has not mentioned any further testing, but recommended following a gluten free diet. My results: GLIADIN AB, DEAMID. IgG 1.9 U/ML NEGATIVE U/ML <20 GLIADIN AB, DEAMID. IgA 1.7 U/ML NEGATIVE U/ML <20 TTG IgG [H] 6.2 U/ML WEAK POSITIVE U/ML 6-9 TTG IgA 0.6 U/ML NEGATIVE U/ML <4
  9. Hello. I am hoping to find (if nothing else!) some peace of mind here. I am a 33yo female with a history of hypothyroidism (x 10 years now.) Ever since my thyroid went bad, I've had some weird on and off chronic symptoms (mostly joint and muscle pain, indigestion and thinning hair) that have not been able to be explained, but also have only slightly improved since going on thyroid medication. Luckily, I have a great PCP and I am a nurse myself so I am confident Im on the right thyroid medication and its working for me. However over the past year, some other lovely symptoms have developed. The most irritating symptom is skin rashes- a mix between excema and possibly some dermatitis herpetaformis. Problem is, the dermatitis lesions are usually in my scalp, and of course NEVER around when I go see my doc or the derm, so I am self diagnosing. But although the break outs are infrequent, Im pretty sure they are DH and nothing else! The excema is constant, it never goes away now. The muscle pain, which had improved some a few years ago, is now back, and I have random swelling of my lymph nodes in my neck. The worst symptom which had recently developed was horrible diarrhea- ONLY at night (middle of the night, usually) with horrible stomach pain. The diarrhea was watery, sometimes oily, and only at night. After lots of trial and error (and googling!) I thought hey- Maybe this is a gluten issue. So I went to my doctor. My TTG/EMA were negative, however my IgA was low. Not horribly low- just about 10 points below normal. So my smart doctor reccomended a scope (colonoscopy or endo- not sure.) So I went to a GI guy. He was - well not great. I had randomly had a cat scan of my abdomen maybe 3 months before my visit, so he said, if my cat scan is negative, chances are nothing is wrong with my gut. Im probably just horribly constipated and thats why I get diarrhea at night!!?? He put me on massive amounts of fiber (um, hello, ask me about my diet- I eat tons of greens and fruit daily!) and then wanted me to do a big clean out (A FIVE DAY PREP) for a colonocopy. It never happened, because the meds he gave me for the prep had fake sweetners in them- I have been allergic to nutra sweet for as long as I can remember. (I told him that, too.) So, the scope was never done, and I've never gone back to that GI. I tried an elimination diet and was pretty sure it was the darn gluten. (sniff, tear, no more pasta for this italian girl.) I've been gluten free for about 4 months now. NO diarrhea at all. No belly pain at all. Joint pain is better. Havent had a DH lesion in awhile, though my excema is the same. So I am due to return to my primary doc this monday and I want to get tested again. However ,Im gluten free now, and the thought of eating gluten for WEEKS or MONTHS sounds so painful to me! I know- if you know your intolerant, why get tested? Just eat gluten free! Well, as a nurse I know that the immune response that comes with Celiac disease can be very dangerous. So, I would like to know how careful I need to be. I rarely go out to eat ,but when I do, I have not been asking about sauces/dressings. (I dont eat pasta or bread or breaded stuff, of course.) So - do I need to be that careful? Also, this May, I am getting married! We have talked about starting a family soon. For pregnancy- is it dangerous to not know your diagnosis? Can it make morning sickness/nausea/constipation while pregnant worse? Because Im concerned about all of that- I have family members with a history of hyperemsis- or not keeping anything down while pregnant. Would genetic testing be enough (so I can stay on my diet) and if so, how can I get that done? Of course, Im going to ask my doctor all these questions- but I thought I'd find some help (or peace of mind) in the experience others have had. I am new to this site, but it seems as though there is a wealth of information. Thanks everyone, and havea great weekend. RNRN