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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com 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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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Found 327 results

  1. You find a magic typewriter in an old musty box in the attic. It will allow you to write a message to yourself on the day that you found out you had celiac (or gluten sensitivity etc). You can include anything you've learned about yourself, handling celiac, good strategies for coping, how to deal with emotional issues, hostile reactions from friends and family, travel, work, dating. etc. You may not include details of who won the World Series / next weeks lottery numbers etc as this would break the space time continuum and the typewriter will give you a nasty shock if you even try it, so just keep to the celiac insights.
  2. Let my start by giving a brief summary of what I’ve been diagnosed with. Just over the past year I’ve been diagnosed with Celiac, EOE, lactose intolerance, soy allergy, tree nut allergy. Most recently diagnosed with Ulcerative Colitis. The Colitis came 8 months after having found out I had celiac. I have never had problems with gluten in my life. Dairy was something I had to eliminate because of the excrutiating stomach pains I would get from it. But I can have gluten any day and not have a problem. I was diagnosed with a biopsy and followed by bloodwork. But who’s to say that dairy wasn’t the cause? I just feel like the GI was very quick to jump on the diagnoses without fully understanding my medical history, prescriptions I’ve took in the past ie long term antibiotic use, accutance, and 7 years of constant NSAID use.
  3. I was inspired today for two reasons. (Sorry for the formatting) 1) my brother recently had an emergency that required hospitalization and two stents to be put in his heart. Every Hour Counts/Every Person Counts 2) this new research about Zika and the implementation gap/clinical delay in recognizing a disease in clinical setting. http://www.nejm.org/doi/full/10.1056/NEJMp1707273 AS someone who has had BOTH Celiac and Pellagra. I can tell you that it can be difficult to tell them apart sometimes (most times). In many respects they look like twin(s). Both have GI problems as a presenting symptom’s. Both have Skin Issues in their presentations (clinical appearance). Both can have dementia/neurology symptoms. SO you can see how easily one can be confused for the other? And often one twin (disease) is picked over the other. What does this have to do with Zika. Only this Quoting the New England Journal of Medicine from the article and applies here when contemplating any disease’s symptom’s. “Translational gaps are not unique to Zika; similar challenges exist throughout the health care system. According to several estimates, it takes an average of 17 years for research evidence to reach clinical practice. 2 One study showed that patients receive only about 55% of the recommended processes involved in medical care. 3” So let’s say. Today they find a miraculous cure for Celiac disease or NCGS. . . it would take on average 17 years for doctor’s in Clinical settings to apply these technique’s to eradicate new Celiac cases/disagnoses from occurring. Now in this hypothetical case (which doesn’t exist yet) it would take another 17 years on average for doctors if they knew today that Pellagra (which they don’t) can mimic Celiac disease in a Clinical setting. But one does exist (it is not hypothetical) – a cure for Pellagra exists today. It has in fact existed for 100+ years and still doctors don’t recognize it today. Every hour/patient matters. And why I have tried diligently to educate other Celiac’s of this maddening fact. In 2015 a medical association was established of Pellagra occurring in/with a Celiac diagnosis. http://pubs.sciepub.com/ijcd/3/1/6/ Quoting from section 3. Pellagra and Celiac disease in this ground breaking research. Pellagra and celiac disease “The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [38]. The skin manifestations in pellagra might have some additional etiologies, since multiple nutrient deficiencies are at the origin of the cutaneous manifestations in celiac disease. The following nutritional deficiencies inducing skin rashes, were describe in celiac disease: Zinc, Iron, Vitamin A, E, B12, niacin, folate, selenium and essential fatty acids [39, 40].” So if their (NEJM) timeline is correct. It will be 2032 at the earliest for the Clinical delay to catchup to research. As I mentioned earlier it has been 100+ years since doctors’ have seen Primary Pellagra in a Clinical setting. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ And it isn’t Primary Pellagra that is the problem here. It is a phenomen that is called Secondary Pellagra. It didn’t know what it was either. And I have studied the topic extensively. see this entertaining thread where SIBO girl, Captain NCGS and Pellagra boy are superheroes saving others from their respective disease's They are all superheroes in their own right in my mind (hat tip to you both) and good luck on your continued journeys. Now back to my updated blog post on the "clinical gap" that is so devastating. See this link from the doctor’s healthy press (Yes doctors have to look things up too) that explains the difference very well. https://www.doctorshealthpress.com/food-and-nutrition-articles/pellagra-vitamin-b3-deficiency-causes-symptoms-and-treatment/ I will quote for reference. 1. Primary Pellagra “This form of vitamin B3 deficiency is related to a lack of nutrition, such as not getting enough eggs, meat, seafood, or green vegetables in your diet. Alcoholism is often a factor with primary pellagra, for the reason highlighted above. 2. Secondary Pellagra Those who regularly consume sufficient amounts of vitamin B3 may still deal with this condition. Secondary pellagra is the result of improper absorption of the nutrient, whether as a whole or partially. This is observed with gastrointestinal diseases that do not accept the niacin.” (Celiac disease) It is me again pellagra and celiac posterboy. So now we know what else it (Celiac disease) could be? Now the question remains will it take another 17 years for the doctor’s to have you checked for it or for you to believe a Vitamin might help you? Now Pellagra (and other B-Vitamin diseases) can be tricky to diagnose. Because for some diseases there are not good/reliable “blood serum” test’s to confirm the clinical suspicions. A cause and effect method is often used. If taken the B-Vitamin (NIACIANMIDE) helps your GI problems then Pellagra or at least Secondary Pellagra was a contributing factor in your GI problems. Dr. Prousky tested this theory. You guessed it almost 17 years ago. Next year will be 17 years and still this modern research has not trickled down to a Clinical setting. http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm And why I have been inspired to share my Celiac story of the road not taken. The Pellaga road was not taken in my diagnosis either. The doctor's did not know this could be a valid reaction to NCGS or Celiac Disease. Knowledge is power. Now you have the knowledge to do different and probably better than you are doing now if Secondary or Rebound Pellagra is causing some of your same GI problems and this is making your original Celiac disease symptom's even worse. This is mostly for those still looking for answer's despite being gluten free for 2 or 3 years and are still having "control" issues or have become ultra sensitive to many more proteins (food allergens) like even Corn for example. Pellagra was first diagnosed with corn based food stuffs. And promptly forgotten years ago. See this great newspaper summary of how "Pellagra in the South" presented itself 75+ years ago. It is actually a fairly new article about this topic. Only a year old. And found it amazing that others (though few) still talk about it today. http://www.timesfreepress.com/news/life/entertainment/story/2016/jul/12/clif-cleaveland-pellagrand-history-south/375065/ But doctor's haven't yet figured out that Rebound/Secondary Pellagra is estimated to occur in 58% (majority) of first diagnosed NCGS or Celiac patients. If the normal clincal adoption curve applies here then it will be another 15 year before doctor's acknowledge that indeed the corn allergy occuring in Celiac's is really from Secondary Pellagra. You have probably heard this phrase there is a "generation gap" . . . well if the trend holds in clincial adoptation and bleeding/leading research then indeed it will be another "generation" before this "Clincial Gap" will be closed. Then and only then will people begin to listen and get better . . .And I hate that for those still suffering . . . because every hour/patient/person matters. ****this is not meant to bee medical advice only the path I took. Yours might be different. But there is a 50/50 chance it might help. I don't know what else to say. With my changing life and farm responsibilities/realities I will not get to participate on this forum the way I once could so I wanted to say what happened to me with the hopes it might help those who might be still be suffering from rebound/Seconardary Pellagra triggerd by their NCGS/Celiac disease. You can rebound from Pellagra. I have praise bee to God! The Celiac diagnosis might still be retained if Secondary or Primary Pellgra was not the cause but if it (Pellagra) was the primary cause then the Secondary Celiac diagnoses/symptom's will improve with Niacinamide supplementation taken 2 to 3 times a day for 6 months I truly believe. I have emphasized the NIACINAMIDE form on my blog posts/in my threads because it is the non-flushing form of Niacin. see my earlier posterboy blog post for/on how to take Niacinamide FAQ and why you would want too. Or if you prefer you read this thread that talks' about Vitamin's and Mineral's role (or lack thereof role) on/in inflammation in the body. It focuses especially on how Magnesium and B-Vitamins can help depression. **** Again this in not medical advice. One size does not fit all. Some people do respond to supplementation. Some do not. You will only know if you try. . . . and sometimes you might have to try more than once to find the right form/Vitamin you need to take and why I have emphasized the Niacinamide form so you can learn from my mistakes! This is not the end of your journey. . . this is only beginning . . you will still want to supplement with the other (now) missing nutrients like Vitamin D (if you are low) or a good B-complex etc. and the Magnesium Citrate/Glycinate (mentioned in another thread) But I must end for now. I hope to update my blog sometime in the future (about the supplementation question and what helped me) but can't do so now. I would refer you to one of Ennis_Tx many post's on his supplementation program for now or one of Knitty Kitty's threads. They have both done very well with supplementation and are bedrock kind of people who can give you great advice learned from life's experience. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included posterboy by the grace of God,
  4. I recently took a blood test and went over the results with my GI doctor who will be performing and endoscopy and colonoscopy on me soon. I can't remember exactly what she said, but I believe she was talking about my IGA-TTG levels. She said the normal range was under 10 but mine was 639. I think she was talking about IGA-TTG but I'm not sure. For people who have done this test what were your high levels? Thanks! Female, 16
  5. I thought I'd throw this question out to the community. If you had a magic wand and could eradicate one commonly held misconception about either celiac, ncgs, or both, what would it be?
  6. Hello, I am a young man dealing with some Thyroid issues, along with some general digestive issues. A long time ago I was tested for Celiac disease via blood and was told I had it, but then had an endoscopy to confirm, and actually I got the results back, but I could never really decipher what they meant, so i just assumed I had it to be safe. I'm taking a much larger role in the control of my health now, and I deem it necessary to be less assumptive and to make sure I have concrete facts now. Under "Clinical History" Abdominal pain/bowel issues/Wt loss. R/O Celiac. Findings: Mild gastritis. EGD. Not sure what to make of that. Under "Final Pathologic Diagnosis" A. Duodenum Biopsy; Mature benign small bowel mucosa with a normal villous architecture. B. Stomach Biopsy; mild chronic gastritis, Helicobacter Immunoperoxidase stain is negative for Helicobacter organisms(Controls appropriate.) c. Esophagus Biopsy, Chronic Esophagitis with Rare Eosinophils. ------- If anyone can decipher and elaborate on any of this, I would appreciate it? Do I have Celiac disease? Anything else anyone notice to be relevant? Thank you!
  7. Denver area doctor

    I live near Denver, near the foothills and I'm looking for a Doctor that either specializes in Celiac or has the disease him or herself. That would be amazing. I have seen 3 different doctors who all sympathize and kind of understand the list of it, but by no means are fully understanding of this. I feel like I'm always telling them why I can't just take any medicine, or do this or that, or why I can't work in a bakery...this all stems from me having to do a lot of disability paperwork and never, ever having it filled out correctly. I was denied multiple times because of ignorance. I would really appreciate any help.
  8. Hello! Can anyone give me your opinion on my celiac test results? The nurse on the phone said everything looks okay, but I got a copy of the report and a few things were flagged! I am beyond confused and frustrated. I have been struggling over the last 2 years with TERRIBLE fatigue, headaches, joint pain, bloating, and constant stomach pain with weekly diarrhea. I've tested negative for RA as well as other autoimmune disorders. My doctor thinks I may have celiac and ordered a test, however I do not have a follow up appointment for another month. Here are my results: **IGM, QN, Serum: Ref Range (26-217); 270 (high) IGG, QN, Serum: Ref Range (600-1600); 961 IGA, QN, Serum: Ref Range (86-252); 248 **Deamidated Gliadin Abs, IGA: Ref Range (0-18); 20 (high) **Deamidated Gliadin Abs, IGG: Ref Range (0-18); 58 (high) tTG IGA: Ref Range (0-3); 2 tTG IGG: Ref Range (0-5); 1 Any insight at all will be greatly appreciated!
  9. Hello! I am new to this forum and i have few questions. First, when i go to school or to an resturant and eat there. What if it comes a very small portion of gluten like dust or something like that, and i eat that food will i die from it after a while? I eat in school everyday and once few weeks i eat out at resturants. Should i be worried? Second, Is there any people that have lived with this disease for like 80 years +, and still got "Glutened" once a while? I am super clean at home, my whole family have this under good control and everything. And i do not cheat. I always think that i will die, or get problems with my bones or starve to death. Or even get a poop bag. So Should i be worried? Btw, sorry for my English.
  10. Hi to any & all who read my post, and an advanced thank you to those who reply, My post may be kind of robust & lengthily, but please read until the end if you are able. To give a sort of "back story" here, I'll explain my situation in a nutshell. In November of 2014 I was diagnosed with a gluten intolerance by my allergist after recurrent, severe mouth ulcers and a bodily rash. I had a blood allergy panel, but NOT a Celiac specific panel, which ruled out other food allergies completely - corn, pea, chickpea, chicken, tomato, egg, milk, etc. My allergist suggested a gluten-free diet, which I adopted & have been adhering to since then. Recently, I've been acutely sick since August of 2016, so we're talking a year plus now. My symptoms began with a burning abdominal sensation, pain after eating, premature and uncomfortable full feeling, bloating, etc. My internist referred me to my current GI doctor where I was diagnosed with GERD (chronic acid reflux) , and prescribed Omeprazole, which I still take daily. My next appointment in February had me still feeling awful & my GI doctor decided to perform an upper endoscopy, which I did in March. He was looking for ulcers, evidence of bleeding or infectious disease, and Celiac. Mind you, I had informed him that I've been eating strictly gluten free for almost three years now. He claimed this really didn't matter? This has left me wondering. Anyway, the results came up empty, but I was found to have evidence of gastritis. Then came the rest of my symptoms - frequent diarrhea, bloody diarrhea, extremely greasy stools, stools that float, mucus in stools, unable to "wait" to use the bathroom (I.e. Urgency), alternations of diarrhea and constipation, weight loss, low grade fever, EXTREME fatigue, poor concentration, memory loss, cognitive decline, and my mouth sores have reared their ugly head once again. After I first went gluten-free, the ulcers probably cleared up for a good year at least, which was heaven on earth for me. Now, they're back with a ruthless vengeance. As we speak, I've barely recovered from one for a day or so, and I'm down with two more. You can't even make this stuff up. After I addressed these new symptoms with my GI, he was concerned I may have had Crohn's Disease or Colitis, so he performed a colonoscopy, which ruled out both conditions through gross observation & biopsy samples. Since colonoscopies can only read so much of your colon & terminal small intestine, I then had a PillCam to see the rest. The only results he could suggest was that I have a "slow bowel transit," so I was diagnosed with Irritable Bowel Syndrome. The umbrella term for all intestinal and abdominal suffering with no definitive cause. Summary of my bible here is that I'm still suffering greatly. The intestinal issues are really giving me poor quality of life, and these pervasive mouth ulcers are more than I can bare anymore with the pain, inability to eat, weight loss, etc. it's all a sick and harrowing cycle that I am caught in the middle of. In saying this, I'm almost curious that I could have Celiac disease that was horribly missed. If I had already been gluten free & a biopsy was taken it would appear as though I'm a healthy individual, no? I was informed you had to be eating a strict gluten FILLED diet prior to ANY testing. ALL of my testing was performed after I already went gluten free, which could have altered results horribly. I'm almost crazy enough to think that if this is the case, I'm going to eat gluten just so I can be re-tested because I can't go on like this anymore. Can anyone please clarify and/or suggest something?
  11. Hey, so I've been noticing a pattern where everytime I start a new workout routine or try to do a 30 day challenge, my body catches a cold or a flu. I usually end up quitting and resting but I want to be fitter and I just made a 21 day commitment to eat clean and exercise 6 days a week. Nothing crazy, I'm eating excellent food and often and my routines are not horrendously hard; just 25 minutes cardio at 60 second intervals and strength work alternating. This week is 35 minutes alternating. I'm curious if anyone else has had these roadblocks to fitness and if and how you got through it. Thanks so much. I should also mention I've been gluten-free for 2 years however have had some contamination issues or restaurant episodes despite being very careful. So frustrating as you all know.
  12. Hi everyone! I am a 23 yo female and was diagnosed Celiac in January 2016 and have been gluten free since then. My IgA levels are down to 4 and my Celiac is very under control. However, I recently have been dealing with a lot of unexplainable pain and discomfort that no one can seem to explain to me and wanted to see if anyone has experienced anything similar. For about a year, I have been occasionally getting severe abdominal pain that seems to be concentrated in my rectum. It starts by feeling overall icky, crampy and sort of like I have "twinges" in my rectum. It feels like maybe I need to have a bowel movement but I dont, and if I do it doesn't help the pain. So I feel bad, and then all of a sudden I feel like I am being stabbed in my rectum. The stabbing comes and goes but causes me to like roll around on the floor it is so painful. This sometimes only happens once and is over in 20 seconds, but generally it is an all day thing and lasts like 8-10 hours. These generally have been coming 2-3 times per month one day apart. They seem to come about every four weeks (not during my period or ovulation though) and naproxen and heat helps some, so I thought it was maybe OB/GYN related (they also started shortly after I switched for BC pill to an IUD) but I have seen two OB/GYNs and both have no idea and think it is gastrointestinal, maybe gas pain of some sort that is possibly triggered by hormones related to my cycle. However my gastroenterologist is also stumped and thinks its related to my uterus cause it seems to be somewhat cyclical. Anyway they're horrible and I can't figure out what they are, they don't seem to be related to what I eat (though I should probably start tracking) or a particular time of day. Sometimes they seem to come while I am exercising, but sometimes they wake me up in the middle of the night. I should also add that I have no GI symptoms involved with these painful episodes, my bowel movements seem completely normal, no gas or anything either. Also, the last two days, I have woken up in the middle of the night with the feeling of being bloated and crampy. Not painful per say but extremely unpleasant. Again, I'm not on my period so idk what is causing this, especially cause both times it woke me up and I am a deep sleeper. Now, for the last 30 minutes I have been having non-painful muscle spasms in my left lower abdomen. It feels like a flutter, if I put my fingers against the spasm I can feel it distinctly. Again it doesn't hurt, but feels weird and I've never had a muscle spasm there before. If anyone has ever had any of these symptoms before or has any idea what me going on I'd be very grateful! Is it possible its related to glutening? Since I caught my Celiac really early I don't really know what my symptoms of being glutened are, the few times I know I have been I don't get diarrhea but instead extreme bloating, acid reflux, and overall feeling really crappy and anxious. I have a whole host of health issues these days that have been causing me a lot of stress (I'm in medical school and don't have time for these debilitating pains!) and it would be awesome to have some answers. Thank you all, K
  13. I was diagnosed with Celiac in Sept 2016. I have been gluten-free for 7 months. Pre-diagnosis: hair thinning, dry skin, head aches, awful bloating, etc. Symptoms have steadily improve with bloating here and there. Now, the past month, my hair has taken a dramatic turn for the worse with loss and thinning of hair again - but worse!! Why is this? I need help!
  14. Hello all, I have been suffering for some time now and just learned I am severly malnourished and have Celiac Disease (confirmed Monday). The GI specialist said (in from of my boyfriend who has now become a mental basket case) that this is a last-ditch effort treament. He expects 100% cooperation YET I still haven't seen a dietician (only a student who is studying to be one when she grows up). He has given me a supplement plan including a peg for home IV but I- don't know yet how much of that is covered. Any way, I have a medical app that allows me to set the number of carbs, protein, fats and SO much as my goals so I can measure them when my blood tests come back. Does anyone know of a place to help figure these goals? Thank you, Laurie
  15. Hi, Has anyone with celiac disease gotten a vasectomy and do you think it caused any problems for you with regards to autoimmunity? I'm considering getting a vasectomy and was reading up on possible risks. Generally these seem to be little to worry about, but I noticed that 60-70% of men develop antibodies to a protein in their own sperm as a result—an autoimmune response. The primary downside to this as far as I can tell is that it can mean infertility even if the procedure is surgically reversed... but considering I'd be getting a vasectomy to become infertile, that in itself doesn't worry me because I am certain I'm done having kids. What does worry me is the idea that having an autoimmune disease already might make me more susceptible to developing sperm antibodies and that these antibodies could have other systemic effects on my body since I will potentially constantly have immune complexes floating in my bloodstream due to a neverending immune reaction against my sperm, which of course continue to be produced post-vasectomy. I want to avoid provoking my immune system further. Thanks.
  16. Hi, i have celiac for almost one year, little bit less. I have also hashimoto, but in euthyrotic phase, so i dont need pills. For now But now i have wierd symptoms... Every morning i wake up with stiff fingers. I imediatelly thought i have rheumatoid arthritis, as it is very common with celiac... But stiff fingers are only on my left hand! My doctor ordered lab tests, and i have elevated sedimentation rate (22), CRP is normal in every test. Besides stiff fingers in the morning i have terrible low back pain (they did abdominal CT, all was clear), mostly on left side, radiates to the leg. Sometimes also other bones hurts. I am also very tired all the time. I didnt lost my weight, and other blood tests are normal, including vitamin D, b12. Do you have any ideas what is going on? Anyone else with that symptoms? Thank you so much!
  17. Hello, This is my first time posting to this board. My daughters were both recently diagnosed with celiac. We are getting used to it. It's so much easier to control on the home front, trickier when we travel. We suspect we've gluttoned our youngest, who seems to have it much more severely, via cross contact a few times. Dish towels, sponges, cutting boards etc. while visiting family. They go to extraordinary lengths to accommodate us food wise, it's the environmental piece that feels insurmountable right now. What are your best travel tips when visiting family or going on vacation when you want to cook in a kitchen? We love to cook, food is a big deal to us. Do you bring your own items? If so, what do you bring? WOuld love to hear how other approach this. Thanks!
  18. Hello. I apologize for this being long but I feel I should explain the situation so you better understand where I'm coming from. I am here because I do not have the time or money to be galavanting around to different doctors offices. I spent time doing that already, lost money out of my pay from not working but never found A SINGLE ANSWER. I am a 23 year old female and back when I was about 13-14 I was diagnosed with Mononucleosis. Prior to this, I had been having other issues, or at least the minor problems I had previously considered as 'growing pains' since that's what my primary at the time attributed my pains to. Well now i'm 23 and it's only gone downhill since then. Back then I was told by a GI doctor who had done two or three EDG's and two colonoscopies that I have "the enzymes for crohn's and need to be careful." No other explanation other than eat 'gluten free'..... Now, this was kind of when it was the new 'health fad' for people, so being so young my logic was 'I'm young, I should be able to do what I want and eat what I want without worry!" so that's what i continued to do, despite feeling overall unwell. (I had really always felt unwell so it wasn't really that big of a deal for me) Now that i'm older, i've literally experience an entire swath of issues. The only reason I am here is because I am now thinking back to that conversation with the GI Doctor that maybe she was right. While I do have insurance, I honestly don't really have the money to be shelling out for these tests all over again as I was lucky the first time around when my grandparents had taken me since I was underage. My symptoms over the years and continuing have been: (in full, some may have nothing to do with the another) Lower back problems, feeling like sciatica but never confirmed. X-rays, MRIs, etc show nothing despite the intense pain. Drs now refuse to do more tests for 'nothing'. So I am left to handle feeling like an elephant is sitting on my lower back, right above my tailbone. (I did fall on that around 12 or 13 but doc never called back after testing, assumed i was fine...) Stomach cramping/spasm feelings On and off nausesa, any time of day. Inability to sleep. Constant changes from hot to cold. (Original doctor has said over the years my temperature seems to run higher than normal. I almost always feel feverish even if only slightly.) Headaches/migraines Fatigue Lightheadedness at times Restless legs (DRIVES. ME. INSANE. The muscle relaxers i've been given just made it 1000000x worse! I was so sleepy but couldn't fall asleep due to the restlessness.) On and off diarrhea / constipation (I don't know what a 'normal' bowel movement is) Costochondritis that has come and gone since I was in 4th grade. (I remember the day because it was April Fools day and everybody thought I was faking the serious pain I was in. I could barely breathe, it felt like my tendons/muscles were being torn apart on the inside) . I believe this is what my original DR thought was 'growing pains', except they never stopped even after I was finished growing.. I used to get sick very easily - for about two years it seemed to clear up then i started getting infections non-stop. There are some .... embarrassing things... Such as despite how many times I clean myself I feel like i'm.... leaking.......... Sharp/ache like pains everywhere in my body. There are likely many other things that I'm just so used to I'm not listing because I'm not sure if they're even related. I am just so tired of feeling like dog crap. I've never felt 100%, ever. For as long as I can remember i've always had issues but I come from a family that kind of just.... deals with their problems and not complain 24/7. After years of that, I need help. I am absolutely fed up not being able to do things because I just feel generally crappy. It's seriously depressing and making my depression and anxiety worse. Is testing for a second time worth it? If it is, what tests should I really be focusing on to figure out if this is my problem?
  19. This is gonna be long! Hi, I'm Emma! I know that nothing short of getting tested will show for sure, and nobody but my doctor can tell me. All I'm asking for is opinions But in order for me to get a blood test I keep trying to explain my (extremely severe) fear of needles. I have to be heavily sedated and medicated in order to get it done and he won't move on from Valium which didn't work (and they gave me a big enough dose for a grown man, they said. It had no effect.) I asked people on quora about it and they all suggested like therapy and mental coaching but they don't understand that when I'm in that state I have physically hurt nurses, doctors, dentists- I can't be talked down at all and need to be sedated. Long story short, a blood test is a dream. My doctor also wants to check for anemia, hypothyroidism, PCOS, and something else I can't remember because of my symptoms. For starters, I know for a fact I'm gluten intolerant. It's a long story but I went on a pre-packaged gluten free meal diet for about four months and then when I went off it and had gluten it was like my entire brain swelled up. My partner said it was like I was emotionless. I couldn't think, or really put thoughts together. It felt like (and I literally did) I could stare at a wall with my mouth open drooling. It just dumbfounded me. I asked my gluten intolerant relative and she said I probably did have gluten intolerance. When I went back on my gluten free food for another three months, and then back off it again, and the same cotton-stuffed head feeling (among other things) came back, I knew it wasn't a fluke. Especially considering gluten was the only ingredient that changed when I did that diet. I've been extremely tired for my entire life, my doctors prescribed me adderall and Wellbutrin to keep me in a semi awake state. I've slept over 30- consecutive hours, and still woke up tired. This eased up with gluten free but considering I'm back eating gluten now (and have been for awhile...it's hard not to. I'm kind of gluten adapted at this point but can tell that a lot of thoughts are foggy and sort of out of reach. Not as clear as when I'm gluten free) my memory is kind of foggy and I can't recall if my sleep issues completely went away but I know they were a lot better. I have soft teeth, I get cavities from almost anything. I read that enamel erosion is common with celiac people. I read somewhere about skin elasticity with celiac disease. When I was growing up I got stretch marks really hardcore even though I was young and not severely obese (just a chubby kid. No reason for my skin to be so extreme. I'm just thinking there had to be another reason because kids have the most collagen in their skin, so why did mine tear so easily?) I have diagnosed depression, ADD, chronic fatigue and motion sickness (this doesn't necessarily have anything to do with gluten intolerance I just notice it eases up as well when I take gluten away.) it seems like no matter what supplements I take or changes I make nothing eases my symptoms but things really improve without gluten. As for digestive issues, those cleared up with gluten free too but considering I only tried gluten free when I was 20 (22 in two weeks), most of my life has been bad digestive issues so I don't actually know what's normal and what's not. Also, my dad (who I've always been more similar to in terms of genetics.) had a camera thing in his intestines done, and his results were what the doctors said were "irritation (I can't remember the word, I think it was irritation) consistent with celiac disease." This is all I can remember for now. Does anyone have any thoughts?
  20. Hi all, this is my first time I post here. I have celiac disease and was recently diagnosed with other allergies and that's for eggs and dairy protein (casein). I am so sensitive to gluten that I can not eat gluten free oats or can take products where the gluten has been taken out (for example gluten free beer). Unfortunately I am intollerant to millet and buckwheat which makes it difficult to buy substitutes. I am ok where I live but travelling is very difficult for me as it's hard to take in carbs. I know this is a long shot... but my question is does anyone know of some gluten free formula, like a nutricious porridge (but not oats), that is specially designed for 'us'? Something easy on the go, to mix with water for example. That would be very helpful and improve my life quality. Thanks in advance.
  21. Hi all! I'm new to the community, and would love to hear about what I can expect as I enter a new gluten-free life and begin recovery. I understand that everybody's experiences are very different, but I'm interested in hearing a range of experiences. For those of you that had lived a gluten-filled life until diagnosis, what was your experience when you started a true gluten-free diet for the first time in your life? The bads and the goods? Thanks for sharing your stories with me! I'm excited to (hopefully) start recovering and enjoy a life of energy and happiness and less pain!
  22. ok today is officially one week i've been gluten free and i haven't made any noticeable differences in feeling better. my first question is: how long should i wait to expect changes to occur? am i not giving it enough time? prior to going gluten free one of my issues was constipstion, as well as other health issues usually involving an upset stomach, nausea or an uneasy feeling in my stomach. but since going gluten free i have had a bowel movement different from usual. and today it was more loose and diarrhea like and it is very rarely like that. oh and about half way through the week i got a random rash pop up on one ankle???? advice or suggestions??
  23. Iron: 17 mcg/dL (Low) November 11, 2016 Ferritin: 1.8 ng/mL (Low) November 11, 2016 RBC: 4.05x10^6/uL (Low) November 11, 2016 Hemoglobin: 8.5 gm/dL (Low) November 11, 2016 Vitamin D: 25.7 ng/mL (Low) February 22, 2017 ANA Profile : February 27, 2017 FANA: Positive FANA Titer: 1:640 FANA Pattern: Homogenous Gliadin IgA: 2 units June 29, 2017 Gliadin IgG: 3 units June 29,2017 TTG Ab IgA: <1 units/mL June 29, 2017 TTG Ab IgG: <1 units/mL June 29, 2017 Immunoglobulin A: 59.1 mg/Dl (Low) July 10, 2017 Immunoglobulin M: 44.2 mg/Dl (Low) July 10,2017 Immunoglobulin G: 1010.0 mg/Dl (Normal?) July 10, 2017 Immunoglobulin E: 5 KU/L July 10,2017 My RBC and Hemoglobin have come up and are normal. My iron levels will get high (too high) when I take 65 mg elemental iron twice a day for several weeks but my ferritin has never gotten over 42 ng/mL. When I stop taking my iron supplement my iron and ferritin plummet in just a matter of weeks. My hair is falling out, I get rapid heartbeat when I get too low on iron and if I get my iron too high. My whole body hurts especially my finger joints, back , knees and really all of my joints. Going to the bathroom at least 2 times day and sometimes up to 5 times a day. Extreme fatigue, Brain fog, extremely emotional and irritable. I just went gluten free July 1, 2017 and am starting to feel better. Joints feel better, I can sleep better, my mood is better. Celiac or maybe just gluten sensitive? Any thoughts? What do my labs say about me?
  24. Hi everyone, Is there documented link between celiac disease and gym/sport-related injuries? I'm a recently diagnosed celiac and I'm wondering if the reason I have so many injuries (which won't go away even after months of rehab) is the celiac disease. Basically, I have ongoing pain in a number of areas in my body (left shoulder, right hamstring, left Achilles). The specialist and physio I've seen both think it is tendinitis, but I've been doing the recommended rehab and stretches for it for about 10 months and it's not going away. The injuries started around August 2016. Around March 2017 (so, well after the injuries), I started getting really sick and I was diagnosed with celiac disease. I've been gluten free since April (4 months) and the 'sickness' symptoms are gone but my injuries are still here. It kind of feels like every time I do exercise, something new goes off in my body. And I'm not training like an idiot or anything - before this I was training for 10 years without any injuries. At this point I am kindof hoping to god it's because of the celiac disease and that the injuries will sort themselves out once I finish healing (which I understand takes over 6 months?). Otherwise I have no idea what to do because I've been to the sports-doctor and physio a trillion times, I've spent a million hours doing rehab and there's basically no improvement. I just wanted to know whether anyone else has experienced the same thing and if you have any advice
  25. Charmin has released an important new tool for celiac sufferers, the SitorSquat bathroom finder. No more running in circles or trying every door in the building in a desperate rush. Now you can know right where to go. Get it today for Android phones. https://www.charmin.com/en-us/about-us/sitorsquat?gclid=CjwKCAjw-qbLBRB7EiwAftBCI6Zc52q7S3svyfGqqz1jn9zx1cToCh1ZqQunMt6x29WlD10w2j9ALxoCEDsQAvD_BwE A clean nearby public bathroom can be hard to find. But not all restrooms are created equal. With SitOrSquat we put clean public toilets on the map. Literally. Clean locations have a green “Sit” rating. Less desirable ones have a red “Squat." You can even rate and review a bathroom, and share your experiences to help others. So, the next time nature calls and you need to find a nearby restroom, SitORSquat will help you know where to go.
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