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Found 7 results

  1. My rheumatologist called me earlier to tell me that my blood work confirmed lupus and that I needed to start plaquenil immediately. (200mg twice a day) I was diagnosed with celiac's just over 5 months ago and have been 100% gluten free. Just sharing my update, I guess. If anyone has any advice feel free to share. Especially if you take plaquenil. Feeling lost too often lately! ~Julie
  2. I'm so confused right now. I had a rheumatologist appt yesterday. He told me he thinks I have lupus and told me to start taking plaquenil right away. He took 12 tubes of blood and results should be back in a week. He also said that lupus could cause villi atrophy. He saw my celiac blood work and confirmed biopsy in the file. Last week my celiac panel was redrawn and looks real good. He said that it shouldn't look that good yet. That my celiac numbers are coming down quite fast. (Like is he trying to imply lupus is causing that for me and not celiac's?!? My celiac numbers were all high in October. Everything.) I don't know what to think and am scared about this lupus diagnosis. He must feel pretty positive to tell me to start taking the medication now, right away, before the blood work comes back. Does anyone else here take plaquenil? Any advice? Side effects? Do you take it for Lupus or something else? How often do you go to the rheumatologist. Any insight into what life is like would be helpful. I'm basically just eating plain fruit, veggies and meat but do you eat anything specifically because of lupus? Also here are my old and new celiac numbers: From 10/21: Celiac Disease AB Profile Deamidated Gliadin 119 units High 0-19 Abs, IgA Deamidated Gliadin 61 units High 0-19 Abs, IgG t-Transglutaminase (tTG) 29 U/mL High 0-3 IgA t-Transglutaminase (tTG) 19 U/mL High 0-5 IgG Endomysial Antibody Positive IgA Immunoglobulin A, Qn, 205 mg/dL 91-414 11/14 biopsy confirmed celiac's. Then redraw last wk: Celiac Disease AB Profile Deamidated Gliadin 18 units 0-19 Abs, IgA Deamidated Gliadin 18 units 0-19 Abs, IgG t-Transglutaminase (tTG) <2 U/mL 0-3 IgA t-Transglutaminase (tTG) 5 U/mL 0-5 IgG Endomysial Antibody Negative IgA Immunoglobulin A, Qn, 168 mg/dL 91-414 Serum ------------- Doctor (rheumatologist yesterday) said my levels came down too fast. That with celiac's those numbers should still be worse. I feel lost! ~Julie
  3. Hello everyone, (Warning: Extremely Long Post!) I am brand new to the forum and quite the confusing case. My not feeling well all began in late 2009 with extreme brain fog, mild tummy issues, mainly stomach burning and fatigue. I began breaking out in strange rashes off and on and seemed to be having peculiar reactions to food. At first I was so confused and caught off guard because I suddenly became Lactose Intolerant. I couldn't consume dairy without getting stomach cramps, gas and having to run to the bathroom. I seen a GI Dr. and was tested for Celiac back then (around the end of 2009) but it was negative and I have no idea what tests were run, the numbers or reference ranges that came of that test. Dairy continued to make me sick every time I had it. I appeared to react to everything from Dairy to Doughnuts and for some reason all sweets were making me kind of sick, so I thought maybe it was a sugar problem. I went to an alternative doctor and he suggested I go on a Dairy Free and Gluten Free Diet. Which I did - and I felt a lot better but not 100%. I'll admit, at the time I really didn't know a whole lot about Gluten Free diets and I have no idea if I was totally Gluten Free or not, it was a long time ago and I was a newbie. I indulged in quite a bit of supposedly gluten-free processed foods and even still ate oatmeal until oatmeal seemed to also make me sick. Then I removed oatmeal from my diet and still haven't eaten that to this day, I am too worried about it making me sick again. After eating that way for probably 3-4 months I developed an intestinal blockage in February of 2010. The ER Dr. said my intestine twisted shut on itself. I was referred for a Colonoscopy in March of 2010, they did an Endoscopy and Colonoscopy at the same time but were not looking for signs of Celiac specifically. The results were that I have a hiatal hernia and everything else appeared normal. (no biopsies were taken, as they were not looking for Celiac) I fell off the gluten-free Diet but remained Dairy Free almost entirely. I would occasionally consume a bit of dairy to make sure it still made me sick, which it did. So I ate pretty much everything but Dairy till mid 2011 where I went on a very strict, almost Grain Free (it allowed brown rice) - Nut Free, Sugar Free, Still Dairy Free Diet. And I felt really well eating that way because before going on that diet, it seemed like everything made me sick. A bowl of oatmeal, a tuna sandwich, you name it. I had been diagnosed infertile with high likelihood of Endometriosis in 2011 - I had been trying to conceive for two years at that point, so my doctor told me I was infertile. Till 2012 (after 3 years of trying) when I became pregnant! I have no idea how I was able to conceive but I suspect it may have been the diet I was following that helped. And I ate that diet from Mid 2011 till August of 2012 where my 1st trimester pregnancy cravings got the best of me and I began eating pretty much anything. I didn't feel well after going off my diet but I assumed it was just pregnancy stuff. I also discovered that miraculously I was no longer lactose intolerant. Which pretty much brings us to now, I ate whatever I wanted during my pregnancy, had my healthy, perfect son 9 months ago and my health has been going even more down hill since then. I am suffering from Chronic Diarrhea, Nocturnal Diarrhea that wakes me from a dead sleep, not every night but increasing in frequency. I am going as much as 2-8 times a day, most days but not every day. My Lactose intolerance seems to be coming back as I can only occasionally tolerate dairy now. This has been going on for several months and I am losing weight. I am Vitamin D. Deficient again but I was diagnosed Vitamin D Deficient back in 2010 as well, so that is no shock. Brain fog, fatigue, intestinal cramping, tummy pain and most recently Burning sensations, tingling and painful pins and needles in my feet and hands. Cold hands and feet, except when they are hot and burning. Still getting rashes off and on. Which prompted a B12 test that shows a huge decrease from 4 years ago but still good serum levels, no B12 Deficiency. I am having weight loss, unintended of course, my Dr. thinks it is most likely due to the Diarrhea. I have lost over 11 pounds in about 2 months despite having a pretty big appetite and having dessert after every meal and not trying to lose weight. My Dr. ran an IgA test and a TTG-IgA test on January 10th 2014. IgA 188 (Normal is 80-340) So that is normal. TTG-IgA <1.2 (Normal is 0.0-3.9) So that is normal too. I am kind of at a loss, I seriously thought maybe Celiac was the answer for me, since so much seemed to fit. The Nocturnal Diarrhea, the weight loss, even the fact that I was able to go back to eating dairy after the special diet, I thought maybe that was from my Villi Healing and that now I am Lactose Intolerant again because my Villi are getting damaged again.. Even how I was able to conceive after being on my special diet for almost a year but who knows, I'm confused now... any suggestions? There are quite a few Autoimmune Disorders in my family. I have a Sister with Lupus with Kidney Involvement, I have another Sister who has 2 AI's, she has Eosinophilic Esophagitis and Areata Alopecia. My Mother is also sick but hasn't gotten a diagnosis yet and I have a cousin with MS. I am sorry for the long post, thanks for taking the time to read this and any suggestions or comments would be greatly appreciated. Thanks so much! ~ Thursday
  4. Celiac.com 01/28/2013 - Some case studies point to a connection between celiac disease and systemic lupus, but there hasn't been much in the way of population-based studies. Hoping to get data that would lead to a more solid answer, a research team recently set out to determine levels of systemic lupus erythematosus (SLE) in 29,000 patients with biopsy-verified celiac disease. The research team included J.F. Ludvigsson, A. Rubio-Tapia, V. Chowdhary, J. A. Murray, and J.F. Simard. They are affiliated with the Clinical Epidemiology Unit of Department of Medicine at Karolinska University Hospital and Karolinska Institutet in Stockholm, Sweden. For their study, the team compared the risk of SLE in 29,048 individuals with biopsy-verified celiac disease (villous atrophy, Marsh 3) from Sweden's 28 pathology departments with that in 144,352 matched individuals from the general population identified through the Swedish Total Population Register. For the study, the team defined SLE incidents as at least 2 records of SLE for any given patient in the Swedish Patient Register. They used Cox regression to estimate hazard ratios (HR). They found that 54 individuals with celiac disease also had an SLE incident. This amounted to a HR of 3.49 (95% CI 2.48-4.90), with an absolute risk of 17 cases per 100,000 person-years and an excess risk of 12 cases per 100,000 person-years. After five years, the HR for SLE was 2.54 (95% CI 1.57-4.10). Even though SLE incidents occurred mainly in female patients, the team found similar risk estimates in men and women. When they restricted the outcome to individuals who also had a dispensation for a medication used in SLE, the HR was 2.43 (95% CI 1.22-4.87). The HR for having 2 records of SLE diagnoses, out of which at least 1 had occurred in a department of rheumatology, nephrology/dialysis, internal medicine, or pediatrics, was 2.87 (95% CI 1.97-4.17). From this data, the team concludes that people with celiac disease faced a three-times higher risk of SLE compared to the general population. Although this elevated risk remained more than five years after celiac disease diagnosis, absolute risks were low. Source: J Rheumatol. 2012 Oct;39(10):1964-70. doi: 10.3899/jrheum.120493. Epub 2012 Aug 1.
  5. Hey guys! A year after being diagnosed with Celiac (3 years ago), I was diagnosed with lupus. Most of the time I can tell which one is bothering me by my symptoms (and I usually automatically know when I've been glutened). For the last 6 days I have been exhausted, diarrhea, headaches, dizziness, facial rash, vomiting, body aches, and hot flashes. I have not eaten anything questionable. At first, I just thought I inadvertently glutened myself, but it just keeps dragging on... I wonder if this is indeed the Celiac or if it's Lupus. If it's Lupus I prob need to get a steroid. The prob with that is oral steroids KILL my GI tract. I am miserable, and my butt is killing me! Just wanted to know from someone who has both, how you know which is which? Steroids or no? ANA? Sed Rate? Should I go to my PCP? GI doc? Rheumy? I have to get better. We are buying a new house, and I need to get busy! Also, should I ask for an IV to get some fluids? Thank you much!
  6. Hi everyone, I wanted to tell you all about an article that I came across as I was researching dsDNA and celiac correlation. When I had my testing done for celiac disease, my dsDNA was also detected which is a marker for SLE (Systemic Lupus Erythematosus) but my neurologist, family doctor and several other second opinions later, they all say I do not have lupus because of the low titer range being 1:10 and I never get the rashes nor joint pain association. I have had seizure type activity, photophobia, neuropathies, and weak muscles that I surely thought was lupus, however I never have had all of the criterion and things just didnt quite add up. I also tested positive for the deamidated gliadin peptide igG (DGP IgG) which indicates celiac disease. In doing research I found an article wriiten about a woman, Margaret Romero, who was diagnosed with lupus nephritis, and she found out that she had the genes for gluten intolerance. Her story is pretty remarkable and I wanted to ask you guys if you have heard of her before and what you think about her story. I will attach a link but I am not sure what the rules are for posting for links, but here it is, I hope that you can read it and see her success. http://celiaccorner.com/celiac-gluten-free-blog/surviving-a-dual-diagnosis-of-lupus-and-gluten-sensitivity/ I also found this study for those with lupus like symptoms and even diagnosis which turned out to be gluten sensitivity. http://ard.bmj.com/content/63/11/1501.full I am not saying this is EVERY case because everyone is different. I think for learning and knowledge purposes it can be very informative. It also may offer some of us relief. I wonder if celiac really can be mistaken for lupus? Has this ever happened to anyone here? Thanks in advance and I really hope that it is okay that I am giving these links for others to read.
  7. I would just like to tell you about my recent medical history and I would like to know if any confirmed celiac cases could give me some advice. As of March of 2012 my health went downhill. One morning I felt like I was coming down with the flu, I waited for a few days and I didn't feel better, so I went to the doctor and was diagnosed with pneumonia in my left lung. I took antibiotics and I felt fine for a month, then one day I just felt exhausted. I went back to the doc, got more antibiotics, and I felt better for a few more weeks. Then I got sick a couple of more times with bronchitis and ear infections. After a bunch of tests I was finally diagnosed with chronic or recurrent epstein barr virus. All of my lymph nodes (and spleen) were enlarged, I was exhausted, and I felt an extreme and unnatural amount of anxiety. The doc put me on antibiotics for a while, in case I had been exposed to Lyme disease. Fast forward a few months and I still have fatigue, brain fog, and abnormal blood work. The physical exhaustion has gotten better as has most of the strange anxiety. (I can tell you that the anxiety was something physiological, it was not a normal mental thing). I thought I had encephalitis or something. However, I still can't concentrate on things for very long without feeling worn out. My joints all make loud popping and cracking sound. Its like my bones are made of old creaky wood. This is the most unsettling symptom to me besides the brain fog. Does anyone else have creaky joints? I briefly had eczema on my forearms last spring, which I had never experienced before. I have a splotchy rash that sometimes appears on my chest, neck, and a bit on my face. After a few months of having mono, and still no change in symptoms I tried a gluten free challenge on a whim. I tried to cut out gluten as best as I could. Some days I did feel better, but other days I felt like crap again. When I did go off gluten, I felt like my stomach was messed up (Which I attributed to all the antibiotics I had taken in the past) Prior to this I really didn't have any GI issues. So I asked my doc about celiac, and he acted like I was another hypochondriac crazy patient. He tested me anyways, but it came back negative.(However I probably hadn't eaten any gluten for a week before the test.) oops. Prior to all of this, I was pretty healthy, a bit skinny, but I had a huge appetite. Now I feel like an old man. As far as family history, my mother and some others have hypothyroism, my uncle had colon cancer at a young age, and my grandma had rheumatoid arthritis. Autoimmune diseases do run in my family(probably on both sides). No one with known celiac though. I also saw a rheumatologist based on my bloodwork, and he said it was a possible lupus case. However, I doubt this as I am a white male and I would assume that celiac would probably be 100X more likely than lupus. (I calculated this based on stats.) Also, my ANA was negative, and I don't think my rash is the same as the butterfly rash. Here are some of my blood test results. I was wondering if any of this is in line with celiac disease. I am really hoping its not lupus. Or some sort of infection (I lived and worked outside in new mexico last year, and I thought it could be valley fever at first, although that came back negative.) I know that the bloodwork doesn't appear promising, but I swear that I wake up sometimes and almost feel 100% normal. And this feeling seems to coincide with a meal that I ate the night before such as stirfry, corn tacos, or baked chicken and mashed potatoes that didn't have any gluten in it. I have to make a new appointment with a new rheumatologist, since I recently moved because I ended up not enrolling in graduate school like I had planned on doing. Neutropenia - borderline low WBC - low RBC - normal Low complement c3 and c4 Lupus anticoagulant: PTTLA, and hexagonal phase phospholipid - high anti-dsdna - mildly elevated ANA - negative EBV antibodies Hepatitis - neg lyme - neg Sjorgens, anitsmith, RNP, anticardiolipn,antiscleroderma, anticentromere, CRP - all negative
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