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  1. I have my Endoscopy -finally- scheduled for February 5th. Long road with some uninformed doctors. I've been gluten-free/DF for about 3 months. I know I have to do a Gluten challenge. Should I start today? How much Gluten per day Should I be having? And a month is enough for the endoscopy correct? How long do results typically take? My follow up with the doctor is February 20th, not sure it's enough time. And should I stick with eating gluten until this check up? Also, should I go ahead and eat dairy again as well? I know it's definitely a problem because after accidentally having it recently I had some reactions. Or Should I mostly be concerned with getting the Gluten in my system? Sorry for so many questions Thank you!!
  2. Hello! I have been searching extensively for a topic similar to this and I haven't been able to find anything - sorry if this has already been addressed. I had a blood test for lots of different things a few months back and it transpired I had shown up as having Coeliac disease. The doctor suggested I go on a gluten-free diet (what a turd) before getting my appointment for a gastroscopy to 'rigorously confirm' my diagnosis. Went on the gluten-free diet - felt amazing. Two months after this I had my appointment date for the gastroscopy and started my 6 week Gluten Challenge. First three weeks were okay - minor tummy discomfort, lots of tiredness but generally fine. Last three weeks weren't great. I had my gastroscopy on Thursday 5th July - it was awful but quick. I had no sedation and went home the same day with some discomfort but nothing unbearable. Since then, however, things haven't been fantastic. For the last few days I've adopted a low FODMAP diet (as well as back to Gluten-Free) to try to ease my problems which has helped, but it seems like on the two occasions this weeks I've eaten/tried kidney beans/haricot beans/chickpeas/lentils I have THE WORST STOMACH EVER. What is going on?! I'm Vegan and I gotta say this stuff makes (and made) up quick a large chunk of my diet. Has anybody else had any extra sensitivities after their Gluten Challenge/Gastroscopy? I'm taking charcoal tablets, drinking peppermint tea.. All that jazz. I was so looking forward to going back to normal and it's just not happening. Would love to know if I'm not alone with these issues! Yours fed-upedly, Beth
  3. Hi All! I just found out I have the celiac gene. My brother has it too; he was diagnosed with celiac. My sister also has the gene but she was diagnosed NCGS. I have tried twice to do the gluten challenge so I can get proper blood work and this last time (last Friday) I got so sick I missed two days of work this week. I am just today feeling like myself again. I only stopped eating gluten about two months ago (except for the two times I ate gluten in the last two weeks). Do you think my blood work would still come back positive or is it a waste to test at this point without doing the gluten challenge? Or maybe the challenge gets easier the longer you do it? I would like to get a proper diagnosis but I can't lose my job. Thanks in advance for any advice.
  4. Hi guys. I know this has been asked a lot and there is probably no true answer, but wanted your opinions anyway. My sister has celiacs and I have the DQ8 gene. I was having a lot of stomach issues earlier in the year and then went on a keto diet (pretty much no gluten) for a couple weeks and felt amazing. I then decided to get tested for celiacs. I ate gluten only one week and tested negative. My doctor did order me another blood test and it has been 9 weeks on gluten now. Should I wait the whole 12 weeks? At this point would cutting out gluten for only 2 weeks, followed by 9 weeks of heavy (believe me all kinds of stuff) gluten be a safe bet of not producing a false negative? Seven years back I had tested positive on Enterolab, but I got a blood test & endoscopy and it showed negative. Also for you kaiser people have you had any luck getting a referral for endoscopy without positive blood tests? Would they order more than the IGG and IGA? I didn't even ask because from what I've read I've seen they typically don't. Thanks so much!!
  5. IrishTwins2009

    Gluten Challenge

    Hello I'm wondering if any of your children had to do the gluten challenge, and if so how long did you do it and did you get positive results. I'm very worried about my daughter. She did the gluten challenge and got to 7 weeks plan, she has been a bucket of sick since starting, was to get to 12 but she caught a cold and it hit her so bad that she ended up in the ER with breathing difficulties so I took her in the next to get her blood tests. I figured we could go in and get a referral even if the results are negative. I'm terrified I made a mistake by not waiting longer. We did the bloodwork on Monday and still haven't heard from the doctors. I am trying not to panic but there is something going on with my kid and I want answers. I'm not feeling very patient. thanks for listening
  6. My 8yo daughter has been doing the gluten challenge for almost a month now. There is one thing I've noticed has been getting worse and to the point she has to leave her classroom to go for a walk to get away from the noise or needs to wear sound cancelling headphones. She says she can't concentrate with all the noise. Her brother also has autism and he stims, and repeats words or sounds over and over again. She seems to get super anxious and begs him to stop. I asked her if the noise was hurting her ears and she said no. She said it's like her brain is all jumbled. Does that sound like something brain fog would do? I have tried to google brain fog to get a better understanding of what it might feel like but I'm not sure.
  7. Hi everyone, Back story: I was diagnosed with a borderline wheat allergy as a toddler, but the same allergist told my mother that spelt and Kamut (types of wheat) were ok to feed me. So, I have no idea how reputable that doctor was, and I’ve been eating wheat most of my life. I’ve got tons of issues because of it, and recently went to a gastroenterologist familiar with celiac to see if I needed to worry about complications developing or anything like that. He said I needed to do the gluten challenge and serology testing to find out whether I have Celiac, or gluten sensitivity with some other condition, before he could move forward. After much deliberation, I decided to do the gluten challenge, and I am currently two weeks in. I am miserable, worried it’s affecting my job stability, and struggling to get through my days. The doctor told me I could do the gluten challenge for a minimum of two weeks, but that I should really do it for a month if I can. I can’t. I’m going to try and get through a third week and then give up. Question: The doctor’s nurse told me to go in for the blood test 4 weeks after I stop the gluten challenge. I can’t find anything about waiting any length of time between the challenge and the serology. Does anyone have experience with this or know anything about that waiting period? Thanks for your time, Cassandra
  8. Celiac.com 03/05/2018 - While people with non-celiac gluten sensitivity (NCGS) have neither celiac disease nor wheat allergy (WA), they often do have intestinal and extra-intestinal symptoms that are related to gluten consumption. Using a double-blind placebo-controlled (DBPC) gluten challenge with crossover, a team of researchers recently set out to conduct the first assessment of NCGS rates in children with chronic, gluten-associated gastrointestinal symptoms. The research team included R Francavilla MD, PhD, F Cristofori MD, L Verzillo MD, A Gentile MD, S Castellaneta MD, C Polloni MD, V Giorgio MD, E Verduci MD, PhD, E D'Angelo MD, S Dellatte MD & F Indrio MD. They are variously affiliated with the Department of Pediatrics, San Paolo Hospital, Bari Italy; the Department of Pediatrics, Santa Maria del Carmine Hospital, Rovereto TN, Italy; the Department of Pediatrics, Catholic University, Rome, Italy; the Department of Pediatrics, University of Milan, S. Paolo Hospital, Milan, Italy; the Department of Pediatrics, Santa Maria Incoronata dell’Olmo Hospital; Cava dei Tirreni SA, Italy; the Tandoi Group Factory, Corato, Italy; and the Interdisciplinary Department of Medicine-Pediatric Section, University of Bari, Bari, Italy. Their team looked at 1,114 children with chronic gastrointestinal symptoms, but no celiac disease and WA. For children showing a positive connection between symptoms and gluten ingestion, the team offered a four-stage diagnostic challenge that included: run-in, open gluten-free diet (GFD) and DBPC crossover gluten challenge. Patients randomly received gluten (10 g/daily) and placebo (rice starch) for 2 weeks each, separated by a washout week. The gluten challenge was considered positive when accompanied by a minimum 30% decrease of global visual analogue scale between gluten and placebo. Out of 1,114 children, 96.7% showed no correlation with gluten ingestion. Thirty-six children were eligible for the diagnostic challenge. After the run-in and open GFD, 28 patients underwent gluten challenge. Eleven of these children tested positive (39.2%). This is the first such study to demonstrate the need for a DBPC for diagnosing NCGS in children, since the diagnosis is ruled out in more than sixty-percent of cases. Source: The American Journal of Gastroenterology. doi:10.1038/ajg.2017.483
  9. Hey guys!!! I am in NYC and have had drs tell me “Oh you don’t have celiac. It’s really hard to maintain a gluten free diet.” Oh, well. OK then I’ll decide not have it! WTF! I’ve been gluten-free for 11-12 years. For financial reasons, I kinda wanted to have a diagnosis, but I was freaked out about going back on gluten. In the past yr, I’ve had SEVERE stomach pain unlike anything I had before I went gluten-free. A doctor scoped me and I had a buncha stomach ulcers. They cleared up a little but my stomach is constantly affected by gastritis which won’t go away. So I’m on Omeprazole, Rantitidine (or whatever) and Sucralfate pretty much all the time now. This whole situation may be exacerbated by my bipolar medications. I finally did the 23andme genetic test and the markers were there indicating increased risk for celiac including some pretty seious ones. It’s the DQ8 plus some other weirder ones. Anyway, I thought it said no there was no chance when I looked at it but I was still really freaked out to go back “on” gluten again. Then I found out one of the pastas I got at this super amazing store hereafter referred to as the Gluten Free Promised Land was not gluten free. They had so many gluten-free pastas I just didn’t look as closely as I might - it was Sfoglini “Hemp Radiators”. I was wondering why it was so good! And I wasn’t getting sick. Then I looked at the ingredients and saw wheat and looked at the box and realised it didn’t say gluten-free anywhere on it - I just was tricked by it being Hemp. So, freaked out totally, I tried a sandwich and got no reaction. So then I just started eating whatever I wanted which was amazing! But then I looked at my 23andme result again and saw that it wasn’t negative but that the markers were there. I mean, I still have stomach problems beyond the gluten thing so it’s hard to say what my current upset stomach is all about. But then I thought well I can do this for a month or two and then go get the biopsy again. One of my celiac friends who’s a total celiac nerd and I were talking and we thought maybe it was possible that maybe my villii was so far healed up after 11 yrs that I wasn’t getting sick. Yet. This is my 8th day of eating gluten (and kinda a lot of it cause let’s face it, tat s&*t is yummy! Looking online, I was unable to find anyone who had gone back on gluten after such a long period of time. I saw a few ppl who were on gluten-free diet for like 2 years and got totally sick right way after eating gluten. But nothing in excess of 2 years about. I’d ask the guy I went to for the ulcers who is supposedly some sort of “celiac expert” according to Zocdoc, but the dude told me if I had like a donut a couple days before an endoscopy then that would be sufficient to see the results in the biopsy. After I refused to go back on gluten for the test, he scoped me and said I “definitely don’t have celiac” based on a stomach lining that’s been 11yrs on a gluten free diet. So.....I’m not feeling the trust here. Hopefully there are ppl on this list who are totally nerding out on the current research and can offer up an opinion - seeing as how the drs are 100% toally and thoroughly useless, even in NYC - is it possible that my villi just aren’t damaged enough to be sick yet and as we go along it’ll get bad? Cause I’m not sure I want to destroy my health just to get a diagnosis when I might be able to keep looking and find a dr that can diagnose based on the genetic tests and the fact that a gluten-free diet helped. And do you guys think it’s reasonable to maybe be able to find a doctor that will be willing to do that? Thanks, guys. Love this site.
  10. Celiac.com 01/22/2018 - Celiac disease is marked by HLA-DQ2/8-restricted responses of CD4+ T cells to gluten from wheat, barley or rye. Currently, in order to properly diagnose celiac disease based on serology and duodenal histology doctors need patients to be on gluten-containing diets. This is a problem for many people, who prefer not to begin ingesting wheat again once they have adopted a gluten-free diet. This can present challenges for doctors attempting to diagnose celiac disease. It is known that HLA-DQ–gluten tetramers can be used to detect gluten-specific T cells in the blood of patients with celiac disease, even if they are on a gluten-free diet. The team set out to determine if an HLA-DQ–gluten tetramer-based assay can accurately identify patients with celiac disease. The research team included Vikas K. Sarna, Knut E.A. Lundin, Lars Mørkrid, Shuo-Wang Qiao, Ludvig M. Sollid, and Asbjørn Christophersen. They are variously affiliated with the Department of Immunology, Oslo University Hospital – Rikshospitalet, Norway; the KG Jebsen Coeliac Disease Research Centre, University of Oslo, Norway; the Department of Gastroenterology, Oslo University Hospital – Rikshospitalet, Norway; the Department of Medical Biochemistry, Oslo University Hospital – Rikshospitalet, Norway; and with the Centre for Immune Regulation, Oslo University Hospital – Rikshospitalet and University of Oslo, Norway. For their study, the team produced HLA-DQ–gluten tetramers and added them to peripheral blood mononuclear cells isolated from 143 HLA-DQ2.5+ subjects. There were a total of 62 subjects with celiac disease on a gluten-free diet, 19 subjects without celiac disease on a gluten-free diet due to perceived sensitivity, 10 subjects with celiac disease on a non-gluten-free diet, and 52 seemingly healthy individuals as control subjects. The team used flow cytometry to measure T cells that bound HLA-DQ–gluten tetramers. They then used researchers blinded to sample type, except for samples from subjects with celiac disease on a gluten-containing diet, to conduct laboratory tests and flow cytometry gating analyses. They also conducted analysis on test precision using samples from 10 subjects. They found that an HLA-DQ–gluten tetramer-based test that detects gluten-reactive T cells identifies patients with and without celiac disease with a high level of accuracy, regardless of whether patients are on a gluten-free diet. This test could conceivably allow celiac diagnosis while suspected patients are still on a gluten-free diet. The team notes that their results require a larger study for validation. Could reliable celiac diagnosis be done without making patients consume gluten? Will that become common? Stay tuned for more developments. Source: Gastrojournal.org
  11. Looking for advice and also to help those undergoing testing. I went to my general practitioner back in August with nausea, bloating, diarrhea, migraines, sluggishness, and a feeling of general unwellness. I was eating a gluten diet at the time. My doc ordered the dual antigen screen- it came back positive for celiac. He set up an appointment for me with a specialist. I called the specialist and they could get me in 8 weeks later. I asked the specialist if I went gluten free is this would affect any testing. They said “no” that I was in a gluten diet for so long I would be fine. However, 8 weeks later, the blood test showed no celiac- my results were normal after 8 weeks on a gluten free diet. I felt great, for me the turnaround was almost immediate- in a week or 2 I felt amazing. But that didn’t help with getting accurate results (mostly wanted to rule out another autoimmune disorder). I then went on gluten for 7 weeks (I ate a lot of gluten- like at least a bagel a day and much more on some days- I wasn’t messing around, I wanted an accurate diagnosis)and repeated the blood test at 7 weeks. It came back a very weak positive for deamidated gliadin abs iGg. I then underwent a endoscopy because the doc said that number, although positive, was not high enough to go off of. The endoscopy came back normal- however, the doc noted that higher levels of antibodies were found but not in the “abnormal range.” So, they were present, just not in crazy levels. I then kept eating gluten- I should note my doctors SUCK (could do a whole other post just on this- I have been my own doctor pretty much). I just took another blood test at 3 months eating gluten. My levels are now SUPER high for deamidated Gliadin abs IgG. The doc is confident I have celiac. Question is- my doc is so bad, I wanted to check here to make sure that it indicates celiac. I also wanted to help others as I know there’s lots of conflicting information on how long to do a gluten Challenge. For me, it took 3 months. My gut tells me I am early stage celiac- I don’t have full blown damage yet, but if I keep eating it I am sure it will do some damage. Just wanted to highlight this as if your case isn’t super bad yet, you may have to eat gluten longer- everyone is different. Any advice on my results would be awesome!
  12. Hi everyone! I'm hoping for some guidance on the gluten challenge. My doctor ordered the blood test, but doesn't seem to know much about it. Thus why I'm here. I've been doing a gluten challenge for two weeks now and I'm miserable. But I never really cut gluten out of my diet 100% before. I would occasionally have breaded chicken, soy sauce, a flour tortilla etc. maybe once every couple days or so. I starting really noticing reactions which prompted me to ask for the test from my doctor. I had been on a limited gluten diet for less than two months. I'm not sure why I'm so affected by it all of a sudden. So my question is, with the limited amount of gluten I was eating before and the short length of my limited gluten diet, could I be fine to take the test now? I really don't want to get a false negative. But holy cow I'd love to feel better again. Symptoms: diarrhea gas floating, smelly, hard to flush stool extreme fatigue (like I have to lie down within a couple hours of eating gluten, and lately I've just been in bed virtually all day.) I'm losing my hair! Depression. Also, I've always had problems with my digestive issues, but it's definitely gotten worse in the last year or two. Thanks for for your help! Alyssa
  13. Hi All, I'm new here, I was hoping that someone could help me out. I am currently being tested for Celiac disease, however I have been on a Paleo diet since Jan this year (the reason I noticed my rather unwanted reaction to wheat once I re-introduced it). However as I have been Gluten free (and feeling so good!) I now have to do a Gluten challenge for 6 weeks before my blood test. My symptoms are chronic Diarrhea, bloating and pain. I was wondering if anyone had any advise on how to ease the symptoms, I have a weekend this weekend and really don't won't to spend the whole time in search of a bathroom !!! Also from what I've read it sounds like I shouldn't stop eating Gluten in case I need a biopsy is this correct. For obvious reason I don't want Gluten in my diet anymore, being symptom free for a fair few weeks now and it's no fun having it all start again!
  14. Hi yall! New to this blog, but really glad it exists because I have lots of questions. First off, I'm Allie! I'm 17 and newly diagnosed Celiac after about 3 years of searching for answers. I initially went gluten-free on the recommendation of a friend, I felt better in about a month and then my pediatric gastroenterologist had me do the gluten challenge, and my symptoms were the worst they have ever been, and ones I barely noticed before became very present. I did the biopsy and was diagnosed, it's been about 2 weeks and my symptoms are still pretty bad, although my diet has no known sources of gluten or cross contamination. Wondering if anyone has any input on healing post gluten challenge, any tips or how long it took for you would be quite helpful! Thanks
  15. If I have been doing the gluten free diet for exactly 8 weeks now, how many weeks do I need to eat gluten daily in order to have an accurate blood test? How much do I need to eat per day? In August 2016 I had the ttg-iga blood serum test and got a 4.0 units on a scale where > 4.0 means antibody detected. I had the endoscopy in August and was told I have gastritis, duodenitis and intestinal metaplasia, but no villi flattening. Yesterday, I went digging in my health online health records and found one from 2012 (!!) that showed a ttg-iga serum test that I got 38.3 units on a scale of <20 is negative, 20-30 weak positive, >30 strong positive. I was still seeing my pediatrician and SHE. NEVER. SHOWED. ME. THESE. RESULTS. I had gone to her complaining of awful constipation, and was told everything was fine in the tests. Even my mom remembers being told the results were fine. It's clearly flagged bright red that I got a high reading four years ago. So now I requested to retest and get to the bottom of this! Any suggestions are welcome. I am tired of the health care system failing me. If anyone has a reco for a specialist in the greater philadelphia area, I would be interested. thanks!
  16. Hi, Has anyone experienced irreversible damage to brain caused by a gluten challenge to diagnose gluten ataxia? It is possible to have all the symptoms but no damage to your brain?
  17. 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?
  18. Well, after a nearly 14 week gluten challenge, I am finally going in to have my blood testing done today. Full Celiac Plus panel which tests every antibody plus the genetic testing... I wonder if I should eat a big ole bagel before I go in?? lol I know at this point it probably won't change things, yet for some reason I have the desire to gluten load before the test... I feel like I've been on this damn challenge forever and I'm excited/nervous to just get this testing done, and to feel absolutely certain it is accurate. Which sadly, you can never be absolutely certain of, as nothing is 100% perfect -- in testing, and in life! Of course, after the test today I have to wait another 9 days to see the gastro and get the results which will be brutal I'm sure. This process is not for the impatient!
  19. IMPORTANT: I trust my doctor, I am willing to answer questions, but I want you all to know that where I am in the process of getting a diagnosis requires me to have an endoscopy- a positive blood test in my situation does NOT give me all of the information the doctors need. With that being said, here's my story... This past Friday was the end of my eight week gluten challenge, a blood test, and another day in the land of waiting around for a specific diagnosis. I am here to tell you that I am sick and tired of feeling sick and tired, but only one biopsy was taken at my endoscopy in the summer, so I get to repeat the process of another endoscopy on February 19th, 2015. However, there are a couple pieces of GOOD NEWS that I want to share with all of you. 1. I got my blood test results today and there is no question about it- I tested positive just like before. Why is this good news, might you ask? I was told that if the test wasn't positive "enough", I'd have to keep eating gluten until I returned to being positive so that I could have my endoscopy. Before, I had been five months gluten free, so the last eight weeks were awful physically, emotionally, mentally, and even socially. So I'm so happy to be headed towards an actual label of a diagnosis that I can DO something with to feel better. 2. I did NOT end up in the Emergency Room YAYYY . ( There were several panic attacks, many bouts of stomach pain/problems, and my depression/anxiety skyrocketed during the eight weeks, fatigue was over the top, and this will continue to be the way it is until after the endoscopy because I MUST eat gluten to get an accurate biopsy/sample, but I'm just SOOO happy to have made it this far! ) 3. I am my own advocate for my health. It was April of 2013 that things first went haywire, but I will not give in or give up until I feel better and get a diagnosis! Thank you for reading. Feel free to comment here or instant message me if you do not feel comfortable with posting to the public forum. I invite anyone and everyone to ask questions, partially because I enthusiastic about helping others in any way I can, but also because I need to pass the time until my endoscopy Good luck to everyone on their own individual journeys~ Val
  20. Hello, I finally decided to get screened for celiac disease after many years of suspecting I have a gluten intolerance or sensitivity. Over the last year I have become much more intuitive in my eating, and have scaled way back on gluten because of how I felt after eating it. Still, I did not strictly avoid it or completely eliminate it -- I simply didn't make it a staple in my diet. But after finding out I have a family history of celiac disease, I decided it would be better to know for sure if I really need to fully eliminate it. If I'm simply sensitive or intolerant, I will keep on eating like I was, but if I have celiac disease I would not want to be unwittingly damaging my body. Since I wasn't consuming a ton of gluten, I decided to up the ante for the 2 weeks prior to my blood test and eat a bagel every morning and a sandwich or pasta every night. Well, after a week of this challenge I feel absolutely terrible: tired, bloated, foggy. I can't wait to go back to the "gluten-life" diet (or, gluten-free if necessary) I was consuming before I undertook this endeavor to be tested. I saw my doctor today and she ordered "Celiac Disease Panel, Adult - Q15980" through Quest Labs and I am going on Monday for the blood draw. But a friend who has celiac told me to make sure they test all 47(?) markers, not just the 2 main markers? I am not sure what that means, but now I'm worried the doctor didn't order all the possible tests, and this screening process will drag on and on... So my questions are: 1. What tests specifically do I need to ask my doctor to order for a COMPLETE blood screen? 2. How much gluten do I need to be consuming daily until testing is complete? I was not on a gluten-free diet, but it was sort of "gluten-lite" in that I did not consume gluten every single day or in large amounts. So for the last 2 weeks in preparation for the test I have been eating 4+ pieces of bread a day -- and feeling like hell Is this much necessary? I don't know if I can keep it up until a possible endoscopy. 3. Should I just schedule an appointment with a gastroenterologist now anyway? If I don't have celiac, I have some sort of gastrointestinal problem that is causing me symptoms, so I would need to see one anyway I would think and perhaps then it will speed up this testing process... Thank you in advance to whoever has the time or expertise to answer any or all of my questions! This forum has been tremendously helpful during this often confusing and (sometimes terrifying) process
  21. Hello everyone, this is my first time posting, but I've really learned a lot from these forums and they've really helped me get through the past year. Skip to the bottom for my question, but I thought I'd give a little background. My story definitely isn't as bad as some. About a year ago I started having some GI issues following a mild virus and through trial and error I figured out that I seemed to do well if I avoided wheat. At first I thought it was a FODMAP thing, but that didn't really pan out. I was gluten free for about two months before I thought it might be good to get tested, my well meaning doctor said a one week gluten challenge should be enough to give me antibody levels. I have no idea if two months is long enough to wash out your antibody levels, but if it is, I know one week certainly isn't enough to bring them back up. (I also wonder if it it's possible that my celiac, if its celiac, was in really early stages, so I might not have built up enough antibodies in the first place for it to be detectable.) Anyway, the test came back negative and I decided to keep avoiding gluten because that one week of gluten made me feel awful, my avoidance isn't perfect though: we didn't clean out our kitchen, and I never worried about cross contamination. Fast forward a couple months, I was still having some GI problems. I've developed what would later turn out to be an ulcer, I've got chronic alternating constipation and diarrhea (super fun: I wonder which one it will be today?) and never mind the bloating and gas. I finally got an appointment with a GI doc (if anyone needs a recommendation in the Ann Arbor, MI area this guy is AWESOME and totally worth the wait). He ran a bunch of tests checking for autoimmune and inflammatory markers, as well as a couple hydrogen breath tests. The only things that came back were that I'm lactose intolerant and my liver enzymes were elevated. Because of the liver enzymes were up, he had me get an ultrasound, and my liver is fine. My ulcer pain was still pretty bad so he did an endoscopy. They found the ulcer, but it didn't look to bad and appeared to be healing, and I had intraepithelial lymphocytes in my gut (I believe this correlates with MARSH stage I on the celiac scale, but it's not exclusive to celiac). Skip forward another couple of months, I've been taking omeprazole and the ulcer pain is mostly gone, but I still get GI distress often enough that exercise is out of the question (which is driving me nuts) so I send another message to the doc. He repeated a lot of the blood tests. Nothing unusual, by liver enzymes are back to normal, but he decides that he'd like to do a colonoscopy to rule out occult crohn's (crohn's that doesn't act like crohn's). Then he said (and I love the language here), "While we're in there we might as well do an endoscopy and see how that ulcer is healing." So I've got a dual procedure coming up May 1. I'd been wondering if maybe my previous celiac test results weren't really valid, so I explained the situation to my doc (that test had been with a different doctor), and asked if he thought I should do a gluten challenge before the procedure in order to really rule out celiac once and for all. I'm worried that incomplete adherence to a gluten-free diet may be responsible for my continuing problems. He thought that was a great idea (I LOVE this doctor. He LISTENS), and just to be sure, ran a celiac genetics test on me. That came back positive for the predisposition so I embarked on a six week gluten challenge. I did not realize how amazing I'd been feeling until I started eating gluten again. I'm in graduate school, and immediately pre-gluten challenge I was working 12 hour days and feeling good about it. I was feeling clever and productive and I thought I'd just finally hit my grad school stride, or the end of winter was having a positive impact on my mood. Then the gluten challenge and I'm back to the days where I schedule my experiments so that I always get done by 5, because the thought of staying later is agony. So no, It's not that I finally developed the mental fortitude or the drive or the motivation, it's that I was finally healthy enough for those things to come out of the closet. So: my symptoms that I've noticed since it all began. Did you know that it's NOT normal to get a headache EVERY day? I DIDN'T. Not until I went gluten free. Once back on gluten I get a low grade headache at least once a day. For the first week, it was constant. I've also had a lot of aches and pains: arthritis-like pain in my knees, hands and shoulders. Strange muscle spasm/cramps in my neck that would require me to lay down for a while until my muscles had calmed down. My hamstrings hurt like I've been working out, they feel super tight. I even got a super fun and mildly terrifying chest pain that radiated up in to my face when I breathed. It was short lived, only once or twice over a couple of days, but from what I've read I'd guess that it was pleurisy (inflammation of the chest lining around your lungs). Also, pretty sure my hair is shedding faster than normal, but that might me all in my head. If I eat my daily dose of gluten too close to bed time, I can't sleep because I feel like I'm going to vibrate out of my skin. Best way I can describe is that it seems like restless legs syndrome, except it's "restless whole body". Then of course there's my stomach. I don't have diarrhea persay, but I do have to make multiple trips to the bathroom a day. I feel the desperate urge to go, but barely anything comes of it. I'm ridiculously constipated, constantly bloated, and occasionally I get stomach cramps and/or nausea. And I'm gaining weight like it's nobody's business, which I DO NOT need. The aches and pains were the worst early on in the challenge, though they came back yesterday and I felt like I'd been hit by a truck (maybe I gluten OD'd?). The stomach stuff didn't get really noticeable until about two weeks in. Exhaustion and brain fog has been ongoing and unpleasant. So finally, to get to my question: does anybody else get random symptoms who's only common thread is inflammation? Does gluten just seem to trigger inflammation all over? Anybody have any ideas? Thank you! Two more weeks of this. Celiac or no, I know that I'm cutting gluten out of my life and I am EXCITED. Or I would be if I could get up the energy.
  22. I'm in the last week of an 8 week gluten challenge, my endoscopy is on Wednesday and it could not come soon enough. I have managed okay, the worst of my symptoms being anxiety and truly horrible brain fog that has steadily gotten worse and worse. But anyway a few days ago I got what I think is a new symptom from the gluten, and being that I am feeling very paranoid I wanted a little reassurance. I had restless leg syndrome as a kid and again in my mid-teens, but it had mostly gone away and for the past two years would just pop up for a few hours three or four times a year. When I would get it was like a buzzy, itchy-under-the-skin feeling in the bottom of my feet and in my calves, and it would keep me awake because it felt so awful to just lie there. So now I have that, only it's everywhere. In my feet, in my legs, in my shoulders and hands and arms and even in my stomach. It's making me feel really hyped up and anxious and completely crazy. It's not constantly there, it kind of comes and goes but it is there probably 70% of the time. Has anyone heard of this? Is it just another awful side effect that will fade after I get off the gluten? I'm so close to being done, I can hold out for another five days but I'm a bit of a hypochondriac and I was hoping someone else would have some helpful input. Thank you!
  23. Hi, firstly I would like to say what a great website this is with so much useful information. My 17 year old daughter has had so many health issues over the past few years with so many doctors appointments, tests etc but still no diagnosis. I won't list all her symptoms as they are so many but she is feeling so depressed at being sick all the time especially when people make her feel like it is all "in her head". We suspect it may be Celiac disease and she is due for a gastroscopy in two weeks. Her doctors had always discounted Celiac as her blood tests were negative. However a new doctor said she still may still have it and a biopsy is the only way to confirm it. As my daughter suffers severe anxiety she did not want the biopsy so I suggested to her to try going gluten free for a while and see if she felt any better. If the gluten-free diet did help then she could get the biopsy. Well she did start to feel a bit better so I booked the gastroscopy. What I didn't know was that going gluten free for two weeks could affect the biopsy result so she was advised to eat gluten for six weeks before getting it done. Well it has now been four weeks and she feels horrible every day and just wants to stop eating gluten even though she loves bread. If going gluten free makes her feel better does it matter if she gets a diagnosis of celiac disease confirmed? If the biopsy is negative she may have NCGI so will have to go off gluten anyway. Or are we better just to stick out the next two weeks and find out for sure. My paternal grandfather had celiac disease as does an uncle and cousin on that side of my family. My daughter's paternal Grandmother has NCGI so I also wonder if she should get a genetic test but I don't know much about these. Any advice would be greatly appreciated.
  24. History: A little over a year ago I was diagnosed with Celiac Disease by EGD/biopsy with no prior hint that it might be Celiac. Over that year, I ate strictly gluten free and my symptoms improved but did not completely go away. I decided to get a second opinion last week and the new GI says that there is nothing in my file that indicates that I have Celiac. So, I am doing a Gluten Challenge and then getting blood work (for the first time on gluten) and a new EGD. Question: What can I eat on a Gluten Challenge? The new doctor said that I should eat one to two slices of white bread a day. Well, I've been ignoring that and eating all of the gluteny foods that I have not been able to eat for a year. I have not been going completely overboard, but trying to stick to what I think is one to two slices worth. I'm also sick: diarrhea, naseau, cramping, fatigue, and depression. So, today I clarified with his office, what can I eat, can I substitute other things, like a wheat tortilla, and they said no. Well, I am more than just a little angry. I have to be sick and in pain and yet I can not eat things that I at least enjoy/miss/crave? So, I would love to hear what your experiences are on Gluten Challenges and if anyone knows why it would be only white bread that I could eat?
  25. Hello everyone. I have just started the gluten challenge for a biopsy. I have been eating gluten on and off for several months, but prior to that I went gluten free (at least most of the time) for a couple of years after discovering that gluten/wheat is the cause of my lifelong eczema/dermatitis. At that time I had a blood test which was negative for celiac, but positive for the HLA DQ2 gene. I was not on the gluten challenge at the time, but I wasn't entirely gluten free either. As well as eczema, I have been bloated with IBS issues since my early teens and have had numerous neurological issues, chronic pain and vitamin/mineral deficiencies. My question is: do you need to be on the gluten challenge for the blood test to be accurate? I understand that not eating gluten at all will affect the result, but do you need to eat the required level of gluten on the gluten challenge for the blood test? Or is that just for the biopsy? I have been eating some amount of gluten almost daily for a couple of months, and I feel horrible with much worse gastrointestinal symptoms than I have ever had, which is why I felt that I might as well keep it going and get a biopsy so I can stop guessing. Can I get a blood test now, or do I need to be on the gluten challenge for longer? Thanks for your time