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Found 15 results

  1. Warm Greetings... I'm seeking support or advice, as well as some words from the wise. D-day has come: I'll receive my diagnosis in about 4 hours. I've known for a few months now that Celiac disease is likely the culprit to what ails me, so this isn't new news to me. I should feel relieved. Yet...I'm suddenly feeling sad, anxious, and overwhelmed. I've been soooo, soooo sick for over a year now (on top of having a very rare debilitating condition called Isaac Syndrome...AND other crud). I'm beyond ready to reclaim my life! Like every other one of you beautiful people who are part of this pristine community known as Celiacs, I went through a host of testing; the last of which was the endoscopy w/ biopsies. After said endoscopy [and whilst showing me pictures of my innards], the doctor informed me that I have celiac sprue and all sorts of other fun G.I. issues that I was completely oblivious to. He explained that in spite of the appearance of my duodenum, a Celiac diagnosis couldn't be affirmative until the biopsy results were in. Being one who always puts her infinite wisdom to good use (snicker, snicker), I decided to view my biopsy results online, reasoning that it would give me a chance to better prepare some questions for the specialist. Needless to say, that may be what cost me this night of sleep. I absolutely, positively have Celiac. I was perfectly fine knowing that this was a very high probability just yesterday. So why am I upset? I've had months to come to terms with this and be ready. Yet something about confirmation made me have what the docs may call an 'adverse reaction.' There's no logic behind this (my mental state of angst). Okay...now that you've made it this far, I pose the same question I entitled this post: If you could go back to the day you were diagnosed, what is some advice that you'd give to yourself, knowing now what you didn't know then? Any advice would be appreciated as I'm truly stressing out. Thank you! ~ Shann
  2. Hey, I was wondering if any of you knew - when you eat gluten when you have Celiac, do you take in the calories from the food? Before I was diagnosed, I was extremely malnourished because my body wasn't absorbing vitamins, but does the body absorb the calories? If so, how is so much weight loss possible?
  3. Hello everyone! I am new here. I went to urgent care for nerve pain last week (hands and feet going numb, tingling, burning etc) My doctor did not want to see me and told me to go to urgent care. I thought the pain was caused from my back because I have a ton of back problems. Anyway, at urgent care the doctor asked if I have celiac disease. I said "No but my grandma does." she straight up said "you have it." no tests nothing, but she has it and said my symptoms reflect the disease. Anyways it makes sense to me and I think I might have it. I have a lot of symptoms and I would like others input. Here is a list: I am a 24 year old female. I am average weight and height. Migranes every day since I was 14. I had to get a cat scan after I fainted in class. They found nothing and put me on meds that didn't work. When I was 15 I had anemia. At 16 I was vitamin D deficient. I got blood work done a few months ago and no longer have anemia After that I had terrible anxiety and depression. Put me on meds that didn't work. Back problems for no reason (started when I was 18) herniated disk, multiple bulging disks, my disks are loosing fluid, scoliosis, Stomach problems, 2 years ago I started to feel nauseous every day, worse in the morning, I'd dry heave every morning or puke. Some days I'd puke up bile. This is still going on. They ran tests on my liver (high liver enzymes and fatty liver) and a gallbladder test, came back normal. I go poop 5-10 times a day. The stool is always loose. Once in awhile it is solid. Sometimes I go so much, when I wipe I start to bleed and it is painful. I have 3 breaks at work, I go before my break and right before it ends. Its embarrassing. So some days I go number two at work 6 times in one day! I always feel like I am on my period, I have skinny days where I can wear a size 9 but somedays for no reason I swell up and my size 11 pants are tight and hurt because my pelvic area is tender. I had an ultrasound, they found one cyst. A few months back I lost 15 pounds in two weeks, I could barely eat I felt so sick all the time. Then a few months later I gained 20 pounds in two weeks. I till wasn't eating. I went up multiple sizes and it just hurt. I never have an appetite. I started to get a random rash, my scalp itched, my knees and my elbows. It went away it was just weird. It lasted about a month and my doc said it was ecsema. Now I can't loose the weight. I am vegetarian, tried working out but can't loose anything. (by working out I mean walking. I literally don't have energy to do anything else) I get puffy eyes. Bad allergies, and sinus pressure every day of my life. On allergy meds that kinda help. I noticed a lot of these symptoms get worse after I eat gluten. I just started keeping track after the doctor mentioned this. I also have just been getting nerve pain, my arms and legs cramp up, my feet cramp up and get stuck, my hands and feet go numb, tingle, and BURN. I am tired all day every day even if I sleep 10 plus hours. Everyday I feel like I lifted weights and did full body work outs and everyday I feel hungover even though I did not drink any alcohol. I get tired from folding laundry and can barely function. All I want to do is lay in bed. Some days I drink 5 cups of coffee and an energy drink and I'm still tired. I also have brain fog and bad memory problems lately. I am messing up at work with the way I feel. I literally feel like my body is telling me something wrong. Sometimes my body aches so much I think I have fibro or (cancer) thats really how bad I feel. One day after my legs were cramping all day I had weird red patches all over my legs. I was freaked out. Any input would be great. Of course having celiac would suck but I feel so bad every day an answer to my problems would be amazing. I can't keep living like this. I noticed after I eat gluten, about an hour after, I feel depressed for no reason. Sometimes I cramp up and my stomach is tender. I don't know what to do.
  4. Teresa811

    Sore tongue and nose

    Hi been diagnosed as cealiac over 2 years ago at present have very sore tongue and ulcer like sores end of my nose any advice how to clear these up creams etc would be fab
  5. I have had a multitude of symptoms for an extended period that have seemed to get worse throughout the past year including: constant fatigue, severe migraine, inability to concentrate, "brainfog," unmotivated, poor mood, diarrhea/constipation, hemorrhoids, etc... for about 6 months I eaten very little gluten. When I eat no gluten for about 1 week, nearly all of these symptoms go away until I eat bread or oatmeal or other gluteny foods. I had a blood test for IgA, TTG, IgG, and TTG IgG Quantitative; all of which returned a negative Celiac diagnosis. BUT, I hadn't eaten gluten for about 2-3 months before this test. I also had an ultrasound which showed a prominent gall bladder and have bilirubin levels at 2.6 with a standard range of .2-1.3. I am seeing a GI next week seeking answers to try to feel normal again. Do you think I may have Celiac, or is it worth testing? Testing would likely mean going on a gluten challenge... Any insight would be very helpful!
  6. Hi everyone, I'm new to this forum (and diet) & have been having a lot of trouble trying to find foods I can eat based on the results I recently received after a food intolerance blood test. Google isn't helping me answer all my questions, and my naturopath is on vacation for the next 2 weeks, so I was hoping some of you informed folk could help? My main intolerances include: Dairy (cow, sheep, goat, casein) Barley & wheat - (I am OK to eat gluten, durum, wheat bran, buckwheat, millet, rye, oats...) Pea Corn Potato Rice Cashew nut & pistachio Yeast (brewer's) - baker's is fine Bean (Red Kidney & White Haricot) Egg white - (egg yolk is OK, and baked eggs are fine) Orange Cabbage (Savoy/White) Mustard Seed The odd thing is, I am okay to eat gluten (gliadin) itself, but eliminating wheat from my diet puts me on a gluten-free diet. Does anyone know what kinds of flours are appropriate substitutions given my intolerances? (ie, sorghum, quinoa, semolina, spelt, etc.). Most places use rice, potato or corn as substitutions, all of which I think are safe to say I cannot have. My list of questions of what I CAN eat, if anyone can help answer their groupings or categories: Baking powder corn syrup, rice vinegar, sweet potatoes/squash lima, black, pinto, mung beans & chickpeas quinoa & farro It's been difficult trying to create a diet and figure out places I can safely dine out without having to worry. Thanks so much for your help. Cheers! A
  7. Hi guys, I am newly diagnosed celiac. I found out about a week and a half ago, and have been gluten free for 5 weeks (I stopped after the biopsy was taken). I never really suspected celiac, so it was quite a surprise, but when I started reading about it it made a lot of sense in terms of symptoms etc. I am 34 yr old female, my main symptom was lack of energy for as long as I can remember, blood tests only ever showed low iron (not quite anaemic) but supplements never made a difference (now I know why!). For the last 5 years I have also had constipation, bloating and gas, but I put it down to stress or bad diet and if I am honest because it was a bit of an embarrassing issue to talk about I became complacent. As this is all very new to me, I feel like I have so many questions so thought I would put some here and if anyone has any input or advice from their experience that would be great! I will probably also post more in depth questions in the relevant sub-forums - For those in the UK, how long did it take you to speak with a dietician. The letter with my diagnosis was sent on 12 April and said I had been referred but I haven't heard anything - I am interested to know whether other celiacs/strict GFers ever eat foods which say "may contain traces of..." or "made in a factory which processes...." etc. So far I have avoided anything which says "may contain" or "not suitable for celiacs due to..." but I did eat something which said "made in a factory" (Walkers crisps) as they were the only option but then I felt guilty after! - What procedures do you take when eating out, i.e. do you only go to places which are certified by Coeliac UK (if you're in the UK), do you find speaking with the waiter etc actually helps? I have eaten out a few times since being gluten-free and feel like I am being a bit difficult when I bring it up and that they don't really understand. I am lucky to be in London so there are lots of certified restaurants, but even in Pizza Express I didn't think that the waiter really understood. - For those who had energy/tiredness problems before, how long did it take you to notice a difference? The only difference I have so far noticed is I am now more regular toilet wise and have had very little bloating/gas. - I have always had low iron which is most likely due to celiac but also as I don't eat meat (I do eat fish), I am hoping now that iron supplements will help now so have been taking the gluten-free Floradix for the last week. Anyone noticed a difference in this after stopping gluten? Thanks anyone for taking the time to read, and feel free to put any general advice you have Rachel
  8. Hi guys! I'm new to the site - apologies if I'm posting in the wrong place or something Female, 18, diagnosed about 4 years ago now. I was a completely silent celiac, and while I had problems with other foods, pasta and gluteny foods were pretty much the only thing I trusted to not cause me any symptoms. Obviously I was very wrong, and I've been keeping gluten free ever since! However, a couple months ago I started having some pretty odd bowel movements. (Here comes the tmi stuff, I'm sorry in advance..) At first it was constipation, and when I did poop it was small, loose, floating, greasy, and yellow. I was also having some upper abdominal pain so I thought it was a liver problem and got checked out - doc said my liver felt inflammed but an ultrasound showed nothing was wrong. Then after a while ito became more solid and less greasy again, but the switching from constipation to loose floating and non-floating stools remained. I still experiended a lot of yellowish mucous however. Now, the last few weeks, they'very turned much much paler. Sort of a light beige-grey. The yellow mucous is still present. I've been having intermittent abdominal pain as well. Both near my liver on my upper right abdomen wrapping around a bit to my back, and a little further down on the left side just above my hip bone. I've also had quite a loss of appetite, and I have nausea that comes and goes. Today, it's sort of turned into a pale yellow/grey mush... there is still yellow mucous present. My stomach feels rather sick, but it doesn't feel like a flu or anything like that. I'm not going to the bathroom all that frequently, but again it's either a constipated feeling or an urgent need to go, back and forth (though the stool is always soft). Sorry about the grossness of all this. Basically, I was wondering if it's possible that I haven't been careful enough recently? Even though I never had any symptoms from gluten before, is it possible that I'm being contaminated somehow and it's causingredients all theset symptoms? I've also been incrediblyou fatigued and weak for the last few weeks but I'm not ill in any other way. And i've been drinking plenty of water. I should also mention that my other food problems don't cause this stuff either. The other intolerances cause severe pain that starts in between my lower ribs and then just kind of spreads throughout my whole body, makes me very very weak and lethargic, makes breathing pretty difficult due to pain, causes my whole abdomen to swell, and lasts between 1 hour and 8 hours. (Triggered by any green vegetables, leafy or not, as well as bananas, pineapples, tofu, lentils, and avocado. I'm also a pescatarian) Anyway... thank you for taking the time to read through this, and any advice would be very much appreciated. I'm getting pretty concerned, and, though I haven't checked, I seem to be losing quite a bit of weight. It's just so terrible to feel so weak and sick all the time, every day... I'm glad to be part of the site now, though! Thank you!
  9. Hello everyone, I'm new to this website but I know that people have surely asked similar things on other pages but I couldn't find any forums with exactly the same thing. I am 21 and about 2 years ago now was when I self-diagnosed myself as celiac/gluten sensitivity. Before that I had been having EXTREME stomach pains in the upper left hand side of my abdomen, that came along with vomiting most of the time and it hurt every time I ate for days after that. I had two friends at the time with diagnosed celiac and they seemed to have had the same pains as me. I was going to do the elimination diet at the time but felt so much better after a month that I didn't try to eat gluten and haven't since. I have had the stomach pains a few times since then (3 time in 2 years, and before I was getting them at least every month or so). Each time I had these stomach pains there seems to be an explanation that included gluten. Well 4 days ago I had a reaction and I can't think of anything that I ate that could've possibly had gluten in it (I only ate at home). My question is, can people who have been through similar things give me some advice? What should I do? Should I try to go to the GI and get advice? I've been thinking that I should try to eat gluten for a day and see if I get that stomach pain? Does that stomach pain sound familiar? I guess I also hate the idea of having to always be a nuisance, I just picture myself on my honeymoon or a nice relaxing vacation having to ask for the staff to make me something gluten free and I guess I kind of hope that I misdiagnosed myself.. Is there anyone on here/anyone who knows someone that this has happened to?
  10. beachbum

    It's Just One Cookie!

    My first blog takes me back 5 years ago when my youngest daughter started her freshman year of high school. She had been diagnosed Celiac for 5 years at this point, by now I was sure my daughter had come to terms with her restrictive diet. She was happy-go-lucky Madeline, ever smiling, always positive, living every day with joy. Little did I suspect that the social acceptance of being a young gluten-free teen was secretly troubling her and it was about to burst forth in a profusion of tears and sudden flight from her classroom. All because of just one cookie! Nobody wants to read the minutiae of a teenager's day, so I will sum up the event. Choir class of 100 students, dozens of cookies left over from an evening event, the class is all offered cookies. A hundred girls each enjoy one delicious cookie while one girl sits among them with nothing. Madeline politely approached the choir teacher and asked if she could get something from the choir store since she couldn't have a cookie, at which the teacher replied, "Madeline it's just one cookie!" [insert gushing tears and dramatic stage right here] Two class periods later, the oldest sister, Claire, enters the choir room. Claire is a gifted singer, little miss detail and unofficial teacher helper…she is also a Celiac. The choir director is concerned about Madeline's meltdown and speaks to Claire asking if her little sister is always so emotional over things as insignificant as "Just One Cookie". Claire's response is spot on. "Sir, you don't understand, its not just one cookie…its one cookie yesterday, one cookie today, one cookie tomorrow, and the day after that and after that and after that…it will never be just one cookie for her!" Four years later at Madeline's graduation party, one of her fellow graduates (also a Celiac) came up and hugged me and said. "Mrs. Wilson I have been looking forward to Madeline's party all week because I knew you would have Gluten-Free cake. This is the only piece of graduation cake I will get to have." Wow! She, too, was longing to fully participate, to have the same experience as everyone else. All I could do was hug her, congratulate her on her graduation, and ask if she would like me to wrap up an extra piece for a rainy day. Over the years I had gone to great lengths to ensure my girls were fully included in sleepovers, cookouts, and pizza parties because sharing food and drink is the most common form of social ritual, an intrinsic part of feeling included. I found that when it comes to a gluten-free lifestyle, its never been about "Just One Cookie".
  11. Hello everyone!! Still on my journey to figure out what's going on with me! I've had a positive gliadin IgG test, negative gliadin IgG, Negative tissue transglutaminase IgG/IgA... Negative biopsy, it showed inflammation and lymphocytes infiltrating the epithilium but no issues with the villi... After I went gluten free for a month and felt great... Reintroduced and all my aches pains and respiratory issues came back I didn't think I had any GI issues but when I reintroduced I realized it made me constipated.... Now I had the genetic testing done and my HLA-DQB1*02 and HLA-DQB1*03:02 were negative but HLA-DQA1*05 is positive. Report says this is rarely observed in individuals with celiac and that it is only mildly supportive of a clinical diagnosis of celiac disease..... I know I should just go gluten free cause it makes me feel better... But I would have really loved a yes you have this or a no you don't
  12. Ok for those of you who do not know me I travel a lot. So from time to time I accidentally ingest gluten in one form or another. For instance I found out today that Sodium Starch Glycolate is technically gluten and can cause a full reaction in someone who is as sensitive to it as I am. Thanks to #glutenfreeinsc post I now know what I was getting in my diet that was causing a reaction. So I've decided to start trying different things that can help me either get better faster once I ingest gluten or reduce the reaction if taken daily. Keep in mind that I am a little bit eccentric at times. Tral 1: zGlutn by systemic formulas I decided to eat a slice of bread and take 4 pills at the same time. I know this is insane but I wanted to know if it worked. So I ate the bread during lunch and told my boss that If i didn't make it into work the next day I was probably dead... The next two hours: a little cloudy feeling but not very severe. And no GI issues. That evening: Kept working and didn't feel very cloudy but had to pace myself. I was a little tired but still no severe reaction Went home and went to bed after a light dinner. My stomach was growling a bit but no pain and no noticeable diarrhea or nausea. This was a surprise to me since I always feel very sick, get stuck in the bathroom and can't think straight after I get gluten. I also get a rash around my mouth. I know that's gross but you understand my plight. Next Morning: a little bit of a hot feeling in my stomach but nothing too bad. I felt a little bit cloudy but still functional. Worked through the day no problem except for a two trips to the lavatory. Conclusion: helped a ton. Wouldn't recommend trying this at home because it wasn't a cure but if you get gluten by accident it can reduce your symptoms dramatically. I've been taking it every day and it seems to be helping. Has anyone else tried this product? I got it from a nutritionist. Iang if anyone has a product that works for them as vitamin I want to try it. apparently ciliact is terrible. I'll keep trying supplements and diets and keep you guys updated.
  13. Hello! I am a 19 year old girl who has been dealing with stomach issues for years. However, recently it has seemed to get worse. I have always thought I had a little bit of lactose intolerance, so I stay away from milk usually and take lactaid when i do. I started adderall at the beginning of the summer, but this has been for years. I have always had frequent bowel movements, but in the past two years it has gotten worse. I must go to the bathroom within 10 minutes of eating. I often pass just small stools, usually with mucus or just small fatty stools. I have lost about 30 pounds in a year or so, and have little appetite. I do not know if that is from medicine or something else, as it started before the medicine. I have always had "brain fog" often forgetting what i am saying half way through a sentence, and forgetting things short term VERY often. I have diarrhea alternating with constipation, and can sit on the toilet for a while before even producing a tiny stool. I have always been very fatigued, blaming it on being a college student, but it gets to the point where i dont want to do anything. I am on zoloft for anxiety and depression, and this is not helping. I spend all day on the toilet or waiting to see if I need to use the bathroom. I also urinate VERY often and have issues sleeping or doing anything if I have not immediately before used the bathroom. Please help and let me know if anyone thinks this looks like celiac! I now can eat pretty much anything and not gain weight, but have little appetite usually. My stomach constantly gurgles and rumbles, as well as constantly having small mouth sores for a large part of my life. My menstrual periods are irregular lately, and it is just all over really not fun. Please help me stop this. symtpoms- mucus/liquidy stool or diarrhea alternating with constipation frequent small bowel movements and urination 30 pounds weight loss no reason no appetite depression irregular menstrual periods rumbling of stomach mouth sores lactose intolerance
  14. Hi everyone, I've been on a gluten free for over a year now and for the most part am doing fine...except on the rare occasion when I accidentally gluten myself. Does anyone else get a severly itchy scalp after ingesting gluten? It is so hard for me to sleep during one of these episodes because all I want to do is brush/scratch my hair. I also feel like my sleep when I'm glutened is similar to how one sleeps when really, really drunk (passed out, weird dreams, don't feel rested, really thirsty when woken up). Does anyone have advice for how to deal with this better? I just try to drink tons of water and pop a Zyrtec.
  15. Let me start off by saying I am a 22 year old undergrad student that is at her wits end. I never had any type of intolerances growing up, not did i have food allergies or sensitivities. In 2008, I experienced a sever case of food poisoning from meat and have been on this roller coaster ever since. The first year and a half after that occurrence I lived off of fruits, veggies, tea and oatmeal. The pain I felt was constant and included both constipation and diarrhea. It was as if my body didn't know what to do with the food I ate. I started working out to build muscle mass since I had lost so much weight and got used to not going out with friends since I couldn't eat anything. I've had a colonoscopy, endoscopy, and a biopsy of my intestines. Normal results. I've tried every OTC medicine for gas, heartburn, indigestion, ect. and have been on a few prescribed such as dicyclomine Eventually I began to feel better and the pain and episodes got farther apart. Well, that leads me to where I am today. The episodes of abdominal cramps and diarrhea have gotten closer together and for the past 3 weeks I've been scared out of my mind because I don't know what else to do. symptoms are as followed: gas bloating constipation diarrhea lower abdominal cramps nausea chest pain fatigue headaches anxiety (idk if this is related) My boyfriend's bio professor suggested I try a gluten-free diet to see if there are any changes. He suffers from celiac himself and said if I do turn out to have a gluten allergy but let it go untreated I run the risk of facing long term affects from possible damage. ooOO and i don't have insurance, and won't anytime soon. I'm gonna try this thing for a month and see how I feel. I'm relying on the web to educate me about what i should avoid eating because I have no experience in this. Any advice or suggestions are greatly appreciated. it's very frustrating and depressing at times to feel like my life is so limited. I don't care about weight or calories, all I want to do is enjoy food like everyone else without considering the consequences and pain i'll be in later. I'm open to anyone who wants to reply. I suppose I just want to feel like I'm not alone.