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About Lissa

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  1. For me the DH, when it wasn't covering my body, was concentrated for years just where yours is, on the inside of my joints not the outside.

    I notice in your avatar there is a horse. Are you being very careful when feeding and grooming him? Are you avoiding gluten in topicals? We also have to drop iodine from our diet until the lesions have healed and the antibodies have left the skin.

    I do own a horse, but I board him at a farm and I only get to see him once a month because of my school, but I am very careful there. And as for topicals, when the lesions showed up, I doublechecked everything I put on my body for gluten and so far...nothing. But I feel better knowing that you had DH on the inside of joints! Thank you.

  2. Hi all,

    I am a frequent lurker and infrequent poster. I've been gluten free for 5 years, and since then, I've only consumed gluten a few times, mostly through cross-contamination and never intentionally. I was never officially diagonsed with Celiac - by the time I had the blood test, I was gluten light and by the time I had the biopsy of my bowel, I'd been gluten free for a full year. My GI doctor told me that positive response to the diet was enough to say gluten intolerance and to stay gluten free, so that's what I have done.

    As the years go by, things have gotten a little funny. I have a ton of seemingly unrelated conditions - gluten intolerance, poly cystic ovarian syndrome, adie's tonic pupil, recurrent benign osteochondromas (been removed twice), gallstones (had gallbladder removed a few months ago) and finally, I'm missing 9 adult teeth (fixed by placing implants). I also have some other things going on with cholestrol levels, etc. It's been suggested that I have a underlying autoimmune disorder connecting everything but my doctors have never been too concerned with connecting everything, so neither have I.

    However, recently I've been developing some nasty symptoms and a family member (who has Celiac) suggested that it seems like I'm in an autoimmune crisis. First off, I've been exhausted and sleeping excessively to make it through the day, anywhere from 10-14 hours a night and then usually a 2 hour nap during the day to make it through. It's been getting worse and worse - I almost failed out of school this year (I'm in university) because I was too exhausted to get to my classes. Also, I get this intense flush across my cheeks which actually resembles the butterfly rash from lupus, but I get hot all over and super super red, like I've been wind burned. Finally, this rash has been showing up, which is kinda like the nail in the coffin (you can see pictures in my photobucket):


    Is this dermatitis herpetiformis (excuse my spelling)? It's on the inside of my elbows, although I had similiar (but smaller) lesions all over my trunk/stomach about three weeks after my gallbladder surgery and it lasted a solid month or so. From what I've read about DH, it's found on the outside of elbows as opposed to the inside, and they are smaller pustules as opposed to large things like what I have. What do you all think?

    I haven't been able to get an appt with my doctor and the waiting list for specialists is months long, but I'm trying to get some medical attention. Until then, I'm hoping all you wonderful folk can weigh in and give me your opinion. Thanks in advance,


  3. Hello everyone,

    This forum has been a huge help for me throughout my entire gluten free journey. Five years ago I was super ill all the time - D, stomach gurgling, constant nausea, brain fogginess, exhaustion. Blood test came back negative (I think? It might have been inconclusive), but with my doctor's advice, I went gluten free anyways. The D, gurgling and nausea cleared up within days and life was good. I had a biopsy a year later to look for Celiac (that's how long the wait was for the test) so my results came back negative/inconclusive because I had healed.

    In the five years that I've been gluten free, I've never intentionally ingested gluten. I have been sick a few times that I figured was cross - contamination. Once, I actcidently ate the casserole with wheat noodles instead of my gluten free casserole. I freaked out, took some pepto bismol, and was a-okay, except for a bit of gas.

    Almost a year ago, I started suffering from gallstone attacks and had my gallbladder removed in early Feb. My family is trying to convince me that all my symptoms that I attributed to Celiac/gluten intolerance are due to my gallbladder. I didn't believe them - until tonight when I accidently ate 4 wheat filled sugar cookies. I didn't have any pepto bismol and I didn't want to run out and get ill while out, so I figured I'd just ride it out. And guess what? I was completely fine.

    So I guess I am completely confused. I was never officially diagnosed with gluten intolerance or Celiac, and I have felt much better since the gallbladder was removed. I do still suffer from brain fogginess and exhaustion - possibly because they are thinking that I have sleep apnea. My doctors are no help - my family gp is bitter and doesn't really care about anything and because I live in a doctor short area of Canada, I cannot afford to loose her. And then on the other hand, I have what looks like a patch of excema/DH on my inner elbow for the first time ever (been there for a few months, doctor brushed it off and could've cared less).

    Basically I'm just looking for some advice or thoughts. Should I try more gluten? Or should I stick with gluten free? Has anyone else experienced this "accidently ingesting gluten but not experiencing negative side effects" and also "got super ill from cross contamination"?

    I'm just so confused. Thanks in advance to anyone who read through this whole rambling post!

  4. Thank you so much for the replies!

    I'm calming myself down, I think, and that's helping. I just hate not knowing what's going on! Given that I was never actually diagonsed with Celiac, I also pysch myself out and think that maybe I am just making it up, like everyone (except my family! they are incredibly supportive - my mother cried when I ate the pasta) tells me I am. Apparently since I was never diagonsed, I am not actually a Celiac sufferer, and so people tend not to take me seriously.

    I do have one question though. I think that rinne and MommaGoose pose a pretty valid answer - however, if I am healed enough to tolerate a bowl of wheat pasta, how come I still get sick from cross contamination? I am just wondering.

    Again, thank you so much for the replies.

  5. Hey everybody!

    I am freaking out a little bit because I just ate a large bowl of wheat pasta. My mother had made two seperate pasta cassaroles and I accidently ate the wrong one. I got really upset after I found out because I knew that I was probably going to be crazy sick. I took some Pepto right away and now it's been 2 hours. I was extraordinarily gassy at first and I felt like I was going to throw up, but now I feel just slightly ill. In fact, I feel pretty okay. I got to thinking about it and it's possible that naseau and gas just stemmed from the fact that I was nervous about my impeding doom. Am I actually going to get sick? Or what is going on? I'm a little confused and freaking out a little.

    I've been gluten free for almost three years. My blood test came back negative and I didn't have a biopsy until almost a year after I'd been gluten free, so I was never conclusively given a Celiac diagonsis. However, my doctor said if being gluten free made me feel better, that was good enough. Now I'm beginning to wonder if gluten really affects me at all! Before I went gluten-free I was incredibly sick every day, it ruined my life. After going gluten free, I felt much better...although I still got sick maybe once a week. I figured it was from accidental glutenings. But maybe gluten isn't actually my problem?

    Still, it's only been two hours since I ate the pasta. Maybe my sickness is just to come? I don't know but this is sure making me doubt a lot of things. I'm so confused. I did experience/am experiencing some symptoms I had attributed to gluten in the past; heartburn, gas, headache, a bit of dizzyness, mild chest pain, some stabbing stomach pain, bloating, no D yet (which is my huge reaction thing and what I suffered from before glutenfree) ...maybe I do need to be gluten free, I just don't know!

    Any advice would be appreciated, thanks!

  6. I'm an eleven grade student, and a few weeks ago, my teacher nearly made me cry. You see, at the beginning of the year, my religion teacher told us that she hates students that miss a lot of school. Last year, I missed close to 40 days of school due to gluten reactions, and because I'd only discovered my gluten issues at the end of May, I wasn't sure how often I would be glutened accidently, and therefore, how much I'd be absent this year. I was also determined not to let my gluten issues rule my life, and decided not to inform my teachers about my gluten intolerance. But since my religion teacher hates people who miss a ton of school, I felt like I had to explain about my gluten intolerance, and how it might affect my attendence. She was very sweet and understanding about it, and I felt better after informing her.

    So it was a Friday when she said that she had a treat for the class, that she had cookies for everyone, and we could eat them while we watched a movie today. I was a bit disappointed, but hey, it's life, so I remained seated while my classmates got their cookies. Then, my teacher called me to come up to the front, and she pulled out a brand new bag of Mi-Del Gluten Free Chocolate Chip Cookies. She searched specifically for something that I could have. I hugged right then and there, and thanked her. The entire class learned about gluten intolerance and they all tried a gluten-free cookie. It was a pretty awesome experience, and made me feel on top of the world. Today, it was cookie day again. I couldn't have cared less, as I still couldn't believe that she had gone through all that trouble the first time, but yet again, my teacher called me up. She handed me the leftover gluten-free Chocolate Chip Cookies, and a second bag of Mi-Del Gluten Free Ginger Snaps. I couldn't believe it. I thanked her profusely and ate my cookies :).

    Sometimes an experience like that makes up for all the people who are rude, and uncaring.

    Oh, and the other day, my family and I ate out at Kelsey's. The minute gluten - free left my mouth, the waitress left and returned with the manager, who talked me through the entire menu, explaining what I could have, and what I couldn't. He was incredibly nice and knew about the disease - he said that his brother has Celiac, and he understands what it's like to be glutened. They made my dinner from various items and he supervised all of it. It was wonderful!

    Those are my stories....let's hear some others. We can complain about how insenstive people can be, so let's counteract those bad feelings and spread some stories that make you smile!

  7. Hi all! In early November I'm flying up to Toronto for a few days to have dental implant surgery. Therefore, I'm looking for places I can eat. My mother and I will be staying in the hotel at the Bloorview Kids Rehab center, so preferably, if you know of something close to that, it would be great. However, we will be going up to check ups and such for the months following the surgery, so any suggestions as to a good gluten-free or gluten friendly restarant to go anywhere in Toronto, let me know!


  8. Hi all.

    These past few days have been horrible as my mother is unsure about my gluten issues. She's not sure that it's my problem because I am still sick ocassionally (after I eat a food containing gluten and I was unaware). She keeps saying, well how do we know that it's not lactose intolerance? Or just your eating habits? (which I must admit, suck. I love chips and foods filled with fat. I've been working on getting a more balanced diet, but I rarely have time to cook food, so its usually more chips and a banana for lunch) Or that it's Crohns? I've had a awesome response to the gluten free diet, but my mom is now thinking I've convinced myself that it's a problem with gluten when it's probably not.

    My mom was the one who brought up the idea that it was probably relating to gluten! And brought me home magazine articles that convinced me!

    And I know you are all probably saying, well, if you had a positive dietary response to gluten free, then you obviously have a problem with gluten. Well, I still have had D. Not in a pattern, sometimes I'll go for 3 weeks without it, and sometimes I'll get it twice in a week. It's just that my mom has lots of experience in the bowel area, given that she has Crohns. And has been through hell with it. So she knows poop.

    Anyways, she really wants to know what's wrong with me, and I would as well. So I was telling her about Enterolab and the Celiac Gene Testing. We would like more information so that we can get on with our lives. So my questions about Enterolab are:

    1) How much is it?

    2) What kind of tests are they? And what do they involve?

    3) Can Canadians be tested?

    4) Is it worth it if I'm pretty sure I'm only gluten intolerant, rather than Celiac? (No one in my family has Celiac, however, my mother and great grandmother both had Crohns. My grandmother was developing Crohns in the short years before her death, but it was determined that it was from her undersized bowels from her premature birth)

    If you can help me with any of this, I'd greatly appreciate it.

    Thanks so much,


  9. This is my first, ever, real job. And these people are super picky about who they hire. And I'm scared that if I tell them about my issues, they're not going to want to rehire me in the spring (I'm a seasonal employee) because it'll qualify me as high maitence. Especially since I'll be working cash and things, and I won't always have someone else there. I guess I'll have to tell them, eventually. But soo many people are incredibly judgemental of the fact that I need bathrooms around me. I just don't want judgment here either.

    Thanks for listening...

  10. In Thunder Bay, Ontario, the fries are coated in flour. And there is no designated fryer. However, the wait staff was incredibly helpful, answered all my questions, double checked everything...I had a baked potato and a burger without a bun, and I was fine.

    But at our Moxies, I recieved helpful (but noneducated staff - had no idea what I was talking about) who spent extra time taking care of my order. I had a burger - no bun, of course, and garlic mashed potatos, as their fries and baked potato were not safe. The manager came out and told me herself. I did end up glutened. So the staff was wonderful, but they couldn't have stopped the CC, and I will, unfortunately, not be eating there again.

  11. Hi all,

    Since I'm new to the gluten free world (only went gluten free June 6th), alot of my mistakes are found through trial and error and I find myself frequently ill from accidently glutenings. I can control myself with Pepto Bismol, Maalox, and Gravol, but I find it hard to leave the house. However, I have now saddled myself with a new responsibilty. A part time job at my favourite store, Chapters (the Canadian version of Barnes and Noble) and I'm incredibly worried about how my gluten problems and working will work. So my question is,

    How do you all deal with it?

    Thanks, Lissa

  12. I just had to throw in my two cents here....

    This isn't about being gluteneted at the barn, although I have never had any problems. But as for the safety debate, I needed to express my opinion.

    I begged for years to ride. My parents finally relented when I was nine (I'm sixteen, going on seventeen now). I fell in love with the sport. A shy and underconfident person in real life, I blossomed around horses. My true personality came out. Horses were never judgemental, and they were always sweet. It took me a few years, but I was able to be that self confident around everyone, not just horses.

    The thing about horse injuries is that they aren't usually petty. But it's those ones, those serious injuries that you hear about. For instance, taking a tumble from a horse is common. You usually hit the ground, laugh, brush yourself off and get back on. I can't tell you how many times I've fallen off. Or witnessed a fall. All safe. I've only ever witnessed one serious horseback riding accident, and that was last month when my best friend fell off coming over a jump and the horse kneed her in the face. The helmet caused a serious incision from her ear, following her hairline to the middle of her forehead. It took 31 stiches. She's perfectly fine now. But that's been the biggest accident in our horse community in years.

    With any sport, there are risks. Statistics have proven that soccer has more injuries than horseback riding. But if you approach those risks and take the safety precautions (HELMET - always wear one, saved my friends life a few months ago - calm horse, experienced instructors and safe area to ride) then horseback riding is a positive and extremely amazing sport.

    So while you can hear about all the horrible stories, (I'm so sorry for your loss FiddleFaddle, and your friend), you also need to consider; how many days of plain ol horse fun do you hear about? Plenty of horror stories go around. More stories about safe and fun riding need to be spread around.

    So here. I'm sixteen, going on seventeen, having been riding for 7 years, and horses make me happy. I own my own green horse, who I am currently training, and am an assistant teacher. My life around horses has been overwhelmingly positive. They've given me confidence, taught me about responsibilty, and introduced me to some incredible people.

    This post is not meant, in any way, to downsize anything FiddleFaddle said. I just love spreading the horse bug. Good luck in your decision!


  13. What is the true difference between Colitis and Gluten Intolerance? And why do those with Colitis are told to go gluten free? I'm curious as I've responded incredibly to the gluten-free diet (Aside from times when I was glutenated, I've barely had any D! I even went to the mall/movies/restaurant the other day, totally confident I would be able to control my bowel, and I did. I was so proud, aha). But I am the first in my family to have a problem with gluten. However, GI diseases run in my family. My mom suffers from Crohn's and while it was never officially diagonsed (she passed away before it was confirmed) it was suspected that my grandmother had colitis. And the diseases go back and back through some of the women in my family. So if anyone could explain the connection between gluten issues and colitis, I would really appreciate it.

    Thanks! :)

  14. I can't believe I found this topic!

    I suffer from extreme thirst all the time. All I drink is water, too. Waiters hate me because they'll have to refill my water glass 8+ times. In fact, after around the 4th glass, some of them will actually bring me a pitcher of water. I go through gallons a day. Except...I've been gluten free for over a month now, and I'm still constantly thirsty. I've never had my iron levels checked, but because it runs in my family, and I'm obese, I'm checked for diabetes every 6 months or so. The last time was in March, I guess, and I was clean. Is this normal? My family is getting upset because I go through the water bottles so fast.

  15. My family and I just got back from our trip to Wisconsin Dells. We stayed at this amazing resort, the Kalahari, which was massive and expensive, but worth every cent. I reccomend it! Anyways, I was starving while we were in the waterpark, so I headed for a concession stand. They had a list displayed with all the foods that were safe from gluten! And it applied to all the waterpark concession stands! Of course, it was mostly the fruit tray, the hamburger without a bun, etc, but I was impressed.

    Just thought I'd let everyone know.

    Oh but the restuarants and sweet shops didn't have a list displayed, but some of the staff was knowledgable and helped!



  16. Kelsey's - I went to Kelsey's in my hometown of Thunder Bay, Ontario, and I discovered that they coat their fries with flour. My hostess was extremely friendly and well informed of cross contaimination and what contained gluten and what didn't. She said she recieved the "gluten question" quite often.

    Grandma's - in Duluth, Minnesota, they do not coat their fries with flour, however, they put flour in the oil. Why is that!?

  17. I went gluten free on Tuesday.

    I made the decision early Tuesday morning (around 3AM) when I was curled in the fetal position on my bathroom floor from eating pizza for dinner on Monday.

    I never looked back, resisted all temptation for any gluteny food, stuck to the diet. I think I was doing better, (I hadn't had any D after tuesday), but I can't be sure. I'm at the point where I've been sick for so long that I can't tell anymore. Anyways, I was good until Saturday, when there was desserts. I gave in and I ate some. It was a girls night, and I don't know, I really wanted to test myself. See if I was really Celiac. So I had a nice helping of some cake and baclava. I didn't react! Is 4 days too soon to feel better? I'm so confused. I was almost positive I was having reactions to gluten...until I didn't. Am I a raging hypochrondiac? Or is it possible that I wasn't better at all, therefore, when I ate the gluten, it didn't make a difference?

    really hoping you can give me some answers,


    PS - thank you for answering all my questions! I don't know where I would be without all you!

  18. Thank you so much for your answers. It really helped, believe me. I'm going grocery shopping tonight for gluten free items and I plan on starting the diet tomorrow. I spent the past 3 days doubled over in pain with some of the worst D I've ever had (I couldnt leave the bathroom for a couple of hours).....and what did I eat all weekend? Breads! And cakes! and pizza! and all the stuff that has made me decide I do NOT want to live like that anymore. Thank you so much, everyone. I'll keep you updated!

  19. I'm not sure I'm Celiac anymore. Lately, I've still been feeling like crap but my runs arent as bad as usual. I'm really confused. However, all the gluten I've been eating lately has been a bagel at breakfast, but shouldn't I be getting the runs from that? My blood test was negative, maybe that's telling me something. Perhaps I'm looking at the wrong thing. So my question...

    If I am not Celiac and I try the diet, will I be messing up my body? (cutting gluten out, seeing it doesn't help, then going back to gluten?)

    And can anyone tell me what some proper Celiac are? I can tell you I get the runs (which I'm not getting as often) but what else could be affecting me?

    Whats the difference between gluten intolerance and Celiac?

    What kinds of foods can I eat on a gluten free diet? Which are the major not-commonly-know-but-are-in-fact-glutenized products?

    How much is an Enterolab test?

    Thanks, everyone. I'll be happy with any help you can give me.

  20. WOW! Thanks all, for your help. I really appreciate it. However, I'm in need of some help, please....

    I'm not sure I'm Celiac anymore. Lately, I've still been feeling like crap but my runs arent as bad as usual. I'm really confused. However, all the gluten I've been eating lately has been a bagel at breakfast, but shouldn't I be getting the runs from that? My blood test was negative, maybe that's telling me something. Perhaps I'm looking at the wrong thing. So my question...

    If I am not Celiac and I try the diet, will I be messing up my body? (cutting gluten out, seeing it doesn't help, then going back to gluten?)

    And can anyone tell me what some proper Celiac are? I can tell you I get the runs (which I'm not getting as often) but what else could be affecting me?

    Whats the difference between gluten intolerance and Celiac?

    What kinds of foods can I eat on a gluten free diet? Which are the major not-commonly-know-but-are-in-fact-glutenized products?

    How much is an Enterolab test?

    Thanks, everyone. I'll be happy with any help you can give me.