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Fishy Guy

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Fishy Guy Newbie

as I did before with other posts, I am writing a paper for school on a health disorder, I chose celiac disease mainly because I already know a lot about it and have the disease myself. my story isn't that amazing, but It would be pretty cool if I could get some of your guy's stories. Don't worry, I will quote. Thanks!

~Phil

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Sweetfudge Community Regular

what specifically do you want to know about? throw out a few general questions for us :) it's a good topic to write about. i did a paper on celiac for my biology class last year. great way to spread the understanding!

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flourgirl Apprentice

Do you just want the down and dirty about symptoms? Or do you want like a life history with all of the years of doctor shoulder shrugs and guesses. misdiagnosis and strange cures? I'd be willing to "talk"....no bright lights and torture needed, I just need to know how much and what type of information you are looking for. Thanks.

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Fishy Guy Newbie

well, I would like to know basically what your symptoms are, how you found out you were a celiac, and basically the difficulties you have had with and as a celiac. ~Phil

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nikky Contributor
well, I would like to know basically what your symptoms are, how you found out you were a celiac, and basically the difficulties you have had with and as a celiac. ~Phil

I was pretty much asymptomatic, the only thing i had was anemia which could of been down to anything (all the females in my close family had suffered with it at some point and none of them have coeliac). I found out because a locum doctor checked me for anemia then wanted to know why i was aneamic and so she checked for coeliac. Needless to say it came back positive.. over 250 infact when the norm from that lab was below 10.

I was then referred to a peadiatrition and gasteroenternologist who did a biopsy fully expecting it to be positive ... and it showed: nada.. he had taken about 7 samples from as many different places as he could reach, he got 5 pathologits to look at them .. but no one could see any damage at all, i guess you could say that was a difficulty :P.

So he repeated the bloods which came back defiantly positive and a little confusing (i mean i was the only one in my country with bloods so high and then having a negative biopsy in the last 5 or so years and the only one he had treated like that in the last 10). After a few more checks he decided to scrap the biopsy and go with the bloods. (He wasnt prepared to do more than the nessacery amount of tests but he did want to make sure the lab hadnt screwed the bloods up. He also wasnt prepared to wait for me to get symptoms because he hates children suffering.)

No real difficulties as yet, not being able to eat anything from my school is a bit of a pain if i forget my luch (which thankfully i havent done.. yet). Also having people eating stuff infront of me which i have a craving for is not really that helpful.

Good luck, hope this helps.

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spkerens Newbie
well, I would like to know basically what your symptoms are, how you found out you were a celiac, and basically the difficulties you have had with and as a celiac. ~Phil

Growing up I was extremely skinning and my parents just thought it was because of my high metabolism and that I was actively involved with sports. I also had a very terrible problem about breaking bones. By the time I was 14 I had had 8 broken bones including both my wrists, collarbone, various fingers, fractured skull. Then when I was 16 I broke my leg playing soccer. My parents were a little worried that I had broken so many bones.

I went and saw various doctors, but none had any idea. I had x-rays, bone density tests, and stool samples taken to try and figure how why I was so fragile. They did blood work and noticed there was a very high chance of having celiac disease. I personally had never heard of this disease and didn't know what it was. They confirmed it with a biopsy. They were a little taken back that I had never had any symptoms of a typical celiac patient. I ate wheat filled food although my childhood and never had so much as an upset stomach.

I am now 18 and been on a gluten free diet for the past 2 years. I am still fairly small only about 5'9 and weight about 130 pounds. Still pretty active when it comes to sport playing soccer for my high school and club team. Haven't suffered any broken bones since I was diagnosed with celiac. Now next year I am heading off for college and sticking to a gluten free diet is going to be extremely tough.

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taylor- Rookie

Hey! so can I just say that just about all my papers from elementary school to now college have had something to do with celiac disease/gluten-free diet in some way..kind of sad..but it always gets a good grade :)

My story really isn't interesting at all, but i thought i would put my 2 cents in since its been a while since i've posted anything here. And i'm one of the ones that was diagnosed verrry early, so to give you a different perspective..

I was diagnosed at 18 months old through an endoscopy. As a baby I was fairly calm and didn't do much, a few months before my first birthday i started dropping weight really fast. I had a distended belly and very very skinny arms and legs. My parents pretty much stopped taking me out to eat because I would always make a scene with the vomiting and everything. I went to a series of doctors who tried all the "normal" test and decided to try taking me off dairy, that helped a little, but overall did not have much of an effect. I have my classic first birthday picture with cake all over my face, but i look miserable and severely malnourished. On the 5th doctor (my mom tells me that the 4 other doctors later told her they would have eventually come to the correct diagnosis, but she tells me that told them she she didn't have "eventually," her baby was dying.) it was decided to try to biopsy my small intestine to see how much damage there might be, and from there they diagnosed me. Oh, I should note that back then they didnt have the blood test and the stool test. I went off gluten for a year, and had a second biopsy done. By the time I was almost 3, I was very fat and healthy looking. I never had the 3rd biopsy but my doctor said the improvement was obvious enough for a complete diagnosis.

So don't remember gluten, which has its benefits and downfalls. I grew up learning what foods were OK and which ones were bad, and often times had to tell my teachers and friends in elementary school what was OK. I could spot the "bad foods" on an ingredients not long after i could read, and tell whether french fries were battered or fine by looking at them, haha. I definitely still missed not being apart of what everyone else was eating. The gluten free food market was relatively new and could only be ordered through a magazine, and was extremely expensive. Usually my lunch consisted of a sandwich made of rice cakes. I went to a meeting every once in a while with my mom, but the support group in my area kind of scared us both because it was all much older people who had several other problems because of a late diagnosis.

Skipping over a few years, middle school and high school i did not want to bring rice cakes to school for lunch, or have weird looking bread, so often times i wouldn't eat. some of my friends would make fun of my food or ask to try it and then tell me how gross it was, and this was really discouraging and just stopped me from eating with them. I also started cheating some, ordering things at a restaurant, having them be sent out wrong, and refusing to send them back because i didn't want to cause a seen with my friends. This is when the early diagnosis was a bad thing. I didn't know what it was like to be really sick, and my friends had never seen me sick before, so it was often hard convincing them, and myself, that i would get sick.

So i struggled with that during middle school and early on in high school, slowly more and more info came out and more gluten free products. Once I was getting ready to go off to college I decided to get an apartment so i could cook for myself..and now i can honestly say that i eat enough every day and that it is healthy and safe.

Wow, that was long..and i was sort of quick at the end..like i said its not that interesting..if you want more info on the "struggling" part just let me know and i could elaborate more..

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Fishy Guy Newbie

Thanks guys! This will help a ton! Phil

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Fishy Guy Newbie
I was pretty much asymptomatic, the only thing i had was anemia which could of been down to anything (all the females in my close family had suffered with it at some point and none of them have coeliac). I found out because a locum doctor checked me for anemia then wanted to know why i was aneamic and so she checked for coeliac. Needless to say it came back positive.. over 250 infact when the norm from that lab was below 10.

I was then referred to a peadiatrition and gasteroenternologist who did a biopsy fully expecting it to be positive ... and it showed: nada.. he had taken about 7 samples from as many different places as he could reach, he got 5 pathologits to look at them .. but no one could see any damage at all, i guess you could say that was a difficulty :P.

So he repeated the bloods which came back defiantly positive and a little confusing (i mean i was the only one in my country with bloods so high and then having a negative biopsy in the last 5 or so years and the only one he had treated like that in the last 10). After a few more checks he decided to scrap the biopsy and go with the bloods. (He wasnt prepared to do more than the nessacery amount of tests but he did want to make sure the lab hadnt screwed the bloods up. He also wasnt prepared to wait for me to get symptoms because he hates children suffering.)

No real difficulties as yet, not being able to eat anything from my school is a bit of a pain if i forget my luch (which thankfully i havent done.. yet). Also having people eating stuff infront of me which i have a craving for is not really that helpful.

Good luck, hope this helps.

I can definatly relate to your story nikki. I had about the same thing happen for 3 years befor I knew I had celiac. I started having symptoms around 4th grade, and then it grew into extream pain in the stomache, untill 6th grade, they told me I had celiac. and as for lunch, I don't mind, Ill pack a thermas from yesterdays steak and mashed potatoes whil everyone else has pizza. I can't complain.

~Phil

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  • 1 year later...
IxMissxMysticxPizza Apprentice

in elementary school no one could figure out what was wrong with me, i was malnourised, super skinny(chicken legs), hair thin from falling out, i had pains and stomach acid but i still thought i was a normal child. i wasn't even on the charts for where i was supposed(in terms of growing) to be. i saw lots of doctors and tried lots of diets until finally my doctor decided to test me for celiac in 2005. it came up positive. a couple more tests and it was confirmed i had celiac disease. so i began staying my diet, being a little freak, and boom i was on the charts. growing for times i missed, im on tract now, no more stomach pain...i still look super young and still feel leftout but at least i know whats wrong with me.

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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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