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Suffering For Two Years..
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3 posts in this topic

Good Afternoon Everyone!,

I am a 19 year old female that lives in Labrador. You have to understand what it is like in this community to understand my story. Churchill Falls is a little community in Labrador that is owned by a company because of our water resources so we are small with a small clinic. I have been sick for 2 years with the same symptoms and the clinic here has only had a on and off doctor in these two years. I was going to the nurses complaining about bowel problems and bleeding and they kept telling me that I had a fisher or a tear in my bowel. Two years ago I went to them saying that I was tired all the time and I was losing my hair. They did countless blood tests and never came up with anything. I guess they never thought that my bowel problems had anything to do with my hair loss and tiredness because they never tested for celiac. Finally after being prescribed creams, pills, and suppositories for inflammation with no known cause, I had a really bad bm and I filled the toilet with blood. My aunt, who has Crohn's AND Colitis, came over and seen what had happened and immediately marched me up to the hospital and demanded they make arrangements for me to get a colonoscopy because she was sure it was Crohn's because she seen it before from herself. The New doctor that came in decided to do a blood test to check to see if my blood levels were okay and all that great stuff as well as a Celiac test from my blood. After weeks of waiting for my blood work to come back from St. John's, the doctor calls and says they finally have a diagnosis for what I have been going through for TWO YEARS! She explained what Celiac was and what happens and that I can't eat gluten or wheat. I didn't know what to think about it so I Googled it to find that I had almost EVERY symptom that was listed and when celiac is left untreated there as many scary risks and complications including infertility. When I read that I broke down in tears in front of my Mom and Aunt, I was more angry then upset because I have had these same symptoms for two years and I couldn't get any answers and now I have the risk of never being able to have my own children which is VERY important to me. Has anyone else had this kind of experience that they have had the same symptoms for a long time and no one could diagnose them properly? Also I am having a lot of trouble with buying foods that are gluten free here seeing that we only have a small grocery store with pretty much only the essentials. Is there any recipes that you guys have that do not have complicated ingredients that I could possibly get here. Also do you know of any online stores to buy gluten free foods that are cheep and preferably in Canada? One more question for now :) what does a endosopy hurt and should I be worried? The last thing I have to say is that without the support of my Family and Boyfriend don't know where I would be with all of this.

Always Demand Answers,

Ashley Rae <3

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Good Afternoon Everyone!,

I am a 19 year old female that lives in Labrador. You have to understand what it is like in this community to understand my story. Churchill Falls is a little community in Labrador that is owned by a company because of our water resources so we are small with a small clinic. I have been sick for 2 years with the same symptoms and the clinic here has only had a on and off doctor in these two years. I was going to the nurses complaining about bowel problems and bleeding and they kept telling me that I had a fisher or a tear in my bowel. Two years ago I went to them saying that I was tired all the time and I was losing my hair. They did countless blood tests and never came up with anything. I guess they never thought that my bowel problems had anything to do with my hair loss and tiredness because they never tested for celiac. Finally after being prescribed creams, pills, and suppositories for inflammation with no known cause, I had a really bad bm and I filled the toilet with blood. My aunt, who has Crohn's AND Colitis, came over and seen what had happened and immediately marched me up to the hospital and demanded they make arrangements for me to get a colonoscopy because she was sure it was Crohn's because she seen it before from herself. The New doctor that came in decided to do a blood test to check to see if my blood levels were okay and all that great stuff as well as a Celiac test from my blood. After weeks of waiting for my blood work to come back from St. John's, the doctor calls and says they finally have a diagnosis for what I have been going through for TWO YEARS! She explained what Celiac was and what happens and that I can't eat gluten or wheat. I didn't know what to think about it so I Googled it to find that I had almost EVERY symptom that was listed and when celiac is left untreated there as many scary risks and complications including infertility. When I read that I broke down in tears in front of my Mom and Aunt, I was more angry then upset because I have had these same symptoms for two years and I couldn't get any answers and now I have the risk of never being able to have my own children which is VERY important to me. Has anyone else had this kind of experience that they have had the same symptoms for a long time and no one could diagnose them properly? Also I am having a lot of trouble with buying foods that are gluten free here seeing that we only have a small grocery store with pretty much only the essentials. Is there any recipes that you guys have that do not have complicated ingredients that I could possibly get here. Also do you know of any online stores to buy gluten free foods that are cheep and preferably in Canada? One more question for now :) what does a endosopy hurt and should I be worried? The last thing I have to say is that without the support of my Family and Boyfriend don't know where I would be with all of this.

Always Demand Answers,

Ashley Rae <3

Welcome Ashley Rae! I can't help with the finding gluten-free foods in your area but I just wanted to let you know that infertility most often happens with UNTREATED celiac disease. As long as you eat strictly gluten-free you have a good chance of healing and going on to have kids. Since you are young and you have caught this rather early in your life you have plenty of years to try. I am 31 and I had several unexplained miscarriages prior to goign gluten-free. I'm getting ready to try for kids again in the next few years and I do worry sometimes that it's too late for me. I want kids a lot so I completely understand your fears. Just take good care of yourself and be eat healthy gluten-free food.

I have not had the endoscopy but I have heard they put you to sleep and you don't feel a thing. Most people wake up with just a sore throat and are really hungry afterwards. It's really no big deal. Make sure you keep eating gluten until you have the endoscopy. The day after you should go strictly gluten-free sinc eyou have positive bloodwork. No need to even wait for the endoscopy results.

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Hi from a fellow Canadian (Alberta).

The endoscopy does NOT hurt. I worried for nothing. I also had a colonoscopy done at the same time to rule out other things (i.e. ulcers, etc. - clear) while I was sedated. The only tricky part was fasting for 48 hours for the colonoscopy as I got very hungry but that is much shorter for the endo (plus you do not need to drink the 20 cups of liquid as you do for a colonoscopy). Some people have trouble drinking the stuff to empty you out but it wasn't as bad as it sounds. It truly was not a big deal. At all. And if you do not get a colonoscopy you do not need to do any of that. Here is how my procedures went at the hospital:

Checked into the Outpatients Department. Placed on IV. Took a good book along to read, thankfully. About two to three hours later was wheeled next door where I asked whether I could watch the procedure on the monitor. The nurses and doctor looked at each other and laughed. They said of course I could but very few people are awake during the procedure anyway. The doctor showed me the tubes that went down and up. I remember talking about cooking (as usual) and the next thing I knew I was awake in the recovery room with my husband holding my hand. The drug they gave me erased all memory of the procedure. I sometimes wonder whether I said anything foolish! Did I flirt with the doctor? (kidding) Did I watch the procedure on the screen? The nurse joked that I told her all sorts of sordid secrets. I was monitored for about two hours then released to go home. You MUST have someone drive you there and back. I was so hungry that I went to KFC for extremely unhealthy gluten laden fried chicken for the last time. It did not make me sick at all (gluten never did make me feel ill but little did I know the havoc it creates inside). My throat did not get sore. I relaxed for the evening and slept well that night. Next day I felt just a wee bit nauseous and my BMs were weird but that is hardly surprising. The entire thing was easy peasy. Absolutely nothing to worry about. :) I would far rather do that again than going to the dentist or having a physical! :lol:

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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