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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Sunshine Sassie

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  1. Hi Mrlkandee, I'm sorry to hear about the rough time you've been having! I can't imagine how challenging it must be to have Celiac without having symptoms that let you know that your body is reacting to gluten. As much as I hate having symptoms, I can always tell when I've ate something with gluten and then can avoid it to prevent pain/damage/havoc in my body. I developed depression and heightened anxiety a little over a year ago. The same time I also developed severe bloating, pain in intestines when I ate and had a bowel movement, tender stomach, gas, and pain in my hips. All of these symptoms (including the depression and anxiety) are what I experience when I eat gluten . I've spent a lot of time wondering if the depression is a result from the rest of my symptoms or if the gluten is physically causing my depression. I strongly believe that the gluten affects my mental state. As bad as my digestive symptoms are on gluten; it's ultimately the depression and mental state I just can't cope with. Now hopefully I can respond to some of your questions I am not familiar with the supplement GABA and I have not tried acupuncture before so I'm not much help there but I do currently take a low dose anti-depressant for pain related to my digestive issues. My GI prescribed my 25mg of Amitriptyline. I've been told that this low of a dose doesn't treat depression but helps relieve chronic pain. Honestly I don't know if it has helped my pain or if my gluten free diet has been the one to resolve my pain but I continue to take. One benefit is that it helps me sleep at night. I don't know if you have trouble sleeping but this is the time where my anxiety was the worst, so this has really helped cut down my anxiety. I believe there is a high chance you are getting glutened at places where you eat at. Since you don't know when your body is reacting, you could be very sensitive and not even know it. Eating out 90% (if not more) makes me have a reaction. If this is the case I'm hoping your anxiety levels drop if the chances of gluten are removed. That would be ideal since you are not wanting to pursue more medication (and I don't blame you!) You are going through so much right now and it sure is frustrating to decide if taking medications will help you or harm you. It doesn't take long for my mental health to improve after I've completely eliminated gluten (3 days to a week). And the smallest amount of gluten can set me off. I know it is so hard and overwhelming but this board helps me cope and I hope you can feel better very soon!
  2. Hey there littleburgy, I've been playing the "chase the diagnosis" game as well recently! I just had an endoscopy with a negative biopsy and my blood work couldn't confirm or rule out Celiac due to my IGA deficiency. I possibly could have Celiac or NCGS but I know my reaction is negative towards gluten. I understand how frustrating and confusing it can be. I am not pursuing any more testing as of now; just working on feeling better and eating gluten free. I am just grateful that the treatment for Celiac and NCGS are the same (gluten free eating) and doesn't have to be prescribed by a doctor! Maybe in the future they will come out with different tests that are easier to diagnose or rule out Celiac
  3. Celiac Or Not?

    Hey Casy, I'm in the chronic constipation club as well so I thought I'd say hi. We share a lot of symptoms (constipation with mucus, gas, bloating, rash, problems with menstrel cycle, I even have those cracks at my mouth!) I just finished up with a lot of testing and my conclusion so far is that I am either Non Celiac Gluten Sensitive or early stages of Celiac. You may be in the same boat as me or something else could be going on but I know those symptoms combined can make you miserable! I was convinced at first that these symptoms we share had nothing to do with what I ate; I didn't understand how something I ate my entire life could be doing this to me! It took me awhile to realize how and when my body reacted to gluten. I figured I'd have an obvious reaction but I learned that everyone has a different reaction time ranging from a minute to a day or two after. If I were to eat a piece of wheat bread today I'd get pain in my right hip about twenty minutes after but be fine for the rest of the day. But the next day is when I really react-and it will happen when I go to eat something (gluten free or not) and I will start bloating up like a balloon and have gut wrenching gas. This will to continue to happen every time I eat or have a bowel movement (basically when ever my system moves) until it's out of my system completely. When I eat gluten continuously the bloating never goes away and the gas pains come and go so it was really hard to tell that I was reacting to gluten before hand. I made the mistake of going gluten free before getting tested and it delayed my testing by about a year! I know it's tempting but I would definitely continue to eat gluten so you can get tested and get your answers as soon as possible. I'm not sure if you could have your rash looked at and tested too? I hope you post what happens at your doctor I'm interested to find out.
  4. Afraid Of Colonoscopy/endoscopy

    Hey firsttimemama2014, I was just checking the forum to see if you had received your results; I wasn't even aware that inconclusive could be a result and that is even more frustrating than my results! After being told I most likely had it my biopsy came back negative and I was more confused than ever. I started a new topic titled, Can I Officially Rule Out Celiac and received some great advice that would relate to you as well! I would hate for you to have to go through another endoscopy after the stress you endured from the first one Did they give you an explanation for why it was inconclusive? Also nvsmom told me it would be helpful to post my endoscopy results; that way we could get some feedback from people who have a lot of insight to what they mean. I want you to find more answers!
  5. Can I Officially Rule It Out?

    murphy203 I am so happy you received some answers! But I am also sorry that you do have the disease that can cause you damage. I know we're both in the same mind-set when you say you need more assurance because of how much involvement is required to live the rest of you life gluten free! It's daunting how much work ahead it would be avoiding cross-contamination, eating out, explaining to others why you can't eat the pizza everyone is eating at work, holidays, birthdays,cosmetics, and many more challenges I haven't even encountered yet! I completely understand your need of assurance. I also wanted to give a special thank you to nvsmom! You have responded to so many of my posts in the past and I was hoping you'd respond to this particular one (and you did ). My endoscopy results I received right after my endoscopy said: Duodenal mucosal changes seen, suspicious for Celiac Disease. I know it's not much; I didn't know if people usually get another report of the biopsy? I wish I had more answers from my blood work (although like you stated the IGA deficiency could possibly be part of my answer). Although if I didn't have the deficiency and received a positive blood test (and negative biopsy) I suppose I would still be seeking reassurance that I really had it (I can't win with myself lol). Again I would like to thank murphy203, T T, Firttimemama2014, nvsmom and everyone on this forum who is taking time to reply to posts. This board was what got me through this week and I wish I felt this support from another board I am in for my constipation. I've felt devastated this week after waiting three years to finally get an answer from my colonoscopy. I was so relieved to find out nothing was seriously wrong and my colon was fine but now I am more scared than ever of how I will ever resolve my bowel movement problems. But I'm feeling much better now after receiving everyone's advice and after a week I am finally starting to see results from my gluten free diet. I'm realizing that even though I am still fuzzy on being NCGS or Celiac I actually did get an answer: I know after one year and the gluten challenge I can finally be positive that the reactions I have are to gluten and it's not in my head. It took me awhile to convince myself; I just couldn't believe my body could be reacting so crazy from something I've eaten my entire life! At least I can manage my gluten related symptoms and who knows maybe after time being gluten free my constipation will resolve or at least get better. Thanks guys
  6. Can I Officially Rule It Out?

    Murphy203 I can't imagine how much more frustrated I'd be if I had tested positive and still did not receive a diagnosis! I'm glad you're having more tests done and I know it's in a month and a half but I hope you'll post what you're results turn out to be. And Triticum Toxicum, you're describe exactly how I feel...I've constantly questioned myself too for the last year or think that maybe my pain isn't as bad as I think. But I don't think that we would be so desperate for answers if it was in our head; I believe what we feel is real. I like what you mentioned about looking forward to new testing being available in the future. Thank you for sharing your story with me.
  7. Can I Officially Rule It Out?

    Sorry to hear that murphy203, what were your results? And thank you BlessedMommy I've read in your posts that you could not finish the gluten challenge to get tested because of your high sensitivity to gluten I guess all that matters is we feel better. I think I'm most upset about not having a reason for the cause of my chronic constipation. I thought maybe my intestine was damaged and once I healed it would help resolve it.
  8. Hi out there, I recently posted about my fears of having an endoscopy/colonoscopy done; I completed both last week and afterwards the doctor told me she thought I had Celiac because of how my small intestine looked (mucusol changes, suspect celiac is what the report said). The results came back negative. I'm confused why she told me she thought I had it and now I don't I'm IGA deficient and all of my symptoms clear up (besides constipation) on a gluten free diet. I had some helpful responses on my last post but I'm still confused if I can officially rule out having Celiac. I feel like I'm just chasing down an answer. I just don't understand how I can feel so terrible and nothing be wrong with me
  9. Hi LeahRuth, I am sorry you are feeling so unwell and it sounds like you are in tough situation since all of these tests are so expensive. I am also in my early twenties and have spent years without insurance until recently; it is very frustrating I have been following this board for almost a year and I hope it can help you like it has helped me. I am awaiting the results of my endoscopy and have not been officially diagnosed so I know how much it stinks to not know what is wrong with you. If you can continue to eat gluten it will help speed up your testing process. I made the mistake of going gluten free before testing and I will say it is physically and mentally harder to go back to eating after you've stopped. I hope you can find some answers and start feeling better.
  10. Afraid Of Colonoscopy/endoscopy

    Thank you to jddh and Gemini for giving me some feedback about the possible outcomes of my biopsy. I'm still in the mind-set of "I don't want anything to be wrong, but I want to find something so I can have a solution" lol Firsttimemama2014, what are the odds we had our endoscopy done on the same day! I certainly want to know how your results come back!
  11. Afraid Of Colonoscopy/endoscopy

    Hello and a big thank you to everyone who replied to this post! I apologize for posting so late; shortly after I started this topic my state was hit with a huge ice/snow storm that left my parents and grandparents without power for almost a week! Everyone is now with power and the snow has melted for now Every one of you who posted made me feel more and more confident and less scared about the procedure...thank you for replying to me It was nice to read everyone's experiences. I just had both procedures done this morning and I am happy to report it wasn't as bad as I thought (you guys were right) and my colon is perfectly fine. My doctor told me she thinks I do have Celiac because of the condition of my small intestine (I am really glad I pushed for the endoscopy to be done). Now I am left with a question I am sure many of you have faced: what if the biopsy comes back negative? What does that mean? Firsttimemama2014 you and I sound like we have the exact same fears! I hope some of these replies eased your mind like they did mine. I just had to tell myself that I could be hurting myself worse if I don't find out what's wrong. It also helps me to know that they perform them on children and if children can do it I thought surely I can too But I understand your anxiety with being put to sleep and I was also worried about Joan Rivers...as far as I could read she was having something done with her vocal cords which I believe caused her throat to swell (she wasn't being tested for Celiac) plus there is a higher level of risk on any procedure when you are in that age range. Hope that helps a little, it did me.
  12. Hi everyone, I'm scheduled to have my first colonoscopy (for chronic constipation/abdomen pain) and endoscopy (for Celiac testing, low IGA) in March. I've been waiting to have these tests for almost three years (finally have insurance) but now I am so scared and nervous. I'm 26 and have only been put to sleep once to have my wisdom teeth removed. I think the part that makes me the most nervous is being put to sleep. I also am not fond of things being inserted into me both ways! I'm scared they'll find something horribly wrong and then I'm scared they won't find anything wrong and I won't know what to do. I'm probably being a huge baby but if anyone would like to reassure me on how safe these procedures are it would be much appreciated. Also, was anyone else's colon/endo done at a doctors office instead of a hospital?
  13. Thank you so much for taking the time to help me Squirmingitch. I really appreciate it, you've been very helpful and I'm going to read through these posts to learn more about D H and if I can identify with it or not.
  14. I'm sorry to hear you both suffer from D H What I meant by "does it lose it's itch" was does the rash ever come to a point where it's still physically there but no longer itches? I know that sounds strange but mine has kind ve become crusty and has completely stopped itching. I'm relieved the uncontrollable itch has subsided but I can't figure out why it's still there.
  15. I apologize I spelled you name wrong in my last post (Squirmingitch). Do you have D H ? If you do does yours lose it's itch?