• Announcements

    • admin

      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


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About tama_chan

  • Rank
    New Community Member
  1. I wrote down my current experiences and am bringing this to my doctors on Wednesday, but wanted to show you guys to see if you could get some idea as to what is going on with me. I am scehduled for an endoscopy in Oct 4th, but I cannot wait that long to help myself. Thanks everyone for listening!: Problem: Painful intestinal problems, from the upper abdominals to the lower pelvis. Pain is normally random and can be from mild agitation to extreme. Never goes away, and is with me every hour now. Pain started around February and increased every month. Since then I have had to use the bathroom more at work to dispose of the wormy mucus that comes out of me, have gotten less sleep, Have not had a single hour where I feel absolutely no pain in that area and have had bouts of stress. Facts: 1. Wormy/stringy mucus comes out of me every time I use the bathroom now. Sometimes when I don’t even pass a stool, I use the bathroom and the mucus comes out along with gas. 2. I pass excessive gas every 15 minutes or so. 3. Constipation seems to be sporadic. Sometimes I’ll have difficulty passing a stool, while other times I don’t. 4. I normally use the bathroom about 5 to 10 times at home, with a time allotment of 10 to 30 minutes. At work I need to use the bathroom at least 4 to 6 times. 5. I am always awaken after my sleep by the gut pain, and have not slept a straight 8 hours in months and months 6. I have heartburn from time to time every week 7. I choke on water 30% of the time I drink it, even if it’s drunken slowly 8. When I attempt to get back into my exercise routine, the more I exercise, my bowels will move more and I’ll need to use the restroom, but all that comes out is lots of the mucus/wormy stuff. And after I relieve myself I will still have the pain 9. Once usually every day during my work hours, the pain will get so bad that I will literally need to grab onto something so I don’t pass out. Fatigue sets in for about 20 minutes until I can catch myself Personal notes: To me the strangest symptom is the stringy wormy things that come out of my intestinal track. They come out almost every time I pass wind, and there is a lot of it. I have had: 1. Colonoscopy (They found nothing of concern) 2. Celiac Plus Blood test (they said I have the correct genes for celiac, but blood was undetermined) 3. Upper Gi Tract (they watched my digestive system, and it seemed to go down fine) 4. I had tried going on the lactose free / celiac free and IBS diet for one full week (seven days) each. I was told by my specialist that those would be enough. Conclusion: Taking everything into account (including the test performed) I either have some type of virus that has not been ruled out (due to wormy things coming out of me every time I use the bathroom), or all the symptoms are pointing to a deadly case of an intolerance to something that is literally destroying myself.
  2. Wow! Your type of pain and circumstance almost sounds identical to mine! Okay, I guess I misunderstood before; I thought 2-5 biopsy's meant that I would do a endoscopy 5 times. So I believe they are going to check all the small intestines as best they can... As for the pain in morning, I do pass a lot of excess gas through out the day, and especially in that morning where I have lots of pain built up when I wake up for 20 minutes. I will stay on gluten then and see what happens on October 4th. Thank you for your shared experience!
  3. Oh wow, 2 to 5 Biopsys? Okay I will try, but I'm pretty sure my doctor will not let me. They are already angry at me because I continue to pester them to get this test done. I continue to eat gluten then I guess... I just hope they don't take false information or anything. Thanks again!
  4. My specialist called me up and said that they will schedule me for a small intestinal Biospy (or endoscopy). Why they didn't do this before is beyond me, and from what they told me before, the upper GI tract scan is the same (which I know now is NOT). I can't get in until Oct 4th, but thats life I guess. Could someone tell me if they do this small intestine biopsy, if I have celiac they can 100% detect it that way right? I know they have a stool sensitivity/gene testing (which I know I have the gene), but will my villi be hurt, and will they see this? Sorry I'm getting worried again, I just want to make sure they look for everything...
  5. I forgot to mention another detailed time of pain that happens to me: As soon as I wake in the morning (doesn't matter what time it is), for about 20 minutes I'll have the worst pain in my lower gut (as bad as when bending over/kneeling down). Does anyone know why this could be? Have any of you who has celiac been in pain as soon as you get up before you were able to treat the problem?
  6. Thanks again everyone, you have been a big help. Yes, my doctor will remain namless but he is only person I ever met who treated me like dirt, and didn't believe anything I say. I went in with an open mind like everyone else and a smile, but it didn't help. I guess the main thing that ticks me off is if they can't find the problem by testing means, they will assume it is a mental problem. I can tell you right now that I have a great life with my family, my friends and I love my work. The only thing that has broken me down and frustrated me is my pain in my body. >_< But yea, I am really starting to hate doctors and am thinking that they really don't care. After 8 months of being in pain and progressing, you would think someone would figure that something needs to be done as soon as possible. I am going to continue the celiac free diet then, and look into the labs. Thank you again everyone.
  7. I haven't heard of Enterolab before, but they gave me the "Celiac Plus" test when I had my bloodwork taken. Thats when they couldn't determine if I had it or not, but I had the gene for celiac disease. About the diet, I did try for seven days (thats what was prescribed by my doctor) but didn't feel an improvement. I even inquired about some people needing more then just a week, but he shook his head at me. I've been trying to get another specialist, but the closest one is almost into next year. Re-doing the celiac free diet is probably my best bet, but I've been worried/concerned out of my mind because I don't even know if I have it with my symptoms. Thank you again for all of your info!
  8. Hey everyone, I haven't posted in a while to try and sort some other things out. I'm still having pain everyday, and am trying to figure out if I do indeed have Celiac disease. After they ran my blood test again at the specialist, he informed me that I do have the right gene that most celiacs have. But he said my blood work was "unlikely" or "undertermined" that I have celiac disease. I was not happy with this in the least, so I tried to get an endoscopy done, or something to check the villi. They wouldn't let me, and two doctors so far have refused. My main symptoms are still there... I have aggrivation right under my belly down to my pelvis, and when I touch it, it hurts a lot. At work work as soon as I start to bend over/crunch my abs in any way, they hurt so bad I could pass out. It will then just get worse and worse until I go and sit down and relax (which is difficult when trying to work). I have checked for a hernia, so I can only assume this is a bad digestive ache, but I have no idea... That doctor also informed me that he thinks its not celiac because the symptoms I have are not celiac related. But I don't understand that... I have major constipation issues, and am hurting so much in that area, I thought celiacs can have this? I just want to enjoy one day where I don't feel pain anymore.
  9. I'm curious about this one: Could you still take souluble fiber only pills/powder in any form to help constipation/excess mucus build up? Or do they all have some sort of gluten/wheat chemical in it? If I can have one of these, is there a popular brand that works better then others? Thanks!
  10. Could someone tell me a some sure-brand names of Gluten free soaps, shampoo's and toothpaste? I read on another board that all these things could have a possible gluten contamination, so I want to rule them out. (Possibly an item I can find in a regular store, or health food store; nothing online please). Thank you!
  11. Hello again! While trying to stay celiac free (though my doctors office wont tell me if I was positive or negative yet, even though they have the results) I decided to play it safe for weeks, and eat nothing but rice, potatos, some meats and fruits/vegetables. I'd like to start trying a couple other things, but I'm not sure if they contain gluten or not... 1. I heard on the forums elsewhere that chinese food was okay. Now I don't want to sound skeptical, but thats kind of a broad term. All chinese food is safe to eat? That doesn't sound right to me.. but maybe someone can clear it up for me. 2. How about Planters Peanuts? Like the smoked amonds? I picked some up reading that nuts were celiac free, but then realized that some of these ingredients sound suspecious from Planters... please help! X( 3. Hot Cocoa? The only thing that concerned me on the list was whey, but read that, thats actually a milk product or some kind of powdered thing. I guess I'll just have to keep playing it as safe as possible and continue waiting. it's been a full five days now, but I'm still having the gas pain/cramps and constipation. Until they let me see the Celiac results they are prescribing me something for Proctitus, which they said could very well be an issue. Thanks again Chris (honestly I hope I do have celiac, so I can stop these guessing games that have been going on for several months ).
  12. Thanks for the info everyone! I had been eating wheat/guten prior to the testing, and did not stop eating it until right after the test. I'm not sure which lab it's getting sent to... thats why I'm kind of worried that they aren't going to understand that it's the "Full Celiac Plus" test, and may mess it up. I sure hope not!
  13. Hello everyone, While trying to sort out my abdominal pain/gas/constipation issues, my specialist finally approved for me to take the Celiac test. I recieved a paper in the mail a short while ago that has all the information for the "Celiac Plus" test. I was told prior to the testing by my regular doctor and nutrisionist that you need to have gluten/wheat in your body while the first blood work is done. When i arrived at the hospital labs, my specialist office called, telling me I needed to wait 10 days before getting the blood, or else it wouldn't work. Now I was completely confused and I needed to get the right answer from someone. Come to find out (later in the afternoon), that specialist WAS incorrect, and I was suppose to get the blood drawn while on the gluten prior to it. The lab used the blood and syrum and it got sent out yesterday. Anyhow, I just couldn't believe that a specialist who works with celiac patients gave me the wrong info, and I tried clearing it up with the rest of the people who are trying to help me, to make the correct decision. Now onto my question! (sorry kind of long ^^'): How reliable is the Celiac Plus test? It says under it that it should check for 5 different things in the blood stream (hoping they do that at the main lab, because the hospital sure didn't; the place where they just took it for storage). I couldn't find any info on the net about the procudures, but I did do it correctly right? And that if it comes out negative, should I be concerned that it wasn't accurate? Also, should I do the 10 days = no gluten after I get these results back? Thank you very much, and sorry for the long post again. Chris
  14. Thanks again everyone, I'm going to call in with my doctor first to try the blood work. This has been going on for months now, and it's just getting worse and worse, so I hope this can give me some relief. I always assumed before that celiac was more genetic, and found it odd that I could have this because both family lines in my blood have never had digestive issues. But I guess that isn't the case. anyway thanks again.