Celiac.com Sponsor (A1):

Celiac.com Sponsor (A1-m):


Advanced Members
  • Content Count

  • Joined

  • Last visited

About Riayn

  • Rank
    Top Contributor

Contact Methods

  • Website URL

Profile Information

  • Location

  1. I am in the same boat as you are portrgirl. I was diagnosed 5 years ago with having IBS without any testing at all being done. I was put on tablet, told to avoid foods that made me sick and sent home. Five years later, I still have all the same problems.

    This time around I am making them do every single test available. So far my blood test came back negative, but I have been referred to a gastro doctor, who I will see today.

    Hopefully he will want to do a biopsy for Coeliac disease and have a look around to make sure there is nothing abnormal.

    It is extremely frustrating.

  2. I got the results of my blood test today and they came back negative for Celiac Disease. However, my doctor is sending me off to a gastroendologist to have more tests done and for him to have a look at my GI tract. I was curious as to whether it is possible to test negative for Celiac on the blood test but have a positive biopsy.

    I must admit I was upset that it came back negative as I was hoping that was the answer to all my health concerns, but it may be that I have to keep on looking.

  3. You really need to find a new doctor. Your diabetes needs to be properly managed and they can't do that adequately until they determine if you have type 1 or type 2 diabetes.

    The symptoms you have sound very much like celiacs and you definitely should be tested for it.

    Best of luck finding a doctor out there that takes your health concerns seriously. They are out there, trust me. It just may take some searching.

  4. You may also want to get tested for fructose intolerance. The symptoms are very similar to what you described and one of the things you can't get if you do have it is wheat. The test is a simple H2 breath test. It may help explain why you feel somewhat better cutting out gluten, but not completely better.

    Also it would help to go and see a dietician to work out a healthy gluten-free diet for you.

    Best of luck, I do hope you are feeling better soon.

  5. This time around I had a really positive experience. Not only was my doctor happy to test for celiac disease but he is also testing for thyroid disorders and diabetes, plus a full blood panel and HIV and Hepatitis A, B,C. He also has me doing a 3 day stool collection to rule out any parasites.

    He also spoke to me about dietary fructose intolerance, which seems to be a very rare and misdiagnosised condition. By the time I left my appointment you could have knocked me over with a feather.

    I have all fingers and toes crossed that this time around I may finally have a correct diagnosis.

    It proves that there are some doctors out there that do listen to their patients concerns and are willing to test all the possibilities.

  6. I had my blood tests done yesterday. Not only did I get a celiac screen, but my doctor also tested for diabetes, thyroid disorders, hepatitis A,B,C and HIV, plus a full blood panel. Can't accuse him of not being thorough.

    My doctor also talked to me about fructose intolerance, which means not only do you react badly to wheat, but other fruits and vegetables as well. Apparently fructose intolerance can be tested for using a H2 breath test.

  7. Maybe one of the reasons that doctors do not test for celiac is because up until very recently it has been seen as a very rare disease. I believe the figures used to be 1 in 10,000, instead of the more truer figure of 1 in 133.

    Seven years ago when I referred to a leading GI specialist for vomiting, diarrhea and dramatic weight loss (I lost 25lbs in less than a month), I was told I was just stressed and to "get over it" as she handed me a prescription for anti-nausea drugs. Yes, I was stressed because I was throwing up twice a day, couldn't keep any food down and was trying to work my way through my science degree at the time. It took a year before I stopped throwing up every day and now seven years later I still have diarrhea and nausea. *sigh*

    Perhaps as doctors become more and more aware of this disease, others won't have to suffer for years before being diagnosed.

  8. Hello. I am new to this forum, and am looking for answers. I am an American who has been living in Japan for 30+ years. I have had digestive problems since childhood, and first suspected celiac when visiting with another American friend who had been diagnosed with it about 15 years ago. Since then I have eliminated all breads, pasta, cakes cookies, etc. from my diet, and my symptoms disappeared. However, recently they have been coming back. I basically am in the same state I was 16 years ago, so I suspect I am eating things that are toxic for me without knowing it. I eat soy sauce every day, barley tea, sweet rice, foods with modified food starch. Do all these things have gluten? I really would like to find a nutritionist or doctor who can advise me. It seems the disease is non existant here, so doctors don't seem to know anything about it. Is there a list somewhere of foods that have gluten? Does anyone know a doctor in Tokyo who is familiar with celiac disease?

    Thanks for any help.


    I can't help you with a doctor in Tokyo as I am in Australia, however I can help answer your questions about foods. Soy sauce and barley tea both contain gluten. Soy sauce is made using wheat, so you will need to find a gluten-free version of it if you can't do without it. I am not sure about sweet rice as I don't know what is in it, other than rice. It is best to check the labels of everything you are eating. If it contains wheat, rye, barley, oats or malt then it is best not to eat it.

    However before going gluten-free you may want to get tested for celiacs first.

    Best of luck!

  9. Portion sizes are really important. You can much sure that everything you eat is low-fat, but if you are eating too much of it then you are always going to put on weight. Also, stay away from fad diets. You might lose weight whilst you are on them, but as soon as you go off them the weight comes straight back on and then brings its friends over.

    Make sure you are getting some daily exercise as well. Invest in a pedometer and make sure you are doing at least 10,000 steps (walking steps, not stairs). It is a really easy way in to increasing your exercise. Also it is fun and you and your husband can "compete" to see who can do the most steps in one day.

    Best of luck. Losing weight can be really hard and de-motivating at times, but the end result is worth it.

  10. A good example is the 'diagnosis' of IBS (irritable bowel syndrome). If you think logically, you might wonder, what is it that is causing the irritation? Let's find out, and eliminate the cause, and cure this person (I believe it is usually an intolerance, which is very often to gluten, dairy or soy, and many times all of those). But of course, if doctors would cure all their patients, we wouldn't need as many doctors any more. And drug companies wouldn't make money, if everybody just changes their diet.

    I agree. I was "diagnosed" with IBS five years ago with no other testing being done. With that diagnosis came anti-depressants and anti-diarrhea medication. Initially it did help, well, I wasn't spending all day every day in the bathroom, but it never really stopped any of my symptoms, just lessened them to where I could live a somewhat normal life again. On Monday, I am demanding that they do some testing. Should be an interesting doctor's appointment.

  11. I was born with a lazy eye and had it corrected in 1969 when I was 10 years, it was great for years then I became near sighted, and now it is getting worse again. My eye is started to cross again when I am tired. Only one eye reads at a time. I also have been having trouble driving a night for some reason. the other day I had an appt and by the time I left 4 hrs later, I was doing some testing invloved a lot of reading. I saw double for a little more than a hour. Some days are worse than others. I have a hard time reading freeway signs can't read them unless I am almost on top of them. One thing at a time I believe eyes next.

    Wow... that sounds like my eyes. I have a lazy left eye plus myopia. I had my surgery on my eye in 1983, but it didn't work. I find that I get blurred vision from time to time and my distance vision is hideous despite wearing contact lens.

    I wonder if it will get better once I go gluten-free. That would be nice.

  12. I also have the cold hands and feet as well. As far as I know my thyroid is functioning fine. I got an MRI done on it 14 years ago, when I was having some really bizarre symptoms following getting glandular fever (mono) - my glands were swelling up every 2 weeks.

    My blood test is on this Monday morning, so I guess I will soon fine out whether I do have celiac's or not.

  13. I would try to convince your husband to go in and demand to be tested, particularly if he has been diagnosed with IBS and has never been tested for celiac's before. Well, that is what I am going to do on Monday.

    It is my understanding that a diagnoses of IBS is given after all other testing has ruled out any of the other GI diseases.

    I can let you know on Monday how well just demanding to be tested works. Hopefully, they will not write it off as stress, like they have done to me many times in the past.

    Best of luck to you and your husband.

  14. After suffering for the past 10 years or so with diarrhea, wind, nausea, cramping etc, I am getting my doctors to do a blood test for celiac's on Monday. I was diagnosed with IBS about 5 years ago, but have had no tests done to rule out any other GI diseases.

    My question is for those of you already with a diagnosis. Back before going gluten-free, did your symptoms range in severity? I can have really good weeks with barely any diarrhea or pain - the wind is always there, and then cycle onto really bad weeks. I also find that my symptoms increase in the week before my period - it is a handy warning system.

    Thanks :)