Discussions By Condition: Gastrointestinal conditions

If you have any suspicion you might have Celiac Disease...

Posted In: Gastrointestinal conditions 12 Replies
  • Posted By: 2silverwings
  • November 29, 2006
  • 08:54 PM

Just a suggestion to folks with gastrointestinal disorders.... Please please please do NOT go gluten-free before getting tested. A very simple blood test, followed by a biopsy if necessary, can diagnose you. But if you're already gluten-free, there is no way to diagnose you properly. In fact, you will have to go back on gluten which can make you sicker than ever once it's out of your system.

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  • Of course there's two sides to this story. Doctors had 10 years from the outbreak of symptoms until I diagnosed myself and went gluten-free. I could feel the effects of the new diet before I could even get an appointment with my PCP. Personally, I felt like I was close to death and I'm not sure what permanent damage may have been done if I had waited. Honestly, this time last year, I didn't think I'd be here right now.The blood tests, if performed all at once, provide a pretty good chance of giving a correct diagnosis. The biopsy, however, which is often touted as the "real way" to diagnose it, just measures the amount of damage done to the intestines. A LOT of people who test positive for gluten intolerence based on blood work will be turned away after a biopsy shows little or no damage.A lot of doctors won't even check if you insist on it. They think its ultra-rare because the current diagnosis rates are 1 in 4200. Most doctors in America have no idea that Celiac actually affects 1 in 100 or so. A lot of dieticians and nutritionists are just as hopeless; I've heard stories of them telling patients "Its not a bad case, you can cheat once in a while" and I've heard stories of where they recommend incorrect ingredients.In my opinion, the sooner you start healing the better. If you try it and you realize it works for you, who cares what the doctors have to say, really? They're just trained to sell drugs, and there are no drugs that treat the core issue with this disease, so what is the point?
    Azaral 152 Replies
    • November 30, 2006
    • 01:49 PM
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  • I agree with you Azaral, I´ve been sick since I was a kid, I have several neurologic problems (sensorineural hearing loss, vision loss, now I developed peripheral neuropathy and I just turned 21) they also diagnosed me with diabetes not long ago and after I had the flu this year I´ve had many gastrointestinal symptoms that dont seem to go away, I even had vomiting in occasions and no doctor could figure out what´s wrong with me, I´m also short and underweight and I have a really hard time gaining weight, after coming across celiac I realized I had many of the symptoms, I tried a gluten-free, lactose-free diet and I got WAY better, I had no more nausea (which i had had for months before) no more stomach pains or diahrea, and its unbelievable that they never figured out I could have an autoimmune disorder, especially having tested positive for certain antibodies as a kid. They just think because celiac is not COMMONLY DIAGNOSED that it isn´t something a lot of people have, as we know, celiac can be asymptomatic for a long period of time... you would think a doctor would figure that out.
    the_one 39 Replies
    • December 5, 2006
    • 04:47 PM
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  • I'm glad to hear you're feeling better :) I can only fear what I may have been diagnosed with and treated for if I had been more active in seeing the doctors between ages 18 and 24 when I tried gluten free on what I figured was a "last chance to stay alive." Considering the state I was in, I can only imagine what those treatments might have done to me.1 year is approaching for me in a few months, and my plan is to go in for a physical and see if the doctors can find anything at that time. It used to be that a PCP would refer me to 2-3 specialists, and I couldn't go to any kind of specialist without having some steroids or other drugs thrown in my face while discussing the effects of various surgeries.Back then, they never ran out of things that were wrong with me. After 1 year I bet they can't find a ***n thing.
    Azaral 152 Replies
    • December 5, 2006
    • 04:56 PM
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  • I hear you, I've had so many weird diagnosis, first it was Turner syndrome, then Alport syndrome only based on my short stature ... now I come to find that my sensorineural hearing loss, bad vision, neuropathy, short stature etc could all be linked to celiac in one way or another, all of them...
    the_one 39 Replies
    • December 8, 2006
    • 01:20 AM
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  • I suspected that I had Celiac and was referred to a gastroenterologist for testing. I had already removed wheat products from my diet, and told the specialist that I had done so, in case I needed to reintroduce them prior to testing. She told me that it wasn't necesssary, that I could be tested even though I hadn't consumed any wheat products for several weeks. Needless to say, my test results turned out normal. I still don't know if I have it or not, but I returned to wheat, and my symtoms continue.
    Anonymous 42789 Replies
    • December 14, 2006
    • 08:30 AM
    • 0
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  • I have all the symptoms of Celiac., and I went for a blood test to find out..and it came back negitive......So can you tell me what i should do..shoule i just go on a glutin free diet.and see if it will make me feel better?
    Anonymous 42789 Replies
    • September 12, 2007
    • 05:04 AM
    • 0
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  • The same thing happened to me! My sister was diagnosed with Celiac (which gives me a 1:22 chance), and I went in for testing because I've had weird GI issues, anemia, etc., but by the time I got tested it'd been 2 months since I stopped eating gluten. My GI doc said it wouldn't matter, ran the blood test and found I was borderline, did a full colonoscopy and endoscopy and determined that there was "some but not enough" damage. He said I had IBS. Now, 2 years later, I've been diagnosed with rheumatoid arthritis, anxiety, depression, acid reflux-- you name it-- and came across an article just a few days ago and learned for the first time that it really DOES matter if you stop eating gluten before the tests. I've been sick with all sorts of things for years, have generally just felt terrible and tired and had this odd malaise, and I feel like my GI doc should have known better. I'm mad. I'm mostly mad because now I suspect it's gluten that's making me sick, but I have to keep eating it and keep being sick or I'll never know for certain. I keep vacillating between giving it up and forgetting the doctors or starting from scratch, and I really don't know what to do.
    Anonymous 42789 Replies Flag this Response
  • I have all the symptoms of Celiac., and I went for a blood test to find out..and it came back negitive......So can you tell me what i should do..shoule i just go on a glutin free diet.and see if it will make me feel better?Hey, I know that this is not the same as you guys, but I suffer from what they have told me is psoriasis. My psoriasis looks strange though and not like any of the listed types I have seen in images. I am 20 years old and female. I only weighed 99 pounds and I am 5 foot tall. I eat a lot for my size but I cannot gain weight at all. I am told that I look way younger than I am. I have "psoriasis" all over my body. Up until recently I had weekly dangerously low sugar issues that would make me so weak I would fall. My bones are in terrible pain to the point where it is hard for me to open doors sometimes. And so far, I have not been able to get a physician or a dermotologist to believe any of it. Except maybe my age and my weight and height. Recently my fiance told me to stop eating wheat, it's been about two weaks and although my skin is still bad, I have had NO sugar issues, my bones feel better, and I am seeming to gain some weight. My mother also suffered from the same thing and now has colidis. (can't spell it) I don't know about any of you, but no matter what the ailment, if it is life changing enough, gluten-free is worth a shot. Think about it, doctors see you as a paycheck and nothing more. But these are our lives.
    Anonymous 42789 Replies
    • December 16, 2009
    • 11:58 PM
    • 0
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  • The same thing happened to me! My sister was diagnosed with Celiac (which gives me a 1:22 chance), and I went in for testing because I've had weird GI issues, anemia, etc., but by the time I got tested it'd been 2 months since I stopped eating gluten. My GI doc said it wouldn't matter, ran the blood test and found I was borderline, did a full colonoscopy and endoscopy and determined that there was "some but not enough" damage. He said I had IBS. Now, 2 years later, I've been diagnosed with rheumatoid arthritis, anxiety, depression, acid reflux-- you name it-- and came across an article just a few days ago and learned for the first time that it really DOES matter if you stop eating gluten before the tests. I've been sick with all sorts of things for years, have generally just felt terrible and tired and had this odd malaise, and I feel like my GI doc should have known better. I'm mad. I'm mostly mad because now I suspect it's gluten that's making me sick, but I have to keep eating it and keep being sick or I'll never know for certain. I keep vacillating between giving it up and forgetting the doctors or starting from scratch, and I really don't know what to do.If you feel that gluten is making you sick, stop eating it!!! I went for all the tests and it turned out that I don't have celiac disease but it doesn't matter to me -- gluten still makes me feel ill, so I cut it out of my diet altogether. I am Gluten Intollerant!! I suspect you are too!
    Anonymous 42789 Replies Flag this Response
  • Just a suggestion to folks with gastrointestinal disorders.... Please please please do NOT go gluten-free before getting tested. A very simple blood test, followed by a biopsy if necessary, can diagnose you. But if you're already gluten-free, there is no way to diagnose you properly. In fact, you will have to go back on gluten which can make you sicker than ever once it's out of your system.I didn't need a doctor to diagnose me I listened to my body and it said no gluten. I didn't waste thousands of dollars in insurance money or waste doctors time. Ultimately the only cure cannot be offered by the doctor, only by diet. I started by a food diary and symptom diary eating my regular food and the times the symptoms started. Some days were obviously better than others. As I narrowed it down, I found out which foods made me feel better. It was hard at first because of all the hidden glutens but I chose to eat simply whole foods not processed. Remember the old adage you are what you eat, at least start there and be responsible to your body and self. Also being gluten free is a beneficial diet for weight stability and diseases like diabetes- (its genetic kin). It will definitely NOT hurt you to not eat gluten. Unlike the reverse, it can silently and slowly kill you and make your life miserable if you are allergic or sensitive to it. In these times, it is our responsibility to be proactive as not to let the price of medical services be wasted in replace of personal responsibility.
    Anonymous 42789 Replies Flag this Response
  • I have been doing a lot of research. My daughters have probs with gluten. One I suspect has celiac disease and the other is non celiac gluten intolerant. We have been through the testing. The one I don't think has it did gain weight and settle down after going off of it. The other was tested under the age of two and so of course tested negative due to not yet producing significant amounts of IgA or IgG antibodies. Please know that you do not have to have celiac disease to be severely gluten intolerant. It can make you almost as sick as celiac. There are several great books by doctors I have read on this very subject. There is a gluten intolerance stool test you can take up to two years after stopping the consumption of gluten. It won't tell if it is celiac but will tell you if you are gluten intolerant. Some doctors who are researching this are starting to think the majority of the population is in fact gluten intolerant. I hope this helps you.
    Anonymous 42789 Replies Flag this Response
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  • I have been doing a lot of research. My daughters have probs with gluten. One I suspect has celiac disease and the other is non celiac gluten intolerant. We have been through the testing. The one I don't think has it did gain weight and settle down after going off of it. The other was tested under the age of two and so of course tested negative due to not yet producing significant amounts of IgA or IgG antibodies. Please know that you do not have to have celiac disease to be severely gluten intolerant. It can make you almost as sick as celiac. There are several great books by doctors I have read on this very subject. There is a gluten intolerance stool test you can take up to two years after stopping the consumption of gluten. It won't tell if it is celiac but will tell you if you are gluten intolerant. Some doctors who are researching this are starting to think the majority of the population is in fact gluten intolerant. I hope this helps you. I had gastro issues for more than 35 years before I figured out I had gluten issues. I went to over 35 doctors whom all told me I didn't have it. I had the blood test, the scope and finally a chiro did the DNA testing for the HLA DQ2/8 gene. BINGO, I received the celiac gene from both parents and am definitely celiac. I am still not well and have neuro and hormonal issues that are now a problem. I think I have had some major damaged because of the prolonged delay of diagnosis. I need to find a great celiac doctor that understands the broad spectrum of this disease.
    cozynana 39 Replies Flag this Response
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