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darkangel

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  1. I'm not going back to that particular doctor but I'm wondering if it would be inappropriate to mail her this article? http://www.celiaccentral.org/What_is_Celia...iac_Disease/27/

    Not really to one up her but to educate her so the next person that walks in the door isn't treated like they are insane.

    You could, but I doubt it would do much good. I've been through six different GIs and none of them are open minded. Most doctors think they know it all and their egos won't allow them to learn anything from a patient, no matter what sources are there to back them up.


  2. There could be other things besides gluten that are causing problems for you. People who have problems with gluten often have problems with dairy, too. Other common offenders are sugar, corn, eggs, soy, nuts and peanuts. A strict elimination diet where you eat only a handful of foods you feel are safe for you can help you figure out what foods are your triggers. Do a search for "elimination diets." There's plenty of info out there.

    I'd also suggest going to another gastro doctor for second opinion. A diagnosis of IBS really doesn't get to the source of your problem. You need to find a supportive doctor who's willing to work with you to find some answers and help you get some relief. You might also consider seeing a naturopathic or alternative medicine doc, if there are any in your area. I've found they're more likely to really listen and be helpful.


  3. This GI that I'm going to is supposedly good. His name is Weinstock and he was listed either here or another celiac site.

    To the person who suggested Enterolab, I was under the impression that they don't actually give a diagnosis of celiac?

    Then you should have better luck with the GI.

    Enterolab can indeed give you a diagnosis... that's their specialty. Check out their Web site for more info, if you haven't already.

    https://www.enterolab.com/Home.htm


  4. Sigh - one day doctors will be able to figure this stuff out. But until then, I prefer to try to heal myself. 10 years of mis- or no-diagnosis has kinda soured me on all of them.

    Yeah, I feel that way, too. Not to mention the destructive rounds of prednisone and immunosuppresants. I'd think you'd have a better selection to choose from in California, though. I wish I lived in CA or NY where the more progressive docs seem to be clustered.


  5. Question -what test exactly did your doc think would show accurate results without gluten ingestion? I'm asking 'cuz I've never heard of one :huh:

    Also - did the doc test you for Crohn's? The area of your pain sounds like where most Crohn's patients hurt - and I've heard many Crohns sufferers think they have appendicitis at first. (I'm still waiting on the last of my test results for Crohn's so I've been reading up on it... colonoscopy in 2 weeks is last step).

    I guess he thought since I haven't been 100% gluten free and he was running the entire celiac panel as well as taking biopsies, something would show up if gluten was a problem.

    When I was originally diagnosed with ulcerative colitis in '99, a colonoscopy revealed bleeding and inflammation in the descending colon that was in line with UC. Since that time, there's been some debate about it being Crohn's instead and this latest episode is definitely not typical of UC. (And a flex sig showed the descending colon is now normal and healthy.) But, as I said, he ran some type of inflammatory bowel blood test and it came back "positive" and "indicative of ulcerative colitis," although he didn't explain how the test worked or what the numbers/levels were.

    I do know that I have recurrent struggles with candida, so now I'm looking at that angle again, as I know that's at least played a part - if not the total cause - of my digestive difficulties dating back to my college days when I was diagnosed with IBS. My plan is to experiment with a gluten-free, dairy-free, anti-candida diet while taking natural anti-candida supplements and Nystatin and see how it goes. I may just be one of those people that never gets a firm diagnosis.


  6. Have you thought about testing at Enterolab.com for the gene test?

    I've thought about it, but have been reluctant to spend the money as I'm sure insurance won't cover it. There's no history of celiac in my family, so I tend to think I don't have the genes, but I do obviously respond well to a gluten-free diet. I think my situation is complicated by other things. It's not just a gluten issue for me... it's a host of other things - candida overgrowth, food reactions, lactose/casein sensitivity... who knows what all. I guess I'm looking for an easy, tidy answer and there's not one.


  7. darkangel - I am so sorry that this round of tests didn't offer you more information.

    Just a thought here... have you ever been 100% gluten free for a significant amount of time and did you notice any improvements? If you are sensitive to it and you are still consuming a small amount maybe its keeping you irritated enough to keep the distended belly going.

    Is it possible to get a second opinion or do you have "next step" with this doc?

    Yes, I have been completely gluten free. Actually, I was on the Specific Carbohydrate Diet for over a year, which is not only gluten free but grain free. I did well, but I was REALLY sick when I started the diet, so although it helped me recover, there was no sense of suddenly feeling healthy and normal. I'm trying to get up the gumption to get back on it, but I dread it. It's so restrictive and labor-intensive.

    No, there's no "next step." He was kinda like, "Congratulations. These test results are great. Off you go. Just call us if you start to have problems." I've seen six different GIs over the course of my illness, along with other doctors. Even consulted with a brilliant doctor out of San Francisco by phone. They all seemed to be stumped by me. My wonderful general practitioner - who practices complementary medicine - tells me I now know more about digestive diseases than he does because of the research and reading I've done over the years.


  8. Well, this figures. Just got back from my gastro doc's office. All celiac panel results were normal. Some other test they ran came up positive for inflammatory bowel disease, indicative of ulcerative colitis. (Which was the diagnosis I was given in '99 when I first got extremely ill.) Everything else is normal... iron and hemoglobin levels, proteins, thyroid... even my bone density scan shows I am now back in the "normal" ranges and evidently am no longer qualified as having osteopenia.

    Results of my endoscope show no bacteria in the stomach. Biopsy of upper small intestine shows no indication of celiac disease. Flex sig showed no signs of ulcerative colitis in the descending colon. All I have is a CT from my ER visit that showed a "thickening" of the colon walls in the area of the turn between the ascending and transverse sections of the colon. My GI doesn't even want to do a colonscopy because he says we'll be looking at the "inside of the tube" and won't be able to see any thickening as shown on the CT. Having trouble in this area with no inflammation in the rectum or descending colon is not typical for ulcerative colitis, so I guess we don't know what's going on.

    So. I guess I'm back to just eating carefully and mostly gluten free, keeping a food journal and trial and error. This is very frustrating. It's nice to know all those blood tests were normal, but I still don't have answers for why I have digestive problems, food reactions or why I look perpetually pregnant. Maybe it's just a combination of being gluten/dairy intolerant and having candida issues. *sigh*


  9. The stool description does sound suspicious for celiac. Is there any history of it in your family?

    Candida overgrowth in the intestines is very common. Risk factors include having several courses of broad spectrum antibiotics and/or being on antibiotics long term for acne, and a poor diet high in starches and sugars. Try taking this online quiz to see if it might be a problem for you.

    http://www.yeastconnection.com/yeast.html


  10. Call me antisocial, but there are days when it's just not worth putting yourself through something like that. If the function revolves around people eating stuff I can't eat and there are NO options for me, I'm probably not going to go. It's no fun watching everyone else enjoy themselves and stuff their faces, smell the delicious smells, and have to answer the constant questions about why you aren't joining in and eating like everyone else.


  11. It seems a lot of things are hidden behind gluten. I don't know how long the withdrawal symptoms would be but 3 months seems like a long time. Have you tried dairy free? That can cause problems with a lot of new celiacs.

    First thing that popped into my head was casein (dairy protein). Check out these links on the gluten-free, casein-free diet.

    http://en.wikipedia.org/wiki/Gluten-free%2C_casein-free_diet

    http://www.gfcfdiet.com/


  12. Darkangel, the symptoms you describe sound like candida overgrowth, but not bacterial overgrowth.

    Janet, your symptoms do not sound at all like mine. I get stomach pain and watery diarrhea from the bacterial overgrowth. I get lots of gurgling in my gut, too.

    My bad. I thought they had similar symptoms and they do, to a certain extent. Symptoms of bacterial overgrowth of the small intestine from Genova's Web site:

    abdominal bloating and gas and possibly diarrhea within one hour of eating. You may also experience problems digesting dairy products or other carbohydrates. Unexplained weight loss, steatorrhea (fatty diarrhea) and Vitamin B12 deficiency are other clues to bacterial overgrowth.