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Could I Have Celiac Disease?
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3 posts in this topic

I've always had stomach problems, but over the last two years they have escalated. After a horrible breakup with a boyfriend, I lost twenty pounds. I started getting horrible stomach problems, terrible gas, reflux, burning sensations. My diet had changed, but it was actually a more healthy diet full of fruits and veggies and grains. It's two years later, and while I'm emotionally healed, my body is still troubled. I have constant gas and bloating and burning. I haven't gained an ounce, have actually lost weight even though I've been eating a ton. I've noticed changes in my teeth and nails, and sometimes I have strange sensations in my legs and feet...like tingling. They often fall asleep when I sleep. I've also been lactose intolerant on and off since I was a baby. My regular doctor suspected gluten intolerance and sent me to a specialist who laughed at me and told me I wasn't sick unless I was vomitting. He did do an endoscopy which turned out fine. He basically told me it's just my body and to deal with it, suggesting it's just IBS. Could I have this disease? Should I pursue testing?

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You may very well be gluten intolerant, but without the intestinal damage severe enough to back up the diagnosis, they won't call it celiac disease.

Your best bet would be to check out the testing at Enterolab . The tests there are senstitive enough to pick up gluten intolerance (or gluten sensitivity) in it's early stages before the intestines are very damaged.

I've been where you are at, as have many other on this board. I've been laughed at by doctors and treated like a hypochondriac. But I am gluten intolerant and I am now on my way to better health. Thank God for Enterolab!

God bless,

Mariann :)

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A visual inspection with an endoscope may not always reveal Celiac. While there is normally some inflamation present, it is not always the case. Furthermore, any inflamation that may have been present could easily have been attributed to some other cause.

You did not mention if biopsy samples were taken during the endoscopy. This is still the only sure fire method of verifying a Celiac diagnosis. The vilous atrophy associated with Celiac disease is not detectable via the endoscope. Several biopsies must be taken for external microscopic examination.

You also did not mention if you had the Celiac panel blood test. I would recommend you convince your G.I. doctor to at least have that done, and if it comes back positive, you may need to either get a second opinion of the biopsy slides, of if none were taken, to have the endoscopy procedure repeated. If your G.I. is unwilling to cooperate, I suggest finding a new one.

Best wishes,

Dewey

Marion, IA

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    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
    • So ok, I get the pain/bloating thing, but it still feels so crazy. But my god, I look 6 months preggers after dinner and 4 months the rest of the time. How long will this last?! I have not gained any weight but have to hide me belly now. I can hardly breath! Omg, that does take me back to pregnancy.  I had "acute marked focal duodenditis" a few weeks ago and an elevated DGP. the pain sometimes makes me seriously think I must be bleeding somewhere. It is actually worse then 3 weeks ago. Although many of the other glutening symptoms are finally vanishing. Even my mid and lower back is tender to touch. Sometimes it burns, aches or like someone is stabbing me in my side. My ribs hurt and everything is tender.  I am on protonix and fish oil. I have a prn for xanax which helps the pain (off market use for muscle relaxant).    I am fair skinned and notice a red under-the-skin discolored rash that comes and goes on my upper stomach. Sometimes it travels down one side. Not itchy. Almost like I can actually see the inflammation under my skin.  1) when will I stop looking knocked up?  2) Any other fair-skinned folks notice a purpleish-red rash on your bellies? It mostly goes away and comes back, which I tske to be a good sign. 
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