Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Oh My Tummy!
0

6 posts in this topic

I have had TWO Endoscopies with bisopys, and TWO rounds fo the blood test, no sign of celiac disease. So after 2 weeks of gluten-free'ing I had some gluten on Sunday. Couple little cake thingys at a chuch function, that was around 1130am or so. Felt fine rst of day, and then at dinner for some reason that I do not know remember (brain fog prbly LOL) I order a burger and did not tell them to keep the bun. Prbly been 4 years since i had a bun on my burgers, maybe once or twice in that period but I realy like burgers better with out the bun. That was around 6 or 630pm. Felt fine after that too... well for a while. Then at around 3am I woke up with a very bad stomache ache. Then around 445 when I get up and do my morning bible reading I could not focus at all, and had tons of gas/etc and stomache still hurting (even now at 7am).

BAH!!! :angry:

I guess that means either the four tests missed celiac disease, or it somehing thats normaly found with gluten like Dairy, eggs, etc. BAH. Why cant this be easy????? Maybe that test kit I ordered from Great Plains Labs will have a clue in it, I just hope I can get my doc to sign off on it so that its covered.

I have had the skin prick test for jsut about every food I eat and non of them should any re-action at all.

BAH!!! :angry::(

0

Share this post


Link to post
Share on other sites


Ads by Google:

Sorry to hear you're feeling crummy. :( I bet it's the gluten though. With your son's celiac it just seems so likely.

I just recently read a post by a lady on a Dutch celiac board where she'd had three rounds of tests (blood&endo), and only the last one detected damage. It had just not progressed far enough before then to be detectable. Kudos to her and her doctors to keep testing I must say. Although personally, I would have gone gluten-free long before that (as I did, lol).

hang in there,

Pauliina

0

Share this post


Link to post
Share on other sites

Vincent, Sorry to hear you're not feeling great.

So your tests are negative for celiac disease, however, you may have gluten intolerance without any detectable damage. I still think you should remain gluten free.

I had a mini cheesecake when I was intending to have a biopsy and I was fine BUT then I had 2 slices of bread and thought I was going to die. Took 10 days to fully recover. Specialist says the absolute worst thing thing we gluten sensitive can eat is bread.

I have read a lot of your posts and it definitely sounds like you have a problem with gluten, especially with your son's history. He got it from somewhere!

My 2 cents worth. Hope you feel better soon!

Yvonne

0

Share this post


Link to post
Share on other sites

Hi, Vincent--So sorry that your not feeling well. Bummer, I know. I have to say that your symptoms do sound like they're gluten related. And the family connection with your son. Maybe the new tests will uncover something--I hope so! At this point, I would listen to what your body is telling you (since the tests won't tell). I wish I had more to offer :)

0

Share this post


Link to post
Share on other sites

Sorry to hear you have been feeling bad...since you know you have a problem with it and see even some improvement on the diet what is keeping you from following it? You have nothing to lose and everything to gain by it. Even if it's just an intolerance and not celiac you definitely seem to have an issue...I hope you get feeling better here soon :)

0

Share this post


Link to post
Share on other sites




Sorry to hear you have been feeling bad...since you know you have a problem with it and see even some improvement on the diet what is keeping you from following it? You have nothing to lose and everything to gain by it. Even if it's just an intolerance and not celiac you definitely seem to have an issue...I hope you get feeling better here soon :)

Well if it was just me, probably would. But I ultimatly need to know if theres somthing else, for my son's sake. He seems to have inherited most of my umm "issues" so if theres some other intolernce here, I want to know to watch him for it too.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,636
    • Total Posts
      921,533
  • Topics

  • Posts

    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
    • 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.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,639
    • Most Online
      3,093

    Newest Member
    NickyW_UK
    Joined