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

A Cautionary Tale: Symptoms Are Not Always From Gluten
0

3 posts in this topic

I am writing with a cautionary tale. When those of us with food sensitivities have a GI problem, our celiac/gluten sensitivity, lactose intolerance, etc are almost always the first thing we go to. For over a two year period I had become convinced that my gluten sensitivity was becoming worse and worse. By November of 2012 I was having episodes of severe pain in my upper abdomen that also were accompanied by fever and chills. (It had been about 20 years since I'd last had a temperature over 100°). I was starting to make absurd conclusions about where the gluten was coming from (given how strict I've been with my gluten-free diet for over 3 years--I am very very strict). Absent any reasonable gluten sources, I began suspecting I'd developed sensitivity to corn or soy. But the events seemed unrelated to my consumption of those substances.

After an emergency room visit at the end of December and, and a miserable January, I finally got in to see an insightful GI doc, we began looking for other explanations. He scheduled some tests right away including an ultrasound (came back negative for disease or injury), and a CT scan with contrast dye and barium "smoothie". Much to my shock the radiologists found a tennis-ball sized mass in my mesentery. I am just recovering from the biopsy today to determine if it is malignant, but either way it will have to come out.

So my recommendation is that, along with the usual questions about whether it might be another food sensitivity, it is very well to consider that if your symptoms become increasingly or inexplicably worse, it may be worth asking your doctor to do a thorough exam for other possibilities. Especially if they are accompanied by chills or fever.

1

Share this post


Link to post
Share on other sites


Ads by Google:

Oh my, how scary. I sure hope you get good news from the biopsy!

Thank you so much for the cautionary message....You are so right, I think it's often too easy to assume our gluten troubles are the cause of all our problems.

0

Share this post


Link to post
Share on other sites

Yeah this is why I had major testing done before falling on food allergies.Blood tests galore,MRI,echo scan of abdomin and kidneys etc ,came back neg.I truely hope the best for you and a speedy recovery

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