• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Rate this topic

Recommended Posts

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::(

Share this post


Link to post
Share on other sites
Ads by Google:
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

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

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 :)

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 :)

Share this post


Link to post
Share on other sites
Ads by Google:


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.

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
      108,929
    • Total Posts
      943,564
  • Member Statistics

    • Total Members
      67,193
    • Most Online
      3,093

    Newest Member
    ddinidaho@gmail.com
    Joined
  • Popular Now

  • Topics

  • Posts

    • I’m 62 and have just now been tested for Celiac.  My Titer was negative, I have zero IGa and too much IGg (16) which is an indicator of intolerance at the very least and may indicate the need for another endoscopy. He also tested for EPI (exocrine pancreatic insufficiency) which was negative.  I just had a colonoscopy/endoscopy last year as a part of being diagnosed w/ Gastroparesis. I also have (among other things which I’m not sure are as relevant) - T2 Diabetes, Hashimotos Thyroiditis (late 30’s) Chronic Kidney Stones (since age 40), Osteoporosis (way before Menopause and not well controlled), and Gallbladder disease.(was removed) I’m discovering that all those I listed may be related in some way, and related to Celiac.  I haven’t seen the gastro doc for followup since the testing (obtained results from lab) so I’m not sure what he’s going to recommend.  Here’s where it gets scary... my daughter has many of the same things. She was just diagnosed with EDS (Ehlers-Danlos Syndrome) at 32.  She was diagnosed w/Glucose intolerance at 15, had her Gallbladder removed at 20, PCOS at 22, and Gluten intolerance at 30 (no testing, just her gastro’s recommendation). She’s been diagnosed w/Gastroparesis, POTS,  MAST Cell Activation Disorder, Peripheral Neuropathy, (lost use of her bladder and has a neuro stimulator) - all in the last year.  Too much coincidence for me.  This has to be all related. I keep reading more and more studies linking all these things (like EDS and Celiac) together. My daughters  geneticist is blown away by the multiple overlapping and co-morbid conditions we have and tells us it’s not uncommon. She also says research is expanding.  Sadly, the specialist docs seem baffled and can’t even begin to address our issues, and only help to manage the symptoms - sometimes. And every “Disease/Disorder” has a “diet” or protocol, and they are all at odds with each other - very frustrating.  I guess the moral of this story is to let others know that there’s a lot more to all this than meets the eye. Don’t let anyone tell you you’re fine if you have what seem to be strange unrelated symptoms. You’re not crazy. Keep fighting for understanding and knowledge. Be an advocate for yourself, you’re loved ones,  for us all.      
    • Nice to know that Disney makes an effort to take care of people with allergies or special diets (like gluten free!): https://publicaffairs.disneyland.com/walt-disney-parks-resorts-receives-honors-allergy-friendly-fare/
    • Wow, I also had pyloric stenosis that was misdiagnosed for some weeks as an infant (and almost died from it).  I also have Raynauld’s and I started following celiac diet, finding an immediate improvement of my symptoms.  I thought I was the only one that had all 3 of these diagnoses.   Interesting.
    • If you are lucky enough to travel in the Spanish-speaking world, just about anywhere you go, you will very likely run into a some version of chicken and rice, or ‘Arroz con Pollo’ as it appears on countless menus. This Cuban-style version relies on annatto oil to give it a red color. You can make your own annatto oil by putting achiote chili seeds in vegetable oil and heating it up for a few minutes over the stove. Cool and store. This version of chicken and rice is tasty, gluten-free and keeps well in the freezer. View the full article
    • I was diagnosed with celiac at the end of October. My DGP IgA was tested September 12th and was 127. I just got it retested and it was 135. I have been eating gluten free since I was diagnosed. I thought the numbers should be going down. How long does it usually take for the numbers to start dropping? Right now I feel like I must be getting cross contamination somewhere.
  • Upcoming Events