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Oh My Tummy!
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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::(

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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

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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

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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 :)

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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 :)

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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.

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    • That's great to hear you are feeling better Nightsky.  I really think when our GI systems are in distress already that it doesn't take much to set off symptoms.  Once I eliminated the other foods that cause me symptoms that helped a lot too.  And added some extra vitamin D to my diet and selenium. Many of us have developed reactions to other foods besides gluten and need to avoid them to keep symptoms at bay.  For me nightshades, carrots, soy, dairy, and celery all cause symptoms.  It took me awhile to figure out all those food culprits, but it made a big difference getting them out of my diet. But we are all individuals, and our bodies react individually.  So you may or may not have additional food intolerances develop. Celiac is one of those life journey things and we learn as we go.  Just keep the bottle of aspirin handy!
    • I know that Lea & Perrins Worcestershire Sauce  in the US is gluten free, I also know that in Canada it is NOT. This is a very reliable site: http://www.glutenfreedietitian.com/vinegar/ But it is in the US. I'm agast that the Irish Celiac Society says malt vinegar is gluten free.  I wouldn't use it. No sense taking any chance at all.
    • You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse.  Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 
    • Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
    • Hi All, I'm new to this and very confused! I have Lea & Perrins WC sauce, it lists it's first ingredient as Malt Vinegar.  I have the Coeliac Society of Ireland Food List 2015 here, and it says "All Vinegars are Gluten Free including Malt Vinegar." Doesn't that mean that L&P Worcestershire sauce is safe?   Their website states " Lea & Perrins® Worcestershire Sauce is cholesterol free, fat free, preservative free, gluten free and has 80% less sodium than soy sauce. " I'm cooking for my coeliac niece, can't afford to make a mistake!
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