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Lisa S

Check Out These Reactions To Gluten Challenge

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Hey there all, I'm new to your wonderful forum.

I'm 37 and a Personal Trainer. I've been gluten free for 8 months, very strict. I could not afford the tests however, so I don't have a diagnosis etc... I just knew it was the only thing I hadn't tried and I had 2 friends who are celiac to follow. Amazing results. Left behind bloating, gas, burning, sharp pain, systemic inflammation, muscle/joint pain, endometriosis symptoms SOOOO suddenly better by 80%, even had pain urinating after lots of ingested yummy (but evil!) gluten. All gone.

But NOTHING could prepare me for what I experienced upon my INADVERTENT gluten challenge last week when I let a fine restaurant lull me with "don't worry, it's gluten free sausage, our chef and his wife are on the same diet..." and then, the next thing I ate in the same meal was truly my fault- succumbing to peer pressure and again, "don't worry, you can eat SPELT pasta, we already told you our chef and his wife are on the same gluten free diet." Of course I told them I can't eat spelt. Which then turned into quite a little scene with the other EIGHT people at the table. Never have I folded but I realized I never have challenged myself so I ate ONE little ravioli and waited... I was already having that "ohmigawd I swallowed razor blades" feeling from the sausage and it only took 20 minutes to bloat up like I had swallowed a medicine ball (and my gut was nearly that hard too).

I broke into a sweat and excused myself from the restaurant and got into my car. I could not even sit down for the pain in my rectum like a dagger, had to sit on my left glute and drive! And over the next 7 hours here's what I felt:

-hot and cold sweats

-fever of 100.0F

-stabbing, burning, sharp pain in gut

-every muscle in my body constricting

-bloating with hard abdomen

-arthritis like pain in hands, knees and feet

-flu-like symptoms where all my skin hurt to the touch as though bruised

-fire outlining my intestines and every small movement felt like I ate shards of glass (sharp pains)

-pain urinating

-pain to even pass gas and oh yes indeed to have that super freaky bowel movement...

Okay, so I think that was it. Here's the kicker, I have felt like that but with less intensity for a WEEK AND A HALF now! Enough already!!!!

Has anyone else experienced this? I can't seem to find any info on gluten challenge symptoms. I used to have EXACTLY THE SAME stuff happen to me when I was a kid. Amazing how the body compensates all these years until the pain came back under stress from loss of job, marriage, move to another country... you know, run of the mill crap. LOL

Since I added Goji juice and Aloe Vera gel in the last two days I feel a marked improvement.

So what say you out there? Is that normal?

Thanks in advance for the insights!!!


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Celiac.com Sponsor (A8):

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Unfortunately your reaction is not unusual. Oh how I, and I am sure many others here, wish that our body would just explode the gluten out and then everything would be over. Once those antibodies start reacting it can take a while for them to calm down again. For me the gut stuff takes from 3 days to a week to be totally over but the joint and muscle pain and the neuro effects last about 3 weeks. I get some gut relief, pain wise from Pepto Bismal liquid. At least for the glass in the stomach pain. The cramps well nothing seems to help those. I am glad you are starting to feel better. I would write a short note to the owners of the restaurant and politely tell them what the waiter said, what was wrong with what he said and what the results were for you. It wouldn't hurt to add a page with forbidden foods taken from a respected source to try and educate them and the clueless waiter. The safest meals IMHO when eating out are simple ones. Steak or chicken, plain and cooked by itself in a clean pan and a baked potato will generally be safe. Be careful of side veggies unless you ask that they be cooked plain andseperately also as many restaurants have their own 'special' seasonings that are often pinched in while cooking. Cooks can use their fingers ungloved alot with food that is being heated. When I was a chef I thought nothing of handling gluten foods and then pinching those spices in. At least until I worked in a place that catered to folks with food allergies.

Make sure you let those food bullies at the table know what has happened as a result of their insistance and never ever let someone bully you into eating something you know isn't safe again..

Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Hi! Im in the exact same boat as you... IBS symptoms that wouldnt go away, botched celiac test (I was already gluten free) and gave my MD's advice to try gluten free some serious thought.

I have heard from a woman whose daughter has had Celiac for a while that the longer you go gluten-free, the more sensitive you become. This may be true for you also.

For me, I have only been gluten free for 3 weeks, and the time's ive glutened myself havent been so bad so far. Lactose symptoms are more acute and come directly after eating, but for me personally, gluten symptoms SEEM to come up to 12 hours later.

We shall see.. I glutened myself with stupid mineral seasonings this evening. I was at the salad bar at a natural food store and went for the mineral seasoning to go on my salad. I didn't use that much, and the last ingredient was... of course... malted barley. I felt a little feeling like someone prodding me with a toothpick from the inside out, but it wasnt severe. Im not sure that that super tiny amount will get me, but it just may.... gluten is gluten, right?

GOOD luck and sorry to hear about your glutening... no fun!

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