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      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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gluten Reactions Getting Worse, Not Sure What To Eat After Exposure.
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13 posts in this topic

I'm writing after a week-long ordeal after a very small gluten exposure. I'm feeling paralyzed about eating anything that isn't 100% guaranteed gluten-free and trying to figure out how to eat during the immediate healing period after exposure.

Since I went gluten free in early 2010, I've had a few accidental gluten exposures. Gradually, my reactions to "glutenings" have gotten worse and my sensitivity greater. I understand this is common, but it seems to have happened quite fast. Now my reaction is severe cramping and pain in the upper gut, nausea (but no vomiting), alternating chills and sweats like I get with bronchitis, sinus headache, and with this last exposure, fever as high as 102°. (I should note that it had been over 15 years since I'd had a temperature over 99°)

Last Friday I ate some likely cross-contaminated food and by Saturday morning I was cramping up and getting chills. Instead of resting I decided to take some ibuprofen and see a client, help a friend fix a dishwasher, and go out to a couple movies. Like a tough guy I was just playing through the pain. I also didn't follow my strict post-exposure diet: water only on the first day, followed by rice and bananas on the second. Gradually back to normal diet and activity by the 4th day. I think I was rebelling a bit because I'd been waylaid twice in December already by apparently minuscule exposures. Long-story short, after a trip to the ER for excruciating gut pain, nausea and fever, and a visit to the GP to check for infection (no evidence found), I am at about 80% of normal!

Does this sound at all familiar to anyone? Is this even a typical gluten reaction or should I be looking into something else here? I'm feeling a little paralyzed about eating anything that isn't absolutely 100% guaranteed gluten-free. What do you eat after a gluten exposure? Even if I take care of myself, I can expect at least 3 days of being out of service. Are there tricks for getting back on your feet faster?

P.S. I have an appointment with a GI doc at the end of the month to look into other possible problems, but that appointment seems like a long way off. I am trying to schedule an appointment with a dietician, but feel ill-equipped to ask the right questions. As for my diagnosis: my IgA tests came back decidedly negative, and I never got endoscopy because I'd been gluten-free for too long by the time I got in to see a GI doc. Before, my typical symptoms were bloating, lots of foul gas, and mild cramping in the upper gut, and, a few days later, severe burning and itching on the tail end of things. Following this I might get a rash in my armpits, elbows or along my waist, but I don't know if this is related: the rash doesn't seem match descriptions of dermatitis herpetiformis.

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Hi GL,

If you got hit twice in December and now in early January, you may need to tighten up your diet some. Not just for immediately following an exposure though, but all the time. The immune reaction is not going to stop within a couple days. It takes time for the immune system to back off and relax.

Sticking with easy to digest whole foods and avoiding starch and sugars may help. Plus taking pro-biotics and digestive enzymes. Pepto-Bismol may help with some symptoms.

Edited to add a missing "not" in this sentence. Geez!

The immune reaction is not going to stop within a couple days.

Edited by GFinDC
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What has helped me from not getting AS sick is taking the vitamin Celiact, which also has probiotics and enzymes to help you heal. Also, some Zantac with some Pepto is a great combo with a probiotic. If you can get a script for desolvable Zofran, that stuff is a miracle working for nausea.

As for foods to eat during feeling that crappy, I eat a lot of stuff that is mild and comforting to me. gluten-free mac n' cheese and gingerale have been what I've been living on as of late from the tummy problems I've been having from my brain tumor.

Like the person said above, you seem to be getting hit a lot, so I would also suggest being a lot more careful if you can.

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Hi GL,

If you got hit twice in December and now in early January, you may need to tighten up your diet some. Not just for immediately following an exposure though, but all the time. The immune reaction is going to stop within a couple days. It takes time for the immune system to back off and relax.

Sticking with easy to digest whole foods and avoiding starch and sugars may help. Plus taking pro-biotics and digestive enzymes. Pepto-Bismol may help with some symptoms.

Thanks for the advice. The problem I've had is that I can't definitively figure out where the gluten came from. I guess I need to be more careful than I used to be.

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It is not unusual to become more sensitive as one stays on the gluten free diet longer and longer. I don't eat anything "processed" after a potential cross contamination gluten exposure. The best way to track down a problem is, if you are not eating the same thing(s) every day, is to keep a food diary and note down everything that you are eating and taking by mouth, including medications. Do you know if you are sensitive to any other foods, besides gluten ? Do you cross react to even gluten free oats, as some do ? What about soy flour ? Was that ibuprofen really gluten free ? I cannot use anything anymore that was manufactured in a facility that processes gluten free oats, so that takes out a LOT of gluten-free commercial baked products and gluten-free baking ingredients for me. Plus, there are a lot of stomach viruses going around right now, so you could very well have picked up one of those and had that reaction in the mix.

I got a spectacular rash from a "natural" deodorant last year that supposedly didn't have any gluten ingredients, I'd love to know just what the "special" herbal ingredient is that is setting me off. It is also in those so- called "moisturizing" strips they put on disposable razors now, which I loathe. :angry:<_< Yet I've never reacted to some other, different, elemental scented oil extracts. (I've tested myself). This is probably not your problem, but it just shows that there can be other, topical reactions, and the skin, after a gluten attack, does get really sensitized and primed for them. A rash along anywhere you can possibly be touching elastics or rubber not a good sign, (could be potential cross reaction to latex :blink:, so you might try avoiding that food family, or asking yourself if you have introduced anything different to your diet) try going to unscented laundry detergent, make it a point to rewash clothes, rinse well, and only wear once, and look carefully at your clothes and the country of origin, and if they are using certain types of stretchy threads or if you are using synthetic instead of natural cotton.

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The holidays are a treacherous time for us. I got glutened at least once while I was home, and probably ate (willingfully ignorant) a little too much buttery things, stuff with soy, etc etc. It all resulted in me feeling like crap for days, being horribly sick on New Years, and only in the past few days getting back to normal.

Glutenings are cumulative, so even though you think you might have healed up, your gut needs a good recovery period. I try to cook at home as much as humanly possible, and only eat out maybe once a week and at places I know are more or less safe (there is never 100% safe unless you made it yourself).

As for dealing with the aftermath, ginger is my best friend. I also get the nausea, and ginger is a natural anti-nauseant. You can get it in capsules at any health food/vitamin store, and can even get a ginger version of Gravol (smaller pills easier to swallow when you're in bad shape).

I usually use ibuprophen, but recently found out I have a bit of gastritis, so my doctor recommended switching to tylenol, since aparently ibuprophen can irritate your stomach. That's a recent thing, so I don't know if it's made a difference or not.

If you start getting crazy reactions like this and you know you haven't accidentally been glutened, then it's time to look at other possibilities: dairy, soy, allergic reaction?

Also, if you're new to the gluten-free diet, then you're still healing and it's probably going to take longer to get better. But yeah, a lot of us become more sensitive to gluten after we heal up. Almost 4 years in, I know I have.

Sometimes it takes a kick in the gut (ergh) to really make you diligent and avoid gluten like the plague. Hopefully you won't end up in this much pain everytime a little cc happens, but best not to take any chances.

hope you feel better

Happy Healing

Peg

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Thanks for the advice. The problem I've had is that I can't definitively figure out where the gluten came from. I guess I need to be more careful than I used to be.

You are welcome GL. I had left a "not" out of sentence above. It should have said the immune system is not going to back off in a few days. Criminy, it seems my typing is not getting better gluten-free! but then my looks haven't gotten any better gluten-free either, so what can you do? :) I edited the original post above, sorry. The immune reaction does keep going for 10 days or more for various people. So it is hard to get to feeling right if gluten is slipping in every week or two. Some people the immune system keeps going for months for that matter.

Yep, it is easy to make mistakes on this diet. I try not to add more than one new thing a week to my diet. When I do add more than one, then if I get sick, I am left scratching my head, and not for cooties! :) I do end up eating a lot of the same foods that way, but I guess I am a little odd and I don't find that bothersome. For me, not getting sick again is more important than eating a wide variety of foods. But I also eat mostly whole foods and do my own cooking at home. I seldom eat at restraunts, like a few times a year.

Slipping up during the holidays season is not unusual I don't think, as other posters said. It's easy to do. I try to eat foods that I know are safe from past experience. Plain chicken works ok for me, or even pre-cooked hams as long as they don't have a glaze added. I would probably try something like sweet potatoes or peas myself. I have never had a problem with Mission brand corn tortillas. Recently I found Rudi's gluten-free wraps locally and they seem to be just fine too. Another thing I eat is Corn Thins, they are like thinner versions of rice cakes, They only have 3 ingredients, organic non GMO corn, sunflower oil and sea salt. And I get organic versions of peanut butter so it doesn't have soy in it.

When I have been glutened, I usually take Betaine HCL when I eat, and digestive enzymes. Just to help the digestive process along a little. And some pro-biotics also. I avoid alcohol and sugary foods also, as the tend to make things worse IMHO.

I would take plain old aspirin for pain and Pepto Bismol. I wouldn't take Immodium or anything like that to stop the big D, as it is better to get the stuff out quickly IMHO. You don't want an irritant like gluten hanging around in your system. I wold also avoid dairy, if I was still eating it, because many of us react to it. At least for a few weeks.

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Oh, I feel your pain! My reactions can be pretty severe and I am SO paranoid now.

Last month I accidentally ate a kernel of corn (I have gluten reactions to all grains) and I was terribly sick for a week.

When I do is usually recuperate by eating lots of nutrient rich anti-inflammatory foods like coconut water, nettle infusion, chamomile tea, bone broth, and ginger.

Also, have you done a full elimination diet to weed out any other possible food sensitivities? Other things could be causing damage to your gut.

All the best to you!

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Thanks for all your helpful posts! I am slowly getting back to normal. I have been lactose intolerant for about 22 years, and possibly casein-sensitive. When I was in the ER the drug they gave me for stomach spasms was Valium. It turns out most formulations of Valium contain lactose as the top "inactive" ingredient. That explained why the spasms went away but a little later I started having new problems with my gut. I am also sensitive to oats--even the certified gluten-free kind. So I avoid those products. So far I have not noticed any bad effects from soy, corn, or other common co-morbid sensitivities.

I got a set of EZ-Gluten testing kits and tested a couple of the items I'd eaten prior to the latest episode. The corn tortillas that other gluten-sensitive friends had recommended had at least trace amounts of gluten. They are manufactured by a company that also makes wheat-flour tortillas, but I'd been able to tolerate them for the past 3 years without much trouble that I'd been able to notice. I'd had quite a few of them because we didn't have a lot of left-overs in the house after the holidays (the whole routine was off kilter), so that may have put me over the edge. Usually I only have one or two at a time and with lots of other food (such that the gluten exposure in a meal would be well below 10ppm).

Anyway, I had a spoonful of black-eyed peas and several pieces of cornbread (with sorghum and rice flour) for dinner and am feeling fine, so that's a good sign. I usually eat a pretty colorful and high-fiber diet, so the past week of white rice and bananas was beginning to wear on me.

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What?! Gluten testing kits? I had no idea that such a thing existed! Do you use a lot of them? Do you take them when you travel?

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I just discovered them. They are kind of expensive, and it takes about 20 minutes to get a result, but I think they'd be great for travel and reduce the anxiety of having your trip ruined by a stray crumb! You can find them at http://www.ezgluten.com/ I have run two tests to try them out and see if they work OK. They are pretty sensitive (10 ppm is their stated sensitivity). The company that makes them appears to do a lot with industry testing: http://www.elisa-tek.com/

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I thought I'd provide a follow-up on my status. I just finished an initial run of tests at the GI doctor and one value that was illuminating was an elevated lipidase level. I do not drink alcohol (I'm practically a teetotaler, with fewer than 3 alcoholic drinks a year) and I am not overweight by any measure, but indications are that when I was in the ER my lipidase levels were probably much higher--at the level common pancreatitis. We won't know because no tests were run at that time. The ultrasound came back with no evidence of disease or injury, and I expect that the CT scan I have on Monday will also produce a similarly uninformative results. We don't know, and we may never know what was causing my lipidase levels to be high, but if there's one thing I learned from the experience, it is that having a dietary issue like celiac/gluten sensitivity can lead one to attribute most GI difficulties to exposure when another disease process may be at play. While I very much doubt I have anything so serious as pancreatic cancer, my thinking is that any sudden increase in severity of symptoms with no clear source of exposure should best be raised with a GI doctor to eliminate other potential issues. Those of us with GI issues may know our bodies very well, but even we can be surprised!

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