• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-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.
0

13 posts in this topic

Recommended Posts

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.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


GFinDC    609

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

Share this post


Link to post
Share on other sites
kristenloeh    14

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
Takala    413

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.

Share this post


Link to post
Share on other sites
Ads by Google:


Pegleg84    50

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

Share this post


Link to post
Share on other sites
GFinDC    609

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.

Share this post


Link to post
Share on other sites


Ads by Google:


dreacakes    2

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!

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites


Ads by Google:


LFitts    8

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?

Share this post


Link to post
Share on other sites

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/

Share this post


Link to post
Share on other sites

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!

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
      107,912
    • Total Posts
      938,649
  • Member Statistics

    • Total Members
      65,837
    • Most Online
      3,093

    Newest Member
    Heba al-wawi
    Joined
  • Popular Now

  • Topics

  • Posts

    • Vitamin deficiencies of vitamins D, C, and B12 and Calcium deficiency can all cause night sweats.  (Perhaps the methyl form of B12 is needed for those with that MthFr gene.)  Also, consistently high blood sugar levels can cause night sweats.  As a  type two diabetic, I find if my blood sugar levels are too high or not below 120  two hours after eating, i am prone to night sweats.  Hypoglycemia (low blood sugar) can also cause them, usually accompanied by the shakes and teeth chattering for me.    Cycling Lady is right about night sweats being caused by other illnesses, too, like heart valve problems or tuberculosis, so be sure to check with your doctor.   Hope this helps. P.S. Saw your picture.  You're looking good!  So happy for you!
    • It's unfair to make such a general statement about ER's and hospitals.  Unfortunately, I've been to the ER several times and hospitalized three times in the past few years.  The staff took me seriously when I told them I had celiac.  Popsicles and drinks were checked for gluten, and a good laugh took place when a nurse came in to remove the cheesecake that was brought to me when the staff found out it was our anniversary. Dietary services were called and Lucy's gluten free cookies were given to me instead. Once admitted to the hospital, a dietician was sent to my room to discuss meals and she checked back with me a couple of times.  The only mistake made was the dairy free protein shakes that were delivered daily and left untouched.  When dietary called my room to ask why I wasn't drinking them, my husband had to inform them to read the label as it was clearly labeled containing milk products.  
    • Here is more information about testing family members. https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/  
    • Hello, I have been dealing with a mysterious rash for the past ten years that I am slowly beginning to think is DH.  It comes and goes, is itchy as all get out and shows up in all the areas that DH appears (elbows, back, torso, knees and base of neck).  It comes and goes over the years which has thrown me a little, but from what I can tell it can happen with DH? Anyways I went to an allergist, he was a jerk and told me it was not an allergy and to get a biopsy (which was done ten years ago when it first happened, but okay).  Me being at my wits end I called up a local dermatologist and got an appt for a biopsy.  I went in armed and ready with the info I have read here about the correct biopsy etc.  Well of course the dermatologist wouldn't give me the time of day Would not listen to the past history of the rash or look at photos, was in and out within five minutes and insisted on a scratch biopsy instead of a punch biopsy.  She simply said she would be highly surprised if it was DH.  I try to respect doctors so I pushed but I did not push hard enough.  She did the scratch biopsy against my recommendations.  So that brings us to today when I received a message that the biopsy showed an allergy and that they could either give me an order of prednisone or refer me to an allergist.  Now if you remember my local allergist sent me away and said it wasn't an allergy.  I am so done and I refuse to just keep medicating myself, I need to find the root cause.   So I have a physical tomorrow night with my regular doctor and I am tempted to just insist on a punch biopsy next to the rash for a proper biopsy.  Couple questions for you guys though.  If a scratch biopsy came back as an allergy could that possibly lead to gluten allergy (I know it doesn't prove that, but could it mean it could be gluten?).  Should I keep pushing for a punch biopsy? I am planning to go gluten free after this appointment anyways but I keep eating it to try and get a proper diagnosis.  I feel I should get a proper diagnosis, one to keep me on track, one to make sure that is what it is and also I did try gluten free for 30 days before and it didn't seem to help the rash.  But from what I have read that could have been to short of a time.  I feel I need a proper diagnosis to help me stay with it and keep on the right path.   Lastly, the rash definitely went through stages and is at an end stage, still itches like crazy but isn't as bad looking as when it started.  Does it matter when you take the biopsy as long as there is a rash it will potentially show?  I hope all this makes sense.  I am tired of being told I am crazy from doctors.  If they could find the solution I wouldn't be looking myself.  I would be very happy to be proved wrong but so far that has not happened and I just want an answer! So tired of being itchy!! Thank you very much for your help and listening!!!
    • I'm sorry I don't have much advice for you but I can relate in some ways. I've took generic Zoloft for about 10 years. When I was diagnosed celiac I worried about and researched my medications and am confident that they are safe for me. I have spent many years fighting depression and anxiety and have tried different meds but finally accepted I need the Zoloft and Xanax probably for life. I will say that most of our serotonin is in our stomachs and any time I switched meds or had to withdrawal my stomach issues were the worst. So please be careful with switching or stopping ( never cold turkey) any psychiatric medication. Also you could be sensitive to other grains. Gluten free bread does not like me. Also so far I have not found any one in the medical field that takes celiac seriously. I have been laughed at even and most don't have a clue what problems gluten does to us mentally and physically.
  • Upcoming Events