Wonder what happens when a girl with celiac disease eats gluten? Read on!
There was actually a time that I wanted to eat gluten just to see what would happen to me. I had been gluten-free for many years, and I didn’t know how my body would react. I also thought it would make for a good blog post! Well, here it is, but not intentionally. I have been “glutened” three times in the past year. I’m not talking about a tiny bit of cross-contamination — I accidentally ate gluten. And paid for it.
First there was the muffin incident, and although there was no obvious gluten, there is no doubt in my mind that there was a significant amount of it in that muffin.
Months later came a lunch out with colleagues to an Italian restaurant. One of my colleagues ordered the “gluten-free pasta” that turned out to be not gluten-free. Oops. I found out after I had eaten one bite of her pasta. Just one bite.
And the last time was a few weeks ago, when I ate gluten at lunch. The owner of the restaurant believed something to be gluten-free, but it turned out to be an appetizer made of semolina (which is wheat). This time I ate with my colleague and nutritionist Sheila Wagner, who is gluten-intolerant, so it was interesting to note the differences in our reactions.
In all three instances I reacted almost the same way:
- Anywhere from one to four hours after ingesting the gluten, I began to feel nauseous and my stomach started hurting.
- The nausea got gradually worse until I ended up vomiting and having diarrhea.
- After that I was practically comatose. I could barely walk and had an uncontrollable need to lay down and either zone out (I caught myself staring out the window and I had no idea how long I had been doing it), or go to sleep as though I have been drinking alcohol and need to pass out for a while until I sober up.
- I fluctuated between feeling hot and clammy to feeling chilled and shivering. This combined with achy muscles made me feel as though I had the flu.
- After sleeping, I came to and felt sober again, although one of the times I remained spacy for hours after, and even a little bit the next day.
Sheila reacted in a totally different way when we ate the same meal:
- She had a headache by the time we left the restaurant and began to feel bloating that she has not felt in a decade.
- She awoke at 3:30 am that night with a “blaring” headache, stomach ache, a little nausea and an elevated heart rate (like she drank a bottle of booze).
- She couldn’t go back to sleep and the headache got much worse. Her brain felt very slow, her bowels were also slow, and she had a low back ache and left neck pain.
- She also had phlegm in her throat and sinuses.
- She continued to have soft tissue and joint pain the entire next day and her headache persisted for about 24 hours.
All this from gluten!
In a way I feel lucky that my body gets rid of the gluten right away, so my symptoms don’t persist into the next day like Sheila’s did. I have heard from some of you who feel it for days, even weeks. If you’ve been gluten-free for a while, it would be interesting to hear what happens to you if you accidentally (or on purpose!) eat gluten.
How do you react to gluten?
Joyce Wagner says
I am brand new to this site. I have had 3 separate incidents within 4-5 mo. of each other where I end up in an ambulance and visiting the E.R. yet again. They chalked it up twice to food poisoning, but it makes no sense. The first time was after eating (1-single) sausage patty and an egg. The 2nd, after a hamburger lunch with my daughter. The third just happened yesterday, after eating chicken noodle soup (without chicken). Within, I would say, about 30 mins. I started feeling cramps in my lower abdoment like I was about to have diarreah. I have learned when this hits, I am in trouble. Here is the quickened version of my scenario.
I go to the bathroom and sit to “wait it out”. The cramping remains, but nothing in the intestinal track will move just then. Next, my face and hands turn beet red, (and my eyes turn bright red blood shot look). They feel like they are on fire literally like a torch was on them. They appear puffy. Then, I begin to vomit. I do not stop vomiting until everything is gone (but normally start with dry heaves). Once the vomiting begins, the diarreah starts and both are uncontrollable, so I have learned to keep the waist basket handy. I become dry mouthed (dehydration sets in just that fast), and once I have vomited completely, the face, hands, and eyes issue resides. The eye redness may remain a day or two later. I am utterly exhausted for 2-3 days afterward. If I don’t take the ambulance, I will be in serious trouble. I have had 2 heart attacks in the past, and carry 4 stents in my heart. I worry about what this is, or what I am reacting to. It brings on some pretty severe chest pressure (they assume do to the strain of what I go through). The ambulance personell could not even give me nitro because my b.p. dropped way too low for that. (That too happens with each incident). I had to chew 4 baby aspirin with dry mouth (what a treat) to stop the pressure. Well, after this most recent trip, they said all blood work came back normal and my heart was doing “pretty good”. I need to know, where do I go to get tested in Michigan for this Celiac thing (which I never heard of until now)? Is there a site that tells you what you can and cannot eat if this is my problem? Does this even sound like it would be Celiac? Oh, I was treated for 2 years with a malaria drug (this is the drug of choice for Lupus). At the end of 2 years, they said (not in so many words), oops, made a mistake, your thyroid is actually hyper and has multiple nodules. They killed the thyroid with a radioactive capsule, but don’t know about the nodules at this point. Can someone please help me. I have a special needs daughter who cannot take care of herself and I need to be healthy for her since it is just her and I. Sorry for the book guys.
Whitney says
For Joyce and for EVERYONE who finds their way to this site. Try it, try going Gluten Free for 6 weeks and see how you feel! Don’t wait for some test or some doctor to tell you what is or is not wrong with you, just try it! I did the ER route, the so sick I was on the bathroom floor talking to “god” and such. One day, 5 years ago, I decided it was gluten, and except for a few accidental glutenings, I’ve been great. AND I tested negative for Celiacs.
You will feel better! What do you have to lose by trying it? It is quite easy to be GF these days. I suggest you don’t buy a lot of the GF products because they are expensive and not terribly nutritious, but a few are good (I take Mary’s Gone crackers with me to restaurants so that I’m not bothered by the bread coming to the table). Trader Joes sells a great GF flour that you can bake with and I use their almond meal in conjunction to give more depth.
It is easy! And so much better than feeling sick! Good luck and feel better!
Fraise says
Hey y’all, Ive had problems with edema/fluid retention GI problems (IBS, diarrhea), extremely bloated belly after eating, hives since about 2,5 years with loads of other symptoms as well. feel it has to do with an autoimmune reaction because of how extreme and widspread the symtpoms are. always got sent away really quickly by doctors. few months ago took a blood test for gluten, came out negative. since my identical twin discovered a relationship with gluten, i started to eliminate it. on for a week now. have the feeling of becoming lighter, lost 0,5 kg of water, feel less tired and fogged after eating. as a ‘test’ and because i really missed it, ate bread today and to see if i could make life easier with xmas. that came out really wrong, started swelling up immediately, look heavely pregnant now, my belly feels as if could explode, and im nauseous. but is an immediate reaction (and i really mean immediate, right after taking the first-first few bites) possible for celiac or gluten sensitity? how can i remediate the swelling? i already took some bromelaine. thanks so much in advance for ur advice
Joyce Wagner says
Whitney I want to thank you so much for your input. I have been put on Benadryl X4 daily (as needed) for “possible” anaphylaxis (sp). Possible? I don’t even see them ordering tests to see what I may have, out of nowhere, suddenly become alergic to. I have been doing my best to stay away from gluten, and anything with wheat. I don’t really know if this is helping, or the Benadryl, but they also put me on anti-cramping med for abdomen. Any time I eat anything anymore, it seems the cramps are right there to greet me. I just need to be myself as much as possible again, and this surely is not it. Thank you again for the time you took to reply. It’s very scary for my daughter to withness this happen to me.
Joyce
ERIKA SPITERI says
Dear Alison
I am writing to you after a bad night with excruciating cramps in one of my calves, accompanied by nausea, bloat and flatulence and another unmentionable gastric symptom, headache, sore throat and heartburn. I have been trying to keep off gluten, egg, soya and cow’s milk, as I am almost 100% sure that these thing make me sick. I have also been diagnosed with fibromyalgia, which returns from time to time. My energy levels fluctuate a lot and I have trouble controlling my appetite, although less so with my new diet. I mistakenly ate some mashed potato with a cow’s milk product yesterday at lunch time, after having painstakenly prepared a dairy, egg and gluten free meal for New Year’s Day lunch , but I also had corn flakes for breakfast and in the meat loaf ( at lunch). Can just a bit of corn or a tiny bit of cow’s milk cause such a bad reaction, during an elimination diet? I am very confused ( and also very fatigued and uncomfortable).
Can you offer any help?
mpv61 says
Many corn flakes have gluten in them; that could be part of the problem. Do you know the brand of corn flakes?
Whitney says
Just bought myself a “green drink.” I looked at the label carefully in the store, did not say it contained any products I know to avoid. Before I opened it, I went through the ingredients very carefully and there was “sprouted barley malt.” Did my homework and sure enough, that contains gluten. Must be so careful! I almost got glutened in the name of getting healthier!
Buffy says
Hi. I’ve been eating gluten free for 3 months (since Dec 2013) and go out of my way to eat gluten free. I still occasionally get a bout of diarrhea, bloating, burping, headache, ringing in ears (particularly right). I lay on sofa and literally feel this must be it, this time I AM dying! Only get up (multiple times) to use bathroom. Sip tepid water and hope I don’t vomit. I do get nauseated frequently (as I type this, no vomiting yet), and burp a LOT even without diarrhea or ingesting any gluten. I’m vegetarian 20 years, only skim milk, lowfat cheese and Activia, NEVER eat out, no fast food, no grease, no seasoned or spicey foods. I don’t think it’s good to rely on antacids, as they can destroy flora-good bacteria in the intestines. I had intestinal surgery 8 years ago (and bowel resection). Haven’t found a good doctor since before then. Nowadays they just roll eyes at patients and accuse you of lying without even so much as a blood test. If anyone knows of a TRULY GOOD GI doctor in Pittsburgh, Pa area, please let me know! Thanks for listening and take care.
mpv61 says
I’ve just recovered from my 2nd ever glutening; I was diagnosed with celiac in July of 2010. The first episode I commented on above (May 31, 2011).
This time, I’m pretty sure I also got some cross-contamination at a Starbucks. I ordered a caffe mocha at about 3:45 PM. At some point that evening, my stomach started hurting.
(Gross details ahead) At 9:45 PM, I was on the toilet with diarrhea and violent vomiting at the same time — charming! I was in the bathroom about an hour and a half; the vomiting came in 3 waves, about 20 minutes apart, with 4 or 5 heaves each wave. It was very dehydrating! At one point I was able to run to the kitchen to bring back some water to sip.
The next day, I pretty much laid around, sleeping and sipping water. I had a headache, mild foggy brain, and nausea, and I felt kind of weak. I eventually ate a few pieces of GF toast (Udi’s!) w/a bit of butter which sat okay with me. I wasn’t particularly hungry.
That went on for 3 days, getting a bit better each day. At some point, sinus pressure came in and some Sudafed helped that. Starting on the 2nd day I added decaf tea to the menu and a bit of Tinkyada rice pasta. Today was the 4th day; I still didn’t have a lot of strength, but I didn’t need any ibuprofen and tonight I finally had a real meal. I still haven’t felt up to coffee.
So…diarrhea and violent vomiting w/in 5 hours, followed by 3 – 4 days of being off. Now I know.
I feel like I need to be more careful about how/what I order at Starbucks, and I will be, but I’ve been to SB probably once or twice a week since going GF, and only had a problem twice. But still, I’m going to change my ordering ways.
If I wasn’t home when the symptoms first hit…that could be really messy and embarrassing. At home, I’m just glad I have a trash within reach of the toilet!
Kelly says
I have been gluten free for a month. I ate a milky way candy bar I didn’t feel bad until the following day. Horrible stomach pain that gradually got worse very tired & a headache.
Lisa says
I went 23 or so years of my life without having a gluten allergy/intolerance (or so I think). I have had allergies my whole life, so it is very possible that it could have been better controlled had I tried cutting gluten out as a child, however it was definitely not as “big” of an issue to the public as it is now. I have also suffered from depression and anxiety since I was about 18 yrs old. I have no doubt in my mind that can be affected by gluten as well.
Now, for my official discovery of my gluten sensitivity…
One day I had a “rash” on my feet and ankles. Went to the doctor who gave me some cream. Nothing happened. It would come and go. I Finally went to a dermatologist who gave me an extremely strong antihistamine…just made me TIRED! Finally I went to my primary care physician who suggested that I have my dermatologist do a biopsy are of the “rash”. When my biopsy came back it was found the I have Dermatitis Herpetiformus.
I had NO idea what this meant so I had to do some research. So what i thought was a “rash” was in fact little blisters forming on my feet and ankles because my body was fighting itself and busting blood vessels under the skin. They itched, they hurt, and they SCAR. so no cream could have even helped. the only “treatment” is a steroid called Dapsone that is also given to people with leprosy…interesting!
There are many possible causes, but none are for sure at this time. But i read that people with celiac disease often suffer from this. so, i looked up what celiac disease was and found out this was an intolerance to gluten.
so i did my own little test…. Sure enough, when i cut the gluten out of my diet, my “rash” disappeared.
It has been about 3 years since my discovery. There are times I experience times of weakness and will have something high in gluten, and about 4-5 days later the “rash” comes back….
Not the usual gluten allergy/intolerance symptom or sign, but that was how it went for me!!!!
Deborah Brown says
I read your reaction to gluten and thought , “She must have been listening in when I talk about what happens to me”. I,too, describe it as being on a bad drunk! I have been gluten free for over 24 years and thankful I am alive! Better to k ow what you are dealing with than to die from it!
Brendt says
My main problem has been severe dermatitis on my feet. 10 years of getting worse to the point of trouble walking before I figured out my gluten issues. If I’ve eaten dairy recently, gluten contamination hits me in a few hours with diahrea, and in a few days my feet break out. After contamination once, I splurged and had a real pizza. I paid for that with a 4 day hangover in addition to the above problems.
Undertheweather says
I end up sitting in the bathroom for hours,groaning in agony and crying my eyes out because I REALLY want to go to sleep because it’s midnight-three am. I end up inducing vomit and having serious diarrhea. I had managed to avoid it for a few months until tonight.
Eddie says
I’ve been gluten free now for 16 months. I actually self diagnosed with a confirmation from my doctor. I was in the ER several times over a 6 month period for horrible stomach pains, slow digestion, bloating, constipation, diarrhea, and my most common symptom ELEVATED HEART RATE. My first episode I woke up at 2a.m. with a pulse of 149bpm and shivering from nonstop chills. I thought I was having a heart attack. This happened 5 times over six months with the general time feeling horrible and sluggish with painful joints. The 5 episode came with the bilateral rash “Dermatitis Herpetiformis” that day for lunch I had a turkey on whole wheat. At that moment the light bulb shown over my heard. Every time I went to the ER I had eaten something made of whole wheat flour EACH time. Pizza, spaghetti, turkey on whole wheat, fried shrimp, Cheeseburgers. Needless to say after 16 months, I’m doing better. I do however get very sick with even the slightest amount of contamination. Things I’ve found labeled gluten free that I have learned to avoid is Chex Cereals, they are labeled gluten free, but I have a reaction every time. Gluten free bread also causes a glutened reaction. I pretty much have learned to eat only from the meat counter and from the produce section with an occassional restaurant visit that has a Gluten Free menu.
Holly says
I was just diagnosed with Crohnes Desease but i am having issues…My upper stomach swells so bad I feel like there is a tumor or something in there. I have had a colonoscopy, an abdominal and pelvic ct scan with contrast and IV, and abdominal xray and thursday i am going through an upper GI series. I have constipation NOT diarrea when i do have a bowel movement it does not seem like i empty my bowels and I also have a fistula. I am just lost 🙁 I feel like something is really wrong and the drs are not finding it. Im never really hungry and my like bottom of my esophogus aches sometimes…anyone have any of these symptoms. In the morning my upper stomach doesnot start off too swollen but as the day goes on it gets worse. Any help/advice would be much appreciated
randy k says
I am so grateful I read this blog and this is my first post to a blog so I will try to be brief and useful.
I have over the years I have been troubled with a nervous stomach that usually was diagnosed at the Dr. Office as IBS. Never thought too much about diet as I was trying to make a living, etc. so just felt like abdomen pain was part of life.
But in the last few years, symptoms have gotten worse. Specifically, for no specific reason (at least that is what I thought at the time) I began having more intense cramping and pain in my stomach and left side of abdomen area. This was just the beginning of what would last 4-7 days.
My last episode was about 5 days ago so and I think the culprit is French fries (deep fried). I believe this is the culprit but not sure if uncooked onions and some gluten pizza dough is also a problem for me.
The episodes some have described in this blog have really made me feel like someone else understands my situation so let me share my latest episode. As I mentioned, about 5 days ago, I was with some old friends and go distracted that my grilled tuna came with French fries. My first reaction was not to eat them but the low to average amount on the plate caused me to take a chance. On the way home a few hours later I had an uneasy feeling in my belly area. A few hours after that and I was yawning incessantly and tired to the point I needed to lie down. My eyes were achy and nausea began to set in….this was about midnight. It was a restless night…tossing around with a kind of stomach ache that would not go away. The next morning I was feeling about the same but thought I would try something bland to eat, specifically, grits (yes, I am from the South). Any reader of this has a right to ask: “why would you eat anything that soon� I don’t know the answer but within about 4 hours I was inducing vomiting to hope that would make me feel better. The rest of the day was spent in bed with a stomach ache and nothing, not even sips of Gatorade would stay on my stomach without me throwing up. It’s been about 5 days now and I have gradually introduced small amounts of food and am feeling better. Hopefully in a few more days I will be back to normal.
Now, let me back up a second to a few important issues. In a few previous occurrences, I was constipated at the time the symptom began. If that happens, my pain was at least double and maybe triple. This time, I had been eating very healthy with foods that keep me regular before the event so luckily constipation is not a factor. In addition headache and diarrhea are not usual symptoms for me.
I could write more about this but my goal was to simply let others know that I fully understand what they are saying even though others around may not.
Best of luck.
Paulette says
My symptoms are very strange. If I eat lots of gluten that night I have stomach pain, diarrhea and while having diarrhea I itch, hives, throat starts to swell and I sneeze. Have to take Benadryl right away. Symptoms would start to go away but it was very scary and I did not know what I was allergic too. So I went to the doctor and he ran blood work and I listed everything I ate and thought I was allergic too. Found out I was allergic to wheat. If I find out I ate something with wheat I take the Benadryl right away it helps. So far only had one episode this year and now eat no bread, only GF pasta, breads, pizza and have started to research what I can eat. Thank god for your site which is very helpful. Paulette
Natalie says
As I read your story about, the one with your lady friend and her symptoms ring true to me right now, yesterday morning I hate a bacon muffin, I didn’t eat again until 5pm, I had some sea food, I felt fine, it was later in the early hours I woke feeling bloated, I was in pain under my rib cage and my lower back was aching, I no it’s the muffin, if I eat bread I’m the same and with potatoes, beans, pasta I feel terrible, I woke last night at 4:45am and it’s now 2:40 in the afternoon my stomach is still giving me cramps and my back is still aching, thank god under my ribs pain has stopped. I had noticed a few month back when I ate bread how bad I felt and have gradually realised other foods what trigger this, I haven’t seen my doctor but the symptoms are like some of the above, I ised to eat all these foods and not have a problem? Could I have an intolerance to Gluten??
Natalie says
Apologies for my spelling and up loading my comment twice, there is no edit button. Any advice will be greatly received, the more I think about it yesterday afternoon I was sweating and hot, I didn’t realise then, but people on here have mentioned there heart rate going up as mine did also, I don’t like this feeling it’s awful. My nephew has had to pick my child up from school as I’m laid on the sofa feeling really crappy and and still suffering cramps, I haven’t eaten anything yet and don’t feel I can at the moment, thank you for sharing this, it’s really helped me to notice I may have a problem with gluten.
mpv61 says
Natalie, potatoes and beans don’t have gluten in them, although depending on how they’re served (like do they have soy sauce on them, which has wheat), they could. So when you say potatoes and beans bother you, how are those made?
mpv61 says
Natalie, potatoes and beans don’t have gluten in them, although depending on how they’re served (like do they have soy sauce on them, which has wheat), they could. So when you say potatoes and beans bother you, how are those made?
Also, what else are you eating in that meal with the potatoes or the beans? Because that item could be the thing with gluten, and the potatoes and beans could be safe items for you.
Have you been tested for celiac disease and have you been tested for an allergy to wheat? If not, these are good first steps for anyone that suspects a problem with gluten.
Jessie says
I was only diagnosed with celiac disease about 4 weeks ago. I had no idea what gluten exposure symptoms could be like. I was experiencing severe abdominal pain and only occassional nausea. After going gluten free, the pain and nausea stopped, but for the past 3 or 4 days I have felt like I had the flu. Fevered, nauseous, bad aches, etc. Turns out it’s all from gluten exposure. I’m very careful about reading labels so I am not sure what caused it though.
Chris says
Be aware of cross contamination when eating out! Pasta is a dangerous one, some chefs use the same water which is full of gluten. Take papaya digestive enzymes to help when eating any food you have not prepared. You could also be reacting to a grain that is gluten free but your body is still sensitive to like oats or flax. Find brands you trust like Udi’s and stick with them. Read every label every time, manufacturers change ingredients all the time for cheaper alternatives, wheat starch may be added when it was not in the past. If you want to feel good there is no skipping steps unfortunately.
Jennifer jones says
As soon as I eat pasta I become sweaty and violently vomiting until the pasta is completely out of my body , sever cramps in belly , I also had gasteric bypass almost 3yrs ago and it has gotten from not a problem to digest to now severe problems pain .
Any suggestions besides not eat it ,
It started with spaghetti ,then Mac n cheese and now any type . And I take small bites I have to because of my surgery
sj says
I have had diagnosed CD for 18 years. At the present time my reactions to any cross contamination are extremely violent. It starts with vomiting, after 30 minutes uncontrollable vomiting which changes to uncontrollable diarrhea, headache, every h=joint in my body hurts, severe fatigue, These symptoms last for 4-6 hours. Then after that comes dry heaves for about another 2 hours. By that time I feel as though I have been beat up. The next day is spent in bed all day to recover. No amount of lomotil will help. The worst I eer became was when I had taken 6 lomotil. With the dry heaves my throat swells and then is when I get scared and cautious. The only thing that helps is literally pushing down water Yes, as I am throwing up I am also drinking more. It is imperative when you start severe vomiting and diarrhea to immediately get liquid back into your body immediately. If you cannot get water down then sit in the tub or shower while running water onto your body to replenish the water through your skin that you are losing in the process of vomiting and diarrhea. This will help rehydrate your body. The longer a diagnosed person goes without gluten, the worse your reaction will become when exposed. You desperately need an advocate with you in case of a hospital stay but I guarantee you there are absolutely no hospitals who will know what to do to help you.Watch for the symptoms and be prepared when they start happening. Keep water available at all times.
Bryan says
I have suffered from countless sinus infections since 8th grade (going into my senior year of college). Figured out finally in college that gluten was the problem — Whenever I ingest a large amount of gluten, after about two days I will wake up with a congested nose, phlegm constantly in my throat, fever, sore throat, fatigue and other flu like symptoms. This usually persists for 3-5 days and sometimes develops into a sinus infection (brown & yellow mucus)and I will remain heavily congested for up to 2-3 weeks. None of these flu-like symptoms are contagious (to my knowledge). I often will notice if I ate something with hidden gluten I will get numbness in my mouth, scratchy throat, watery eyes, and congestion within minutes. Finally if I drink alcohol containing gluten, my face flushes and I become stuffy within about 20 minutes. I have not been tested for celiac but do know I do have at least some kind of intolerance. I also notice I seem to have spurts of diarrhea around these gluten reactions.
Mary says
I searched the comments for the word “Leg” because that’s what it is all about for me. I don’t get diarrhea or stomach pain. An hour after eating a mini-tart with a wheat shell I got horrible horrible leg pain from the knees to the ankles. Bones hurt terribly, muscles hurt, nerves hurt and this went on for 48 hrs, getting a little better with every passing hour, now ok after 48 hrs gluten free.
I had recently passed on all wheat and followed a wheat-free diet for months. So this was my first wheat-cheat in a long time and the reaction I consider severe enough not to wish to repeat.
On another occasion, on which I had wheat and dairy, which I am also allergic to…this was a whole year ago, I had so much leg pain that I considered having a friend take me to the ER. It was totally consuming. I stuck that one out, writhing in pain, and it was gone in 48 hrs.
But I have no proof yet, only strong suspicions that it is wheat. I guess I am going to have to try wheat one more time to be absolutely sure it was the wheat and I am not looking forward to doing that. I will give my body a rest first. My sense is that it really threw my body for a loop.
I can’t have the celiac test, my dr. says, as I have spent too much time being wheat-free and would get a negative result. Wish I had had the test before I went wheat-free.
I now follow a gluten and dairy free diet but still eat white rice which doesn’t seem to bother me. I hope to give the rice up soon and go totally grain free anyway, for better health. Otherwise, I eat Paleo and whole foods. I have been treated for leaky gut and severe body inflammation, blood-tested for food allergies. I read a lot about all this but only found a few posts here that seemed to have the severe leg pain like me, so I am still not sure I have found the answer in gluten. One more gluten trial will tell….I’m not looking forward to it.
katherine says
okay so I have not been diagnosed with celiac or any other gluten related problems professionally. But I diagnosed myself (yes im one of those people lol) and my reaction has gotten terrible ever since I stopped eating it. Its crazy I try going day to day without it but about once a week I eat it. mostly flatbreads (things that don’t rise don’t give me bad reactions) I started out with chest pain after ingesting maybe an hour later for like 30 min. today about 1.5 years later I had a sandwich from publix, really good might I say. however within 15 min I was in immense pain that had me almost collapsed on the floor just absolutely unbearable, even thought of asking to be driven to the doctors or the er. I have never felt such pain. I had no clue a reaction could get worse over time. has anyone else experience a change in their reactions as well? (by the way its about 1.5 hours later and im still in trembling pain and cant breathe deep breaths)
mpv61 says
katherine,
If you read through all the comments here (which I do from time to time — they’re pretty interesting), you’ll see that it’s typical, at least for people with celiac disease, to have an increasingly bad reaction to gluten the more time goes on that you’ve been GF.
Your comment made me think of the old joke, “Doctor, it hurts when I do *this*.” “Well, don’t *do* that, then.”
My recommendations (and I know you didn’t ask for them) are as follows:
1) Get tested for celiac. If you have it and are continuing to eat gluten, you’re risking other problems like lupus, rheumatoid arthritis, Meniere’s Disease, cancer, thyroid issues, the list goes on an on. In addition, celiac affects things like iron and Vitamin D absorption, so if you have it, that sort of thing needs to be monitored.
2) For your own sake, drop every bit of gluten from your diet. Be vigilant. Don’t cheat. You are literally hurting yourself. I don’t care how good that sandwich from Publix is — it’s not worth what you’re doing to your body, whether it’s celiac or non-celiac sensitivity. Not worth it.
3)It took me 2.5 years of being GF to finally get my antibody level to almost normal, so don’t think, “Oh, I can’t get tested unless I go “back on” gluten. You’re not off gluten.
4) Good luck! Being GF is a pain, but the alternative is even more of a pain.
Lisa says
Hi there,
Does anyone experiences night sweats that smell very ‘sweet’? I wake up saturated in sweat, so much the mattress is soaking.
(Only happens when I’ve eaten gluten).
Lancelot Plunkett says
Hi
I have been getting terrible muscles cramps joint pain muscle soreness all over my body and generally feeling low and tiered. I previously was a professional football player (soccer) and very very active .. I now feel the opposite to how I once as..
something called fyrbomyaligia was suggested by a doctor i wonder if anyone knows if this is related to gluten in anyway
thanks for any help
Lance
Sue says
I was having vaginal burning and bladder pressure so I thought I had a yeast infection but lab tests said no. I also had a rash on my face that resembled rosacea. I thought I would stop eating anything with yeast to see if it had any effect. My symptoms lessened and then disappeared. But when I added the wheat back in, I would have immediate vaginal and bladder pain. Does this sound like celiac? I haven’t been tested–my doctor doesn’t think I am, mainly because I don’t have the weight problems (i.e. losing weight).
Troy says
Hi Lance & Sue,
Wheat is the number 1 cause of inflammation, which is the number 1 cause of health issues. Wheat has been added to everything, since makes people typically eat more and get addicted to the product. Most people have been diagnosed with everything under the sun and never told to stay away from wheat. I was first diagnosed with fibromyalgia and later with several other things – before long I was a walking pharmacy company.
Years past to find that wheat causes soooooooo many issues that the last thing it does is attack your brain. my new doctor said that the words gluten free in the grocery store is to cover future lawsuits when people finally figure out how much damage wheat has done. At this point wheat is still spun as healthy, but so are the unhealthy cows shot up with drugs.
We are told to eat more wheat, drink more milk, and eat more beef – items we should be staying away from. Now reports are coming out saying those that were not diagnosed gluten free for years should stay away from all white rice. Brown rice is also not a good thing, since it has arsenic. In small quantities it would be fine, but all gluten free items have brown rice so you are taking in a large amount and it will eventually show up in your test results (that is how i found out about this).
Try to stay as close to the original item as possible and do not eat process foods. If just starting out gluten free – the food you buy at stores and most places taste awful. I recommend spending some time on the internet searching for recipes, which some recipes out there taste just like the food you are use to eating. Trust me – I have been gluten free for several years now and no-one that eats at my house knows they are eating gluten free breads, pastas, etc.
Once you go of gluten – you will see a HUGE difference. You have to check everything – your spices could be hiding gluten as well. The words all natural also could mean wheat – since it is considered natural. So please take the time to look for the words gluten free or search the web to see if the product is gluten free. Once you go off gluten you will become even more sensitive to the product and feel a million times worse.
Also – if anyone touches a gluten item and touches your food – it now has gluten. So always make sure people to change out their gloves when eating out and that they don’t use the same utensils they use for their other products. Toss any food in your house that could have been contaminated.
To feeling young and healthy again.
Petra Haynes says
I have been gf for 3 years. During that time I have bee accidentally exposed a few times resulting in various symptoms. A couple of nights ago, after having a potluck dinner at a friend’s house, that was supposedly gf, I developed severe symptoms within 2-3 hours. Severe bloating and gas pain, subsequent violent chills for 2-3 hours, subsequent fever, faintness and weakness, feeling exhausted. I have experienced these symptoms before after accidental exposure, and did vomit on that occasion, but did not react as violently as this. Very scary! I spent the next day in bed because I could barely function, and even 2 days later still have abdominal and low back pain, and very little appetite. Has anyone else experienced this sequence of symptoms after gf exposure?
Marianne says
Hi. After expressing concerns to my doctor about my body generating a need to sit on the toilet up to 8x a day, he ordered a blood test for GI. Result: 95% certainty. Was ordered onto a GF diet until a referral was processed for an endoscopy to then take up the Gluten Challenge. In just the first 4 days of being GF I felt better. Over those 4 mths I lost 8.5 kilos, had energy, felt happier and generally ‘glowing’. Going back on gluten I have hated every minute of it. Joint pain, headaches, symptoms of carpal tunnel are back, my muscles are all tense, the headrushes and brain fogs I get within a minute of eating anything with gluten. Symptoms are manageable but frustrating with starting the trips to the loo, sleepless nights, irritability, etc. Tonight my hubby took me out to dinner as a last ‘eat out’ without having to check for GF. I am having an endoscopy tomorrow to see if I am Celiac. I have never had such a bad reaction as what I did tonight… Severe heartburn, nausea, feeling like blacking out and sweating (I never sweat unless working outside on a very hot day). Can’t wait to go GF again because Celiac or not, I have certainly seen and felt the benefits of GF. See how tomorrow goes. Here’s to a brighter and healthier me :0)
Melissa says
My 10-year old son is gluten-free and has been now for almost 4 years. After 6 months of being gluten-free, we did not think there were benefits to him being gf so added one slice of bread each day back into his diet for 1/2 a sandwich at lunch for 7 weeks. Then, we knew he needed to be gf for sure. He started exhibiting symptoms of autism again that we had not seen in awhile and just did not realize it was the restriction of gluten that had made the difference. After being gf again for about 2 months, all of his symptoms went away. His symptoms were: being very lethargic, needing 4 hour naps plus sleeping 10 hours in the evening, hypersensitivity to touch, echolalia (repeating everything he heard and saying nothing spontaneously), making up his own words (the only spontaneous words used), confusion, things he knew before he did not know at that time, and watery to loose stool. We still experience some of these symptoms from time-to-time, but if I were to pay a little closer attention, I might find these to correlate with accidental infractions on the food restrictions. He is also casein and soy free. There are only 2 restaurants where we eat out at and that is to Chick-fil-a and Five Guys Burgers and Fries. I was not aware of how easily food contamination was in touching a product with gluten and then the non-gluten product. At home, I have always made my son’s food first, and then I prepare mine and my husband’s food. I have often wondered about the chances of him getting gluten with us using the same toaster, and after reading some of the posts, I am sure he is getting gluten that way. Need to make a change with the toaster for him. Thanks for your blog, and the many posts!
Marianne says
Endoscopy complete as of yesterday. Specialist is certain by what he saw I have Celiac disease. Waiting on test results but he has asked for a full consultation regarding my diagnosis. Here begins a new life change for not only me but my family. Have been told that Celiac can be hereditary so once my tests are finalised, my immediate family are then eligible for testing. See how we go. Thanks so much for this page. Has been a real encouragement.
mpv61 says
Marianne, welcome to your new life and feeling better!
Melissa, do you have a British Beer Company near you? We’ve had good luck eating there, and never a problem. Pizzaria Uno’s has worked well for us, also. And boy, do I love going to Five Guys so I can actually get fries! At Panera Bread, I get the Fuji apple chicken salad and haven’t had a problem. At all of these places, though, you still want to be vigilant and check and double-check!
Sandy Densmore says
I was diagnosed about 9 years ago with Celiac and honestly I have never been gluten free until recently. I always thought my headaches and nausia were just because I did not eat healthy. I had decided recently to eat better and was gluten free about one month and felt great,(thats what made me notice my sysmptoms, I had never felt great before), then Thanks giving came around and I ate Gluten. I got a MASSIVE HEADACHE!I also got sick to my stomach, and could not focus or sleep for about 24 hours. I had alcohol and it made it 10 times worse, even after only one drink. Thank God for this website! I had had cat scans, and I literally wanted to die. The pain was awful in my head and did not know what was the cause. Doctors here do not know what Celiac is so every time I would go they would guess and give me a pill. Thanks for your posts! Gluten free this day forward!
Randy says
I started reading this website about 6 months ago after my gastro problems became worse and could not figure out what to do different. As a 65 year old male, I had tried many things over the years. After refusing to give up, I decided gluten free would be my next course of action. After 3 days I felt better and after 3 weeks without any abdominal pain, I feel like I have finally discovered what has bothered me for many years. Thanks to all of you and I hope others don’t give up until they find a solution too!
Chris says
I hate the fact that in Canada food producers get to flat out lie about “Gluten Free” foods. They all have gluten in them. They have a point system. It should be 0 tolerance not, oh, you only use this much of it in processing your food, that’s ok, we’ll still label it Gluten Free.
Troy says
@Chris – we have the same issue here in the US. Also a food can claim to be gluten free if they believe they removed all the gluten from the product – such as juices, oils, wines, and liquor. You don’t know how many times I have gotten sick on gluten free foods to find out it either has traces of gluten or the gluten was removed from the product. As I explained to one food production company – I redesigned my whole kitchen because it had once had gluten in it. I couldn’t touch the counters or use a wooden or plastic cooking utensil without getting sick.
The other thing that gets me is when people think it is a fad diet and they don’t need to take it serious – ohh you are on that diet. NOOOOO!!!! I get very sick and will be bed bound for 3 to 4 weeks – so take the extra precautions of making sure my food is a 100% gluten free. I understand most people don’t understand why it works as a diet and why the weight just melts off – you shouldn’t be eating wheat in the first place and your body is excited that you finally are getting rid of the toxin.
Now if only gluten free foods were not loaded with white and brown rice – we will be heading into better health for those with celiacs. Also – the other flours they use are very high in sugars.
Joan Lovely says
I’ve been GF for about 3 yrs but my job has me eating out a lot which is very challenging and I know when I get glutened as my primary sympton is one or more sores will open up on my face within 2-24 hours of exposure. They are a bit itchy but not intense. I have some bloating and smelly gas but no diarrhea. I have complete brain fog and feel drugged and really struggle to concentrate. My skin becomes very dry and I get dark circles under my eyes. Tests for celiac came back negative including a skin biopsy for dermatitis herpetiformas. My PCP did a RAST test for wheat, barley, rye, corn, rice & gluten and all were high EXCEPT rice and gluten but I haven’t pursued a potential allergy. My sister is positive for Celiac and I have Hashimotos disease which is autoimmune so I’m treating myself as having CD. Does anyone else get the open sores symptom? Mine seems to be only on my face. If I get a big gluten exposure my whole face will erupt. I’m also wondering what these accidental exposures are doing to my intestinal tract and my ability to absorb vital nutrients. I’m on a certified GF chewable multi vitamin and take D3 and calcium for osteopenia. As I mentioned eating out is so challenging and even when I explain CD to servers I don’t feel confident that they get it or they treat it as a fad.
kath says
Hello to all,just to ask do any of you suffer with a dry cough after being glutened. Many thanks
mpv61 says
Joan Lovely, I don’t go to any restaurants unless I’ve checked them as well as possible online. glutenfreeregistry.com is one place you might find reviews of a particular restaurant. You can also put in a town & state to see what restaurants have been reviewed from the town.
Another thing I do is just google the restaurant name and gluten or gluten free. That usually brings results. And finally, I look for a restaurant’s website and look for menus. Many of them have their menus online and if there’s a gluten-free menu listed, or items specified as GF on the main menu, that’s a good sign, but of course I still google like crazy to see if they really know what they’re doing.
And STILL, of course, you have to be careful at the restaurants. I do have celiac disease, but I don’t really try to explain that. Instead, I say, “My daughter and I can’t eat gluten; we’ll get severely ill.” Then I generally will ask whether the kitchen understands about cross-contamination. If I’m ordering a GF pasta, I’ll ask if the pasta is cooked in separate water, with separate utensils, and a separate colander. If I’m ordering a GF pizza, I’ll ask about the pan & cutter used, etc. Often I’ll use words like, “How do they make sure that my GF meal STAYS GF?”
I’ve been GF 4.5 years now and have only gotten glutened twice, both times at Starbucks. There have been times at restaurants that I’ve almost been glutened, have noticed an issue (like…”Hey, there are croutons on that salad. And don’t just take them off and give it back to me; you need to remake it entirely), so vigilance is KEY!!
However, I’m a stay at home mom, we don’t eat out that often, and restaurants are carefully chosen. It’s much more difficult in a work environment when other people may be choosing the restaurant. My suggestion is to do all the homework for the area you’re in (or going to be traveling in) and talk with whoever picks restaurants. It’s a pain for all involved, but do they want you out sick and/or totally useless at work? Nope.
Lisa says
Hi Joan,
Yes, my family gets these breakouts too. They seem to be more cysts underneath the skin. Some become so big and lumpy that they look like a pea under the skin.
Joan Lovely says
Thank you mpv61 and Lisa for your valuable input. I’m going to be even more viligent when eating out. I always look for restaurants that have GF menus but now I’ll ask about dedicated GF prep and cook areas. I had a great GF meal with my family last summer at a restaurant that has a GF prep and cook area in its kitchen but I was dismayed when the server placed a large basket of complimentary rolls on the table and I had to pay an extra $5 for my small GF roll. It just didn’t seem fair.
And to Alison St. Sure, thank you for starting this website and blog. This is a terrific resource and is helping me navigate this crazy affliction.
Jill says
I was diagnosed celiac almost 2 years ago. Would only get bloated and mild D. I was diagnosed by chance due to thyroid problems and severe anemia. But I never really had severe digestive issues although did have some. I also get severe GERD which was noticed during the endoscopy (I always had a cough but never thought I had GERD).
After about 18 months on strictly GF diet I stupidly decided to see what would happen if I ate2 slices of regular pizza. After 2 hours I was vomiting violently(8-10 times) and then had very watery D. After that I just felt bloated and tired for a few days.
If I get cross contamination I get bloated but that is it.
No fun for any of us is it?!
Ross says
I am constantly testing my intolerance but recently the payback has become intolerable. For example, I had Easter dinner which happened to include 2 spanokapita that I thought would not have enough gluten to be a problem.
Was I wrong!
I became tired and bloated and generally rundown. The next morning I had a cough caused by a horrible nasal drip and I felt headachey and even more run down. I have since noticed a trend where I get a sinus infection or nasal drip after any gluten and it causes discomfort for 4 days at least. I also get constipated top the point of feeling toxic.