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?
Michelle says
This thread was very helpful. I have been eating gluten and dairy free for a short while not because I’ve been diagnosed but because I always felt awful and I wanted to clean up my diet. Last night my boyfriend wanted pizza so I said sure, I’ll have a slice and live a little. Bad idea! I felt tired almost right after eating, then got a head and neck ache so I fell asleep. This morning I woke up feeling like I had been drinking (which I don’t do either ) and like Igot the flu. My hands are swollen like they use to get with artheritis and I am all sinusy and phlegmy. I ache everywhere. I am hoping to get an appt with my doctor when Monday comes to confirm and also hoping this dreadful feeling passes.
Alison says
Michelle, Don’t eat any more gluten!
Ben says
I was glutened last night and hate myself right now lol. It was my own fault, I convinced myself a dish at a restaurant was GF because I was desperate for a carb that doesnt taste like cardboard. GI problems (the big D) promptly follow and stick around for a few days. I also have intense anxiety and depression… But I think the depression is mostly from missing all my favorite foods and the insidious stomach/GI problems that even a small CC can cause. Sigh…
Alison says
Ben, gluten affects the brain so your anxiety and depression could be a reaction from the gluten. The correlation is well-known in the celiac/gluten intolerance world.
Dee says
I have been gluten free for 2 years. Vegetarian for approx 16 years. I had joint pain about 2-3 years ago after major stressors (injury and sudden/tragic death of my father) in my life. I basically had a nervous breakdown and had to rebuild myself, emotionally, physically as I was grieving and still recovering from my injury. It’s taken 5 years to recover.
The joint pain slowly went away after 8 months of being gluten free. I would still get some swelling in one finger but overall felt pretty good. I think I may have had small doses of gluten (by accident) over the past two years but no major issues from it that I could put my finger on. Recently (about a month ago) I had thai food three days in a row (left overs!) and had diarrhea for about 5 days. No stomach pain just couldn’t keep food in me. I took a high dose probiotic for about 3-4 days.
It was around that time I started to feel joint pain. I was also eating lots of salads with balsamic vinegar (daily) and realized maybe that could be it also. I was feeling good after several weeks of juicing, eating veggies, cutting out vinegar and dairy. I also increased my thyroid meds. After a week of feeling good (on vacation no less) I think I ingested either gluten or hot peppers/vinegar and then had vinegar again (duh) and the pain started to get intense. I’m taking daily baths in magnesium oil and sauna to detox it all out of me. I don’t know what kickstarted this pain again and it’s driving me nuts. I think I may, along with my gluten intolerance and thyroid issue, have candida issues – and maybe the vinegar causes it to go crazy.
Or, I was glutened (again) at the airport on our way home and started this mess of joint pain again. Worried, but trying to stay positive and eat very clean, read every label and detox best I can. Just interesting that the pain went away for about 8 days and now it’s back…how long can accidentally eating gluten cause a reaction. It seems others have not just gluten issues but other dietary allergies along with it – how long do “those” symptoms last as well. Just trying to figure this out as I go along and share my story to help others! Thanks… really like your blog!
EddiePR says
My gluten reaction causes SEVERE shortness of breath, all my body itches, my stomach bloats to 9 months pregnant!!! I’m a chef, so it’s getting a little difficult in my job because I have to taste everything… now my boss is understanding and I’m not tasting anything with gluten.
And I have a question, can this gluten attacks worsen an existing heart condition?
@mpv61 says
To EddiePR:
If you have celiac disease, you shouldn’t be working with wheat flour. It’s in the air and stays in the air for quite some time and it gets in your mouth/nose and into your gut.
My doctor basically said, “Don’t go on any bakery tours and don’t work with wheat (rye/barley) flour.” I won’t even make a box of gluten brownies anymore.
I know that would be terrible to have to change your job because of gluten, but it might be the case. You may want to start looking around to see if there are any GF cafes in your area. They’re few and far between, but they do exist.
If you don’t have celiac disease, I don’t really know if the same rules apply.
As for the heart condition, you should probably ask your heart doctor, your gastroenterologist, your general practitioner, and everyone you possible can until you get someone whose answer you trust to be well-informed.
Good luck!
Anne says
To EddiePR
You ask about the heart and gluten. You might want to take a look at the book “Wheat Belly” or check out the Wheat Belly blog or Facebook page. Wheat Belly was written by a cardiologist who tells all his patients to get off wheat along with a few more things. He says he is seeing great improvement in his patients health.
I had heart bypass 12 yrs ago and before I went gluten free 9 yrs ago I was short of breath and having pitting edema in my legs. My doc thought I was blocking again. I dropped gluten and those symptoms and many more totally disappeared. I can’t prove it but I truly believe that the inflammation from gluten played a large part in my coronary artery disease.
I don’t have CD but I am very gluten sensitive. I have been glutened by air borne gluten. I think it is important to be 100% GF whether you have CD or GS. Wheat is bad for us in so many ways.
Karaline says
I have a question Few months back I had a problem with vomiting and the other. After many visits to the doctor someone suggested it could be a gluten intolerance. So I stopped eating foods with gluten and the symptoms stopped. But why after 40years the sudden violent reaction to foods with gluten?
Jim says
To my sisters and brothers from another mother,
I echo your symptoms and pain. I have multiple intolerances and am getting to the point where I’m reacting to just about everything. My reactions are elevated heart beat, extreme bloating, burning, stomach pain, brain fog, extreme fatigue, highly negative depression and diarrea. If you are like me the #1 thing you want if your symptoms are not under control is answers. I was able to find some answers – I recently took the ALCAT test which measures your white blood cell reaction to different foods and food additives. What I found that I had not considered was that in addition to gluten and eggs which I was aware of, the test results indicated I was also severely intolerant of Soy and several food preservatives. Boy if you think going GF is hard try avoiding all preservatives! I am not saying it is a magic bullet but if there’s a chance it can help someone else in the way it has helped me, please, do yourself a favor and consider it. As part of the test they will come to your home or office to collect blood samples. It includes phone consultations with nutritionalists to help answer any questions you may have. I found it cheaper to order from a company in California rather than directly from them. I used Accessa Labs for reference. http://www.accessalabs.com. It is not cheap but if you are like me and are desperate, please consider it. I have already verified several of the results were spot on. Cashew nuts, for example, came back with a reaction. I thought it was odd, so I bought a jar and had a few handfuls. I reacted to the cashews just as I did to gluten, same old feeling of being glutened.
Good luck to all of you, I sincerely wish you all the best in your efforts to live a normal life with our… abnormalities 🙂
Stephanie says
I have been 98% GF for two years (occasionally cheat with a bite of amazing bread or piece of dessert) now but recently went in to the doctor’s to get a host of allergy tests. I didn’t know that I couldn’t be tested for reactions to gluten unless I ate it again (or so was told by the doctor) and I very happily followed her prescription and ate gluten for almost 2 weeks before going back for the blood test (mostly bread, pizza, regular beer!). The last day that I knowingly ate gluten, I developed a severe cramp in my upper stomach, which then traveled down my left side into, presumably, my intestines. I had that cramping for 5 days to the point where I could barely eat or do much besides lie flat on my back. Got the blood results back which confirmed what I already intuitively knew: I do not have celiacs but rather am gluten-intolerant.
It’s now been 10 days since my cramping began (and then lessened) and it’s back and I AM SO FRUSTRATED!!!! I am being stricter than I’ve been in a long time, ensuring that I do not eat gluten, but it’s very challenging to eat because I develop a cramp within 30 minutes of eating. I plan to connect with a recommended naturopath after my wedding in 2 weeks! because no mainstream doctor has been useful to me yet in dealing with this issue. My question to others–is there any specific thing I can eat or drink to help speed along the elimination of the remaining gluten and/or help to lessen my discomfort? Have I done irreparable damage to myself by going so wholeheartedly back to a gluten diet for those 13 days? I would appreciate any and all feedback on these questions. Thank you!
Teresa says
Dee, I had candida and my doctor told me not to eat fruit or any kind of sugar. It helps me within a day or two. Hope your feeling better:)
On a different note…One thing I think that can be overlooked is that celiac damages the small intestine which hinders us from being able to absorb nutrients. We have to make sure we are GF and taking vitamins to replace the ones we are deficient in from the disease or the pain will persist.
I just came across an interesting book called “Recognizing Celiac Disease” Has anyone read it?
Nancy says
@Stephanie, try probiotics, or PGX Granules(at most health stores) PGX is a high fiber pack of granules that is used mostly for weight loss, fills you up, but it has other health benefits as well, and whenever my stomach/intestines are out of whack this always seems to help smooth everything over. If you are going to try it do so several days before your wedding, it may make you a little gassy/bloated. In which case you can take half a pack at a time. They do have a website so you can google PGX and check it out. I mix it with an orange juice/soy/yogurt smoothie, it taste like whatever you put it in. Good luck to you.
Anne says
Stephanie, sorry to hear you are having difficulty getting over a gluten challenge. I know others who have had this problem too.
You may want to stick with simple foods and leave out all grains, beans and dairy. Try making a bone broth. It is very healing to the lining of the intestine. Here is one recipe but if you use google, you can find many. http://nourishingwellness.com/2011/12/the-healing-power-of-bone-broth/
Hope you get to feeling better quickly.
Jim says
@Stephanie – the test you took was an IgG4 antibody test. The reason you have to eat the offending food first is because your body doesn’t produce the antibodies until it detects the “foreign invader”. However, two weeks probably much more than is needed to register antibodies on the test. That’s why in my post above I recommended the ALCAT test because you do not have to poison yourself to get test results, and it’s accuracy is excellent. There is some debate on the accuracy of antibody tests but it is another piece of data to arm yourself with. Combine it with the ALCAT and you’ll have more answers. Theralac is the best probiotic on the market in my opinion, and Digest Gold makes the best digestive enzymes. Google products like Carnosoothe and Perm A Vite, they also can help heal your insides. Keep in mind, many of us who are intolerant of one thing are likely intolerant of other things as well – our immune system is not wired correctly. You probably have inflammation as well which is one of the roots of so many evils, so check up on products like Wobenzym and see if you think that would interest you. My most recent poisoning incident took close to two weeks to recover from, so hang in there, try to reduce your stress and congrats on your wedding!
lucy says
I have Diverticulitis and every thing i ate went through me and terrible cramp pains my life revolved around my bowels [if you no what i mean] that went on for a long time.Then i was told to go on wheat and gluten free foods and i am so much better can go out and not worry about any thing. I do find the food very expensive but the main thing is my life style is much better.
Beth says
Your reaction to gluten is exactly what has happened to me twice in the last 3 months. I am not sure what the offender was though, as I have always been able to tolerate gluten products. Could I suddenly not be able to, or to have a food allergy? After eating dinner and beginning a dessert each time, I could not finish the dessert; I felt incredibly dizzy first and then all the other symptoms began as your described. It lasted about 3-4 hours. I have been able to eat all the ingredients before though, that were in each of the desserts! Could it be wine? I had wine both times and I hardly drink alcohol, but again, I have had it before several times. It is very scary because I get anxious about eating in public now and then!
Selina says
It’s very helpful to read what symptoms other people have. I was recently diagnosed with Lupus. My doctor advised me to go gluten free (even though the blood tests came back negative for intolerance). The majority of my joint pain and fatigue disappeared after about 10 days. Over the weekend I accidentally ate gluten. I have had the big D for three days, stomach cramps, fatigue, and some joint pain. I also have more sinus and allergy issues. This latest bout has only strengthened my resolve to remain gluten free. I don’t care to spend 1/3 of my life in the bathroom.
Lisa says
Wow…All of these responses and so far I’ve only seen a couple that are similar to me.
I’ve not been diagnosed with anything. Nobody has ever suggested it or suspected it. I was diagnosed with fibromyalgia maybe 10 years ago; a whole host of widespread issues and we asked about fibro bc my mom has it. The thing is though….that for both my mom and I, we do not respond to 90% of the typical fibro treatments. It’s frustrating. I even went to a doctor (granted, a rheumatologist) who was supposed to be good at finding the odd things because we thought maybe I don’t have fibro or at least there’s something else going on. He found nothing except a bit of a Vit D deficiency. I was disappointed. Yet still….nobody mentioned gluten.
I only went off gluten because I started DDPYoga recently (you might have seen the youtube video of Arthur Boorman, the vet who couldn’t walk without braces and canes and is now a limber little thing) and it was highly suggested by a bunch of programs founders that we should ditch gluten and dairy and soy. Many others doing the program proclaimed how wonderful they felt. Despite not wanting to, I went GF. I didn’t have any miraculous cures yet but I suppose it’s a slow road. I do feel better, though. I’ve been GF for 7 weeks.
Twice now since going GF I’ve had gluten. Knowingly. The first time was because I’m a food addict and the food was there. I couldn’t resist. The second time was 2 days ago. Part of the reason I did it was the food addict in me, but mostly it was to test and see what would happen. I thought the first time might have been a fluke. But no…the same thing. It felt just like a fibromyalgia flare-up, which can feel like the flu. At first I thought I had no symptoms the first 16 hours, until I read here and see that anxiety is a symptom. I woke up numerous times in the night, once from a panic attack and it “manifested” in my bad arm. It feels like the muscles themselves in whatever area is vulnerable are also irritated and almost itchy. I have to grab a workout squeeze ball and tire out the muscles, and then take something for the severe anxiety. The next day I felt ok at first, chalked up the bit of tired and sore to 4 hours sleep on the couch. Until that evening….when the flare-up hit me big time. I’m not sure why it took so long to hit me like that. No GI problems. Tired, cranky, whiny, anxious, sore, achey…would have killed for a big tub to soak in. I broke down crying at one point.
Next day? I feel pretty damn good. It’s all out, it seems. I exercised and had the energy for even more time this morning. I’m curious that I seem to get no GI problems, but perhaps it’s too early to rule that out. Perhaps in 6 months time my reactions will be more like those above me have described.
LaurenNicole says
Thats crazy, I just recently for about a year now have been gluten free, thinking i have a gluten intolerance with all the signs and symptoms. But if i compare all of you, and your friend Shiela’s, i get all of your symptoms and half of hers. i just had an incident a couple nights ago and it was only from cross contamination. It gets worse and worse each time i have gluten. I feel a world of difference being gluten free, and i honestly prefer it! 🙂
Peggy says
Have been reading posts for about 8 months since I went gluten free last October, pretty much as a hunch I had an allergic reaction causing severly itchy skin, but when i went gluten free many, many, many symptoms totally unrelated seemingly to bowel and stomach problems went away almost totally including joint aches and pains, awefull restless leg syndrome (very painful aching calfs), bloating legs and feet that I did not even notice were bloated (thought it was just fat!) until I went gluten free. Posted a page somewhere on this site I think, will post a link if I find it with my full story, but oh my goodness everyone and anyone should at least try a gluten free diet to see if their life improves!! I have read so many tetimonials – most doctors I personally think don’t have a clue, or don’t care. I had an upper GI and a small intestine biopsy after geing gluten free for 6 months or so, negative of course, plus genetic blood tests for markers, also gave a very limited chance of having celiac, but oh my goodness again!! Whe I asked the clinic about the biopsy results and if it was rated for different conditions of the celia, they had not a clue what I was talking about. Plus only one spot biopsied, but I don’t need doctors’ confirmation of my sensitivity and/or intolerance to gluten – my total life transformation is proof enough to me. If I feel better, a bazillion symptoms of pain and discomfort are GONE, I have more energy than I can ever remember, and on and on and on, just for going gluten (and oats) free, pashaw (sp?) to the enterologist who casually said if you feel better gluten free, stay gluten free. Waste of my time and money going to him!! Now that I have been gluten free for 8 months, when I do get glutened intentionally (oh so little for oh so only a few bites) or unintentionally, I do now have bowel responses almost immediately, but once all is “cleaned out”, fell well again. If I have wheat in any form, severely itchy skin only relieved with high doses of benadryl, and horribly aching leg muscles. Still have some fibromyalgia of hands thinking some gluten in some of my medications, but relatively minor compared to how bad things used to be, hands, knees and feet – thought I had horrible arthritis, all but minor hand tingles are now gone. So, try it, if it works in the least, it is worth it! More, and more gluten free products out every day, and cooking becomes easier when you learn to read ingredients and keep your food fresh, and as pure and gluten free as possible. Wish I could advocate more!!! Hang in there all!! I am 56 and feel better than I can ever remember in my whole life!! Thinking I have had gluten sensitivity and/or intolerance for decades!! Best wishes to sll! SO thankful for this site!!
Peggy says
P.S. Sorry, NOT fibromyalgia of hands!! Neuropathy of hands, I think! Not a medical person, but tingling and numbess in hands and fingers, usually goes away if sure no gluten or wheat exposure at all!! Sorry my medical terms may be way off but hope I get the general ideas across! Thanks!!
Peggy says
My original post is above – search for “Peg, on November 6th, 2011, said:” 🙂
Mike says
I have celiac and have been off gluten for a few years. Prior to diagnosis i had no symptoms. Now if i eat gluten i get an instant low grade headache and within 2 hours get the sour pre-puke mouth. Around hour 4 i finally throw up by which point there is nothing in my stomach and the pain is intense and unlike regular puking. It feels as if i am trying to throw up my toenails. After vomiting i am fine and good to go, but i would do just about anything to avoid the turbo puke!
Alison says
“Turbo puke” – good term Mike!
Kenneth Legnon says
Just wondering if anyone has used products like Glutenzyme, Gluten Ease, Gluten Digest, etc. with any good results? I usually take 2 – 3 with meals I eat out and sometimes I think they work and sometimes I’m just not that sure. Would like to hear any comments.
Cass says
I was taking Gluten Defense. It just doesn’t work tho’. I find when I take a quality HCL supplement when I think I have eaten an allergen, I have less reaction.
Btw, PEOPLE need to stop drinking Aloe Vera. I experienced some really nasty side effects, including bruising for no reason (BAD bruising) bleeding after i’ve cut myself for WAYY too long and the worst rash I’ve ever had.
http://www.forummatters.com/forums/showthread.php/2462-Warning-danger-of-drinking-aloe-vera-juice
A says
I had given up gluten I was experiencing bloating and discomfort. I started to get really bad stomach cramps and other symptoms my doc diagnosed me with ibs I didn’t agree with this. the symptoms didn’t get better with meds until I started eating a more natural diet lots of fruit and veg. I have been vegetarian for most of my life but wasnt eating well. No more meds and I have gone back to eating gluten in small amounts and feel healthier than ever. I am starting to wonder if all those gluten free products I had been eating were the cause of my symptoms.
Ernest says
Every now and then I get a severe attack.My whole body gets covered in lumps and I itch so badly that i do not have enough hands to scratch all over my body from head to toe.I have been admitted to hospital on these ocassions and they have given me oxygen because i battle to breath.They also put me on an adrenalin drip.When this starts happening to me i have taken 4 Allergex pills and they still do not help me with this symptom.Please could you advise me on what you think could be the cause of this as i have been to see my G.P. and all he has told me that i must keep an adrenalin injection with me.Surely there must be a resolution to the cause of this.It happens proberly once a month.This attack takes place at anytime,even while i am sleeping.
Mike says
A said ” I am starting to wonder if all those gluten free products I had been eating were the cause of my symptoms.” GF foods dont have anything in common other than that they are GF- no common ingrdiant at least not the gf food i eat. You might look up the barrel theory that basically says that your body can handle a given amount of toxins(for one toxin is gluten). Once the barrel is full, toxins overflow in the form of symptoms (rash, exima, headache, lactose intolerance etc). Once i quit gluten my asthma, allergies and lactose intolerance disappeared.
CAFLY says
To “A”: My experience of going off gluten- actually left me more sensitive for several months. I reacted to everything! Don’t rely only on the data you get from a few weeks gluten-free and don’t switch to a reliance on GF processed foods. (You could be switching from one ‘poison’ to another unknown ‘poison’ which skews your data.) Best medicine is to go to natural foods that rot, and give enough time for your body to heal before making judgement about what is happening. It could be a combo issue with gluten AND grains (which are commonly used for GF substitutes).
Forums are helpful but they are not definitive. There is no cookie cutter model for gluten intolerance. We are biological beings being having biochemical reations to everything that goes into our bodies. Dose can also make a difference.
It honestly took about 2 months for me to start feeling more like myself again, and to stop having contrary reactions to food. 7 months in, things are stabilzed, I can see that my reactions follow a 2 day pattern. Anxiety starts 12-24 hours after ingesting small amounts, signs of dehydration are present. Blinding migraine-esk headaches follow 24-36 hours after ingestion. Sometimes my sides itch but I don’t get rashes. Stomach does not always react now unless I eat significant amounts of gluten- and food combinations do amplify the reaction. High sugar or dairy with the gluten usually causes a strong reaction within 20 minutes of ingestion. So no donuts for me! 🙂
Since reaching the 6 month elimation mark- other things/issues have become clear enough to be addressed. Things that before were unnoticed because the gluten issues hid them.
Donna R says
I have been gluten free for 2 weeks. Felt so good, energy like I’ve never had and my skin totally cleared up. I have dermatitus herpetiformis. this has been my only symptom of CD.
Looking for somewhere to eat out and Dominoes Pizza had a sign advertizing gluten free pizza. I was weak and could not resist. That was my first reaction to gluten since I stopped eating it. My reaction was aweful. No energy at all and my skin is unbearable. My reaction to gluten before I went gluten free was not that bad. Do the reactions get worse as time goes by in your gluten free lifestyle?
Does anyone have something to share about DH? I have been to at least 4 Drs., no one could diagnose me. I have had the sores for 3 years and kept searching for the cause, kept coming back to Celic website and discovered DH. Thank you God for leading me to the Celiac.com website so i could diagnose myself. Anyone know how long it takes for the DH to go away? I have been on Dapsone for 2 weeks but don’t want to stay on that medicine. Too many side effects.
Donna Robertson says
I have dermatitis herpetiformis. (gluten free for 3 weeks) I am self diagnosed, no other symptom of CD. I have been to many drs. and they could not figure out what my skin problems were. For some reason I kept returning to the website for CD, finally saw picture of DH and knew what i had. I have had the sores for almost 3 years, i am on Dapsone but do not want to continue because of side effects. My skin has almost completely cleared in 2 weeks of Dapsone until i accidentally ate gluten 3 days ago. My skin is driving me crazy and I have litterly no energy. This reaction was worse than any I have had before. Is that because I have been gluten free for 3 weeks? Just wondering if these episodes get worse. I would love to hear more experiences with DH. I am so thankful God continued to lead me back to CD websites. I have prayed for a diagnosis for a long time. My sores are on my face.
Rossana Cuéllar says
I was glutened a few hours ago. I found this page and felt so much better just by knowing I’m not the only one!
So my first symptom was about 1 hour: indigestion (felt really full, was burpy and felt very uncomfortable and bloated).
Then after 3 hours I had an “attack” of intestinal cramps. Then I had to empty my intestines very painfully.
Then I had hot flushes, drowsiness, shortness of breath, accelerated heart-rate, nausea, gases, burps and head twinges.
ALL FUN
James says
Hi,
I was recently diagnosed(3months ago) and I’m nearly 50. Going on a gluten free diet suddenly made better so many problems I’ve had all my life(skin problems, aches and pains, headaches, brain fog and the list goes on and on)
I just got back from Bali on holiday where I had a not so nice experience with food. As careful as I was, I think I got glutened almost everyday. Bad stomach problems, headaches, skin problems returned on my hands and feet. Its now 3 days since I returned and my stomach is still upset. How long can this go on for?
Rossana Cuéllar says
James, what really worked for me last time I was glutened was taking probiotics (good bacteria found in kefir, yogurt, or even pills) and also taking 2 charcoal pills on an empty stomach.
Hope that helps!
Mucha says
OMG where do I start? Since middle school…heartburn. Sinus surgery in my 20’s. Battled with depression. Nothing extreme. Prolosec on and off throughout my adult life. I’m now 37. Two years ago I hit rock bottom. I hate to even mention it, I’m tired of expressing it. Along with nightmare periods, I started having hallucinations about killing myself, understand this was not suicidal thinking. Psych med after psych med, attempted treatment at bipolar disorder for the mood swings and downright nasty tantrums. Come to find out, I’ve been anemic the whole time, likely for the past 13 years. My ferritin was at 3 (three)!!! When things really got bad (two years ago) I was having strange reactions to certain foods. I couldn’t figure out what it was. Doctors responded to me like I was an idiot. I kept mentioning the “high” that I would get with certain foods. I gave up gluten in a desperate attempt to stop the acid. Wouldn’t you know, it worked. Then I had accidentally consumed it. I can feel it in my body within minutes. I feel funny. Then the brain fog comes in. Then the mood swings. The MOOD SWINGS!!!! The weakness. I had endoscopy 2 years ago for the throat spasm I was having. Nothing. The look on my doctors face in response to me asking, “Do I have celiac?” told me that he didn’t even look. Now I sit here trying to figure out the difference with gluten intolerance, Celiac, wheat, etc. etc. still anemic. Seeing a hematologist next Thursday for an infusion since I can’t get my numbers up. Then I’m having ALCAT testing done. I’m at the end of my rope with this crap. Certain people like to ridicule me because I know that I can’t eat gluten. Like it’s a friggin joke that being malnourished made me nearly suicidal. I take absolutely no psych meds anymore. When I’m off gluten I am this amazing person that I’ve never known. I’ve missed out on so much of my children and I’ll never get back the best years of motherhood. It kills me. And yet I still sit here and wonder if it’s Celiac. My gyn never checked my ferritin because he said that my RBC were fine. I’ve lost my faith in doctors. I’ve done all the legwork. If I got all of my copays back for this matter, I’d have enough money for another PROPER endoscopy. Sorry to sound negative. Got glutened 6 days ago. I don’t know where to go from here.
Alison says
Mucha,
Just stay off gluten — what else is there to do? Who cares what anyone else thinks about it. You know it’s right for you. Live your life!!
Rett says
just last night I ate a heavy gluten pasta dish and then left home feeling fine i danced for about an hour then my tummy started hurting and i needed to lay down. soon after that I was throwing up and diarrhea at the same time. I couldn’t walk and had to be carried.(I’m 9yrs old)i felt like I was going to faint. after 20min of sitting down I was feeling fine and could walk again.its ether gluten or the flu… probably gluten.
Anne says
I think we can drive ourselves crazy with trying to pursue a diagnosis. Celiac disease or gluten sensitivity – the treatment of a 100% GF life is the same for both
Mucha, yes that is maddening that your doc was right there and did not take a biopsy of your small intestine. But even if it was positive, what other treatment besides a GF diet. Did he do a biopsy of you esophagus?
There is an excellent post on Mark’s Daily Apple about gluten sensitivity/celiac disease. Also read the comments – so many finding that removing gluten improves their health. The Primal/Paleo community may have it right – give up grains and other inflammatory foods. Just because one does not have CD does not mean that gluten is not setting the body on fire. http://www.marksdailyapple.com/how-common-is-gluten-sensitivity/#axzz25dFJLrpH
I did do testing through Enterolab 9 yrs ago. I gave up gluten and never looked back.
Kendra says
I’m just wondering what people have discovered for the foods that make their symptoms worse? I have a wheat/rye/barley allergy that makes me itch, sweat, get irritable, and have diarrhea. I’ll get sore and achy a bit. It’s not a severe allergy, so once in a while I’ll eat bread/pasta, etc. despite the effects based on the fact that i love the food. However, when I eat things such as bought cookies or chips (chips are the worst) I get Severe body ache and chills (just like other people have been describing). Other things like the foggy head, tired, headache, etc. A couple of nights I woke up in the worst pain I could hardly sit up. All of my muscles and joints were throbbing. Thinking common sense, it’s not like I did any strenuous exercise. The next day was terrible, I couldn’t pick my kids up without wanting to yell out because it hurt my wrists so bad. I finally figured out the common food I ate after this happened a couple more times. Chips! I have always suspected I may have an intolerance to soy (which the chips have an element of). I can’t understand why I just get itchy and a little sore from eating plain bread, but if I eat these premade junk food produc I have intense pain? Is gluten stronger in these foods? I just wonder what others have the worst reaction to? I get tingling/hurting hands and feet when I eat things such as salad dressings and
Kendra says
Continued…
Sauces-they make me itchy too so I have cut out a lot of that for a while now buys sometimes I cheat and eat a little bad food and remember why I stopped! I’m going for celiac testing soon, just on a gluten diet for two weeks prior to the test and it’s killing me! If its not gluten problem, has anybody had similar reaction to soy lethicin?
Kate says
This is interesting indeed. I found out after suffering for over 20 years symptoms of IBS and insomnia aching joints, headaches, nausea etc that I was in fact GI. 12 months after going Gluten Free I feel great, well, not today at least. On sunday my husband and I stopped at our local Muffin Break for a gluten free muffin and cup of tea. I don’t eat out a lot as I don’t trust other people to know what gluten free actually means, but, these people seem to have got it right (usually).
By about 2pm, 2 hours after eating the muffin I felt like I had “hit the wall”, I could have laid down in the supermarket aisle and gone to sleep right there and then. I struggled to associate the items on my shopping list to the items on the shelf! I abandoned the shopping and went home. I didnt sleep at all that night. The next day I suffered from wind, discrete wind, thankfuly, then early evening the diarrhea started. That continued through the night and next day until about lunchtime, needless to say I didnt sleep that night either. Today, I have had to take a day off work and missed a fantastic course because of it. I am exhausted.
And yes, I think the Paleo community are thinking along the right lines, very interesting stuff.
Nancy says
@Kendra,
Make sure two weeks of gluten is enough for an accurate test result.
Mary Shields says
my reaction tends to depend on what type of food I eat.
If I eat a bagel…my reaction can usually be the “tired..zoned out feeling”…generally occurs within a half hour. I just want to lay down and curl up.
I’ve actually been trying to avoid gluten…breads and buns…still trying to figure this out…but…tonight I goofed up and here’s the scoop on that.
Well…today I bought some muffins for the kids…they looked so good that I had some too. Muffins and some milk..then all of a sudden when I was finished my sinuses were just turned on…coughing…gagging on mucus and ready to throw up.
I know it’s not the milk because I drink it every single day and don’t have any problems…but I know it was the muffin.
It is odd that I can have pancakes and milk and not have any troubles, but the minute I try to eat bread or a bun or in this case…a muffin…all h… breaks loose with my sinuses.
I wish I could understand it all.
Paulette says
I just found out I am allergic to wheat. My reactions were very strange. I would eat and the day after have bouts of diarrhea and while getting this I would break out in hives on my face and lips. Breathing was shallow and my tongue would slightly swell. I would take bendryl right away and within ten minutes I would be back to normal. The doctor thought it might be a combination of foods when eating and leaving my body would create a reaction. So I got tested and the only food that came back on the test was wheat.
I know if I have almonds or some cheeses I itch, so I stay away from anything that I might set me off. Now I see wheat is in everything and this makes sense to me. So I am eating wheat free about six days a week and sometimes slip but I know I must make the full exit from wheat. Your site is a great help and thank you for all the information. Paulette
Shauntel says
My five year old son was sick all the time. To the point of pnuemonia 3 times in 6 months. Was diagnoised with wheat,barley,oats,rye,soy,and peanut allergy. He was put on a gluten free diet. If he eats anything with gluten within 2 hours it turns in shortness of breath,wheezing,extreme coughing,headache,stomache cramps that double him over,leg pain,and lethargic. This can last for 24 hours to days.
JJ says
Why do I get very painful gums after I eat wheat or milk? (Which I’m allergic to, it’s just that sometimes I can’t seem to stay without.)
Kimberly says
I recently figured out that I was gluten intolerant (I probably have Celiac disease, but never got tested). When I was a toddler I was constantly throwing up. It was kind of funny, because it would usually happen after I started laughing or took any sort of transportation, so my family never figured out what was wrong with me. To say the least I was a kid who had malnutrition. I was super skinny, with graying skin and despite all the energy I had in me, I looked ill. Coming from Chinese descent, my parents tried to make be better by drinking Chinese medicines. This stopped me from throwing up, but after that I just started getting chubby. I was never fat or over weight until I went to college and started taking birth control, which some how started up my symptoms of Celiac disease again. When I drink even half a bottle of beer, I have a blotchy redness all over my skin, and bloodshot eyes. I can normally down shots 3-5 shots before feeling anything, so that definitely wasn’t normal. After being glutened, I feel nauseous and bloated. If I try to suck my stomach in I automatically have to run to the bathroom to puke. I also fart a lot. Sleeping isn’t a problem, but waking up is. I feel dead, and I get these eye bags that extend out to my cheek bones (from being bloated) so my eyes feel so much weight that it’s hard to open them. However, if I get enough sleep that night and automatically wake up on my own, I don’t have a problem waking up. I realized that the amount of gluten I eat affects the duration of time I’m bloated for. There was this time that I ate a whole serving of fries and ended up being bloated for days, and remember this clearly because I sadly had a music video shoot while I was still bloated. Then there were others times when I ate a piece of bread, and would be visibly bloated for two or three hours from when I wake up. I also get foggy brained, slurred speech to the point where I sound like a retard. Not great when I get picked on during lectures. I also realized that eating gluten while having a low immune system or eating something that I’m slightly allergic to will magnify my allergies and I will have hives either on my face or all over my body. After two weeks of going off of gluten, I slimmed down a lot, I dropped an entire dress size and my cheek bones were define for the first time in my life. It has officially been 4 months since I have voluntarily eaten gluten. Still slightly new to this new diet, it has been a challenge to find out what I can and cannot eat, and ordering food on days when I’m too busy to cook proved to be difficult. However, I love the new me and I don’t think I’ll ever voluntarily eat gluten ever again.
Brad says
While a doctor has never officially diagnosed me, my symptoms completely fit. When i first became ill, i had almost all of the symptoms that each individual had in the article. For 2 months while figuring out what was wrong, i would wake up at 3am (if not before but it was almost like an alarm clock) vomiting, then diarrhea for the next few hours. From the beginning of the episode i’d have a migraine (which isnt abnormal i’ve suffered from those my entire life, going gluten free helped tremendously) that would last for the next 3-4 days. During the second and third day i’d get the body aches. Seemed to localize themselves to my spine. It was like i had been in a car accident and had whiplash plus a bruised back. So incredibly painful and no pain medication will touch it. I get the spacy feelings but not nearly as much, and i also get really jittery. I tell myself that it is from the pain, and not being able to relax, but it has turned into a symptom of its own, of course i’ll be getting clammy and feeling feverish during all of this. For me this only lasts for about 4-5 days if i’m strict on my diet after getting “poisoned”. For the week or so after that i’ll have a small incredibly itchy rash on the back of my neck along with a cold. It’s like my immune system dies when i get glutened and will get sick no matter what. I’ve probably left 1 or 2 things out, but these are my main symptoms of being glutened. If i live gluten free then these pretty much dont exist and life is good. When i get a small amount of cross contamination i’m no good for the next 5 days.
Kat says
Never again!!!!! We were out for football and I decided to eat wings, I figured what’s the worst that can happen!!! I am so ill right now I cannot even explain. My stomach is killing me, nausea, anxiety, phlegm, my body hurts and I have been up since 4. Lesson learned!!!!!!
Rita says
I have not been tested, but I don’t need one. I have the GI problems, the rash, the ataxia, and a few other things like fatigue and joint pain. When I am glutened, the first thing that happens is that I feel instantly tired — within 15-30 minutes of eating — not just tired, but like passing out. If it’s cross contamination, I may never have the GI issues, but the rash will go crazy that day and I’ll have ataxia attacks (vertigo, slurring speech and having trouble finding words, can’t walk straight like drunk) within a few minutes. If I have GI issues, they’ll start 4-6 hours later. The ataxia will stop that same day, the GI issues will usually clear up in 3-10 days, but the rash will take several months — not to mention that the fatigue and joint pain can last as long as the rash. My doctor doesn’t think gluten can do all this, so I’ve done other testing but it’s only when I’ve challenged the GF diet myself that I get the symptoms triggered, again and again. It’s just so nasty, tho, that some symptoms last a month or more, so it can get confusing when still having rash and joint pain even tho GI symptoms are better.
Mel says
What a fantastic website! I’ve been diagnosed coeliac for 3 years and try hard to keep to a GF diet ….and am pretty successful !
However, I ate some bread on Tuesday (supposed to be GF) but was most definately not! My stomach has been gurgling ever since, had chronic gas and feel very lethargic.
As other posts have commented, I do belive that symptoms are worse the longer you are GF
Becky says
Can anyone tell me if there is a reliable test for food allergies, such as Alcat? Please know by experience. Been reading many things that state these are not reliable.
Greatly appreciated!