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?
Anne says
Although tests are often helpful, there are no perfect tests. Even Dr. Fine of Enterolab says that the tests from his lab should be used as guides to help make decisions about foods. Sometimes eliminating foods can give the best answer.
Another lab you may want to look at is Cyrex. It has an interesting array of tests. I do not know much about Alcat.
whit says
I’m so happy to have this site. Since I have never been tested for being Gluten Intolerent, I sometimes wonder if I made it all up. I’ve been GF for more than 4 years and at times I wonder if I should try some gluten. Then I read some of the postings from this site, and I remember the gastric pain and fatigue. I have NOT tried gluten and wont! Thank you!
brian says
I have had the same symptoms but haven’t been diagnosed yet…growing up I got the occasional back cramps in my lower right side so…last year 2011 I had about a couple of sips of coffee and with with in 10-15 I was having the unbearable pain I ever f er t…every time I stood up it felt like I was going to passed out…I eventually drunk a Ginger ale and about 4 sips later I was throwing up…then 2012 I ad sunken doughnut..iced coffee with doughnuts… same affect but his time nothing was working so I made myself throw up…and instantly I was fine… this last time was which was today 10-21-
brian says
I have had the same symptoms but haven’t been diagnosed yet…growing up I got the occasional back cramps in my lower right side so…last year 2011 I had about a couple of sips of coffee and with with in 10-15 I was having the unbearable pain I ever f er t…every time I stood up it felt like I was going to passed out…I eventually drunk a Ginger ale and about 4 sips later I was throwing up…then 2012 I ad sunken doughnut..iced coffee with doughnuts… same affect but his time nothing was working so I made myself throw up…and instantly I was fine… this last time was which was today 10-26-12..I had some different effects…. I had breakfast eggs potatoes and a biscuits.. I instantly got got sleepy so I laid down.. a couple hours later I woke up with the same pain…I ended up throwing up but after. I go go lay down I get a slight headache… and the pain slowly goes away…so this time I didn’t get instant relief…but I going to get checked…..but it seems I experience most of the same symptoms
Sherry Webb says
After doing A LOT of research as to why I had nickel sized red marks on my body with severly itchy raised bumps inside the mark; depression, contstant SEVERE gas and bloating, migrains, joint pain, moodiness, constant brain fog, chronic constipation, diagnosed with Hashimoto’s and Fibromyalgia, sever gum disease and boneloss etc etc etc….I decided I must be at the very least sensitive to gluten. I mentioned this to my doctor and that I had stopped eating gluten and she pretty much laughed at me. She can laugh, I don’t care .. I was beginning to feel so much better…bloating and gas gone, fog is diminishing, level of pain is lowering. I have now become a fanatic about ensuring there is no gluten in my diet. Even while being as diligent as I possibly can, every once in awhile I KNOW I have ingested something with gluten in it. Tonight though was my fault completely with a gluten oops. I have always baked elaborate cakes for friends and family…wedding cakes, birthday, showers … whatever and I love doing it…mostly the creative process…I have never really liked eating cakes. Anyhow, I am busy making breadsticks and some from scratch lemon cupcakes tonight (my grandson’s birthday is next weekend). I was very careful with the breadsticks (dead man’s fingers…its a pirate themed birthday)… wore gloves…apron that came off when I was done etc. Then, I started on the cupcakes…and completely forgot myself and licked off a drop of batter that fell onto my finger. It was a small amount so I was hoping that there wasn’t enough to hurt me..after all it was a drop. Shortly after that, my throat started getting sore and it almost feels like my lips are a bit swollen. The muscles in my arms (between my elbow and shoulder)are so sore, I can barely lift my arms, my leg muscles feel like they won’t hold me up and fatigue and shivering uncontrolably..I am a bit cold but not enough to almost shake out of my skin and now my stomach hurts, I can feel the gas building and my chest and inner thighs are itchy and tingly. After being gluten free for the majority of three months (two other accidental glutenings at restaurants…I now eat only at completely GF free restaurants); all these symptoms and the severity have completely caught me off guard…I did not expect this…Almost to the point where the first thought that goes through my head is .. you must be imagining this because you know you got a bit of batter in your mouth and swallowing it before thinking…what the heck did I just do. Are these things consistent with being glutened? The other two times what I remember most is watching my flat stomach distend enough to look 6 months pregnant, as well as the severe gas, constipation and brain fog.
Sarah says
It seems like I’ve had a variety of symptoms, enough to wonder if they’re really from gluten or not, although I didn’t experience them until I cut it out and then reintroduced it deliberately or ingested it accidentally. I thought I’d try going without gluten just to see if it would clear up my persistent acne. I’ve also dealt with chronic constipation over the years. I’m hypothyroid as well. After the first day, I was no longer bloated, and within days my constipation had resolved. My acne began to improve as well. The first time I noticed symptoms after ingesting gluten again was the day after I’d had a biscuit from Bojangles, about a couple of weeks after that first cut, although I hadn’t cut out gluten completely. I had some rice at lunch the same day that may have been suspect as well. I got really bad cold chills that evening and felt really out of it, maybe brain fog. About two weeks or so later, I had bloating and constipation come out of nowhere two weekends in a row, never lasting more than a couple of days each time. I realized it may have been from gluten-free cookies that I baked on cookie sheets that probably hadn’t been completely cleaned from when I baked regular cookies on them. I’ve had cookies really stick to them and had a very hard time getting them cleaned. I threw them out and bought new ones. The last time, I ate corn which had been thickened with flour for lunch on a Sunday, which I didn’t find out until I called the restaurant a couple of days later. The next day after eating it, I had painful bloating and ended up becoming really sleepy and fatigued during the day. It lasted through the night, and my energy began to return the next day. I felt pretty good until Friday afternoon, when I started feeling unstable and off balance. I was in a meeting and thought I’d get up and grab my laptop. I nearly fell just trying to get out of my chair. I carefully made my way to my office, grabbed my laptop securely with both hands, and went back to the conference room. That night, I basically sank into the couch while I was watching TV and thought I’d have to crawl to my bedroom when it was time for bed. I felt like I couldn’t fight gravity. What I don’t know is if that episode on Friday might have been from what I ate on Sunday, which is the most gluten I’ve had in my system since the biscuit, and I’d gone a lot longer without ingesting any gluten when this episode occurred. I didn’t feel any painful bloating before Friday’s episode. I decided to check some hand lotion I’d been using regularly leading up to Friday and saw that it had vitamin E (no source listed) in it. I decided to go back through my hand lotions and replace them with lotions without obvious wheat ingredients and vitamin E, not an easy thing to do. One other idea I had about Friday is that maybe then is when the autoimmune attack on my thyroid occurred, or it had been happening over the course of a few days, and I didn’t feel it until Friday. “Paranoia” has become my middle name. I would love to blame gluten for all these episodes, but with the symptoms being so different each time, I don’t know if I can. I would love to hear if others have had a wide array of symptoms each time they’ve been “glutened”. I feel like I’m going insane. 🙁 I’ve been trying to be as close to 100% gluten free as possible for a little over a month.
Sarah says
Another thing I forgot to mention is that my sleep has been worse since cutting gluten. I’m lucky if I pull over five hours in a night. Not sure what would be causing that. I’ve considered my thyroid medication and gluten withdrawal. I’m on a slightly lower dose of thyroid medication right now. I’m alternating 50 mcg and 25 mcg, where before I was taking 50 mcg daily. I’ve basically eaten gluten all my life, and up until September 11th ate some kind of whole wheat product, such as bread or crackers, almost daily. The thought of having another food allergy/intolerance scares me. I’ve thought about asking my doctor about testing.
Teresa says
RE: Donna R.
It took me 3 months of being GF before I even noticed my DH clearing up a little. I had DH for 13 years without the proper diagnosis so that could be different for you. I’ve never used Dapsone. My rash is always in the same place and it is usually about the size of a quarter and what works for me is to ice pack it and the itch stops as long as the ice is on it. It has been about 2.5 years since going GF and I notice that the reactions are becoming less severe as time goes on. I also eat Dominos GF pizza and I have no reaction to it. However there are things such as wine that other people have no issue with that I can’t tolerate. You just have to find what works for you. One thing I’ve learned is that I have to remember or write down everything I eat so that if I have a reaction I can recheck everything I ate and figure out what the culprit is. Sometimes it’s something you wouldn’t suspect. At one point I was eating some bars that were made GF but processed on equipment that also process wheat. I usually have no issue with that but those were what was making me sick and it took me a while to figure that one out. Good luck! Stick with it…it’ll get better:)
carla says
So pleased to find this site.
I have been gf since July 2011 and have been glutened a few times.
Wondered if anyone has had symptoms after eating gf oats?
I ate a bowl of gf porridge on Saturday and have not been the same since. I have stomach pains,bloating and bad wind. I also feel sick after eating anything,hope i get back to normal soon,it’s so annoying!!
Jennifer says
Just wondering if anyone didnt get symptoms until the next day. I was just diagnosed with celiac disease 2 weeks ago. For Halloween I went to my Aunts house and brought my own food but did have some deviled eggs that she made (along with spooky baked goods that she probably made on the same counter). Today I ate the same rice dish that Ive made my self for lunch that I have eaten several times and I immediately felt sick with horrible stomach cramps, shakes and diarehea after eating – all ingredients are labeled gluten free so could it have been contamination from the eggs from yesterday?
Sarah says
I had another thought about the symptoms I had that led me to try lowering my thyroid medication. One night, I only had about 2.5 hours of sleep, and I felt like I was having hyper symptoms like rapid heart rate. This was the same night I’d had the biscuit from Bojangles. Three days earlier, I’d eaten half a breadstick at my mom’s. I started to wonder if this had actually been part of an autoimmune attack, as I had remembered today that Hashimoto’s can fluctuate between hyper and hypo. I think a reason my sleeplessness has gone on like it has is that I’ve been undermedicated. I’m feeling a little worn today in spite of taking my 50 mcg dose this morning. I’m going back to my 50 mcg dose everyday and see if things get better. I’m beginning to think my initial insomnia was indeed due to withdrawal, and I made things worse by trying to change my medication and supplements.
Rebecca says
Mucha,
I can really relate to you feeling like you’ve missed out on some great times of your children’s lives. There have been times in the last few years when I have been so low and negative, I just knew my kids would be better off without me. That is a terrible feeling.
Since my Celiac diagnosis and going totally GF in May 2012, I’ve noticed a massive difference. Physically, the changes are extraordinary, and I have much more control over my mental and emotional states. I still get angry, frustrated and low, but it’s not the dragging, debilitating depression I suffered with.
Keep on trying the GF diet. Even more, try only to eat things that are simple. By that, I mean, food in it’s purest form. Nothing that’s been processed. Eat real cheese, fruits and vegs, meat and GF grains. Don’t use sauces, seasonings (except salt and pepper and simple herbs), anything that comes from a can!
Trudy says
@Carla,
I have also had reactions to g/f oats. The reason for this is that oats contain a protein called avenin. About 5% of coeliacs have avenin-sensitive enteropathy.The Irish Coeliac Society recommends that you do not try these until you have been on a gluten free diet for 3 years, and if you have a reaction to avoid from then on.
Great info here on reactions, thanks
Rossana says
@Jennifer
I get one symptom long after I have eaten gluten. About 10 – 12 hours after I get knee pain.
Cheers
CAFLY says
@ Jennifer-
Most of my reactions for gluten occur 12 to 24 hours after I consume it. Anxiety or depression can take up to 3 days to appear. My dairy/almond reactions are usually 20 minutes to 4 hours later. Everyone is different- lots of common themes across both those with celiacs and those with intolerance- there is no single box that everyone fits in. Gluten is a tricky little protein.
Try tracking your diet AND how you feel separately. I draw a line with hour marks, and then write meals above it and record how I feel below the line. That’s the only way I could see the delayed correlation and identify gluten as my culprit. Its also been the only way I can figure out additional foods that cause inflammation for me since my official diagnosis is IBS, a diagnosis that is about as effect as your doctor looking at a rash and saying- oh, yes, you have a rash.
Tracking your diet and knowing your reaction time will also help with ammending your diet because then you can know what to avoid next time. It could be as simple as cross-contamination in your Aunts eggs- or she could have used a mayo or mustard with a gluten ingredient.
maureen says
I have been diagnosed with CD (was tested for it because my mom and sister tested positive first). And you know what? I have NO symptoms – no stomaches, headaches, anything from eating gluten. I have eaten it my whole life and I love bread and pasta. I eat it daily with no problems. My sister also ate it her whole life but after being diagnosed (she was tested because she’s anemic) all of a sudden she went on a GF diet and developed adult acne out of nowhere. I don’t get why a GF diet would cause acne – has anyone here had this problem?
Anyway I’m glad I stayed away from the GF crap, it tastes like cardboard. Quite honestly I think Celiac’s disease is a load of crap. All of the symptoms listed here seem to be common ailments.
Bonnie says
To each his own. But for me, and a ton of other people, gluten makes us deathly ill. Say, think, and do whatever you please but don’t say Celiacs disease is just a fad. For some maybe. But for the real people that have it and have to eat ‘cardboard’ as you call it, it’s not some game or crazy diet. It’s our life and it’s forever.
Thanks.
Peg in Monee, Il says
I have been gluten free for just over 1 year now and it has drastically changed my life only for the positive!!! My story is on this website, and thanks to this website also, I was able to determine that I have a serious gluten intolerance!!
Now that I have been almost 100% gluten free for so long, if I do eat something with gluten, intentionally or not, I usually get a reaction up to 24 hours later, mostly severe pain and swelling in hands, feet, and really most if not all joints.
I did a test the other day – craving something sweet, at a home with no gluten free snacks, ate two pop tarts just for kicks and memories, and the next day it was like my hands were on fire!! Just reinforced my reaction to gluten is and that I need to stay away!!
So thankful for this website and other websites addressing gluten intolerance and celiac disease!! I am 56 years old and feel the healthiest I have ever been in my whole life!! Yay!!
Alison says
Hi Peg,
You just made my night! I’m so glad this website has helped you and I’m sure you have helped many others!
Alison
Donna Robertson says
MAureen, your sister might have DH instead of acne. She might want to check that out. I have had DH on my face and to everyone else it looks like acne. It takes 6 mo to 2 and a half years to go away after eating gluten free.
Nancy says
I’m curios if anyone with celiac or gluten sensitivity has a low/extremely low cholestrol #. My dad has celiac, i’m not sure yet if i do, but i have a total cholestrol count of 150, my HDL and LDL are below the average #’s, like off the chart. I read somewhere that this can be related to celiac disease. Just wondering if anyone else has the same thing. Thanks.
Sarah says
There is such a thing as “silent” celiac disease. Just because you notice no symptoms doesn’t mean damage isn’t being done every time you eat gluten. Did you have the celiac panel done to get your diagnosis? My understanding is that for something to show up on the panel, there already needs to be a fair amount of damage present. It’s definitely no fad to me; going gluten-free means that I can stop the autoimmune attack on my thyroid and hopefully prevent its complete destruction. My acne has improved, and GI symptoms that I had previously have practically disappeared. While it’s too soon to tell for certain, I think my monthly cycle is regulating as well. I also just feel better in general. I actually have enjoyed the gluten-free products I’ve tried and even converted a favorite brownie recipe to be gluten-free. The brownies tasted as good as, if not better than, the original ones. However, I’m actually trying to focus less on grains and more on meats, fruits, vegetables, and nuts/seeds, especially because of the arsenic issue with rice.
Lisa says
Nancy, I had extremely low cholesterol my whole life until I changed my diet about three years ago at age 41. Now it’s high! I read somewhere that it is low before you’re diagnosed/changed the diet (I’m self-diagnosed) because the intestines are not absorbing the fats; just like I was really vitamin deficient (rashes around mouth on and off for many years) even though I used to eat a very healthy and nutritious diet with plenty of vitamins. My intestines just didn’t absorb anything. I also used to take one whole Ambien to sleep sometimes, but now even a third of an Ambien is too strong for me. I’d like to find out more about this. And I’d like to know how to bring the high cholesterol down. : )
Nancy says
Thanks for the reply Lisa,
I had bloodwork done because I was going to get a life insurance policy, i was turned down for the lower rate and couldn’t figure out why. Talked to my doctor and he said there was a study done relating to low cholesterol and cancer. The people in the study with low cholesterol were more succeptible to cancer. I wanted to know why i have low cholesterol and that’s how i stumbled upon the relation to celiac disease. So I’m trying to figure out how to raise mine a bit and you want to lower yours! I’m not sure what your diet is like or whether you exercise on a regular basis, I know there are medications you could take, but I myself would rather try the diet & exercise method first. It is intersting though that yours was low before a GF diet. I’m going to try the GF diet and see if it makes a difference. I have heard from many sources that having damage due to gluten allergies/celiac can definitely have an affect on how your body absorbs things from food. Thanks for your input!
Lisa says
Nancy, I just read that when the villi (little hairs) in the intestines are flattened or damaged from gluten in the diet, absorption is hindered, thus, low cholesterol (as well as low minerals, vitamins, etc.). Fiber, including wheat, acts to carry bad fats (i.e. cholesterol) out of the body, so when those on a gluten free diet have less fiber to help get rid of the cholesterol, the cholesterol level goes up. Many GF foods are also often high in fat and salt and full of other not so good ingredients to give it a better flavor and that is something that contributes to cholesterol problems. So when you combine intestines that have repaired themselves (can take several months or even years) and finally are able to absorb nutrients (and medicines!) together with a diet that lacks a type of fiber that people eat a lot of, like whole wheat, and instead eat a low fiber and largely rice-based foods (I LOVE rice!), it results in both types of fats now being absorbed and not enough bad/cholesterol is flushed out of the body together with fiber. What I need to do is eat more fiber (would brown rice work?) and less fat. And exercise more (like my husband always tells me ~grin~). I still weigh the same as before my diet change (122 lbs, 5.4 ft). What you should probably do, Nancy, is test for celiac (before you change your diet! I didn’t and after I changed it and felt SOO much better I didn’t want to go back on gluten in order to just take the test) and go on a GF diet if you do have it (symptoms or not, there is damage that will only get worse with age); chances are high that you have it since it is genetic. OR you could try a GF diet for a few months (a few days or weeks is not enough to fully heal the intestines, but probably will make you feel better if you had symptoms) and see if you notice any difference in your cholesterol levels. It is disgraceful that the insurance company turned you down just based on low cholesterol and a supposed risk of cancer (what DON’T you get cancer from anyway?!). Unfortunately, a celiac diagnosis may also cause some trouble with insurance (but I’m not sure since I was never actually diagnosed by a doctor). On the other hand, a negative test does not necessarily mean that you don’t have it, so… only your body can tell you what’s going on. Good luck!
Mike C says
Hrm used to eat a LOT of cereal. used to get a lot of bloody diarrhea.
Dont eat it so much anymore and dont get the diarrhea but within half an hour of eating something with high gluten I get a serious craving to smoke tobacco, brain fog, aching joints, lethargy and depression that I feel ill, and no one believes me because I dont have the obvious sweats etc.
Not sure how to proceed
Tiffany says
I have trouble with all bleached products. Turns out I have gastritis.
Tess says
Since I have figured out what was making me feel so ill, I was able to pin point my symptoms when I consume gluten. Shortly after I eat bread/pasta I would get sharp pains in the middle of my abdomen and I could hear food and liquid moving very loudly through my intestines.. The aches we all very random all over my body but an overwhelming sluggishness and pounding headache always occurred. The next day/ that evening always followed with watery stool, vomiting and sometimes blood would appear in either. The only thing I could compare the feeling to is a bad “red wine hangover”… After months of feeling so horrible, I was then unable to consume any fried foods or alcoholic beverages as it lead to instant sever pain in the middle of my abdomen slightly below the diaphragm (this is where your small intestine starts). The reason for this pain was because with celiac disease, it causes trauma to your small intestine as your immune system attacks it… Just glad to have found out why I have been suffering for so long and greatful that this is a manageable condition… Good luck to all of you.. And if you have ANY uncomfortable symptoms always get te proper testing to make sure it isn’t something more life threatening.. You are in charge of your health! Blessings to all.
Sheryl says
My reaction when accidentally getting contaminated is an immediate head spinning, dizziness, feeling like I am going to pass out. This happens within 1-15 min. of eating. I then get a rapid heart rate, feel really flushed, sometimes begin shaking, followed by extreme fatigue, and sometimes crazy diarrhea. Have found if I immediately begin drinking Green Tea it does help somewhat. Also, as soon as possible, I take OSC pellets (for flu) under tongue on empty stomach, and up the Vitamin C and Immune System support vitamins, as it really is an immune system attack… Tiredness and mild flu like symptoms and irritability/depression will last a few days to a week or two later, but it does take 6 months to completely get gluten out of your system, so I will have random things for awhile. 🙁
megs says
I have been gluten free for about a month and a half, obviously getting some cross contamination a few times and feeling extremely nauseous to the point where I have to be near the toilet for fear of throwing up, although I never do. My throat is where most of the problems occur, feeling tight and like I’m unable to swallow. A couple nights ago I ate a specific gluten free pepperoni stick, which I’ve never had a problem with but this time I microwaved it which makes it really spicy and greasy, a couple hours later I was throwing up, which lasted for hours. I ate some gluten free toast the following day and was fine but I woke up this morning with a stomach ache and a nauseous feeling. I’m not sure if its because I didn’t eat much yesterday but I tried eating more toast this morning and had a hard time getting it down. Has anybody else had an issue with spicy/greasy foods with a newly healing stomach from celiacs? After that episode I’m thinking I should steer clear until my stomach has fully healed.
Pamela says
I have read many of these posts and believe I can add something to the equation. Many say their Gliaden tests come back negative, so I offer you this….please read “The Yeast Connection”, and books like it…as I feel there is one more layer of the onion to peel to discover the root cause of the distress for many of you.
Gluten sensitivity can be one of the symptoms of an overgrowth of candida yeast in the GI system. There are many articles and books on the subject…author Doug Kaufmann’s life’s work is about this problem. He has written many books on the subject, and has a TV program and website called “Know the Cause”. My integrative MD put me on a “4-R” program (Google it), similar to Doug’s and it was like a miracle. I have read about this subject extensively for several years, now, and I offer it to you as another means of figuring out what’s going on….Be Well.
Kari Bidyk says
I am so happy to find this site. I have been glutened and am a wreck; blaring headache for 4 days; stomach extended like 9 months pregnant and rock hard; cannot touch my stomach, cannot lay against my husband gently with it when trying to sleep at night, which i cannot do any way due to tossing and turning and flipping all over due to the stomach pain; the heart burn is on overkill – acid shooting up into my head – my teeth ache from it – my right ear aches from it – i have a stuffy nose and cough and NO i do not have a cold; this is common symptom for me – i feel scared; sad; irritated and hopeless; i have no energy; i cant concentrate – i feel like i am exploding from the inside out – we are way up in canada and i cannot get to a store at this moment so am drinking cup after cup of very warm water with ibuprofen…thank you for letting me share and vent – i feel better now that everyone knows how i am feeling…i feel angry…it was an accidental glutening…and the suffering seems to have no end….tomorrow is day 5….going to lie down and see if can close my eyes in a prone position or it is back to the reclining chair for a second night so i can be upright…grrrrrrrrrrrrrrrrrrrrrrrrr…..gluten is poison to me….i feel like i am being physically beaten up inside without ceasing – i am internally exhausted…sigh..i hate gluten with all that i am…. 🙁 ty for letting me share. being gluten free has given me back my life – that is why am so angry, even a slip up robs my life to such an extent it is just overwhelming.:(
Christine says
I had an endoscopy that showed intestinal inflammation, but negative for celiac. My allergist tested me for food allergies and I was positive for wheat, yeast, soy, milk, eggs, gluten. I have joint stiffness and pain. Sore muscles and lower back pain. I get severe fatigue and feel spacey and unable to think straight for days. Depression also sets in. After being diagnosed, I went on a super strict diet and eliminated all the culprit foods. Not only did I lose 30 pounds, but I was feeling great. I slipped and started to eat the foods again. Initially I didn’t feel so bad, I think because my stomache had healed. But now I feel worse than ever. It seems like the symptoms came back 10 fold. Going back to eating healthy again. It is hard and challenging…but it makes me feel better.
Sasami says
Wow! I react the same exact way you do!
First, my stomach a gut bloat. Then, nausea and brain fog followed by severe headaches. Then muscle pain followed by ‘cold intolerance.’
It usually takes DAYS to a full week for me to recover from a single incident.
My only complaint about it all… Dating? Pish posh! There will be NO eating out. I either need a gluten-free guy or someone more creative and willing to dine in.
Something you might find interesting:
“The Celiac Sprue Association website states that up to 1 in 133 have CD, and only 3% of those have been diagnosed! Other estimates are around 1 in 2000. There is also evidence that people of Irish or Swedish descent have the highest incidence. It is much more prevalent in lighter skinned individuals than in darker skin and in Asians. And many thyroid patients have it.”
-http://www.stopthethyroidmadness.com/celiac/
I was misdiagnosed with thyroid disease as a young teen. I do have Irish, German, and Swedish blood pumping through my veins… very pale. It makes sense to me.
Teresa says
Maureen:
I can’t quite understand why you would even get tested for Celiac Disease if you think it is a “load of crap”. The symptoms people are experiencing are not “common ailments” as you put it. No different than if you have a food allergy or another autoimmune disease, your body reacts adversely to let you know that something is wrong. Once gluten is removed and is strictly kept out of the diet, the symptoms or “common ailments” go away. I hope that you don’t take your diagnosis lightly. It is causing damage to your body that you may not notice right now, but if you continue to ignore it, you will regret it later. You are blessed to have found out early before you had to deal with any of the symptoms that we are all dealing with. Sticking your head in the sand will not change reality.
Maureen 2 says
My doctor recommended I stop eating gluten because of a suspected allergy- so i stopped eating it 2 months ago. I didn’t want to do the celiac test (minor surgery) so eliminating all gluten consumption was the alternative. I have done fairly well with eliminating all gluten and now experience marked reactions with any gluten contamination. With cross-contamination I feel a lesser extent to what I will explain next. These reaction are minor compared to the symptoms I am feeling today…..
Last night on New Years Eve I went out to eat with relatives I was meeting for the 2nd time. We went to a restaurant and got family style meals to share between everyone. I didn’t want to be rude so I ate what everyone else was eating. Big mistake- which i regret. Within an hour I felt achy, headache, nauseated, stomach hurt, and all together awful. I slept for 10 hours (I would have slept longer but had to do something this morning). 17 hours after I have eaten gluten I have a migraine, sinus pain, my eyes are red/itchy/burning, my ears hurt, I am sensitive to sound, I still feel nauseated (feeling in throat like I am going to be throw up), back pain, stomach cramps, dizzy, all over malaise and exhaustion. Additionally, I feel extremely “hung over” but I do not drink alcohol at all- in any capacity. I was hoping to be productive today, but that is not going to happen. I just hope I feel better tomorrow.
UHG. I feel so sick I think I will go back to bed :(. My recliner is just not cutting it.
Alison says
Maureen 2 – such a bummer. Hope you have recovered by now. 🙁
Alison
Maureen 2 says
to the other maureen… who is not me…. you had said this in your post-
“I have been diagnosed with CD (was tested for it because my mom and sister tested positive first). And you know what? I have NO symptoms – no stomaches, headaches, anything from eating gluten. I have eaten it my whole life and I love bread and pasta. I eat it daily with no problems. My sister also ate it her whole life but after being diagnosed (she was tested because she’s anemic) all of a sudden she went on a GF diet and developed adult acne out of nowhere. I don’t get why a GF diet would cause acne – has anyone here had this problem?
Anyway I’m glad I stayed away from the GF crap, it tastes like cardboard. Quite honestly I think Celiac’s disease is a load of crap. All of the symptoms listed here seem to be common ailments.”
One of my best friends has celiac, she has no symptoms… this is a problem as it has caused her to have thyroid problems, and an inability to get pregnant. (apparently there are connections between autoimmune diseases and gluten intolerance)
The only thing i can think of with a GF diet and acne is that happens to be a symptom of a thyroid problem could be something like really dry skin, but oily hair. It is possible that by eating gluten, you were causing really dry skin, when in reality your skin is not as dry as you thought it might be- tough reality- but there are acne treatments that can fix it.
I personally happen to have a dry skin condition unrelated to gluten intake or thyroid health (my thyroids are fine). I can tell you that since I have stopped eating gluten, the hair on my body in general grows in much faster…. I have no idea why this is, but it is fascinating to me…. guess my integumentary system must be healthier. PRETTY SURE that this isn’t a “common ailment”… or really an ailment at all- but just shows me that my body’s defense system against the elements is working better without gluten.
So Maureen (nice name by the way), even though you don’t have symptoms (lucky you), you can end up have MAJOR problems down the road…. and WILL have problems if you do indeed have celiac and you continue to eat gluten. It is your life, and no one can live it for you- but I would listen to your doctors… I bet they know a little but more about how your body functions than you do (unless you are a doctor yourself). Good luck- Pasta and bread and everything with gluten were my favorite foods too…. good thing I figured this out now so that I can be healthier :)! I am a 26 year old, who played a division 1 sport in college as well as majored in Chemistry and Spanish…. unfortunately diagnosis might happen later in your life- it sucks- it is a lifestyle change- but NECESSARY if you want to continue to live a healthy life.
Again, best of luck to you in the new year.
Regina says
I’ve been gf for 9 months. When I eat just little bit I get headaches, exhuastion/depression, gas. If I eat a lot I’ll get stomach cramps and gallbladder pain too. Often the headaches and gas don’t show up until the next morning. I had gallbladder disease pretty bad for several years, doctors kept begging me to have it removed, and ultrasound showed it getting worse. I had a 24 hour attack once and a 36 hour attack once. The pain is excruciating and once I associated it with gluten I was highly motivated to eliminate it from my diet. At one point my gallbladder was so enlarged my right abdomen was larger than my left and constantly tender to the touch, it hurt every time I ate for a year. Now my gallbladder doesn’t cause any problems for me anymore, I forget I have one.
Maureen 2 says
PS- Thank you Allison for your blog… I am grateful to know that I am not the only one who has side effects like this… it makes me realize I am not alone.
Jeanette says
Happy New Year y’all! I am just coming off what I believe to have been a gluten reaction. I’ve not been tested for celiac as I think it would be wasteful. I know something ugly happens when I eat gluten and that reason enough to avoid it. Make that somethings. Three days ago, I ate Progresso Pea Soup and got sick in the night. Next morning, I checked the label and, sure enough, it contains barley flour. I missed it by not reading all the way to the bottom of the ingredients list. I experience : ‘weasels in the gut’; both skeletal and soft tissue pain; sinus pain and phlegm; wheeziness; general weakness. The most distressing aspects are the depression and anxiety along with mental fog. These are just the worst symptoms. What I have read here has helped me see that gluten reactions can present in many forms. In the 4 months that I’ve been cautious about gluten, I have had 2 severe reactions, each time from not reading a label carefully enough. Oddly, if I remain 90 % gluten free, I can have a small amount of pasta or Walkers shortbread occasionally. I am most fortunate that I have a new PC physician and she is very supportive and open to alternative and complementary medicine. There! I feel better having shared, even if it is digitally!
Alison says
Thanks for sharing your reactions everyone… let’s stay GF for 2013!
Alison
Michelle says
I had gluten the other evening as part of a New Year’s celebration… Big mistake. I feel like I’m the blueberry girl in Willy Wonka – my skin feels stretched (even though the only thing that actually bloated was my stomach, I have ended up with puffy, swollen ankles and arthritis-like pain in my joints in the past, before I was gluten free). My ears itch inside – does anyone else have that happen? I think it’s the weirdest of my symptoms… Anyway – I really need to learn that even a little gluten bothers me at this point, because I’ve been generally GF for over a year. I think it builds up in my system or something, because I wasn’t careful over the holidays… now I’m paying… anyone else have this “build up” thing? Thanks!
Nancy says
@maureen2
Acne is usually occurs due to bacteria, if your skin is oily it is a better environment for bacteria(it lays on the skin longer/easier), hormones also play a huge role in acne. If you are having an autoimmune reaction to something and can throw your system-including your hormones out of whack, it’s possible.
@Michelle
I’ve had the itchy ear thing, could be due to swollen lymph glands putting pressure on your ear canal. Also if your having throat/sinus issues due to ingesting gluten, that can affect your ears as well.
Hope you all feel better and find peace in the new year!
Tom says
Within 30 minutes of ingesting gluten, I feel EXTREMELY sleepy, sometimes have stomach gas, abdominal cramping, mental fogginess, irritability, and what I would call a generally depressed mood. Don’t blindly believe those labels- keep a food diary.
Check out (I’m not affiliated) “Now Foods Gluten Digest.”
DeWayne says
Had to double check to make sure this wasn’t a secret restricted woman’s site. Very little male input.
My symptoms are different than most. I don’t know for sure I have been gluttened until 8 to 12 hours later. The symptoms last for 6 to 7 days before I Start to feel better. I now mark my calendar to count off the days till I’m whole again. I just discovered I am a celiac over the last 6 months, after 3 years of doctors and all sorts of test. Wish I could get a refund since they didn’t discover it.
My problem is it attaches my organs with a slight inflammation of my heart and lungs causing shortness of breath, labored heart beats, which causes fatigue. Many times I first know I have been hit because of a pain in the center of my back. I will also experience brain fog, bloating along with gas. As bad as this is, I can at least function now from a hit of hidden gluten. Before I stayed wiped out and could barely function. I am very thankful I finally know what is making me sick. Now I want to help others who have been suffering to find relief.
Hayley says
My reaction is straight away a dry cough, then usually stomach pain, diarrhoea (several hours after), tingling all over my body, shortness of breath and I feel like I might faint. Horrible… does anyone else get a dry cough???
Teresa says
Just a thought about the acne problem. When you have celiac disease your body has been depleted of vitamins and minerals because it was unable to absorb them due to the damage in the small intestine. My daughter had bacne (back acne) very bad and we tried the otc remedies to no avail. I then took her to an allergist who tested her for environmental allergies, that came back with no triggers. He would not test her for food allergies. So I took her to a dermatologist who put her on the washes, antibiotics for a year, creams, etc. She did that for 6 months with absolutely no change in symptoms. I finally went to the pharmacy and bought a multivitamin and it cleared up in 2 weeks and has not come back! That was about 5 years ago. I wish I would have started with that. Good luck!
Matt says
Hello everyone, this website is amazing, for the past year I’ve really been tryin to figure out what’s wrong with me. And it’s only getting worse. I’m 23 years old, almost one year sober from alchohol and believe it or not but I thought getting sober would turn my life around. The past month has been the worst.
My first episode was after eating 4 slices of papa johns pizza. 15 minutes after consuming I felt soo sick, headache, eye sockets hurt, felt feverish, had to lay down, I fell asleep for a couple hours and woke up so congested and had so much phlegm I could barely swallow. Now I’ve never been tested for gluten intolerance or celiac. But now I’m having light episodes almost everyday about 4 months since that first major incident. Pizza always sets it off very noticeabley. However most other times its very light episodes I get very tired eyes.
My joints and whole body just aches all the time it’s ridiculous. I sleep 10-12 hrs every single day. 8 just isn’t enough I can’t ever force myself to get out of bed. I wake up very sore every day. I was diagnosed with IBS 2 months ago right before I separated from the Air Force. My stools are very frequent 3-4 times a day greasy dark most of the time. Or I’m constipated for days at a time. I’ve had bad cystic neck acne that literally appeared overnight 2 years ago and has got alot better after multiple doses of antibiotics. I was also diagnosised with a chronic dermitis around my eyes. Very itchy red scaly. I use kotaconazole whenever it flared back up which has been going on for 3 years. I also have very bad dandruff that nothing can get rid of for 2 years now as well.
Could this all be from gluten. It seems now that maybe my body is just having enough of everything. I’m tired of feeling so crappy all the time. And I know I’m not making these symptoms up. I’m slightly depressed and never motivated. I’m young an almost sober now for a year. My life should be amazing but I feel horrible.
Sorry if I’m out of place here, but this site made me see maybe this one thing, gluten, is what’s been slowly causes all of these problems.
Matt says
Oh I have also noticed as of late, that it seems like my body parts fall asleep fast like my legs or feet or hands. It’s really weird but it’s like I have poor circulation or something. And like 3 times a day when I stand up I get very faint. I don’t know. I need to see a doctor all of these symptoms seem to point right at this disease. I’m just tired of everything.
mpv61 says
Matt,
Definitely get tested for celiac disease! If your general doctor doesn’t know much about it, make sure to see a gastroenterologist to talk about the symptoms and get tested. All the symptoms you’re mentioning have probably been mentioned somewhere in this thread.
troy says
My nose itches as soon as I have gluten and then the rest of my face will start to itch. About an hour or so later I will feel pain in my muscles and feel my joints starting to feel weird. I also start to feel my mood change. Very little gluten and I just get pain in neck, joints, headache, stomach issues, mood change, and my muscles might twitch. The more gluten I have the worse the systems are and I can be down and out for a few days – with my muscles feeling like they are ripping and my legs being very sore and not able to hold me up. Before finding out that I have a gluten issue – I got to the point it was attacking my brain. My muscles were done for and I couldn’t think anymore. I couldn’t trust myself to leave the house. I hated myself and everyone else – I just couldn’t shake the pain and the numbness. My life was gone. So glad they finally found out the issue, but it wasn’t until a divorce – loss of job – and me so wanting to die.
Jamie says
Headache like no other, nausea, bloating, fatige, chills feels like flu. Just had some Titos Vodka tonight second time in a row I had the “Gluten free” vodka and got sick so its not working out for me. Yuck. This is a cool place to share I only call out Titos to save anyone else from what I am feeling at this moment ugh. Had one and half cocktails felt like I had to go right to sleep and just woke up, three hours later sick as a dog reading about Gluten in mid of night. In 27 days into my GF diet and this is my second nasty attack and its from a GF vodka ugh. I feel like Im going to throw up and my head is killing me.