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?
Mother Angelica says
Thank you Alison.
I have definitely changed our eating habits/lifestyle, cleared out the cabinets of all junk food and we are on our way!
kath smith says
Hi Alison thank you for taking the time to add your response to the temperature rise due to allergies.I find it so frustrating when Dr’s seem to not think outside the box.If symptoms don’t “match” to what they have read,then we are wrote off,as have found with my daughter as she doesn’t fit a “typical type” her celiacs test and wheat allergies came back normal yet her body screams differently.they suggested we put her back on wheat and dairy to “see” how she gets on indefinatley….. Hmmm I don’t think so.Does anybody know how one can have such severe symptoms yet have negative results?? Thank you
gailstorm02 says
Dear Alison: I was told by one dr. these test are not accurate and if the diet works stick to it. i have a different dr. now (the other left town) and because the test results were not positive, but the other dr. said I did I have it she goes by test results. I stick to the diet I don’t get sick don’t have symptoms and feel better unless i have gluten then I’m deathly ill. I would stick to the diet it would hurt as long as it is a healthy diet!
Missy says
So as I sit here in pain- I realise those 2 bluemoon beers and chocolate chip cookie were soooooooo not worth it! I have been gluten free for 2 years- we are on vacation so I decided that since I went gluten free for thyroid issues that if I snuck in some gluten it would be ok….wrong. I woke up 6 hours later -threw up everything I ate after the beers…in reverse order???!!! And now while everyone else is out having fun – I am sitting here by myself -not too far from the bathroom…. I am guessing that since going gluten free my body now just rejects any contact with gluten. I can say I will NEVER have any gluten on purpose again!!! It is not worth a day of vacation! At least by finding this site I have some more proof that it was a gluten reaction and hopefully I will feel better tomorrow!!!!
Alison says
Oh Missy,
Sorry for your pain! Many of us have been there. It’s definitely not worth it. I hope you didn’t remain sick for too long.
whit says
Thank you Alison, I will get some, hope not to have to use it, but if I do need it I will let you know how it works!
Nancy says
Does anyone have any experience with genetic testing for Celiac? My dad has celiac and instead of guessing or dealing with false negative blood test, or having syptoms that could be something else I would really like to be tested for the genes. If I don’t have the genes then I don’t have to stay away from gluten. If I do have the gene than it would probably be best to cut out gluten for good. I just wasn’t sure how helpful the genetic testing would be.
Thanks for your help.
Becky says
I wanted to post as well. It is SO helpful to be able to read others experiences. Over the past six years I have been very worried about my health. Mine problems began with ear infections, that would return as soon as the antibiotic were gone. Over a period of three years the doctor kept giving me them, saying we’re going to get it this time. I simply quit going and deal with it. I began having very dry skin,a fluttering feeling in the colon area that is now a raw feeling, stinging eyes/skin, breaking out in red dots and eczema. Burning throat so bad I went twice to see if I had throat cancer, hair loss, vaginal BV, dandruff, now scalp eczema, gum recession, got braces at 40 yrs old, sore bones, terrible muscle spasms even if I turned my neck. I have gone to the doctors SO many time and if everything on the lab work saying you are fine they would say you are FINE, would you like an antidepressant! Of course I’d go on my way with out.I feel like I have aged 30 years in the last 10. Celiac test was negative.I have tried a gluten free diet have made it 3 wks at which time my craving get so bad I cave and begin the pain cycle all over. My Ferritin (iron stores) is always low since 1999. Now I must take vitamin D all the time or that drops too.
@mpv61 says
Becky, have you had your thyroid checked? A few of those symptoms could be caused by that. Have you seen a good dermatologist and showed him/her pictures of every kind of skin problem you’re having?
When you tried the gluten free diet, did your symptoms lessen? If so, you should go off gluten and stay off. Find some decent gluten-free alternatives and don’t let yourself give in to “cravings.”
There’s some doctor out there who can figure out what you have. Keep looking!
Jessica says
@Nancy, I don’t know if there is a standard well recommended gene test, but I have had some DNA testing done by enterolab. My doctor (chironeurologist) here in GA recommended it and likes the test with them over others, although it depends on the person/situation and what you’re looking for. Anyway, it was effective in showing me that I did not have all of the genes for celiac but I do have some, making me highly sensitive to gluten. I was having multiple health problems and cutting gluten out has had a very positive effect: I certainly react to it badly when I accidentally ingest it. From what I’ve read, the chances are quite high for family members to have similar genes in this regard. I’ve actually just tested my daughter with the same test and found her to have the same genes as I. Good luck; I hope that helps.
Jessica says
@Becky,
I have had many similar symptoms as you, with the breakouts and eczema, other skin issues, fluttering feelings in my bowels, terrible muscle spasms, and others. I tested negative for Celiac 10 years ago when this started to get bad (blood test) and it came up negative. Last year I found a new doctor and was tested differently (DNA test by enterolab) and found that, while I don’t have all of the genes that make up celiac, I do have several of the genes which apparently makes me highly sensitive to gluten. I have since had gluten out of my diet for more than a year now and it has made a significant positive difference. When I do accidentally ingest it, I get many of the same symptoms back immediately, and quite severe. I am not sure of your situation, but from my experience, the blood test wasn’t the answer. I would consider taking it out of your diet entirely for at least 3-6 months and seeing how you feel. Good luck
Becky says
I have suspected thyroid for over twenty years. I’m always very cold. And with the low Ferritin and Vitamin D now…. My mother & sister both have low Thyroid.
After during some research I came across something interesting, many people with Thyriod problem have Celiac Disease too!
I have had my hormones tested recently through saliva test and all were below normal. I am in CA and going to see Richard Shames next week. I really hope this brings some answers.He said you can have a Thyroid problem even with normal TSH.
I hope is is not Candida. I was recently doing McCombs plan but like I said by week three I was hungry ALL the time, my craving didn’t get better they got worse. I am back to not Gluten and will try to stick it out long enough to see if enough of my symptoms disappear.
Jessica, did your muscle spasms stop without the gluten alone or did you have to supplement minerals for them to stop? I have twitches under my skin and terrible muscle spasms.
My dad went his entire life with colon problem, constipation, bleeding. He was too afraid to go to the doctors (men). Five years ago he had his colon removed and died from complications. But what interests me is he too had ear problems as a child and had to have some bone removed near his ear. But I wonder now if he has Celiac disease.
Anyway, it is wonderful to be able to compare stories to try and put this all together.
whit says
@ Becky I too am Hypothyroid and from what I have read there is a corelation between gluten intolerance and hypothyroidism. Hang in there and fight. It took me years to find a Dr. that would prescribe Armour for me and a few more years to get enough! Finally, I feel like I’m a normal person (what ever that means at 53 but I certainly have more energy, sleep better and can eat about 1500 calories a day without gaining weight). Next, from what I’ve read, you need to be GF for at least 6 weeks before you really see the results. I can tell you that since being GF, I look better, I have had many fewer colds and did not get Asthma after the cold (as usual) and there is no longer the “mysterious” stomach pains. The GF food is readily available these days and some of it is not bad. When I started being GF four years ago, I just gave up any carb but we can have pasta, crackers and cookies (Mary’s Gone crackers are my favorite). You can and will feel better!
Lynn says
@Becky, I would like to know how your appointment with Dr. Shames goes. I am thinking of seeing him. I live near San Mateo. Please write a review of your experience with him on Yelp, or at least post it here!!!
I have Hashimoto’s and have been on Synthroid for 15 years. I’ve eaten gluten all my life with no known problems until this past year, when I inexplicably began getting bad gas, bloating, reflux, and loose stools. I thought it was lactose intolerance getting worse, but it would happen when I didn’t even have any dairy or dairy derivatives. Now I realize it was gluten doing it to me.
About a year ago, I realize now in retrospect that I must have been having an auto-immune attack. I developed a painful capsulitis inflammation in both big toes (revealed on an MRI). Then I began developing adhesive capsulitis in one of my shoulders! My body felt stiff, as if I was filled with glue. I began to wonder what the hell was happening to me. It was very scary. I believe that gluten was contributing to all of this. Dr. Langer told me outright: if you have an auto-immune disease, you should not eat gluten because it could make things worse!
I started seeing Dr. Langer in Berkeley in January. I’ve only seen him once so I don’t have a strong opinion of him yet. I am hoping he will switch me from Synthroid to Natural Dessicated Thyroid, because I think some of my problem is also that Synthroid isn’t doing the job for me anymore.
My Celiac test was negative, but my IgA is very low. As I understand it, a low IgA will interfere with accurate Celiac test results — it will never show the true state of things. So I got the gene test done through Entero Lab. And guess what? I have BOTH genes: the one for Celiac and the one for gluten sensitivity!!! The people at Entero Lab told me that this is a very strong indicator that I should stay away from gluten. It isn’t as strong an “answer” as a positive Celiac test….but because of my low IgA, no Celiac test will ever show correct results. The gene test shows what’s in your genes, no way to fake it or have a false result. I will probably have my kids tested, too.
I have not done a gluten challenge yet. I hope that the worst that happens is gas and bloating. I feel very sorry for those of you who have vomiting and diarrhea and joint aches. And the story about the hospitalization, wow scary stuff!!!!
Anyway, BECKY, please report back about Dr. Shames!!! If you want you can email me at: canyonheathmom@yahoo.com.
Becky says
Jessica,
Did your muscle spasms stop without the gluten alone or did you have to supplement minerals for them to stop? I have twitches under my skin and terrible muscle spasms.
Jessica says
@Becky,
I was having muscle spasms and severe, chronic pain throughout my neck and back before finding my new doctor. Along with testing for gluten, we did also do other tests to get a comprehensive view of what was going on with my body. I did have some other issues to clear up (h pylori and yeast) but the gluten seemed to be the main culprit for the inflammation, pain, and spasms in my neck/back. The doctor put me on some apex supplements based on the test results and what my body was showing as deficiencies, but no drugs. As the year passed, I found it amazing that my reaction to gluten became more severe the longer I had remained gluten free (I accidentally ingested it a few times over the year as I was learning). When I do accidentally ingest it, one of the first reactions I notice is immediate inflammation in my neck/back and tons of pain. So, I’m not sure if you’d need other supplements to address any deficiencies or issues, but simply taking gluten out may have a huge impact. You’d have to look into what’s going on to know more; sorry. I hope you figure it out!
Becky says
Did you remove ALL grains to be Gluten free? The only grains I am having currently is 100% Brown Rice. Colon area feels much better. I seem to be doing okay. But the muscle spasms mostly in my hands continue. I am on McCombs Plan for Candida (yeast) already.
Also can I ask if you were taking a lot of antibiotics before all this?
Greatly appreciated!
Becky
Becky says
Question for everyone,
Since realizing your cannot eat gluten, are you still eat the store bought “Gluten Free” foods, with out symptoms?
Thank you
Dr. Georgietta Gdovin says
I am an optometrist. 2 years ago I was examining a patient’s eyes and during the initial history she told me she cured asthma and lupus. At this point in my life I was 40 PD overweight, I had reflux disease so bad that I was whispering to patients, I had asthma since age 3 maximally medicated , and acne rosacea that a dermatologist could not manage.
With her guidance I have been off all meds and lost 40 PDs with a gluten free diet, OPC and ORAC liquid supplements, digestive enzymes, and Aloe to drink to maintain my digestive system.
When I eat gluten, which is only accidental, I take a benedryl and mucinex to keep my airway open and drink aloe and water. I get these supplements from Nutrimetrix . I am a new person. I think gluten is linked to MS autism reflux disease etc . I just found a new gluten free restaurant and gormet italian bakery shop, the best bakery products ever! It is called Grandma’s GrottoGrandma’s Grotto, 986 Easton Road, Horsham, PA 19044. They have a mail order business, try them, you will be sooooo happy!
@mpv61 says
I have celiac disease. I eat store-bought items marked as gluten-free as well as many items that just don’t have any gluten ingredients, although they may be processed in the same place as gluten ingredients. I’ve only been glutened once so far, and that was from a Starbucks regular frappacino (probably cross-contaminated from a light one; I didn’t ask for a clean blender).
I make sure to buy my GF flours from places that are GF-only to try to avoid cross-contamination problems there.
Jessica says
@Becky,
I did not cut out all grains; as I started to explore more with the plethora of gluten free flours (almond, rice, coconut, quinoa, chia, millet, etc). While I was on the anti-yeast diet, I cut out corn in addition to gluten-grains. I actually went back to eating corn but have since eliminated it again. I did another elimination diet and found that corn was causing some issues; broke out in a rash when I did eat it again after 3 weeks without. As far as antibiotics go; hadn’t been on antibiotics on quite a long time. If you have more questions for me specifically, feel free to contact me directly at jessica_otieno@yahoo.com. Hope that helps though!
gailstorm02 says
Been reading where rice from the Mississippi delta is high in inorganic arsenic. Most of the gluten free products I buy have a lot of rice flour. Maybe this is why some of us aren”t getting better. Sure is scary!!!!
Michelle says
Happy to find this site. I was glutened just Saturday night and am wondering how long this will last! It started with the bloating and the diarrhea; then the stomache PAIN/cramping in waves. I felt like I wanted to vomit…but it didn’t happen. The pain is lingering and the extreme fatiuge and brain fog are there as well. I was diagnosed with Celiac last fall and have been gluten free for about 6 months. This is my first full glutened experience. Any ideas when it will stop?! Tips for getting through?!
chlsy11 says
Oh this is so similar to how I feel! Yesterday I was accidentally ‘glutened’ at a restaurant. About thirty minutes after eating I started getting a headache, which got worse into the night, and is still hanging on today. The nausea and bloating set in about an hour after eating. I ran to the bathroom and vomited as soon as I walked through the door. Then I fell asleep as soon as my head hit the pillow. Today my body aches. I’m also spacey and so tired. All from a little gluten! I have to be so careful when eating out and explain to the servers that I get very sick. A lot of people don’t understand how important it is that I don’t consume any at all! Even a little bit makes me sick.
Lisa says
I had multiple health issues that got increasingly worse with every year and month to the point that it was unbearable. I constantly had either constipation or diarrhea when I had to go at least 10 times per day. I suffered horrible acid reflux and went though bottle after bottle of Mylanta. For many, many years, on and off, I had a red, swollen, scaly, itchy rash around my nose and mouth, especially in the corner of my mouth; a dozen doctors couldn’t help me. I had headaches and migraines and terrible dizziness and tiredness. I started to suspect that I was celiac and changed my diet. I took huge doses of vitamin B complex since I was suspecting that my mouth rash was a vitamin deficiency from being unable to absorb nutrients. Within days my problems were beginning to disappear one by one and by the time I had my doctors appointment a few weeks later I was feeling a lot better and my blood test came back negative. That was over two years ago and I’m not willing to go back on gluten just to get a potential positive test and a diagnosis, but I do often wonder if I really am celiac since I never got a positive test. These days if I get glutened I get acid reflux the same day and constipation for about a week. I sometimes get bad headaches and even migraines and wonder if I got glutened without knowing it. I’m not the strictest of dieters and occasionally take risks that I shouldn’t. A few days ago I caved in and ate Chinese take-out and the next day got a horrific migraine. A couple of days later I all of a sudden felt incredibly exhausted and could hardly stay awake at work and by the time I got home I felt worse than I had felt in ages with headaches, acid reflux, exhaustion, and an overwhelming feeling of being terribly ill. Strangely, no stomach issues, though. Perhaps my symptoms are changing over time and the most common symptom, stomach issues, are being replaced by the headache and fatigue. I also avoid dairy now since it seems to cause terrible joint pain. I think my times of eating out are soon gone because every time I do (even when I don’t cheat), I get sick. 🙁
Nancy says
Okay, so I started eating wheat stuff pretty heavy on Friday the 2nd, ate a lot each day until Tuesday night and then had bloodwork drawn on wed the 7th. My Dr. is testing me for celiac, thyroid disease and lupus. Hopefully I ate enough wheat to cause a reaction if I am celiac, since most people react to it right away I figured that I would be good with 5 days of wheat. If the celiac comes up negative I may have myself tested for the gene since my dad has been diagnosed via biopsy. If it is possible that I can develop it I would like to stay away from wheat as much as I can. I will have the results on April the 3rd and waiting quite unpatiently until then!
Sara says
I am so glad that I came across this post. I was diagnosed with thyroiditis and autoimmune IC (a bladder condition associated with gluten/wheat allergies) back in July of 2011. I finally went gf in Sept after resisting. I didn’t realize how sick I’d been until I started getting better. Well last night I decided it was ok to eat my sons pizza crust. I think I was curious if the gf was really why I’ve been getting better. Well needless to say I am sick as a dog today. I woke up feeling awful. My stomach is distended and painfully bloated, my torso is covered in hives, everything feels stiff, my nose in running, I keep burping, and I’m nauseous. This is horrible. I am never doing that again. I haven’t eaten anything all day today and it’s almost 6pm because I am so nauseous. Also because I have IC my bladder is now inflamed and I have been having to pee every 20 minutes or so since I got up this morning. I’m worried that I might get dehydrated so I’m forcing water down. I have never been tested for Celiac although my doctor thinks I likely am. Since I was already gf for the IC testing for Celiac would have been useless. Does anyone have any suggestions for how I can feel better today? Do I need to just wait this out?
Angela says
I get the flu like symptoms. They can come in as little as an hour and last for about 24 to 48 hours. I have also noticed pain under my arms. In the axial region. I thought I was having a heart attack when this began. I think its my lymph nodes reacting to the invasion of gluten. No energy what so ever. Bloating sometimes with no relief and diarrhea on other occasions. I get really depressed too. That one is big. Chills that feel like a fever but with no fever. I find it hard to eat after being affected by gluten. My throat seems swollen and I find that most of my food I had eaten is not digested when it comes back out. TMI sorry 🙂 I feel for everyone who suffers from this.. it has been a difficult experience. And a foggy brain.. I think that is from the lack of nutrients being absorbed… that sluggish flu feeling.. ugh
Becky says
Anyone else besides Angels experience swollen lymph nodes/ Makes me wonder cause both my daughters have complained of this.
Angela says
I also suffer from Hypothyroidism. It has been a very fun journey to say the least. I have to say I have learned so much about my body and what we put in it and how it can effect our ability to live.. better yet thrive. You have to be so careful about what you eat out there now. With all the GMO happening, I think that has something to do with the increase in allergies. I did not have this problem as a child. My mother would make wheat bread all the time.. none of these symptoms. Now if I ingest it I swell inside and out. My brother has always had asthma. The doc asked him if anyone else had allergies and he said no. The doc said they just have not discovered them yet. I feel its true. Your body is always changing to adapt. If they are changing our food with genetic engineering then it would make sense that our bodies would reject it. Just some of my soap box theories 🙂 My lymph nodes act out quickly too. Actually went to the hospital on many occasions thinking I was having a heart attack. My heart would palpitate and it would make them think something was happening as well. It was gluten and dairy all the time.
Elke says
My kids all had different symptoms (eldest – tummy, followed cumulatively by leg and then also by headaches; 2nd child – 3 months of diarrhoea but no parasites, and he’s turned out to be lactose intolerant like his father; and 3rd child – damaged enamel, somewhat odd stool and small white pimples on his arms like I had as a child). I was “told off†by a pediatrician for putting my children on a gluten free diet, because it’s “expensive, inconvenient and then they would not know if they indeed had an issue with gluten;†he didn’t even ask me why my husband & I had chosen to do so. This conventional medical standpoint, that requires confirmation by a biopsy of the small intestine before EVER going gluten free, is somewhat like walking across a street on a green light despite seeing a car heading through red: is it better to be “right†in terms of conventional diagnostic practices, or to be well? I would rather not compromise their physical and neurological development when evidence and family history suggests that gluten is a problem. My children may well decide to challenge the diet at some point. They will be well-placed to gauge and to express their reactions at that time.
I am personally a rubber-stamped Celiac, as are a few others in my direct/extended family, and never cheat on my diet. Even people who have no apparent reaction or are completely asymptomatic have been shown to do damage to their ever-important villi. Becky – PS: foods labelled “gluten free†in Canada and many other places can actually have 20 parts per million of gluten, so if you are noticing a reaction or do not feel well, you may wish to eliminate packaged foods or at least try to seek out dedicated gluten free production facilities (with the hope that their source materials are uncontaminated).
Corlissa says
My reactions aren’t that extreme yet. I am self-diagnosed gluten and lactose intolerant. My doctor says its IBS since my barium swallow test shows spasming and I have a history of anemia.
It started with years of being bloated, never being able to suck in my gut. My metabolism crashed and I gained an extreme amount of weight that I couldnt lose. Next symptom to show was faint nausea after eating, then I started getting stomach aches and cramping. Shortly after noticing more of these symptoms, I connected that I often get gas about 20 to 30 minutes after consuming gluten or dairy products. I have been gluten free for a few months now, but not completely lactose or dairy free yet which leads to confusing food reactions. The longer I am on a gluten-free diet the more I see reactions when I screw up. It took about 2 months GF to get past the extreme fatigue and need to sleep 10 or more hours a night so I am not going back. That said- because its not celiacs or extreme- I am sloppy about ingredients like modified starches and hydrolyzed products since there is some discussion over ‘are they’ or ‘arent they’ gluten.
I am not convinced that my intolerances are limited to milk and gluten since I react the odd time when both dairy and gluten are excluded. And its sometimes controled foods that I make at home, completely from scratch so I know the ingredients.
My reactions to gluten are: headaches, randomly- extreme pain right behind my eyes that never progresses to a full migrain. Anxiety or depression. Burning and red face. I get really sweaty, have to urinate more frequently, and this usually leads to mild dehydration. (I actually spent a couple years trying to find the cause of my chronic dehydration before I started to suspect my diet.) Stomach pain and cramping. Sometimes mild nausea. Need to sleep sometimes after eating. Brain fog or the sensation of being on drugs. Inability to walk in a straight line. I only experience constipation if its combined with not drinking enough fluids in a day, something I am hyper-vigilent about since I have/had chronic dehydration issues.
BeckyK says
I am stillworking through all of my issues, but so far I’ve been diagnosed with several food allergies, IBS, and gluten intolerant. When I get glutened I immeduately feel dizzy-ish (not like the room is spinning, but sort of like I’m looking in a fun-house mirror -a bit warbly!). Then within a few hours I get really crampy and gurgly in my gut. For about 4 days I have these intestinal symptoms plus soft stools (WAY more than usual), and frequent urination (5 time per hour). Thanks for starting this discussion – its nice to compare with others.
Teresa says
Becky…Swollen lymph nodes were the first symptom that alerted me that something was wrong 15 years ago. I scheduled an appointment with my doctor and by the time I went to my appointment 2 weeks later my skin on my lower back had broken out in blisters. My doctor looked at them and told me I had shingles. He gave me medicine, which I took with no relief. I kept getting the blisters and they itched like crazy. I ended up going to another doctor a while later and got the same diagnosis from her. I knew the diagnosis was incorrect because the medicine never helped. I suffered for 13 years before finally going to the right doctor. As a child I had swollen lymph nodes under my ears, they would swell to the size of grapes and they were very tender. When I scheduled the appointment with my doctor for swollen lymph nodes, it was different. The lymph nodes in my groin, right where your legs meet your pelvis were swollen and aching. It was pretty painful. I have been gluten free for approx. 2 years now and no longer get swollen glands. If I get an accidental glutening sometimes they will swell up.
Teresa says
I noticed a lot of people talking about frequent urination after being glutened. Is that a reaction to gluten? When I told my doctor about frequent urination we traced it back to MSG. Before I cut out MSG or if I got some unknowingly, as soon as I did I would have to pee about every 5 minutes with a full bladder and that would go on for at least an hour.
Becky says
Teresa,
What other symptoms did you have before going Gluten free? Any problems with teeth, hair, muscles?
BeckyK says
For several years now I’ve had some boutd of frequent urination (prior to going gf). I’d pee constantly & have VERY sudden urges! My reg. Dr. called it ‘bladder spasms’ and gave me a trial (7 day) pack of Detrol. It went away each time. I now wonder if these had been times when I’d been particularly heavy handed with the gluten!
Dave says
I am self-diagnosed. After years of doctor’s visits for fatigue, sinus problems, inability to build muscle mass, and even psychiatric evaluation ending with a bi-polar diagnosis, I began a Paleo diet as last-ditch attempt to eliminate any allergies to wheat or dairy. Within 2 weeks I was a different person. I have narrowed down severe fatigue depression, and acute sinus problems to dairy. Gluten causes me recurring flu-like symptoms and inflammation which leads to TMJ-like jaw popping and awful bone pain.(both dissapear when I’m gluten free and return quickly if I eat it) In addition I become very irritable and sensitive to sound. I am slowly recovering from my last gluten mistake – I’m in my 4th day of flu-like symptoms (brain fog, migraine headache, and fatigue).
Penney says
I am not celiac but have a gluten intolerance and I find that after eating something with gluten i immediately get really bloated. I have a smaller frame (weigh around 110 lbs 5’4) and my stomach goes from being flat to looking 5 months pregnant, sometimes a pair of jeans worn prior will not fit the same day after the incident. The bloating lasts about 2 days afterwards. I also cannot go to the washroom afterwards for a few days, which makes the bloating worse. I get anxiety and depression. I feel as though I am in a haze afterwards. For some reason I feel as though if I eat more gluten when I accidentally do, the pain will go away. I get cramps too and I feel as though the insides of my lower abdomen are pulling and twisting. My skin also breaks out within the week of eating gluten. Does anyone know of any remedies to relieve the bloating afterwards for in the future because I find it unbearable ?? So far cardio is all that works, but only minimally.
whit says
@ Penny. This is not a cure, but if I feel like I’ve accidently been “glutened” I take a lot of a probiotic product, what ever I have in the house. I find that the probiotic keeps my intestine from shutting down totally. Before I had a diagnosis, I would take normal stomach medicine (Rolaids to Prilosec) but they all slow the digestive system down. The probiotic seems to act as a laxative and speeds up my intestinal track, ridding it of the gluten that is causing all the symptoms. Wouldn’t it be nice if there was a “gluten-aid” like there is lactaid?
Bonnie says
I instantly get horrible bloating, then a “burning-aching” feeling in my colon. Does anyone else get this? It gets inflamed and I can barely even sit down! I also have IBS. I was diagnosed with a gluten allergy when i was 6- among many other allergies.
My other symptoms are heartburn, nausea, migraine headache and swelling/aching in my joints and muscles. In most cases, I get so nausea and acid reflux that I must lay down. Although sometimes I won’t feel this last reaction until the next day. By the next day, my body hurts so bad it’s like I’ve been hit by a terrible flu bug! I can’t even get out of bed when this happens….I have facial/jaw pain that Advil won’t even take fully away. My tonsils will swell up and my lymph nodes also. I also have constipation for weeks, and my skin breaks out with acne (that includes boils)!
It’s terrible! Even a single bite of gluten- or a trace amount of it does this; like Alison said! I’m so sorry to all my fellow anti-glutens who also deal with similar reactions. 🙁
Rebecca says
First, thank you for this sight, and to all the people sharing their experiences. I went to my doctor two years ago, broke down in her office (which is wholly inappropriate behavior where I live, in Switzerland!) and asked to go on anti-depressants. Since moving to Switzerland two years before, I was an emotional wreck: unbelievable mood swings (mostly down), so unhappy (but unable to verbalize why), exhausted all the time… and with two small boys at home with me, it felt unbearable. I complained that I always felt ‘bloated’ and she gave me a disbelieving look. (I’m 5’8″ and 112 lbs and yes, I WAS bloated). She gave me a blood test and found I was iron anemic and had low B12. There was NO discussion about WHY I might be anemic! I had an iron transfusion (and was allergic to it; that was fun) along with a B12 shot. I felt a bit better and got on with life. 2 years later, after roller coaster depression and exhaustion, I found a new doctor who also discovered I was anemic: my iron count was 4. Yes, 4. But all of my other numbers were fine. She prescribed another round of iron transfusion (the kind I am not allergic to) and, clever woman, decided to find out WHY I might be anemic. Two blood tests later, she called me to confirm Celiac disease.
I am just starting to eat GF. I made pancakes this morning with SCHAR flour, which is made from corn, and felt like someone dropped a lead balloon in my stomach. I’ve had a gurgly bloated gut all day. Now I’m wondering if my issues don’t end with gluten.
I know that this is the start of a serious adventure!
CoriF says
First, Rebecca and others, you need to keep in mind that Celiacs is NOT an ‘allergy to wheat’. Its actually an autoimmune disease. Avoiding all gluten and cross-reactors is the only treatment for it at this time. I think that is the mind set you have to have starting out. You may react to just about everything when you start because your body is trying to adjust to the changes. Often times doctors will start you on exclusion diets that cut every possible food you might react to, after a period you slowly introduce foods and test your reaction. You will get much better feedback from your body this way than cutting one thing out at a time.
This is the best video I have every found to explain Celiacs and Gluten-sensitivity:
http://www.youtube.com/watch?v=SX2rTfIdpNc&feature=share&noredirect=1
gailstorm02 says
I have been gluten free 17 months now and have found that I can not eat dairy or any corn any thing that I do not get gluten like reaction. Of course I went better then 20 years not Dx. Still healing from the damage but don’t look to ever eat gluten, dairy or corn again.
@mpv61 says
To Rebecca: Congratulations on getting a diagnosis — that’s a start! As for the corn, a lot of people find that there are other things they can’t digest well due to the damage to their small intestines. Dairy is often a problem, for example. It may be that you’ll be able to eat corn eventually, but avoid it (and anything else that troubles your system) for now at least. You are on your way to better health, and thank goodness for that new doctor!!
whit says
@gailstorm & mpv61…I’ve been GF for almost 4 years! And yellow corn used to bother me, but now I have no problems at all with it. I just remembered when reading your posts about my stomach hurting sometimes when I had corn chips, unfortunately now I can eat as many as I want!
Teresa says
Becky…Sorry for the delay in replying. I always had dental problems. While my sisters had beautiful teeth, even my baby teeth went bad. As I got older I would be even more particular about my teeth, brushing them 3 times a day, flossing every time after I ate, using listerine at least a few times a day and going to the dentist every 6 months for cleanings. It still did not make a difference. My gums were receding and I had cavities every time I went for a cleaning. I checked with my dentist to make sure I was flossing properly and brushing properly. Nothing mattered. The last few years before going gluten free, I was getting canker sores mostly on my tongue – all the time. The dentist suggested that I try a rinse. Nothing helped! Shortly after going gluten free and I also stopped using fluoride with the recommendation of my good doctor, my dental problems ceased! My canker sores were gone! When I went to the dentist after that, they commented on how everything was looking excellent. I told my dentist everything needed to be gluten free and fluoride free too. They were surprised but they saw the results too.
I never had any issues with my hair but I have read that if you have celiac or DH and are still consuming it, it can cause Alopecia or alopecia areata, which is hair loss either entirely or patchy and it can be anywhere on your body.
As for my muscles, I was always very physically fit, played a lot of softball, worked out at home 3-4 days per week and was very active. I always had great muscle tone, until about 5 years before going gluten free. I couldn’t build muscle to save my life. I’d go to the gym, work out at home and walk on the treadmill and kept gaining weight and losing muscle strength. I thought I was eating right (healthy according to the food pyramid). Shortly after going gluten free I was dropping weight and able to build muscle again.
I also had neck, back and shoulder pain, numbing pain in my left leg and sometimes in my arms, bone pain (I thought I had cancer or something-it’s not normal for your bones to hurt!), frequent urination, chronic fatigue, oh and I am short too (which can be an effect from gluten), every time I ate my nose ran (which my doctor says is a symptom from eating something that your body cannot handle and the reason it runs is because it is trying to get rid of it), painful periods, irritability, vitamin K deficiency, anemia and brain fog. There’s probably more, but they are gone now so it’s hard to remember them all.
What kinds of things are you experiencing?
Cassandra says
The blisters on my hands are the indicator and can occur within an hour (wheat and dairy) or delayed a day or two with other intolerances. Wheat and dairy are the ones that gives me the WORST symptoms. Eye twitches, BAD DH blisters (I mean bad, even on my scalp) and I drop weight. Im only 110 lbs @ five foot nine and I CANNOT afford to lose more. Sometimes I cry about it.(I do not weigh myself it’s terrifying) constipation is a BIG problem and the number one bad reaction is the anxiety and emotional distress.
cindy davies says
I am self diagnosed and have been GF for 2 years, having suffered from horrendous diarrhoea, nausea, stomach pain and terrible acne for many years. The symptoms worsened 4 years ago and included vomiting and blackouts. On 3 occasions I have had a reaction that included terrible itching, heart racing, pounding headache and the inability to walk in a straight line. My problem is that no one believes that being coeliac can cause blackouts. I had a brain haemorrhage 4 years ago and have regular scans which are clear, have also had heart monitors and epilepsy tests but again all were clear. Does anyone else suffer blackouts
Sandra says
Within 20-40 minutes of eating Gluten my stomach starts churning loudly and I get stabbing gas pains, usually followed by loose stools or diarrhea. I get sleepy and usually have a headache, and feel sluggish, and generally just want to go to bed for the rest of the day.
I’m new to being Gluten Free, so it’s taking time to figure out exactly what has gluten in it and what doesn’t. And I sure can tell when I’ve missed something and it has gluten in it 🙁
Alison says
Sandra, it does get easier, but it’s no fun to have a reaction!