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?
Tbaldwin says
Once I had only wine at a restaurant and was dosed with gluten, granted it was a brewery and I ordered in the bar, so maybe a drop of beer splashed in my wine. I woke up shivering and with a high fever in the middle of the night, and ended up with a massive breast infection. I also had major pain in my joints and muscles, I was in bed for 2 days, not fun with 2 little kids to watch. Since then, I’ve noticed the joint and muscle pain, along with chills every time I’m accidentally dosed. I believe in taking responsibility for what I consume. I bring food to people’s houses when we are invited for dinner and always investigate a restaurant before eating there. Just because a restaurant has a gluten free menu, doesn’t mean I wont get sick. I also don’t eat MSG, HFCS, or many other processed foods. I react the same to rice as I do to gluten. I just wish someone would make a good gluten free beer… the biggest thing I miss is Stone Brewery’s beers. The substitutes are just not up to par.
Becky says
Dewayne,
I Hope you see this message. When you say it took three years of doctors to find your gluten problem are you celiac or sensitive and how did they find it finally.
My symptoms sound a lot like yours. However my celiac test came up negative but I know they can be false. I now worry I may be in tolerant to other things such as corn.
Anyway I was just wondering how they came to find out it was gluten causing your problems?
KYDude says
When I eat it, I itch. My legs itch continually after eating it as if my legs are afflicted by athlete’s foot (athlete’s leg?). It is from below the knee to my ankles. Imagine an itch that will only subside when you afflict pain the area. Then sometime later, it returns witha vengeance.
Donna says
To the previous commenter. Just to tell you that is what happens to me. Just be glad it is not on your face like mine is. The sores are right out front for every one to see. There is always something to be thankful for. Hang in there.
Michelle says
I am always good about checking labels to make sure good is gluten free. There was an Amy’s pizza in the freezer, I always eat Amy’s gf pizza. I made that to eat around noon today. Around 2pm I felt very nauseated. From there, I think I vomited about 30 times with also diarrhea. I literally thought I was going to die. I was so cold and had goosebumps on my body, yet I was covered in sweat. My hair was soaking wet. I could barely move and this went on for hours. My brother almost called an ambulance. I also agreed to it too, it was such a horrible feeling. I almost passed out a few times too. After sleeping on the bathroom floor for several hours, I was able to stand up with help. Turns out the pizza I are was only vegan, not gluten free. I couldn’t believe it! I thought for sure I had food poisoning, but it was gluten! The same experience happened several months ago, but I thought it was food poisoning from a restaurant bc I never had the symptoms of vomiting or almost passing out with the sweating and shivering sensations. I am finally in bed now and have been drinking plenty of water to stay hydrated, but I still don’t feel the best. At least I moved off the floor! I hate gluten!!! When ppl always say they feel sorry for me not being able to eat things, I don’t care bc it is not worth it. I don’t think I’ll ever feel the same way even about gf pizza again!
Michelle says
Food, not good.. Sorry auto spell!
Mimi says
Oh girls, I am SO HAPPY I’ve found this website!!!
For YEARS I’ve had severe menstrual cramps (to the point of fainting), frequent nosebleeds, eczema, blurry vision, pain during intercourse, horrible gas, bloating and also sleepiness and a totally fuzzy brain fog (once I fell asleep on the lecture because I just couldn’t keep my eyes open), loose stools, sometimes leg cramps and etc. etc., all listed here.
I’ve done some research recently and connected the dots (they were quite IN DA FACE :D) and well yeah, it seems I am gluten intolerant – so 2 days ago I started my GF diet – AND broke it already today as my colleagues had some buns for everyone and I didn’t want to be rude, so I took one and ate 1/2 of it. Bleh, bad idea. Immediate tummy bloating and I had to go to the toilet. This taught me a lesson and I’m now GF for real!
Hopefully as my GF lifestyle progresses, I will get rid of this intercourse pain as well (endometriosis, hello), it’s not fair to my boyfriend. :/ Also these nosebleeds….before going GF, I’ve been happily eating various buns here and there and in one day I’ve had SIX nosebleeds. I thought it’s because of the dry winter air, but now I see it was gluten.
Sigh. But thank you everyone for BEING and this web for EXISTING. Such a relief I’m not the only one – and also SUCH a relief to finally know what has been causing me all these problems for all those years!
Ane says
Mimi you may be interested in this study called “Gluten-free diet: a new strategy for management of painful endometriosis related symptoms?” http://www.ncbi.nlm.nih.gov/pubmed/23334113
I hope you start feeling better quickly.
Rossana says
Welcome to the club Mimi!
Just a piece of advice: Don’t neglect your health out of “politeness”. Don’t think you are being rude when you say no to gluten-containing food! You are just starting and many people will think you are crazy and it’s all in your head… but the truth is, you know your own body better than anyone else (even the doctors who sometimes come up with negative tests). Just do what feels right for you.
Listen to your body.
Happy healing!
Kari Bidyk says
i so love this site! i had posted earlier and am amazed…i have the DH skin rash on my right side badly AND i have been itching all over my body for days! to the point i am using coat hangers to scratch the areas on my back i can’t reach… altho i’m not naseaus this time but am very exhausted – i just read in someone’s post here that they are glutened when they eat rice – i have been hungry and cold and have been eating rice because i thot it was gf…gahhhhhhhhhhhhhh….that would explain my fatigue and the rash which is just awful and the itching!!! is gingerale gluten free? i have been drinking that too – i was desperately searching for why i would have the DH outbreak again….which takes soooo long to go away….well…learning as we go along here….soon i will be like way thin because i am finding it easier just to not eat. 🙁 is very nice to meet all of you. thank you for posting all that you do – it helps me so much.
CAFLY says
Kari: Rice IS gluten free.
Gluten is tricky and everyone’s body is different. Many people, myself included, find that it takes weeks to get the effects of gluten totally out of our system.
As for things like gingerale and pop. It really depends on the ingredient list and your tolerance. I find sugar irritates my system in general so I try to avoid pop. People with severe gluten issues, ie. inability to tolerate even 20ppm of gluten can have trouble with the coloring or caramel coloring in pop. I have found that cutting out the gluten unmasked a host of other food sensitivities that I couldnt notice because of the gluten related inflammation.
Selbozz says
Something that I have been learning is that other foods cause some of the same inflammation issues with me… rice and sugar being two of them. It just seems that it is rarely only one thing that causes food sensitivities or allergies. I switched to organic as much as possible and cut out a few of the other foods that I suspected were causing me problems and it seems to be helping.
Nancy says
Rice with flavoring ex. “chicken flavored rice” is usually NOT gluten free. The seasoning has gluten in it. To be absolutely sure with rice you should buy the plain unflavored or look for rice that has the GF on the box. Zattaran’s has a GF rice. There are a lot of flavorings and seasonings that have gluten in them and sometimes it’s hard to spot. Best of to buy things that state they are GF.
Kari says
Thank you Cafly and Nancy for your responses, I appreciate your taking the time to help me. I am very pleased to hear that rice is gluten free and now I can purchase Zattaran’s. I think it might be the gingerale, I am going to call the manufacturer tomorrow and ask. I am kind of hoping it contains gluten because then I could more easily identify the cause of this DH outbreak, like an “aha” moment 🙂 Thank you again – have a wonderful day! kari
Eugenia says
I have been tested many times for celiac and wheat allergy but nothing comes of either one. Within 24 to 72 hours after eating gluten my right leg will hurt like severe shin splints. Even a finger tip touch is too much. I also have psoriasis on the entire right palm, beginning on wrist, in and behing right ear and between toes on both feet and IBS. I am at a loss.
Eugenia says
‘and behing right’ should have read and behind right.
Becky says
To Eugenia,
By any chance have your symptoms accured after taking antibiotics?
I am trying to figure out if antibiotic played a role in this. I was given them for three year for ear infections. We know now that is not a treatment that works for ear infections.
I was tested for Celiac, negative.
I now realize if I eat grains of ANY kind, my large intestine gets very painful.I have symptoms through out my entire body. For everyone help. PLEASE visit the site Gluten Free Society. He explain that when we react to Gluten, we react to ALL grains including rice. Diary ALSO contains Gluten. I cannot have sugar either, I guess due to bacterial overgrowth.
I am waiting for Mcombs Candidia Plan and will do that for a min of four months. Staying off all the above food is very hard. When I cave my symptoms come right back.
Chris says
Yesterday I had what was supposed to be gluten free loaf and am sick as a dog. Alt.hot cold, severe abdominal pain, breathing issues,tight tingly throat, loose stools, severe nausea, inability to sleep, joint pain, left side chest pain (feels like a heart attack). Symptoms will last for days or weeks. Last time it was this bad was the night before my wedding when they cooked my gluten free pasta in the same water as the regular kind! I really dislike eating out, I wish my family would get it that I would rather make a meal for them than eat out, but they don’t want to make work for me. It was interesting to hear some of you write about bladder involvement, I thought I was alone in my spasms and frequent urination. Thanks for helping me feel less alone on this long night.
Cindy says
I went gluten-free on February 4 from a recommendation from my wonderful life-wellness chiropractor. She had attended a 2 day nutrition and health seminar. I have suffered from major back issues since May, 2012. By July 4, 2012, I could not get out of bed with a walker. It has been a long road of recovery without surgery, thank God. Doing much better every month since January. She recommended gluten-free because of the inflammation of the chronic back pain and inflammation from being obese apparently fights each other. I have not been able to get lower than a certain 10 pounds for the last 3 years. When I went gluten free – I lost 17 pounds in 2 weeks, my back started feeling better, I had a ton of energy, more focus, better bowel movements, and I was so happy. The weight keeps melting off, and I focus only on eating fresh foods, and staying away from the sugar loaded GF bread/pasta/chip items. I have not felt this good in years. Now, Saturday, was my first binge day since January. PMS – had gluten free cupcakes, probably gluten frozen yogurt and gluten veggie pizza. Went to bed. 48 hours later, explosive diarreha that had weird stuff in it. Had excruciating back pain through the nights from Saturday through Tuesday night (can’t tell if that is the gluten or the PMS), but I don’t even think I will ever purposely eat gluten again. Have been gluten free again since Sunday morning. It’s just not worth it. So many pros outweigh one bite of the cons. Hats off to everyone following this healthy journey. Been reading the book, Wheat Belly. Incredible information and it completely explains why since the 80’s we see more obese people on the streets instead of fit people (my husband and I included). It seems gluten is a toxin for all of us. We will all be better off without it. I’m hoping my husband sees the results, and switches over. Cheers to all of you GFers!
Kari says
help. i am constantly itchy…i CANT STAND IT…i noticed if i eat nothing..i mean not one thing…for a few days…i dont itch…i do all i can to eat gluten free…so i will go out and have a gf dinner…get sick…tonight went to dinner…ate what was to be a gf dinner…i am literally clawing my skin off my entire body…even using a hanger to reach my back, i want to rip my skin off. i just took a benadryll. my lips are all rashed..i have had a recent outbreak of dh on my skin…just thank you all for letting me vent i love this site.i have been gluten free for six months this month – down a lot of weight…i just itch all the time…i heard it may be other allergies tonight…so tomorrow…zero dairy, zero soy, zero sugar, zero rice zero zero zero anything. i am in agony. my son is getting married in 3 weeks – my lips are all rashed…and i didnt itch today at all because i ate nothing again, as soon as i ate, within 45 minutes – i was in the bathroom sick and omg i am going crazy with this itching 🙁 please someone make it stop. i am so sorry all of you – us – are going thru any of this. when i was not gluten free – i did not itch…i did have a huge open sore on my backside for five plus years….since gf that has completely healed and is now just a purple scar…but this itching is just wicked…i wonder why now that am gf i itch everywhere?
Rossana says
Try coconut oil!!
Eat some before every meal and put it also on your skin… like if it was moisturizing cream.
Look for it in healthy food shops.
Check that it is 100% coconut oil. Organic.
Good Luck!
Kari says
hi everyone!hope you are all well! found out itching with being gf can be low iron! so have been upping my red meat intake as i have literally been eating almost nothing out of gluten fear…and in 4 days i am no longer ripping my skin off my body with hangers to reach where i could not to scratch!!! and if i eat one banana a day i dont feel weak. i guess for diets that are filled with gluten – foods are fortified with iron and other stuff…and i learned being on gf diet we have to make sure we eat foods that give us nutrients we might be lacking! i am so happy i dont itch like i did am hugging a cow 🙂
Kari says
and thank you rossana for your coconut oil suggestion!!!
Whitney says
@ Kari….thank you! On my last Thyroid blood work, my Dr said I was low on Iron. I was confused as I am a post-menopausal woman. As I have been GF for almost 5 years, I don’t eat any processed food and so I must be missing the Iron fortification that I used to get that your posing mentions. Oh goody, more beef!
Rossana says
You’re welcome!
Another “low iron sign” is that when you drink wine, your mouth gets all stained. I didn’t believe it so I tried to prove it by taking iron supplements and now when I drink wine it doesn’t stain my mouth! And I also don’t get leg pains… I used to suffer from that a lot.
Selina says
All this low iron talk has been very enlightening. I recently found out that I was iron anemic. I have had a lot of the same symptoms described above… Skin itching and prickles, leg cramps and pain, hair loss, and fatigue – all off which I just attributed to Lupus. I also found out that I am copper deficient which can cause some of the same things as well. Turns out that it is probably a malabsorption issue from years of eating gluten. I am on a very strict diet right now to try and heal my gut. It is comforting in some ways to know that I am not bonkers and that there are other people who have experienced the same things.
Becky says
Has anyone here gone from gluten sensitive to full blown celiac? Meaning your tests were negative now positive.
I am having some unreal symptoms through out my entire body. Metamatrix stool test was positive for gluten sensitivity but blood test a year ago way negative for celiac.
I have symptoms with any grain even corn.
mpv61 says
Becky,
Celiac disease can certainly strike at any time. My children who tested negative are supposed to be re-tested every 3 – 5 years, for example, unless we do the genetic test and find out they don’t have the gene.
You should probably be retested. Good luck!
Rossana says
For all of you that still believe only on the tests, here’s this great article:
http://www.huffingtonpost.com/chris-kresser/gluten-intolerance_b_2964812.html
Andrea says
MY symptoms started after I had my gallbladder removed in 2009. Soon after i started having diarrhea. My GI doctor did and EGD and colonscopy. Which he said was fine and started me on Welchol. It did help with the diarrhea. But, my stools haven’t been the same. They are just foul smelling, pale, and very seldom formed. For the past two years I have had back pain. Two times the pain would be so bad. I have to hold on to the walls to walk. Then I started to have this burning sharp pain in my legs. I would have headaches frequently but now I have severe migraines. Especially after I eat (30min to 1 hour). For six months I had nausea, extreme fatigue, and acid reflux. Back in 2010 I believed I had Celiac or some gluten-intolerance. But, my EGD and colonscopy came back okay. The doctor never did blood test. I have an appt with another GI doctor 4/17. I’m going to request another colonscopy and genetic blood work looking for Celiac or gluten-intolerance. Because all of my symptoms point towards Celiac disease. I will keep everyone posted.
mpv61 says
Andrea,
It seems odd to me that your doctor didn’t bother with the blood work looking for gluten antibodies. That’s usually the first step because it’s so easy, and then an endoscopy is often done to confirm or maybe to look for other problems.
I think it might also be true that you could have the antibodies but the EGD wouldn’t show any problems yet because your celiac disease is too recent.
In any case, I think going to another GI is a really good idea! Good luck! I hope you find a solution.
Jeannie says
Like some others here, I really suggest reading Wheat Belly (William Davis). Testing positive for CD tells you something, but a negative result is meaningless – it doesn’t even mean you don’t have CD, let alone another form of gluten intolerance. I believe that EVERYONE is to some degree gluten intolerant, to such an extent that it should be considered a toxin. Many reactions aren’t the typical GI ones.
My reactions were the typical gut ones and I was misdiagnosed with everything possible. I was the one who figured out the problem was gluten, and the constant vomiting and diarrhea stopped immediately. So did my asthma, and my panic attacks.
When I have (very rarely) accidentally been glutened, the first symptom 6 or so hours later is the beginning of a panic attack. This is followed by vomiting, cramping, diarrhea, severe chills and tremors, especially in my hands and around my mouth. My partner, who didn’t think gluten was an issue, began eating as I do and stopped having migraines. So, lots of people are experiencing symptoms that a being missed.
Be watchful about casein – once your gut permeability has increased by gluten exposure, casein, which is a fairly similar protein molecule, begins generating an antibody response. My reaction to casein is very similar but a little less severe and takes as much as 24 hours to develop.
The best way to determine what your reaction to gluten (or casein) is is to do a one month trial of eliminating gluten and casein. Reintroduce only one at a time (gluten first) and wait three days to reintroduce casein. This will tell you the most accurately what your own symptoms are – even if you don’t believe you have any.
Jacquelyn says
Wheat sensitivity/intolerance/allergy… whatever you want to call it… apparently runs in my family: my mom, younger sister, and I all suffer from it. My mother’s father mostly did when he was alive, though it was undiagnosed, and my mother suspects a cousin, who died in her mid-thirties, may have been a full-blown celiac back before anyone knew celiac existed. We have not been officially tested. When I accidentally consume wheat or gluten, within a few hours my face swells across the bridge of my nose and my eyes (I get swollen “bags” under my eyes and my eyelids get puffy); I suffer from headaches, bloating, minor abdominal discomfort, muscle sore and fatigue; and I end up with a sudden acne breakout. As for my mom and sister, their faces swell as do their tongues, they also suffer severe abdominal pain, migraines, bloating, and “brain fog”. For all three of us, our symptoms tend to last for two to three days.
I’ve been wheat/gluten-free for almost three years now. The last two weeks have been very tough. I have accidentally consumed wheat/gluten three times. The first two times were my own fault (I forgot to warn my hostess that certain sauces sometimes… though not always, depending on the brand… contain wheat), and the third was last night at a restaurant whose gluten-free quinoa pasta or gluten-free sauce must not have been as gluten-free as they thought. I’m paying for it today.
As a side note, I also have a severe dairy allergy that, within the hour, makes me unable to breathe, and I break out in hives and suffer severe abdominal pain.
Cathy F says
I’ve been diagnosed with celiac but never had any symptoms. I’ve been careful since diagnosis. But last night I decided to eat garlic bread, 3 pieces. 2 hours later I thought I was going to die. My husband wanted to call an ambulance but I kept telling him no its the gluten. So he googled it and found your post Alison. He told me that what I was saying matched with your blog. I didn’t read it until this morning and I want to thank-you for saving me from a hospital trip. Everything you described is what I went through. It was comforting to read that what I was going through was in fact caused by gluten. I’ve learned a valuable lesson from my gluten filled night. I will NEVER do that again!! Thank-you for your blog and to everyone for commenting.
Jessie C. says
I can’t be around wheat at all! If it touches me I break out into a burning itchy rash. If I breath it in (if im in an enclosed environment like a bakery or boiling noodle steam, etc) I get really stuffy, nose runs, headache, my brain goes foggy, I get itchy. If I accidently ingest gluten I immediately get super sinusy and stuffy, nose runs, my head hurts, I usually go into a coma for 1-3 days, bloating, cramps, I get crazy brain, poopzilla, my joints hurt for a few days, brain fog-almost like I don’t really know whats going on most of the time, confusion, depression, i’m sure there is more but those are the most inconvenient. I’m sorry for what you all are going through and I appreciate you’re stories, it helps me feel like i’m not so alone!
Lisa Mohr says
Face acne, terrible stomach cramps that can last up to a week and a foggy head. It can also trigger depression and the need to sleep for hours.
Frankie says
I can “enjoy” it for a few moments and then my nose typically gets stuffy so no taste. Then I get tired, bloated, and brain fog, and I feel depressed until it’s finally out of my system. If I get two doses in two days, on the third day I feel like I have a fever and it’s hard to get out of bed. I can tell you when it is finally leaving my system because I get cold sweats and the chills, which is weird.
Sara says
I did not know how I would react to gluten until recently. A couple of weeks ago we were on vacation and out at a mexican restaurant. They make a yummy sauce for nachos that I didn’t even think twice about putting on my burrito bowl. Bad idea. Midway through the salad my husband asked if I had put that sauce on and that it most likely had flour in it to thicken it O.O I hate that panic that sets in when you think about the pain you might feel. I finished it though because, it would only be as bad as it was before I stopped eating gluten 7 months ago, right? Wrong! Within 2 hours the onset feeling of nausea set in and I knew I was going to throw up. And I did….twice. The most violent I have ever thrown up in my whole life. My whole body was in pain and my stomach felt like someone cutting it from the inside. We got home, I went to bed, and all was fine by morning. Thought it MIGHT have been the sauce, but maybe food poisoning. Cut to today. My husband was having our favorite pizza. It smelled soooo good. I decided I would just have the little triangle corner. So yummy. And in retrospect, SO not worth it. Not even an hour later that same feeling from the mexican restaurant night kicked in. But worse. I started sweating and was extremely dizzy, nauseous, shaky and major headache. My whole body (mainly abdomen) went into a tailspin and I threw up 7 times. After about a half an hour my body was shaking so badly from muscle spasms. I kept drinking water to make sure my body had something to throw up but I never knew throwing up could be this violent. I could feel everything happening in my stomach/intestines like they were being ripped apart. Painful and scary. Then, after about an hour and a half it was over. My stomach feels like it should. Very sore and tender. I am drinking water and feeling very cautious. Super easy for me to stay away from gluten with this kind of reaction. Yuck! A couple of other symptoms I have had that I am wondering if others do is 1 – Little bumps that come and go sporadically all over my face/arms/chest that take forever to heal and go away. I have had these for 5 years. Much better since going gluten free, but not gone. 2 – I have had a chronic discomfort/pain on my right side for the past 1.5 years that changes with intensity for reasons I do not understand. I have had ultrasounds, CT Scan, checked gallbladder function and a surgeon even looked around the area during an unrelated surgery I had and all show nothing. It is hard for me to lay on my right side most of the time and I always feel uncomfortable. Somewhat similar to when you run and get a side ache. Not as sharp as a side ache gets but more the dull ache you feel before it is full blown. Anyone?
Becky says
Hi Sara,
Have you been tests for Celiac, positive/negative?
I do have the bumps. Mine are red and take a while to go a way. I also get little clusters of blisters mostly on my hands. My hands and feels are very dry peely and callused. But the dry skin is taking over most of my body.
I cannot eat any grains. Dr Osbourne on Gluten Free Society says gluten senitive people should not eat any grains because they all contain a protein that will cause a reaction. He says diary, nuts, soy and eggs as well. Not much left to eat and it is so frustrating.
I have so many symptoms Chronic low ferritin (iron stores) of twenty years, terrible muscle cramps, low back ache. It’s my left side that is effected. If I lay on that side my pulse gets crazy.
I did a Spectracell Micronutient test that reviewed that I am deficient in Chromium, Copper, Magnesium, Q10, Lipoic Acid.I have just added these in, in last two weeks and already my contipation is gone. unbelievable!
I have always felt something was off with me but in the last 7 years, my symptoms have exploded. I came back negative for Celiac. But I think I have it.Those tests are not accurate.
Nancy says
@Sara- i get that aching in my lower right back side, had it for two days last week, no idea why, very annoying, just wouldn’t go away. I do not have my gallbladder anymore. I have been eating gluten off/on and drinking milk the past week which i haven’t done in a while. Right now i believe I am having an eczema flair up?? Very itchy skin, with bumps coming out after I scratch, never been officially diagnosed with it though.
@Becky- Can the test really come out false positive or false negative?? Whats the use of spending all that money if it’s not accurate.
Becky says
Nancy,
Yes, the Celiac test is not accurate. Doctor are not eduated on the lastest research in regards to Celiac/Gluten Sensitivety. They go by the old symptoms of diarrhea, weight loss, ibs…. You can be a c/gs without any of these. Dr Osbourne at Gluten Free Society seems to be the most educated in this field.
I just read the other day that gluten problems could be as common as 1/10 not the 1/133 that has been said.
And again I find that most Celiacs/GS are not off all grains including all forms of corn. Not sure if people are truly healing.
Sara says
I did test positive for Celiac. Then informed I was at the worst stage. What? I did not know there were stages. I was shown a diagram of 4 levels. I was at 4. My level was 66. This was 7 months ago. Made perfect sense to me as I am was dangerously tired, extremely sick and in bed almost every day. They have had me set up to go in for blood work since early July but I have not made it in yet. I am really curious to see where I am at now.
The Spectracell Micronutient test sounds interesting. I imagine that comes after the doctor watches your progress with eating non-gluten as there are so many symptoms it weeds a few out before they can further work with you?
My concern about my side is that it may be something that happened due to me not getting in and properly diagnosed for so long. The pain in my side has been persistent/constant for 1.5 years. The best way I can describe it is when you get a side cramp and how it builds before it gets to that max pain/discomfort. Think of how it feels right before it gets to that worst pain point. It feels like that. All the time.
Becky says
Selina,
I just read your post in regards to beging Copper deficient. I was told the same after doing a Spectracell nutient test. Currious if Copper was in your vitamin prior to this and how you are treating it?
Becky
Selina says
Hi Becky.
The nutritionist suggested that I take a copper supplement (among others), so I included that in my regimen. Unfortunately, I was having some sort of reaction to something that I was taking so I stopped all vitamins and have to start over more slowly. I was told that I most likely have a candida problem in my gut (probably from years of eating processed foods) so that would account for me being deficient in some key nutrients like copper and iron.
Becky says
Selina,
Thorne supplements are free of all allergens. I will only take that brand of supplements now.
amanda says
Sometimes depending on the amount of gluten (bread being worse than say something that contained gluten far into the list of ingredients)I immediately have burning in my throat and intestines. I can actually feel where the food is inside because it leaves a trail of inflammation. Whether or not the reaction is this severe, I always get severe gas pains later on which often lead to diahrea or constipation.
michelle conley says
thank you all for sharing. i have had crazy episodes over the years similar to many of your stories…my mother & sister both have had gall bladders out…i think they have been wrongly diagnosed & have been urging them to cut gluten/wheat bc of all the things i have been reading about our genetically modified wheat…after having an ultra sound last year & my gall bladder checking out all good…doctors told me i had reflux…hmmm? well its been 5 weeks since ive decided to cut gluten/wheat from my diet & ive felt awesome! i had 2 tiny bites yesterday of my sons mac n cheese…just to taste test it for seasoning sake…& i was in disbelief that 2 bites could bring on all these symptoms ive had in the past!!! but it must be! & to know many of you had only to take 1 bite! only confirms that my decision to go gf is the right one! no more taste tests for me!!!
Jessica Cox says
Hello all,
I’m brand new to all this. I find that my throat burns and there has been no resolution. I’ve been to Mayo Clinic and they have determined there is no GERD. My local chiropractor tested me for food allergies and noted that I’m sensitive to gluten. I’m going to try GF. Does anyone else experience this burning in their throat?
Kaylee B says
Alison I have very simlar reaction as you do.
My only difference is it can take anywhere from 1 – 4 days to react. It makes the guessing what I ate so much more of a challenge. It doesnt always depend on how much gluten I have eaten either. Though I have noticed if the gluten is in liquid form (beer or alcohol) I react twice as fast.
syn says
I envy you people who vomit it right away. I guess I do not because with me, I can tolerate a little cross contamination and be fine. I can even drink a few gluten beers or spirits and typically be ok. However, last night I was starving and rather drunk and my friends wanted to eat jack in the box. That place will KILL someone who is gluten intolerant. heh. anyway, I ate some pure gluten food thinking i was going to be superman and just muscle on through the symptoms. I hate myself for doing this!!! I ate a sourdough jack and fries (their fries even have gluten too) with stuffed jalapeno poppers (extremely deep fried gluteny goodness). I don’t know what I was thinking!!! sglkjslkgjlsdajg. anyway, I passed out after this horrific meal, for about 3 hours.
So, I woke up dehydrated as hell from the lack of water and excess alcohol consumption. Desparately in need more sleep. Can’t get any. This is what happens to me, I reach a state of utter exhaustion coupled by constipation, gas, bloating, agony and I can NOT even sleep it off!!!! It feels like it kills me so fast. and theres literally no solution. I have crap health care and emergency rooms don’t take insomnia serious at all. They won’t diagnose food allergies for me, no one believes these kinds of problems are even real and they just treat you like a psych case. I can’t sleep. I want nothing more than to sleep and crap my brains out, but for me, it’s as if the gluten just gets stuck inside me causing extreme constipation and the inability to rest. I take craploads of laxatives, laxative teas, probiotics, kombucha, suppositories, enemas anything I can do to alleviate this aagony and try to get rest but sometimes (like now) nothing is enough. I’m now on 3 hours sleep after being up for 24 hours and I can’t sleep. This is fucking hell. You wouldn’t wish this agony on your worst enemy. I envy all of you who get nauseus and puke it up right away. You have no idea how lucky you are… my body always thinks it can handle it and then it gets *STUCK*