A post from a reader over on the About.com celiac disease forum got me to thinking about celiac disease symptoms - specifically, symptoms of major gluten exposure versus symptoms of trace gluten exposure.
The symptoms I get when I've had major gluten exposure seem particularly easy to spot, and relate strongly to what most people consider the most common celiac disease symptoms - terrible fatigue, gastrointestinal upset (from my esophagus all the way down), emotional upset, insomnia, joint pains, migraine and dermatitis herpetiformis. It can take up to a week for me to recover completely from a major gluten exposure.
But when I accidentally consume trace amounts of gluten, my symptoms become much more subtle and tricky to identify. I usually have some irritability, but I might sleep restlessly rather than lying awake with insomnia. The next day, I might suffer from a bit of gastrointestinal malfunction - but usually not much, and sometimes none at all. I also might have a touch of fatigue, but again, not much. I might get some visible dermatitis herpetiformis, but I might just feel itchy where the DH normally appears. The symptoms usually are gone within a day or so.
It took me a long time (and many known instances of exposure to trace gluten amounts) before I began to identify these symptoms with gluten. When I began testing foods for gluten with home gluten testing kits, the results validated what I already knew from my symptoms: many foods contain trace amounts of gluten. Studies such as this one that found gluten in supposedly gluten-free grains show how gluten contamination permeates our food supply, and this validated my knowledge further.
Since I've gotten even better at identifying and eliminating trace-gluten-contaminated foods, my overall health has improved dramatically and my symptoms when I do get glutened - while still apparent - seem to be slacking off in intensity.
In the comments, tell us about your glutening symptoms - how do they compare to what you experienced prior to going gluten-free?
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The worst symptoms I’ve had since going gluten-free happened when cleaning out my son’s pantry while helping him pack for a move. I packed up open pkgs of cereals, pastas, mixes, etc. All I did was touch them & possibly inhaled dust from these pkgs! Two hours later, I felt faint, could not stand up, had horrible stomach cramping with diarrhea, and nausea lasting two hours. I was so ill that my son came very close to calling 911. Two hours later I could function again but the fatigue and ill feeling lasted around a week. Very scary.
The last time I was Glutenized was from a reputable, upscale restaurant that assured me (swore up and down!) that their fryer oil was designated ONLY for french fries, and they were aware of gluten/cross contamination- Unpollunted oil. I had a few french fries, and within 2 or 3 hours started with joint aches, a fever and typical flu like symptoms. couldn’t get home fast enough. Spiked a fever, my joints were screaming, and I was doubled over with severe rib cage area pain. I was close to fainting, my husband was frantic to get me to the E.R. but I refused, thinking the’d probably give me something containing gluten and finish killing me! I was in bed for 24 hours, and it took 7-10 days to start feeling normal again. When I had my son, I had back labor for 36 hours, and was administered Pitocin to “speed” my contractions along (read: one big bad long contraction- for hours) so for the last 14 years all pain has been gaged against this. This glutenization was WAY WORSE.!
I am paranoid now about eating anywhere other than at my gluten free home! (my children have Celiac as well).
I am a very recently diagnosed Celiac and am only 3 days into going gluten free! I’m extremely nervous about making this change because I’ve heard of how terrible exposure can be once you get your body freed of gluten. How have your reactions compared with your old symptoms before you were diagnosed? Are they worse, or just a lot more noticeable? I’m really hoping I won’t be out sick MORE now that I’m going GF…
I have been gluten free for 4 years now. Before my symptoms were constant gastro distrese. I always went to the bathroom up to 12 times a day! My stomach always hurt and no one could tell me why. Now that I do not eat gluten I can always tell when I got some! If it is a cross contamination issue I have a headache and the washroom is my best friend for a few days, if it is a glutened issue I am in terrible pain, fetal possition on the couch! The bathroom is my ONLY friend! I am wiped out and can do nothing but rub my stomach and hope the this trip to the washroom will get it all out! It will take me about a week to recover from it.
I recently turned 50 years old and have been suffering with nearly all the Gluten symptoms for most of my life. I started a GF diet in March of this year and have been much better with my stomach problems but still have exposures which cause many of the same problems most of the other people here experience. I had a very abrupt attack just this evening which was mostly manifested by painful bowel problems.
The one difference I seem to have from most of the other
people in this forum with Celiac is that I tend to recover more quickly than most of the others leaving comments. There is also the possibility that I do experience more pronounced symptoms and sometimes don’t relate them to Celiac since this disease has plagued me for so long, I just sort of blow off the less severe symptoms out of habit.
Regardless, I am still doing much better overall and continue to recover and try to avoid Gluten as much as possible. Good luck to all of the other Celiacs, hang in there and God Bless!
I’m newly diagnosed (3 mos.) with Celiac and I find this disease to be very frustrating, not that any disease is easy. I suffer from all of the symptoms listed in the article when I am gluttened and it takes me about a week to recover. Before I found out I had Celiac the syptoms were the same but I guess I somehow dealt with it because I was told that it was most likely Fibromyalgia. Now that I know what it is and am doing what I can to be gluten free, I find the symptoms more severe when I am gluttened.
I read in a post by one writer mention that s/he has a gluten-testing kit at home. Is there one testing kit that you recommend? Thanks.
Melissa,
In reference to the fryer oil, most restaurant strain their oils from all their fryers at The Same Time! Thus, there will still be cross contamination even if one of the fryers is “dedicated.” The only way to be safe is for them to use a clean pan and fresh oil. I had that happen for me while on vacation. This was in a bar and grill of all places. Other than that, I don’t eat fries anywhere.
The only symptoms I ever had as an adult were from reflux. As a child, I had a lot of stomach pain and it was attributed to anxiety. When as an adult, I had an endoscopy, I was told that my GI tract showed classic Celiac disease. My mother had been told the same thing years ago and did not follow a gluten free diet. She now has lymphoma, osteoperosis and mild dementia, but she is 86 years old and most of this kicked in only about 3 years ago.
Question….w/virtually no symptoms, how motivated should I be to eliminate gluten? I have looked for the answer for this all over the place. Any suggestions?
Re: Gluten test kits. Tracy M, to the best of my knowledge, there’s only one gluten test kit currently on the market for U.S. consumers: the EZGluten kit. However, I’ve been in contact with another manufacturer that’s about to introduce a competitor, and I anticipate doing some home tests and comparing the two here in the near future. I know this is a topic of huge interest to the celiac community!
Patty, It is extremely important to stay gluten free even with no symptoms. Studies show that even 1 accidental ingestion a month with increase your risk of caner seven fold! Not double it, not triple it but 7x the risk! It also messes up your immune system so you are more prone to other autoimmune diseases like diabetes and Hypo and hyperthyroidism and many other “piggy back” diseases.
This alarming study below says the risk is 100% for certain types of cancer.
http://www.celiac.com/articles/1187/1/Increased-Cancer-Risk-Associated-with-Delayed-Diagnosis-of-Celiac-Disease/Page1.html
This study shows an increase of mortality for those with less symptoms.
http://www.webmd.com/digestive-disorders/celiac-disease/news/20090915/new-clues-to-risk-from-celiac-disease
It’s just not worth it. Please be very motivated Patty! :+)
My worst exposure occurred when I changed makeup foundation to a mineral based one with hydrolyzed wheat protein. The first day, I felt dizzy and had a headache but did not realize it was the makeup. The second day more dizzyness felt feverish and nauseated. By the third day, I was hurting so bad all over that I couldn’t move. I had diarrhea and vomiting. I thought I had the flu. My husband said he thought I had been glutened. I told him no way that there was no gluten in my diet. I quit wearing the makeup for 5 days while I was too sick to do anything.
I was feeling better and was cleaning out the bathroom when I just happened to pick up the box and there it was the 3rd ingredient!!! I am just letting everyone at work think I had the stomach flu. I really do not want them to know that gluten can make me this incapacitated.
I didn’t have the obvious immediate gastro problems I’ve heard of, so I haven’t been neurotic/careful about cross-contamination. Last week I ate a whole dish of noodles I now know were wheat-based and that night I threw up for 2 hours. I was able to link it to a bad throwing up episode the week prior, too. So since going gluten-free last January, my body has begun to identify gluten as a toxin and tries to get rid of it immediately. To answer Patty’s question, you should definitely eliminate gluten. Even if you don’t feel your body’s reaction, the damage is still being done to your intestines. I have read that even a crumb can do damage.
I am 54 and found out I had celiac 6 months ago. I don’t have severe stomach problems but have hashimoto (under active thyroid), B-12 deficiency, folic acid deficiency, and fibromyaglia. My symptoms are fatigue, body twitching, joint pain, brain fog, and so on.
I’m having a hard time connecting all this to what I eat or don’t eat. Been gluten free for 6 months now and don’t feel remarkably better but hoping I will sometime soon. I’m tempted to gluten myself out to see the difference then I could tell major gluten exposure to minor.
My 6 year old daughter was glutened at the neighbors. She had 3 days of severe diarrhea and is still not better. She had a fever but it seems to be gone but the gastric distress is still in full force. She has been GF for two years and her only other exposure caused her to vomit for 3 hours. Does anyone know how long is to long. I feel so badly for her
She hasn’t been to school all week.
I have been GF for over a year. If I’m accidentally exposed to trace amounts, I get SEVERE diarrhea and stomach cramps. It only takes gluten touching my food to cause this. My current exposure I believe was caused by someone spreading Mayo on bread and returning the knife to the mayo jar. If I get a major exposure …it’s off to the hospital for fluids and dicyclomine…usually 2 bags of fluids because the diarr he’s is so severe. The longer I have been GF, the worse the exposures are getting…but it still beats being g sick and dehydrated al the time.
I am the co- owner of Ed’s Gluten Free Specialty, Ed is my husband.
The crazy part about this is that”any” gluten is allowed in a Gluten Free product. As far as my husband’s body is concerned 1 part per million is too much, and no restaurant or prepackaged food is safe enough. The rules need to be tougher here in North America. 20ppm in the USA, and 10ppm in Canada is a disgrace. Gluten Free should mean just that if it’s going to be labeled as such. Australia’s rules are just that, so why are we torturing the Celiac’s of North America by allowing this toxic garbage in their food supply.
As I write this Ed is in the hospital on morphine after being contaminated by a GoGo Quinoa Product.
I hope we get it right soon!!!! According to doctors these types of sever reactions can become life threatening, and seeing what Ed goes through, I believe it.
I just realized seasoned fries may mean dipped in a batter with flour…I could not figure out why I could not fall asleep and even when i did i would awaken an hour later with stomach distress and irritability…seasoned fries…glutenized. I do not have celiac disease but have Hashimoto’s disease and hypothyroidism and know that i can not tolerate gluten. before i gave it up I had itchy blisters on my face, could not sit still, had headaches, depression, and abdominal problems.
Kim, the rules for defining gluten free down under (Australia and New Zealand) may appear tougher but I can promise you it makes no difference as there is no independent enforcement. My husband and 2 kids have coeliac disease and not a week goes by without some contamination. It drives me nuts even though we eat basically a non-processed food diet. We never eat out now (no restaurants), take our food to friends’ places……..but we still have problems. We definitely do not trust the gluten free label – most gluten free bread is made in the same place as gluten containing bread. We even have to check where the meat is butchered as breaded meats and sausages can cause contamination. Some chicken is low gluten because of the extra marinades, etc they add…and so it goes on. Thank goodness my kids like fruit and vege and fish – that’s what we have decided our diet will be for the next while in our attempt to get everyone well. Interestingly my husband is Canadian and we had 3 fantastic weeks in Canada last year. Everyone got better and that was with eating at restaurants (the best my daughter had ever been since she was diagnosed 9 years ago). I want to move to Canada (at least we can go out for a safe meal there!), but the rest of my family want to stay in NZ!
I have been suffering with all the symthoms mentioned above for twenty years with no relief until a doctor mentioned in passing I may have problems with gluten.. A year later after being on antibotics for 8 months I started reading everything I could about gluten. I had my DNA tested but it came back negative.. On Jan 13, 1911 I went gluten free . I still have my trails and errors and mishaps but doing better. I told my gp doctor that I had started a new diet, her remark was “Thats a hard diet to stay on”. No, not having a life for 20 years was the hard part. I’m back to living my life….Thank you for this web site. Keep up the
good work.
I am honest with everyone when I get glutened as I think the only way to educate people is to make them aware of it and it’s effects. My husband still often doubts my gluten exposure and tries to find alternate reason’s for why I’m sick, and that sucks. I have been asked at work if I “party it up” on the weekend because I get effected on Mondays. And the answer is no, but I am often forced to eat out somewhere due to necessity on Sundays with the family (hubby likes places that aren’t always safe for me.) Even when I ask all the right questions I often get glutened due to cross contamination. If you are not celiac you don’t really understand how important avoiding cross contamination is. Would anyone CHOOSE to have stomach flu symptoms and feel like their head is in a cloud and be cranky and tired and miserable. I never suffer when I bring my own food with me. But I enjoy food and like to try new places, that’s the hardest part about all this. To be safe, and to help keep me from being away from work sick, I am no longer able to try new food or places to eat. And well meaning friends and relatives will have to choose not to take offense when I bring my own meals to dinners. Better that then becoming a hermit!
I was diagnosed with celiac disease in August after having a lifetime of health issues. Luckily I started going to the doctor early and after being tested for gall bladder disease, kidney problems, etc. for 10yrs a random walk in clinic doctor said I will not only write you a doctor’s note for the billionth midterm you have missed, I will figure this out! I am currently in bed with a contamination reaction. I went away for the weekend with friends and we had to figure out meals together. I am wondering should I tell people to litterally call the manufacturers themselves if they want to make an item I can eat. Even for things like coa coa powder? I am feeling really upset right now.
Hi Kirsten, Just wondering which part of NZ you’re in. I’ve just moved here two weeks ago from the UK and am shocked at how much gluten is in foods here, and how much food is made in factories processing gluten. I was told it was great here for gluten free eating, but I beg to differ. On top of that, I was wondering why I am feeling like crap again, and suddenly have flu like symptoms and fatigue, just following a cold… when I’m never sick in UK. I’m beginning to think I am being constantly glutened, even though attempting to buy gluten free foods (at an exhorbitant price). Not sure if you will get this email, but it would be good if I could PM you.
Janey
I have been on gluten free diet for about one and half year and still wasn’t feeling well at all. In past couple months I realize how much
I had been getting gluttened without realizing it. It is a darn hard diet to follow and even harder when your family doesn’t take celiac disease serious. Had a brother who died from lymphoma and lots of auto-immune disease in my family too.
Anyway I have gluten ataxia which means I am still in a wheelchair.
Just started getting better on that–able to take shower more eaily. I also have mild dementia –that is the part that bothers me the most–my family has loads of stigma towards any cognitive problems on top of not really taking celiac serious.
Fortunately I live alone and do every bit of my own cooking.I also never got torestaurants so I don’t have that problem. Anyway I sure do know what a hurting stomach is like
Hi Kirsten and Janey
I’m also in NZ and am newly diagnosed with coeliacs (only 2 weeks). I’m finding hurdles everywhere such as cross-contamination, hidden gluten etc and am feeling really confused and overwhelmed with the whole thing. Do either of you know where is the best place to go for advice here in NZ or have any tips you could give me? Cheers.
I’ve been gluten free since Feb 1st but have been having a terrible time of it. I’ve recently started going Dairy Free so I hope that will help my stomach. I’ve been getting so dizzy when I stand up, confused, and my memory is shot. I’ve told the GI people this and all they say is go to your primary doctor, we only do GI stuff. This has to be related to something! I’m diabetic and often low – how many brain cells does going low kill? My endo says for sure some. I have been ‘poisoned” (that’s what I call wheat now) in the last week but I’ve noticed this dizziness for the last month. I’ve truly not been cheating that I know of. I check everything. I take thyroid med too. Is that it? Help! My job is suffering due to it and so am I. Random headaches, stomach hurts, dizzy, memory is gone. Ideas, somebody! Today I started taking Boost for vitamins. Gained weight after going GF for awhile but now back to lowest weight ever.
I have been gluten free for 1.5 months…Saturday night we ate out and I tried to be very careful and then had movie popcorn and a vanilla steamer at Starbucks…I had such bad pain/pressure in my upper left stomach all day Sunday…like bad trapped gas…it has abated somewhat Monday morning but I am exhausted and just feel lousy…I have not been diagnosed with anything but was feeling so bad for so long that I decided to give up gluten to see what happened…I started feeling better and the biggest change I felt was my ability to start sleeping through the night…no cramping to keep me awake. I am hoping to start feeling better again…I also think the milk in the starbucks drink tipped me over the edge…I have also seen a dairy connection. Thanks for some great reading!
When I get glutened by even fairly small amounts of cross contamination it usually follows a predictable pattern. First up is gas and bloating, w/in an hour or so at most. At the height of a bad exposure I look pregnant and gain up to 5 lbs. Next comes stomach pain ranging from mild to breath taking. Following that is bouts with diarrhea, and more gas. I get seriously fatigued, brain fog, irritable, and can easily slip into depression. 24-48 hours later I get a nasty mouth ulcer that lasts 6-8 days and is supremely painful. Near day 5ish I start to notice excellerated hair loss in my comb, which lasts for 3ish days. The bloating usually lasts a week.
I’ve had 2 endoscopies, 1st one had major damage shown but I was told it wasn’t celiac, 2nd one damage cleared but was still told no celiac. I had been already on a gf diet for years before I had either one done though. This was years ago when my doctors had no idea what was wrong with me or what celiac meant. I wish I knew if I had it for certain or not but even the smallest amt of gluten gets me sick. My symptoms after getting glutened vary (I follow a strict gf diet) some are bad acid reflux, horrible stomach pains, itchy tiny bumps on my skin, really bad joint pains and aches – like I’m 100 yrs old aches. The skin on my face breaking out. Also, recently I’ve linked depression and anxiety to getting glutened. I get an overwhelm feeling like I can’t handle anything and sometimes if I’ve been heavily glutened mild panic attacks and bouts of depression. Basically, it sucks. It seems to disrupt my physical, emotional and mental well being. So again I think I have celiac and not a sensitivity because that would be one major sensitivity but I’d love to know for sure. Can anyone recommend a great Celiac doctor in NY other than Peter Greene (I have a friend who didn’t have the best exp with him).
I have just started a gluten free diet though I haven’t been diagnosed or had any type of examination of the bowels
I had food allergies as a child and in my early years I literally reacted to every food except soy with high fevers and I was just a very withdrawn infant (my mom says I was cold and detached)
My mom stopped my special diet early on
So I have had seizures (diagnosed as Epilepsy) part of the reason for diet is my seizures don’t respond to medication at all and I am at my wits end of what to do
Chronic and severe constipation with the occasional weight dropping diarrhea for good measure
Severe cramping (have been hospitalized for the pain but no exam of the intestines was given)
Bloating, either lots of gas or a painful inability to pass gas
2 separate incidents of paralysis that luckily I recovered from though I never fully regained neck mobility
Stiff joints
Thyroid problems
Dry itchy skin, dry eyes, dry mouth
My nails pretty much do not grow (since I got off gluten though they have grown at a remarkable speed)
Depression
Spaciness (I feel like I have been absent so much of my life, its like my brain is always offline)
A 30 point drop in my IQ due to problems with spaciness and a bad short-term memory (I have a terrible memory)
Low Blood Pressure (becomes dangerously/extremely low when I sleep)
Do you think I might have a gluten problem? I thought of going gluten free for a year and then if I improve staying gluten free but if I saw no improvements to return to a normal diet. Is this safe or might I become gluten intolerant if I wasn’t already?
Hi Kesai,
There’s no evidence that eating gluten-free will *make* you sensitive to gluten, so there’s no danger in trying the diet. Two points: if you want to be tested for celiac disease, you need to do that before going gluten-free, and if you want to give the diet a fair trial, you need to be completely gluten-free, not just partially. Trying it for a year should give it enough time — if you’re going to see improvements, you may see them quickly (although it wouldn’t surprise me if your seizures take much longer to lessen — neuro problems take a long time to clear, and you have to be incredibly strict with the diet to see any improvement).
Good luck!
Jane A.
My daughter was recently diagnosed with early onset celiac disease last week. We ate a gluten-free diet for 3 days and then she accidentally ate two pieces of wheat toast. About an hour later her stomach started hurting really bad- she got very bloated and the stomach got very hard and has been “throbbing.”This has been going on for two days and she is missing school. She has a low grade fever, is dizzy, and very emotional. I bought some enzymes to help digest gluten at the local health food store, but nothing seems to help. Does anyone have any advice for anything that could help ease her symptoms? She is very miserable. Thanks.
I have no idea if I have gluten intolerance. I have had every test, Cat Scan, Ultra Sound, Preforia, Lyme, skin biopsies(sue to constant hives and skin rash on neck and face), connective tissue tests for Lupus, many blood tests, and nothing found except a weak area in my lower groin area where I have had previous surgery. I have pain all on the left side, constipation and sometimes, not always after I eat, about 30 minutes later, I start aching all over, the pain is terrible, I feel disoriented, angry, heart racing and then my arms and legs feel weak and cold. I am afraid to eat. Afraid to drink and don’t know what to do. Have seen a gastrologist, gen practioner, dermatologist, cancer specialist, connective tissue disorders specialist and nothing. Can anyone give me advise. I think food is killing me. I dread these after eating attacks and have thought about just stopping eating anything for a while and see what happens. Thanks for any advise. PS I am 64, and this past year has been hell.
I know this won’t be read by the young lady who had a reaction (gloating especially) after Starbucks, but I have to share! The light syrups at Starbucks- frappucino base and latte/steamer bases- are made with barley! I had a light vanilla latte and was so sick for days. It was my first major glutening since going GF (I’d had minor exposures, but I hadn’t been GF that long, and since my main symptom before was DH that’s what I got with minor gluten) and I was on the verge of going to the ER! It felt just like classic appendicitis, and if I hadn’t thought to check celiac message boards about stomach pains and starbucks, I would have wasted a lot of time and money at the hospital.
What makes me angry is not that Starbucks doesn’t have a good allergen policy, it’s that they don’t instruct their workers in what has gluten at all! I don’t mind a coffee shop being so worried about cross contamination that they don’t say anything is GF, I do mind asking a barista if the vanilla syrup contains gluten and being assured it does not!
It clearly does, but you have to call the company to get that information. It’s no where on their website, in their store, or in their employee’s heads.
Sorry. I’m in a bad mood, I got very sick on vacation last week, and I’m still curled up with cramps and a headache. I was visiting my sister across the country, and she just doesn’t understand how sensitive I am now. I was only diagnosed six months ago, she is having a lot of trouble understanding that I really do get this sick from a few crumbs of wheat bread!