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Jane Anderson

Symptoms: Major Gluten Exposure Versus Trace Gluten Exposure

By October 4, 2010

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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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Comments
October 4, 2010 at 6:16 pm
(1) KJH says:

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.

October 11, 2010 at 6:24 pm
(2) Melissa Greenwood says:

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).

October 11, 2010 at 6:57 pm
(3) GFShay says:

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…

October 11, 2010 at 11:55 pm
(4) Lisa says:

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.

October 12, 2010 at 12:37 am
(5) TSB says:

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!

October 12, 2010 at 12:03 pm
(6) Debbie says:

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.

October 12, 2010 at 12:31 pm
(7) Tracy M says:

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.

October 12, 2010 at 6:48 pm
(8) Barb says:

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.

October 12, 2010 at 10:14 pm
(9) Patty says:

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?

October 13, 2010 at 5:53 am
(10) Jane Anderson, About.com Celiac Disease Guide says:

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!

October 15, 2010 at 9:16 pm
(11) Janna says:

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! :+)

October 16, 2010 at 2:53 pm
(12) Katie says:

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.

October 17, 2010 at 2:54 pm
(13) Melissa says:

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.

October 18, 2010 at 4:22 pm
(14) Susan says:

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.

November 17, 2010 at 9:41 pm
(15) Maura says:

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.

October 25, 2011 at 10:39 pm
(16) amanda says:

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.

December 30, 2011 at 6:41 pm
(17) Kim says:

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.

January 8, 2012 at 11:11 am
(18) Lynn Barry says:

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.

January 16, 2012 at 3:43 am
(19) Kirsten says:

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!

February 3, 2012 at 1:31 am
(20) Nancy DeVault-Holt says:

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.

February 21, 2012 at 3:46 pm
(21) Maddy says:

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!

June 7, 2012 at 3:22 am
(22) Julia says:

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. :(

July 17, 2012 at 6:10 pm
(23) Janey says:

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

August 12, 2012 at 6:01 pm
(24) Jo Ann says:

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

August 30, 2012 at 1:27 am
(25) Ange says:

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.

September 16, 2012 at 6:02 pm
(26) Laura Taylor says:

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.

October 15, 2012 at 6:47 am
(27) Allison says:

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!

October 22, 2012 at 10:41 pm
(28) Jen Lane says:

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.

October 26, 2012 at 1:05 pm
(29) J says:

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).

January 6, 2013 at 10:36 am
(30) Kesai says:

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?

January 6, 2013 at 4:56 pm
(31) celiacdisease says:

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.

March 12, 2013 at 12:08 pm
(32) Sasha says:

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.

April 24, 2013 at 10:46 am
(33) June says:

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.

April 24, 2013 at 1:20 pm
(34) Anne says:

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!

June 3, 2013 at 5:59 pm
(35) Mary says:

Like only a minority of celiacs, I have no abdominal symptoms; instead have had severe myalgia, joint pain, skin blotches, brain fog, neuropathy (excruciating pain in toes, for instance). So it is impossible to immediately know when I have gotten gluten by accident. It took me more than 8 months on the diet to feel better. And despite my best efforts (like cooking at home every night!) I still get symptoms. I have no idea why, since I get them even when I have not been in a restaurant. So discouraging. It is especially hard now, because I am also recovering from hip surgery (and not too quickly, I might add). Hard to tell where one pain starts and the other leaves off.

July 8, 2013 at 8:29 pm
(36) Erinn says:

My symptoms have varied over the last 5 years. Initially when I cut out gluten my symptoms were extreme and debilitating. Over the years my symptoms have become better and I am slowly improving.

July 15, 2013 at 11:25 am
(37) CW says:

I have been gluten free for over a year now. I have suffered (looking back on symptoms) for years and years of not knowing. The peak was when I missed an entire week of work and ended up in the ER only to be told after a CT scan that I had Diverticulitis. After a “date” with the Gastro Doc, he said that there was no signs of Diverticulitis and that my colon was in good shape. While this was good news, it only added to my confusion after I had changed my diet for a month to exclude anything with seeds, however, I was also instructed from the ER doc to eat bland foods until my “date” with the Gastro doc…i.e. crackers, noodles, soups (all gluten laden foods).
So a self diagnosis, based on LOTS of food eliminations and a Facebook site (of all places), pretty much saved my life. My doctors were treating my individual symptoms, skin rashes, upset stomach, IRRITABILITY, joint pain, etc etc etc and I was still miserable despite lots of medications.
I am pain free now for the most part, but because I stick to mostly all natural foods, live fruits & veggies, my body has rejected anything that isn’t natural…even my make-up (severe contact dermatitis). But I feel like a million!!

July 16, 2013 at 12:20 am
(38) Ralphie says:

To all you folks that are having problems with you GF diets: I believe if you have not already, seek out a certified dietician. Learn all the names for wheat that you probably don’t know. Did you know that anything containing malt is a by-product of gluten containing grain? You will be surprised how much they can help you. Next, Read the label…If you don’t know what an ingredient is DON”T BUY IT until you find out what it is. The internet is a great resource for questions and websites dedicated to GF from recipes to questions. Maltodextrin in the US is probably made from corn and safe, in other countries they are not required to list if it’s from corn wheat or other grains. I found this out from a dietician. If you read your labels you may even find a favorite taco mix like I did that is actually gluten free but not listed as such so it doesn’t cost a small fortune…Hopefully this is some advice that even one person can find helpful at least in the US. In larger cities there are support groups for GF people. To the ladies in New Zealand, can you perhaps order grains and breads in bulk from the US and share the cost? Most of them are cheaper that way(in quantities) I’ve only been diagnosed for 6 weeks and with my own clues, I have not been glutened yet. Good Luck to everyone.

July 16, 2013 at 2:45 pm
(39) Malia says:

Reading these comments brings tears to my eyes. Tears of joy and sadness at the same time. I have suffered with brain fog, swelling, body aches, exhaustion, mild depression & mood swings, headaches and stomach problems for about 10 yrs with no medical explanation. Two months ago I ended up in the hospital for 3 days after several hours of uncontrollable stomach problems. All the tests showed ‘nothing they could name’. A month later I got sick again but not with the same intensity. I have been gluten free since then and feel so much better. I have had some down times and thought I was wasting my time with GF but now reading this I see I was ‘glutened’. It feels like a flu, a hangover or PMS to me. I dont have severe symptoms but the exhaustion, depression and body aches are enough to stop my life for that time frame. Thank you for all of this wonderful information!

July 19, 2013 at 4:51 pm
(40) Carolyn says:

Newly diagnosed. Following w/ interest. Thanks!

July 20, 2013 at 1:29 am
(41) Aryel says:

I came to Celiacs the long way around through personal research and dire desire to discover and understand what these peculiar rashes were on my legs (and arms and chest) that I had been having over years.
When I read about a rash that mirrored itself on both sides of the body at the same time, and when I read others’ descriptions of the bone-depth ITCHING, and when I saw pictures on the internet of MY rash, I KNEW without doubt that that was me!
So I researched Celiacs disease, and what Gluten Free eating was all about.
I found and am still re-reading Dr. William Davis’ book: WHEAT BELLY, which I cannot recommend highly enough, and on June 10th I went Gluten Free.
I have lost 9 pounds. All but one of my rashes are GONE! My stools are NORMAL. I have no more stomach hugging cramps and pain with the horrid diarrhea. I have barely ANY phlegm spit ups . I swear my hair is growing in more than falling out. I have stopped taking my daily400 mgs of Ibuprofin to be able to walk easily. I have no pain in back or joints. . . . My brain is MUCH less foggy. I have NO CRAVINGS, which for me is miraculous. I have minimal “hunger” and eat my gluten free 3 meals a day.
And I could go on and on!
I have learned very recently that LEAKY GUT SYNDROME is probably at cause for my DH (Dermatitis Herpesformosis) Rash eruptions, and that it may take a year or more to have my intestines healed as much as they need, to prevent the continuing of the rash.

I have been allergic to ALL LEGUMES all my life, so that has made it easier for me to give up the gluten.I know what anaphalactic reactions are!
I am just thrilled that I have found this disease/allergy out. So grateful to be on the road to WELLNESS, and a new joy. BTW: I am 73 years old, and now feel I can really DO something with the next 20 years!
Read that book: WHEAT BELLY!

July 23, 2013 at 6:59 am
(42) Mike says:

My Son and I both have celiac we live in a farming community, during wheat and barley harvest time I have constant symptoms he has no symptoms. Is it possible for me to be ill from this amount of exposure?

July 24, 2013 at 7:50 am
(43) celiacdisease says:

@Mike, unfortunately, airborne gluten can be a problem for those who are very sensitive. I’ve been glutened by being in (very) close proximity to the dust and debris of a wheat harvest.

August 25, 2013 at 11:56 am
(44) Sarah says:

I was diagnosed about 5 years ago with Celiacs Disease and have followed a strict gluten-free diet since.

If I accidentally ingest gluten now I have a very severe reaction, very soon after (within the hour) I become violently ill: vomiting until I am dry-heaving, can’t even keep Gravol down. Simultaneously very bad diarrhoea which consists of entirely undigested food and blood, usually both the toilet and garbage can need to be used at once and I suffer crippling stomach pain for up to 3 days. I don’t feel “back to normal” until a few weeks after the exposure.

I react worse to things that contain more gluten, ie. I had a muffin that was apparently “gluten-free” while traveling – definitely not. I was hunched over the toilet vomiting and dry heaving for about 12 hours, I had an extremely high fever and was dripping in sweat, shaking, severe stomach cramps and of course diarrhoea with completely undigested food and blood. Could not keep water or Gravol down even after every single thing was expelled from my body. That occurred about 15 minutes after eating it.

There was a time I had fries which were cross contaminated also, which took a little longer for me to react, about an hour but the exact same symptoms… only they didn’t last quite as long (3-4 hours as opposed to 12).

For a few weeks afterwards none of my food digests properly, everything comes out similar to how it went in and there is a lot of blood in my stool. I’m absolutely terrified of accidentally ingesting gluten because of how severely I react to it. I haven’t heard of many people reacting this way to gluten. I can only describe what I go through as much, much worse than any terrible stomach flu I have ever experienced. It is on its own level of horrible torture.

Oddly enough, I have never had a reaction to certified “gluten-free oats” and am able to eat them with no problem. I also do not have any problems with dairy.

August 25, 2013 at 12:41 pm
(45) Laura says:

This was incredibly helpful. I have been gluten free for a number of years but recently used a generic form of Allegra which had gluten in it and at the same time, while on vacation, tasted a crab soup that I was told was gluten free but had barley in it. Reading this made me feel much better that my symptoms where not something else, but just my misjudgement in OTC medication and trusting a new restaurant. Thanks!

September 3, 2013 at 4:26 pm
(46) Virginia says:

Anyone with gluten problems who is taking any kind of prescription medications must have a pharmacist who takes your needs seriously. She/he should find out whether your meds are GF. If a med contains gluten he/she must let your physician know.
On another subject: After reading the horrific signs and symptoms reported by others, I feel lucky that mine are milder. Until menopause began in 1984 I had symptoms that I now know could be caused by gluten: diarrhea, bloating, anemia, gastrointestinal discomfort of various kinds. In 1981, when my menopause began, the diarrhea worsened. I lost 20 pounds in less than a year and was on track for continuing the loss. My physician was baffled. I began reading everything that might have clues. When I suggested celiac disease he gave the reply that was standard at the time: “Highly unlikely, since it’s a very rare condition.” I went GF anyway, and was very happy when the diarrhea lessened and I began gaining weight.
It’s hard for me to trace my occasional diarrhea to its cause, since milk products and fructose also give me diarrhea. But I’m happy that I don’t suffer as other gluten-devastated people do. My heart goes out to all of you!

September 15, 2013 at 10:53 pm
(47) Gail Robertiello says:

Last night I ate 1/8 of a package of frozen mac and cheese thinking it was GF. Approximately 3 hours later I woke up so nauseous and couldn’t understand why. I ended up throwing up for 2 hours with bouts of diarrhea during the last 45 minutes. I was alone and on floor of the bathroom with such excruciating abdominal pain there were times I couldn’t breathe. My body was shaking all over in spasms. For 2 hours, I thought i was dying. Wanted to call 911 but couldn’t even make the phone call. Has this ever happened to anyone and if God forbid this should happen again should I go to the hospital?

September 27, 2013 at 1:34 am
(48) CLO says:

i’m *pretty* sure i was cross-contaminated “glutened” by these products with Gluten Free labels on packaging:
Barbara’s Multigrain Puffins— (not totally positive, but likely)
Ortega Yellow corn taco shells-
Quaker Carmel Corn Rice Cakes

anyone have a website to list these?

October 4, 2013 at 4:40 pm
(49) Olivia says:

I went gluten free approx. 90 days ago. 100% free. Never had any
celiac symptoms that I was aware of. Now if I am accidently glutened, I have all the worst symptoms described in most of the above comments. Is this normal? Or am I gluten sensitive and didn’t know it. Of course I feel fabulous after giving up wheat and have lost 14 pounds so far. My granddaughter has full celiac and an auto immune disease called der-matomyocytis. (She is doing fine and very healthy).

October 15, 2013 at 11:07 pm
(50) Keke says:

I have been gluten free due to gluten ataxia since March 2013. I’ve seen great improvement in my neurological symptoms, and noti.ced that although the neuro symptoms took about 6 months to get better, chronic constipation subsided within 4 days of going gluten free (a symptom I hadn’t even thought to be part of it).
If I get glutened, I sometimes notice speech problems or increased sporadicneuropathic pain – but never anywhere near what it was – starting in October 2012.
Last week while preparing for Canadian Thanksgiving – I slipped up and after several small glutenings, I ended up not thinking and eating 2 saltine crackers yesterday. Today I had the worst acute attack of constipation – it felt like my intestines had just stopped working. The pain was excruciating, and strangely I had stomach flu-like symptoms – chills, weak legs, aching joints all over etc – but I had to force my bowels to move. I never want to experience this again!

November 10, 2013 at 4:38 pm
(51) Sarikali says:

Female, 28, Caucasian (In case these statistics matter)

Unfortunately (or fortunately, depending on how you see it), I self-diagnosed myself with wheat-intolerance. Ever since my stomach stopped hurting everyday after being on a gluten-free diet for 2 weeks, I had been avoiding it. I’ve been on this diet for 2 years now.
I had never been quite sure of the level of my Gluten Intolerance was… until I decided to Cheat.
(Stupid me) one day because I was tired of being overly watchful, I decided to eat a Sub at a fast-food place. Just on a whim.

3 hours later; Fever, joint/muscle pain, restlessness and disorientation (the world was spinning). It took hours for me to break the fever and be able to finally go to sleep.
I took antihistamines and some Ibuprofen (symptomatically) but its only once it digested out of my system that it subsided.
The next day, I felt out of it. But I could function.

November 16, 2013 at 3:02 pm
(52) Doren says:

The GI required that I do 2 gluten trials to test if I had celiac disease. During my gluten trials of 3 weeks each, and 3 times a day, over 5 months, I was so sick I lost 20 pounds. After the GI tests, my blood and intestines did not evidence celiac disease. I was told that I might be gluten intolerant, but did not have evidence of disease. So, I cheated here and there as I got better, not noticing the ongoing damage. For me, the first symptom is anxiety. The second is hot flashes running down my arms. This is always the case. I then get nauseas and have bathroom trips with loose bowels for as long as it takes to crap it all out. I feel fatigued, irritable, stressed, depressed, and foggy for a week or so after a glutening.

IMPORTANT – my new doc who has some expertise in celiac, told me that the GI test is not valid because it only tests one portion of the villi. You can have celiac and not yet have destroyed intestines. I want to scream and shout at the five previous docs and the GI who all told me that I did not have celiac. This doc said follow the symptoms, stay off of all gluten. I thought I might be crazy because of the extreme anxiety attacks. I’m not!

What helps me most to recover, is green shakes. When eve I shake strongly for a few days. I usually use rice milk, coconut milk, hemp protein powder (since I can’t do dairy or soy), and kale, spinach, or any other leafy green for breakfast. I may also use celery, lemon, oranges or other sweet fruit, kale and honey in a juice. I have noticed a clear and faster recovery process with the greens. I also recommend coconut oil in a spoon every day. It helps calm my stomach and intestines. I drink a tea of cedron (spanish herb – i dont know the english) with mint and lemon grass. I make a big pot and then drink it cold or hot all day. It really helps with my nausea when recovering.

November 26, 2013 at 12:46 pm
(53) Patsy says:

I’m hoping someone has experienced these symptoms and can help confirm that I may have been “glutened” by making cookies with regular flour, not gluten free flour. I was asked to bring a few desserts for Thanksgiving dinner and decided to make some GF items and some regular treats for all to enjoy (I’m the only one on a GF diet). After cooking, literally all day, with regular flour I seemed to be fine. Today, I am so dizzy and nauseous, I can barely stand up. I’ve actually considered going to the ER, afraid I’m having a stroke or some type of brain problem. Is it possible to have this severe dizziness after baking with regular flour?? I didn’t eat any of the cookies. I have been GF for about one year now and have never had this type of reaction.

November 26, 2013 at 5:07 pm
(54) celiacdisease says:

Hi Patsy,

Yes, you sound as if you were glutened. Flour flies up in the air when you work with it, and breathing it is enough to make you SICK, unfortunately. See:

<a href=”http://celiacdisease.about.com/od/Coping_with_Celiac_Disease/f/Inhaling-Airborne-Gluten.htm”>Suffering Symptoms from Airborne Gluten</a>

for more details.

If your symptoms persist beyond a few more days, then you should get checked out. But it does sound as if the baking was to blame. Feel better soon!

Jane A.
About.com Expert on Celiac Disease and Gluten Sensitivity

January 6, 2014 at 12:55 pm
(55) Suzanne says:

I have been gluten free for 5 years and dairy free for 4 as I also have a problem with proteins in diary. They are very similar to gluten protein and are an issue with some people. I suffer mostly from joint pain and it will kick in about 3 days after ‘accidentally’ ingesting gluten. I am writing today with a big warning about something I learned the hard way. I stopped baking ‘regular cookies’ for my husband 2 years ago as I was sure the flour ‘dust’ was causing me a problem. Last month we did some home renovations and I became very ill. Into emergency twice with joint related issues and almost 4 weeks of agony. I was making myself crazy trying to figure out what I could have eaten. Then I read an article about drywall and plaster dust containing wheat as an ingredient. I would never have even thought to look these up. So I am passing this on as a warning. If you are doing work around your house or can’t identify what your source may be, this could be the cause. TAKE PRECAUTIONS.

January 22, 2014 at 1:14 pm
(56) Stacey G says:

I have been reading a lot about people having reactions and feeling as though they are being gluten contaminated unknowingly. Corn has gluten. It is a different form of gluten, but for some of us…myself especially, corn products will cause the same abdominal distress, joint pain, mind fog, etc as other gluten containing products. I cannot have any gluten free products that contain any kind of corn starch or corn products. Something to think about.

I was gluten free for about 6 months and feeling so much better. Then my symptoms began to get bad again. I was cooking my own meals except for having Van’s gluten free waffles and eating the gluten-free multi-grain chips (I love them, they taste so good.) The brain fog came back with a vengeance, I was out of work for 7 days unable to walk or move my arms above my waist, my ankles swelled…very bad time. I was put on steroids and tested for all the auto-immune disorders and lyme, and also gout….all came back negative. Then I went into steroid-pyschosis so I could no longer use them to help with inflammation (I’m also allergic to all anti-inflammatory drugs.) I researched a “true gluten-free” diet and learned about corn. I feel so much better since eliminating it from my diet as well.

February 1, 2014 at 7:25 am
(57) Colette says:

I’m sorry to read that all of you have such horrible reactions, and also relieved that I’m not alone. I now live in a self-contained apartment, with no gluten allowed on the premises. I have been glutened so many times since I was diagnosed 13 years ago! Every time, it’s a struggle back to health.

I now prepare my own food, mostly from scratch, and have a range of fab-looking/functional lunch sacks, thermoses, and Tupperware to carry my food in. Saves me money and the risk of getting sick again. I do go out to eat, but not often and never if I’m feeling run down. With efficient prep, freezing in single serves and use of modern appliances it doesn’t take too much time. And I know what’s in it!

February 3, 2014 at 9:17 pm
(58) Deberah Kearns says:

Yesterday I forgot to read the label on a coffee substitute (Caf-Lib). Drove home after drinking it-about 20 mins and experienced severe bloating, and gut discomfort. I awoke with cramps around 2/3 hours later. Do I ever regret drinking the stuff, as I feel awful today!

March 2, 2014 at 9:23 am
(59) Tanya says:

I was diagnosed with Hashimotis at the age of 13, and was NEVER told by any doctor that I saw that I should be careful with gluten. I accidentally came across an article last year that said you should be on a gluten free diet with Hashimotis.
It is very overwhelming when you first start researching, and you never know where you are going to come across it, especially when you know little about it and where to find it.
I found a great protein shake that is gluten free, and comes in a ready to drink can, so I carry this everywhere for those times that I am not sure if I can avoid it.
It is even safe for children, so this has been a blessing for me as well as for my friends that have children suffering, plus it is sooo convenient.

March 29, 2014 at 4:15 pm
(60) Davine says:

I’ve recently found out I have celiac and since then my life has been a living hell. I feel like I cant eat anything or go anywhere without having to explain why I cant have something or worry about cross-contamination! ( which for me is a big one) and to top it all off my boyfriend of a year thinks I have Munchausen and have made this all of in some desperate attempt to get attention…..Who would spend their lives as a “glutenoid” for no reason. But of course no one will ever understand unless they have experienced the symptoms I have from eating just 3 small squares of cheese from a lunchable (yes it contains wheat)….This is exhausting and at times overwhelming..but I guess if I want to live GF is the way to be! Good luck to all of those recently diagnosed celiacs…..You can do it!

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