What happens when you get a little gluten by mistake?

So I know this belongs in general chit chat, but since it only pertains to us gluten free folks I thought I'd put it in here.

What symptoms do you notice when you accidentally ingest some gluten? Be as graphic as needed. I'm almost a month into a GF lifestyle and had planned a challenge for around 8 weeks. However, I was at 2 separate Easter dinners where I didn't cook. Driving from one to the other all the sudden all of my joints started aching. SUPER bad. I've noticed a bit more gassiness tonight, and about an hour ago I started getting ANOTHER migraine. I know there was some gluten in the potato dish at the second party, but didn't ask at the first. Since I have fibromyalgia and typically get the brush off from my family doctor, I'm really exploring this gluten intolerance thing with my chiropractor and Chinese medicine practitioner. AKA I have not had any testing done. I am considering the ALCAT testing once I can figure out which arm and leg to cut off to pay for it.
I just want to feel better, am I crazy?

Don't know about the US but in Australia when I got sick they sent me for a blood test. Blood test came back Celiac, doctor explained to me to not consume gluten again.

For me I think it started as gas and as I did more damage before being diagnosed, it led onto getting the runs really bad and extreme pain in my intestines.

I know some people that get migranes but I haven't had that.

mcbethenstein said:

So I know this belongs in general chit chat, but since it only pertains to us gluten free folks I thought I'd put it in here.

What symptoms do you notice when you accidentally ingest some gluten? Be as graphic as needed. I'm almost a month into a GF lifestyle and had planned a challenge for around 8 weeks. However, I was at 2 separate Easter dinners where I didn't cook. Driving from one to the other all the sudden all of my joints started aching. SUPER bad. I've noticed a bit more gassiness tonight, and about an hour ago I started getting ANOTHER migraine. I know there was some gluten in the potato dish at the second party, but didn't ask at the first. Since I have fibromyalgia and typically get the brush off from my family doctor, I'm really exploring this gluten intolerance thing with my chiropractor and Chinese medicine practitioner. AKA I have not had any testing done. I am considering the ALCAT testing once I can figure out which arm and leg to cut off to pay for it.
I just want to feel better, am I crazy?

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My wife has celiac, and aching joints was one of her big symptoms before she realized she couldn't eat gluten, as well as migraines, digestive problems and rashes on her forearms (dermatitis herpetiformis). If she accidentally eats something contaminated with gluten, she usually notices the rash first, followed by digestive problems and potentially a migraine, depending on how much she ate. What you're experiencing could easily be celiac disease, it's pretty congruous with what a lot of celiac patients describe. There's a big difference between celiac disease and gluten intolerance even though they can look the same symptomatically. Can you find out if anything you ate at the first party may have had gluten?

When you talk about doing a gluten challenge, are you talking about the process of avoiding gluten for eight weeks, or do you mean that you were planning on doing a gluten challenge after the eight weeks without gluten? I think a gluten challenge, where you eat a lot of gluten and undergo blood tests and potentially a biopsy is probably a good idea. You would need to pursue that option with your primary care doctor.

An elimination diet is a reliable way to identify food sensitivities/intolerances without undergoing expensive testing (i.e. eliminate all of the major allergenic foods and reintroduce them slowly). In any case, I hope you understand that its really important to differentiate between celiac disease and a gluten intolerance.

I hope this post is helpful and doesn't come off as pedantic. I'm not trying to to give you a bunch of unwanted information or tell you stuff you may already know. The thing is there is a lot of misinformation about celiac disease and gluten intolerance, and I've seen several celiac patients who've been really badly misinformed by their health care providers.

Good luck!

My chriropractor gets severe migrantes for a day when he has gluten. (I keep trying to remind myself to send him some beer.) And he'll mostly avoid it but says he can handle a day of migranes to have something with gluten as long as he prepares for it and has that day off.

As for me, I didn't get tested, but after reading details tried the elimination to see if it would help and what gluten would do afterwards. As my reactions, food won't digest correctly for a week, execma/rashes, followed by trouble focusing and comprehending for a week or two after the indigestion. There also appears to have been some long term dental effects that made it easier for me to get tooth decay according to my yearly dentist results.

Another person I know gets joint and muscle aches.

There are many doctors who aren't aware of the gluten intollerances/celiac and there are quite a few stories like spagyric mentions where some patients go from doctor to doctor and even get negative results for anything and everything they test for, including gluten tests, before ever trying gluten as the trigger.

So I did some reading last night and found that gluten can be in deli meat. Didn't know that one. I ate a bunch of ham and roast beef at the first party.

As for a challenge. I was planning to eat gluten on say a Friday night and note any symptoms over the weekend to see if it makes a difference. But at only 4 weeks out I was just starting to feel better.

mcbethenstein said:

So I did some reading last night and found that gluten can be in deli meat. Didn't know that one. I ate a bunch of ham and roast beef at the first party.

As for a challenge. I was planning to eat gluten on say a Friday night and note any symptoms over the weekend to see if it makes a difference. But at only 4 weeks out I was just starting to feel better.

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Deli meat is a pretty rare one. I wouldn't worry about that one too much. Anything that someone made with sauce is a much more likely suspect, especially homemade sauce.

Also soup, or things that are soupy.

People love to arbitrarily add a bunch of flour to those things.

a little gluten and i have the 'squirts' the next day and my food doesnt really get digested. i also wont be able to comprehend or think clearly for a day or two either. theres usually a migrane in there too.


a lot of gluten and i get what i have self named "the purge", since being GF its become worse the longer i go between strong glutenings. between 1-6 hours later, the gas comes on fierce, like a m-fing motorboat. this goes along with extreme abdominal pain, laying on the floor fetal position like and this usually lasts 12+ hours. at onset of abdominal pain the purging begins, both ends until theres nothing left and then some. next day begins the depression, anxiety, lethargy, no appetite, no short term memory, 24 hour migrane. all of it starts strong then tapers off over the next several days

I'm on day 3 of the most severe joint and muscle pain I have ever felt, and it's all settled in my right shoulder and neck area. I can't pull myself up from lying down without wanting to cry. I saw my chiropractor and acupuncturist yesterday and STILL feel horrible. I may go to a walk in clinic for an X-ray, since my primary has no appointments (no surprise there), but I don't think anything is broken or even pinched, I'm just really inflamed! This really sucks. I took the week off to play with the baby, and was hoping to search for some buckwheat to try malting...

in all honesty, and ive talked to my GP about it. the only thing that takes the edge off the craps and migrane is a half to a whole vicodin in combo with a peppermint extract gel cap to settle the stomach. only side effect of the peppermint is that every bodily function smells like peppermint. i find it humerous. pee peppermint, crap peppermint, sweat peppermint, ALL OF IT.

i get joint pain, but i guess not to the extent that you do. i hope you feel better over the next few days. malting would be a good thing, distraction helps too.

I would say there is your challenge and the gluten failed you. I had a very hard time with the diet at first, but after a while you get used to it, and there are A LOT more gluten free items on the market than when I first started. My symptons are as follows:
severe diarrhea, gas and cramps in my stomach, depression, foggy brain, and just general feeling of crappiness. So a lot like Dirtbag... however, since going gf I have not had a lot of gluten, but even a little will set me off. And man it really smells like acid.

It took me 3 long months on the diet before I started to notice a difference, and then 1.5 years to get back to what I call normal. At first I could not tolerate much as my stomach healed (just rice, chicken or fish, green beans, and other pretty mild foods). Then after a few months I could add a few more things into my diet, like choc chip cookies (only a few tho), and potato chips. It was slow going for me, but well worth it.

And I am extremely lucky that my wife likes to bake and has adpated many recipes containing gluten into gf recipes. She makes some very very good buns that I put lunch meat on, and she also even made a GF cheesecake (with goat milk too). At my worst I was down to 113 lbs when my normal weight should be 155-160. I am finally back up to around 155lbs and I feel great, except when I get a little bit of gluten. Then I am down for the count for about 6 hours.

mcbethenstein said:

So I did some reading last night and found that gluten can be in deli meat. Didn't know that one. I ate a bunch of ham and roast beef at the first party.

As for a challenge. I was planning to eat gluten on say a Friday night and note any symptoms over the weekend to see if it makes a difference. But at only 4 weeks out I was just starting to feel better.

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Most if not all Oscar Meyer lunch meat is GF. Most foster farms lunchmeant is gluten free. You basically have to research everything you eat. I even use shampoo and soap that doesnt have gluten in it. There are lots of good sites out there that will help you with commerical foods that are gf.

andrew i was right there with you. over 6 months i went from 150#, eating 5000calories a day, down to 115# then i was diagnosed via blood test. the idiot PA's here at my school said to try the diet and they never even though to have me get a endoscopy. i started feeling better..ish after 2 weeks, ie foggy brain clearing, depression subsiding. during that initial healing stage even the slightest trace of gluten would send me into the purge. its taken me 2 years to come back up to 140# and its hard to maintain that. but now if i get a trace of gluten i dont go into the purge im just a bit S....ty for a few days. but traces over several days compound.

every person is slightly different in how they experience the effects of being glutened. read every product ingredient list. there are references out there too. the GF shopping guide, theres phone apps, lots of GF commercial products. you can even try looking for a support group, ive joined one that has recently started here in my town, we get all kinds of free samples, tasty treats, and its a place to talk about 'safe' restaurants, i pass off beer, they hook me up with baked goods. and its nice to not feel so alone with a challenge.

My wife is the GF in the family. She did not show any signs until her Stroke. Her blood thickened and she started clotting.

No that she is over 3 years Gluten free she now gets squirts or throws up depending on the amount if something "glutenized" her. Atleast now she shows signs not just builds up to toxic levels before detection

So, my test came back that I am NOT intolerant of gluten, but am intolerant of a few things that I have been eating regularly. Curry, egg yolks, blueberries, strawberries and olive oil among others. The test also came back with a huge list of foods I am mildly intolerant of... Hops included, but the nutritionist indicated that a long list like mine indicates leaky gut syndrome, and with time to heal I should be able to eat the mild intolerance foods without too much trouble later on. So I can drink a regular beer again without having to worry too much. My reaction on Easter was likely from the deviled eggs and strawberries I had. I may still brew the GF sweet stout I was planning. I have all the ingredients already. Sadly this means the GF Blueberry Weiss is probably not going to help me feel better!

Good for you. Have a slice of cake but don't let me know, I'mma jealous.

I'd caution you though, not to eliminate it as a possibility. Most of the allergies are in combination with people who have to be gluten free, and many people only figure out that they have to be gluten free by going on the gluten free diet for an extended period of time. There are many stories about people being tested negative time and time again. People who are intolerant often don't show up as testing positive for the allergy either.

Elimination diets and food journals tend to be the main way people figure these things out, since there are people who have had multiple endoscope tests who came out negative through the test. http://www.webmd.com/allergies/allergies-elimination-diet Other tests include http://www.celiac.org/index.php?option=com_content&view=article&id=7&Itemid=13

In addition, leaky gut tends to be a "well.. it's something" diagnosis that doesn't mean too much, other than you're allergic to something. Meaning that something you eat causes your intestines to react and allow increased permiation, introducing allergens into the bloodstream, rather than blocking. (Gluten intolerance/allergies contribute to leaky gut.) Here's something from DrWeil http://www.drweil.com/drw/u/QAA361058/what-is-leaky-gut.html. Not exactly my most trusted source of information, but it was easier to pull his link than other sources.

Also, some searches about the alcat test doesn't bring up much info about it and how accurate it is in its diagnosis, so you'll want to consider that too. http://en.wikipedia.org/wiki/Antigen_leukocyte_cellular_antibody_test (Yes, I know it's just wiki, but at least it cites references).

Testing is always a good indication of whether or not you have a gluten sensitivity. if you are gluten sensitive and you ingest some your body creates an immune response (releases antibodies). These antibodies act in your body like assassins with poor facial recognition and a bad sense of direction. they attack all kinds of tissues in the body, which is why we see symptoms range from joint pain, to mental fog, to skin irritations, etc. The best lab for gluten testing that I know of right now is a lab called Cyrex labs out of Arizona. Most tests only look for a sensitivity to alpha-gliadin but Cyrex is looking at I think 10 or more different forms of gliadin (the actual name of the protein that Gluten-sensitive people are sensitive to). They also have a cross-reactivity panel that test other foods such as Oats, Quinoa, Millet, etc. One thing that must be remembered when doing a sIgA test for anti-gliadin antibodies is that the Total sIgA must be within normal levels to avoid a false negative.

Interesting. I was having these same problems a few years back, so I went on a GF diet for a year - then decided I wanted to be certain and take the test.

I "challenged" my gut for 2 months, which was extremely painful (with all the same signs/symptoms you guys posted basically), then went back in, they did the test, and it came back negative (no celiacs)? So they did an endoscopy, and since my gut had healed over the year, the villi hadn't yet become damaged. They even did a skin allergy test, and nothing. At that point i gave up, and went back onto the GF diet; and my health improved vastly (as you guys probably know). In any case, I am 100% certain, from my own tests, that the ONLY thing I have a problem with is gluten. Plus my Dad tested positive for celiacs and its genetic.

Its been 2 years since, and these days I am so sensitive to gluten, a single crumb from a jam jar, or a sip of regular beer has be done for days. My point is, I think the tests can fail if you were on a prolonged GF diet beforehand, or maybe they require a longer challenge.

Yeah, testing and results are a wierd thing. And really, other than being able to proudly point it out on our medical record and possibly use it as a tax deduction for US taxes (where we have to be buying enough gluten free food to make even worthwhile to be put on our itemized deductions vs the standard deduction, and limited to 2% anyways. It's also only the expenses over what it costs for normal food. Like a loaf of bread costing $5 instead of $3) there's very little point in being medically tested if we can tell based on our own experiences.

Other than beer, my overage on gluten free expenses is usually under $20 a year. And I don't have enough other expenses to make it worth trying to itemize. I haven't tried computing in the overage expenses for the beer... that could be confusing and scary. You know: Well, because I can't have normal beer, I had to make my own gluten free beer, thus all these expenses...