Glutenized By Something Non Gluten

[175comet]

I'm 5 weeks into the gluten free diet but now I'm not 100% sure it's gluten that is the problem or at least the only problem. My symptoms were just neurological in nature. All neuro tests were negative so I tried gluten free simply to get healthy ... only to find out gluten might be the actual culprit. Prior to the diet, my stomach was generally ok although dairy did bloat me. NOW that I'm on the gluten free diet I get bloated at least a couple times per week. Just a tiny mistake with wheat and my stomach is super bloated, I have stomach pains as well as numbness/tingling. So I think the gluten is at least part of the problem.

Question... on a couple occasions I have been fairly positive I have NOT had gluten. In fact I had a restaurant serve me a gluten free meal ordered directly from the chef. So perhaps I have other sensitivities. But if I ate something else (suspects are, onions, garlic, msg or soy), would these items cause more neurological symptoms? Or will it only be gluten that causes the neurological symptoms? And why is it that I'm only super sensitive now to these other foods that never caused me any stomach problems before?

And how do I narrow down what my other sensitivities might be? It's so frustrating because the bloating lasts a few days. After 1 bad meal, then every meal leads to real bloating for about 3 days. So it's challenging to figure out what other foods are the problem.

Thanks! I really appreciate getting knowledge directly from the people who have experienced this.

[kwylee]

My symptoms/reactions were totally neuro too, and I quickly found that I had to completely and strictly eliminate all dairy and soy - someone told me that it was the similar protein makeup of the three foods that my body rejects. I had already eliminated msg and most food additives/colorings years before while I was still in search mode as to why I was always so dizzy and foggy. And while removing additives did make me feel better, it wasn't until I went gluten/dairy/soy free that I felt normal again. Dairy and soy even in trace amounts make me just as dizzy as gluten. The feeling is exactly the same, and I've become a champion label reader, however most of my diet consists of meat, vegetables, fruits, some rice and potatoes, homemade dressings, etc., but you may not be as sensitive as I am, or your triggers may be different.

I would suggest keeping a strict food diary - what you ate and the TIME, what your subsequent symptom is and the TIME. So important, because for some it takes a day or two to feel a result. I am lucky. I can eat something and know within minutes if I get that spaced out lightheaded feeling. Handy whenever I try a new food. It's been about 16 months since I started with the gluten-free/DF/SF lifestyle and I have noticed that my digestive system is much more delicate. I used to (shamefully) overeat all the time prior, but now I really can't otherwise I'll feel especially heavy and not my best, which should be no surprise. But so far, it's just those 3 culprits that make me dizzy still.

[Bubba's Mom]

Soy and MSG give me neuro symptoms. Restaurants love to use soy oil and MSG. Pre-DX I found I got ill after eating a meal out, when MSG was used in the meal(especially in meat seasonings). Chefs love the stuff because it causes a chemical reaction in the brain that makes you think anything you eat with it tastes delicious.

So...you could have more than just a gluten problem. It's also possible that trace gluten got into your restaurant meal? If tongs were used that had been used on breaded items, cutting board, spatulas, serated knives,non-stick cookware, etc. used with gluten items were used on your gluten-free meal..bingo!

If you suspect other intollerances keep a food log. Write down everything you eat, including brands or where it was from, and note any symptoms you have. Symptoms can be immediate or have a day or two delay. Having that log helps you trace back to the offending item.

It took me a couple of weeks to figure out that soy was getting me. It was the food log that helped me discover it. That stuff is in even more things than gluten!

[dilettantesteph]

The more sensitive among us can't eat in restaurants. Was the chef well trained in gluten free cooking? Did he use separate pans? Wash his hands first? Make sure any cutting boards or counters he used were well washed?

You could easily be suffering from gluten cc if you are sensitive to lower levels. Or, it could be something else, as you suggested.

[175comet]

Just when you think you are going crazy, someone makes sense of your misery. Thanks for the replies. The resturant gave me ground beef with gluten free taco chips for a taco salad. But the toppings were on a buffett (grilled onions and lettuce). So either #1 something could have been contaminated or #2 there could be soy or MSG in the meat spices. I also get an immediate neurological feeling. It get a feeling of vertigo, then a muscular twitch (myoclonic twitch) then I was nausious. The bloating happens within about 20 minutes and lasts for about 3 days.

I've been so guitly of eating out over the past 3 years so I guess I just need to cut this out, at least until I know what to avoid. Thanks for the help!

Next question.... so the diet seems to be leaning towards gluten intolerance/celiac ... should I keep up the diet or go back to gluten and get a biopsy. In other words, if I have to go back on wheat to get the biopsy, is it more painful to go back on it now or in 6 mths after I'm totally free of gluten? I have neurological symptoms so I feel like I need a formal diagnosis to eliminate any other serious conditions (next neuro appt isn't until March 2012).

[mushroom]

If you really feel like you need an official diagnosis, then go back on gluten now, don't mess around for six months. The longer you are gluten free or gluten lite, the worse your reaction to resuming gluten will most likely be. For some reason, once your body has had a bit of a rest from gluten it reacts to it with renewed vigor Unfortunately, you need to be eating a full gluten diet for 2-3 months (equivalent of 3 - 4 slices of bread a day) for a valid test.

[Bubba's Mom]

CC is tricky. In the meal you had..the onions could have been cooked on a griddle that also had made a grilled cheese sandwhich? That could get you.

Lettuce could have been cut on a cutting board that had bread cut on it,the seasoning could have had a wheat ingredient. Some do, some don't.

The gluten free chips could have been cooked in a deep fryer that also cooked onion rings, or other breaded items?

If you're eating your meals out you are much braver than I am. There's so many ways to get CC it's scary!

I still think it's a good idea to keep a food log if you aren't sure what's getting you?

Whether you get the testing for an official DX is up to you. If want to be tested..start eating your gluten now rather than wait. If you find you can't eat the amount of gluten needed to get accurate blood tests, I think you'll have your answer?

For me..an official DX was important so that I'd stay on a strict diet and never cheat. It also helped my family take it more seriosly.If having a DX would help you in work situations or for your own piece of mind..pursue it.

[kwylee]

Next question.... so the diet seems to be leaning towards gluten intolerance/celiac ... should I keep up the diet or go back to gluten and get a biopsy. In other words, if I have to go back on wheat to get the biopsy, is it more painful to go back on it now or in 6 mths after I'm totally free of gluten? I have neurological symptoms so I feel like I need a formal diagnosis to eliminate any other serious conditions (next neuro appt isn't until March 2012).

This question of resuming gluten for testing doesn't have an easy answer for some and all comes down to whether or not you really need an official diagnosis. Problem is that there is no guarantee that you'll get the answers you need through biopsy - it can still come back negative for Celiac even if you are indeed intolerant to gluten. So whatever you decide, I'd keep that in mind down the road if all the other neuro tests are negative.

[175comet]

So biopsy isn't 100%? I thought I read it was the "gold standard". Frankly that's the problem with ALL the neurological testing I've done - most are not 100% certain (eg. blood tests for Lupus, Lyme). The tests just increase or decrease the liklihood. Maybe the best bet is to go on real and true elimination diet or a raw food diet to remove ALL possible sensitivities. Then I can add back in to see what I have problems with. So I guess I moved from: newbie- stage 1 gluten-free-diet... to stage 2-super-serious-diet. Ahhh no more convenience food of any kind and no eating out!!!

In the end, even if I have another disease, a diet free of gluten and unnatural additives just might cure me anyway.

[ravenwoodglass]

Neither the biopsy or the blood test is 100% accurate. In fact the false negative rate is 20 to 30%. It can take a while for neuro symptoms to resolve and that fact that you are now having digestive issues when you consume gluten is significant. So if you really feel you need a doctors diagnosis then do go back to gluten for a good 3 months or more but be prepared to still have negative results.

[GFinDC]

The endoscopy should take several samples, I think they say 5 to 7 now. They can only reach the first section of the small intestine for samples, that leaves most of the 22 feet of small intestine untested. So you could have damage just around the bend as it were, and they wouldn't see it.

An elimination diet is a good idea, if you are not going to do the celiac testing. And then even if you do the gluten-free diet, an elimination diet can help identify other food intolerances.

[astrologer50]

If you really feel like you need an official diagnosis, then go back on gluten now, don't mess around for six months. The longer you are gluten free or gluten lite, the worse your reaction to resuming gluten will most likely be. For some reason, once your body has had a bit of a rest from gluten it reacts to it with renewed vigor Unfortunately, you need to be eating a full gluten diet for 2-3 months (equivalent of 3 - 4 slices of bread a day) for a valid test.

I hear what you are saying BUT I would end up vomiting every day, I simply wouldn't have a life except with head over a toilet. How you get round that one for 2/3months???

[mushroom]

You do what I did and skip the diagnosis bit....

[anabananakins]

I tried for an official diagnosis but 4 months of bingeing on gluten still = negative blood tests. But I felt remarkably better 3 days gluten free (and never looked back) so I obviously had a problem with gluten. The gluten challenge would be far less painful it actually worked for more people