What was it like before going gluten-free?
April 6, 2012 11:48 AM   Subscribe

GlutenFilter: Prior to going gluten-free, did you have specific gluten attacks, or were you just generally in pain all the time?

I've had chronic GI issues my entire life - abdominal pains, bloating, gas, constipation - but it wasn't until recently that I started to have persistent joint and muscle pains that I decided to go see my doctor. He suggested trying a GF diet for a month, but told me that tests aren't very reliable for non-celiac gluten sensitivities.

I've yet to start the diet, b/c looking back at the foods I eat, and the reactions they trigger, I can't make a compelling connection with gluten. For instance, I play poker every Thursday night and drink a lot of beer (way more than I'd usually have on any other night), yet I don't feel any worse the next day. Same goes with having a particularly gluten-y lunch, like a sub sandwich with pretzels. No immediately or delayed reaction... I just feel the same amount of crummy.

So I'm wondering if I should take my personal experience into account, or if, perhaps, I do have a gluten sensitivity and my body is just fighting it constantly, and not showing signs of attacks or flare ups.
posted by bjork24 to Health & Fitness (24 answers total) 4 users marked this as a favorite
What is the downside to going gluten-free for a month? Just that it's a pain?
posted by brainmouse at 11:51 AM on April 6, 2012 [1 favorite]

Convincing myself that it's a possibility, basically. If I'm not fully convinced that it could be gluten sensitivity, I'm not sure I can get my body to respond positively to the diet.
posted by bjork24 at 11:59 AM on April 6, 2012

I had migraines weekly for more than 30 years. Quit gluten a year ago and have had 3 - fairly minor ones since. Join pains lessened as well. I wasn't able to link gluten to specific episodes of feeling crappy but feel way better since I quit eating it. I had kept a log trying to identify migraine triggers a long while ago and gluten never occurred to me. Does that mean you'll feel better giving it up? Maybe, maybe not but if it is the trigger for your woes you'll feel better with or without belief being required. Did you get a blood test for Celiac? It's worth doing while you're still eating gluten since you're describing symptoms that often do indicate Celiac disease and not just gluten sensitivity.
posted by leslies at 12:06 PM on April 6, 2012 [1 favorite]

Our basic standard diet has so much wheat in it that it's all but impossible to directly associate specific sandwiches or beers with specific reactions. I discovered I probably had gluten sensitivity because I experimented with the paleolithic diet a few years ago. One day I got out of bed and it suddenly hit me: NOTHING HURT. I had gradually been getting accustomed to the idea that I'd be stiff and sore a lot, especially in the mornings – my mother had warned me that "as you get older you simply have to get accustomed to a lot of aches and pains."

I had not done the paleo diet because of the pains – I hardly acknowledged them – but boy was I happy when I found a way to get along without them. It's persuasive. I felt years younger and still do.

You don't have to go full paleo to omit wheat from your diet, although there may be helpful stuff on some paleo pages. Since there are no strict medical tests for what you're doing, you'll have to experiment – is it just standard wheat that bugs you, can you have spelt or kamut, can you manage oats or barley or not? But you need to exclude bog-standard wheat from your diet for a month before undertaking any further experiments.

Luckily for you, gluten-free products are getting more and more common. A store near me even carries a few gluten-free beers.
posted by zadcat at 12:07 PM on April 6, 2012 [1 favorite]

"abdominal pains, bloating, gas, constipation"
What more "signs of attacks or flare ups" do you want???

They make gluten-free beer, they make gluten-free pretzels, bread, pasta, cookies and what not. You can still maintain your lifestyle and overall eating habits.
posted by travelwithcats at 12:08 PM on April 6, 2012 [1 favorite]

I only get flare-ups if I eat gluten when I haven't touched it for at least a week or two. If I'm eating it pretty much all the time, the quantity doesn't really seem to matter - I just hurt all the time.

The difference when I go off of it for a couple weeks, though, is striking - striking to the point of getting me off a bunch of fairly hefty meds. I usually recommend this as sort of the nuclear-grade "so you feel crummy and it may be because of food sensitivities" 30-day test, (after which you play around with adding stuff back in) but you can do it the other way around, too.
posted by restless_nomad at 12:24 PM on April 6, 2012

It's not just that tests for non-Celiac gluten sensitivity aren't reliable -- they don't exist. If someone tells you they're selling such a test, they're lying.
posted by imagineerit at 12:25 PM on April 6, 2012

It's not just that tests for non-Celiac gluten sensitivity aren't reliable -- they don't exist.

IgA and IgG food sensitivity tests are controversial--in terms of their accuracy and clinical relevance--but they do exist, and my doctors (real MD doctors, including two who teach at very fancy medical schools) find them helpful in the early stages of assessing food allergies. Of course, elimination diet testing remains the gold standard.
posted by Sidhedevil at 12:34 PM on April 6, 2012 [1 favorite]

I'm the same way with (an apparent) MSG sensitivity. I avoid it when I can, but sometimes it slips in. It usually won't bother me that same day, but creep up about 24 hours later. Only if I've already gotten dosed recently will I notice a more immediate reaction.
posted by gjc at 1:07 PM on April 6, 2012

Not much to add here, other than you should ask for the TTG test now anyway, as it will at least tell you if you have celiac. And, if you don't, you won't have to go back on gluten for months (and endure agony) if you want to check for celiac later.
posted by Chaussette and the Pussy Cats at 1:44 PM on April 6, 2012

If I'm not fully convinced that it could be gluten sensitivity, I'm not sure I can get my body to respond positively to the diet.

Think of it this way: if you are in fact gluten-intolerant, then the gluten is going along right now making you sick whether you believe in it or not. And even if you spend your entire life believing that gluten-intolerance is not the root of your problem, if your body can't actually handle gluten then you're just going to keep getting sicker and sicker. Belief really has nothing to do with this problem.

We're talking about bellies after all. Bellies aren't interested in the power of positive thinking. They aren't animals that you can train with cheese and a few kind words. You can't convince them with logical arguments. There is not a language barrier that you can break with some basic vocabulary and really good pantomiming skills. Bellies aren't interested in gods or art or music or philosophy.

The only thing you get to decide is: are you going to wait until your blind, dumb, hurting belly suddenly turns into a sentient being and can tell you in plain English what is wrong? Or are you going to accept that your body tells you all sorts of things every day and very few of those things are in the form of actual sentences? Something is clearly bothering your gut. Where is the harm in going off of gluten for a month? If it doesn't help, all you've lost is a single month of beer drinking. And if it does help, then you'll start feeling a lot better.

Also, yes, your symptoms sound exactly like mine before I stopped eating gluten.
posted by colfax at 1:48 PM on April 6, 2012 [2 favorites]

My anecdote:

For about 20+ years I was tired all the damn time, depressed, and always had gas & bloating.

Last year I started having on full on pain where it hurt to move. I finally made the connection of the gluten and stopped eating it.

Three days later I felt like a brand new person! I woke up in the mornings and I didn't feel like I was drugged, I had more energy, I didn't have gas & bloating 24 hours a day!

Give it a shot--it might be that quick of response for you too. I'm lucky where I can still eat small amounts on occasion and I don't feel terrible.
posted by Zoyashka at 1:54 PM on April 6, 2012 [2 favorites]

I have a rare form of gluten intolerance. It was not detected for decades until it made my life unbearable in the end. What I can tell you: Before I got diagnosed my friends always made fun of me because I really liked Budweiser beer. I often joked that I would volunteer to appear in an ad for Budweiser and recommend it. What I did not know at that time:

"However, while it is likely that most celiacs will be able to drink beer with less than 20ppm such as Budweiser or beer made with rye malt...".

So, unconscious I might have realized that this beer is better than other beers for me. Today I don't drink beer anymore. Yes, I know there is gluten free beer but I just switched to white wine.

The bottom line is: beer may not be a very good indicator for gluten intolerance!
posted by yoyo_nyc at 2:00 PM on April 6, 2012 [1 favorite]

"I'm lucky where I can still eat small amounts on occasion and I don't feel terrible."

If you understand what gluten intolerance means and the short term and long term risks then you should know that you really should not do this.
posted by yoyo_nyc at 2:11 PM on April 6, 2012

OP, did your doctor test you for celiac disease? (And did they do all the blood tests, not just one? Like here: http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets3_Antibody.pdf)

To answer your question, prior to going gluten free I had all of your symptoms. I also got lots of headaches, was fatigued all the time yet couldn't sleep well and generally my brain kept screaming at me "Something is wrong!" I wouldn't have been able to correlate eating something gluteny with feeling bad either.
posted by purple_bird at 2:20 PM on April 6, 2012 [1 favorite]

OP, this is honestly one of the hardest things about going gluten-free. Because gluten is so insidious (it's in everything!) and because the symptoms are so sneaky (as you point out), it can be really hard to convince yourself to stay off gluten. When I went off it a few months ago, people kept asking me if I "felt better" and that was hard to answer, because it was more about the lack of bad things, you know?

And going off gluten is hard enough that you really do want to know that it's going to make a difference. But if you are gluten intolerant, even if you aren't celiac, gluten can be pretty bad for your long-term health, so it's worth figuring out.

BUT if you do strictly go off gluten for a significant period of time (for me it only took a week, but you should try for 2 weeks to be sure) and then reintroduce it, that's a pretty good way to see if it has an effect on your body. Within an hour of having some banana bread, after a week off gluten, I was lethargic, congested and had heartburn.

So give gluten a rest for a week or two, and then, very consciously, eat something like a slice of bread. See how it affects you.
posted by lunasol at 2:51 PM on April 6, 2012

So I also had chronic GI issues and just general crumminess forever. I did the gluten elimination for a month, and felt much better. It's definitely takes some planning and label reading, but it's really not bad once you're in the habit of checking.

Echoing other posters, when I'm off gluten completely, I feel much, much better, and having one beer or one piece of french bread is definitely noticeable. When I'm not careful about what I'm eating, it's just the general GI stuff all of the time.

For me, having done the elimination diet and pinpointing what was causing the crumminess and now knowing that I can control how I feel is really, pretty great and empowering. Like, yes, the first Bells Oberon of summer is worth the aftermath. Sometimes I'm really careful and intentional about my diet, and sometimes I'm not, but I always know how to feel better.
posted by mcostanzo at 3:30 PM on April 6, 2012

For starters, go to another doctor or insist with your own doc to get tested BEFORE you go gluten free. And the sooner you get diagnosed, the better. If you develop celiac disease, there is no going back.

If you go gluten free and don't get tested, you'll have to get back on gluten to get tested etc etc. Assuming you are intolerant, you will become very keenly aware of the ill effects of gluten after you've been gluten-free.

My symptoms: fatigue, joint pain, muscle pain, headaches, chronic sinus infections, multiple food allergies and intolerance, etc. I had some GI symptoms, but they weren't all that bad compared to the other symptoms.

I thought my allergist was completely insane when he told me to try to stop eating gluten and dairy. But I was so sick at that point that I was willing to try anything. The first few days I went into horrible withdrawal (for real! it happens, look it up). But then it got much better.

I also kept a very meticulous food and symptoms diary for about two months. That helped a lot. Once I eliminated the foods that were bothering me, basically all my staples, I felt much much better.

Side note: have you heard of the FODMAP diet? Might be worth giving a try as well, or at least to consider while tracking your symptoms.

Good luck! Memail me if you have more questions.
posted by Neekee at 7:12 PM on April 6, 2012

Thank you all for the answers. I have a lot to consider.
posted by bjork24 at 8:41 PM on April 6, 2012

Diagnosed with Celiac over a year ago so I can only speak from the perspective that I actually have the disease, not an allergy.

For most of my life I was fine with gluten, and then maybe 4 years ago (after a completely debilitating intestinal parasite) I started having weird symptoms that didn't happen immediately after being glutenized. They rolled out slowly. So it wasn't that I'd eat pasta and have massive bloat and exhaustion the next day. Over time, it all built up into these symptoms:

exhaustion (I'd come home from 9-5 and immediately go to bed for the night)
massive abdominal bloating (I looked 4-5 months pregnant) and gas
chronic diarrhea
chronic stomach pain
iron-deficiency anemia
non-specific anxiety
tingling numbness in the hands
missed menstrual periods
itchy and flaky rash on my scalp.

I went to a lot of doctors and was treated for a lot of the symptoms until finally I asked for a gastro referral who checked for Celiac. And there it was.

In the few times I've since been accidentally glutened, my stomach extends out, I get exhausted and really cranky. It can take weeks to feel better.
posted by kinetic at 6:47 AM on April 7, 2012

Whoa, this thread may have just convinced me to try no gluten. This could almost be me:

"My symptoms: fatigue, joint pain, muscle pain, headaches, chronic sinus infections, multiple food allergies and intolerance, etc. I had some GI symptoms, but they weren't all that bad compared to the other symptoms. "

...and on top of that, I had serious wheat and dairy allergies as a kid. I outgrew them before puberty, but now I'm wondering if that means I'm more likely having a real gluten issue now? (I'm pretty confident it's not celiac; I haven't had a blood test, but I did ask my doctor about it when I had a colonoscopy, and he said definitely not.)
posted by instamatic at 5:33 PM on April 7, 2012

Instamatic - a colonoscopy looks only at your colon and Celiac damage shows in the small intestine so I don't know how your doctor could rule it out that way. The definitive look for Celiac is an upper GI endoscopy after bloodwork.
posted by leslies at 6:24 PM on April 7, 2012

Huh. You'd think I'd have googled that a long time ago. Interesting.
posted by instamatic at 5:56 AM on April 8, 2012

What got me going GF were big rashy outbreaks on my legs shortly after eating. Several people had suggested I try going GF and I had put it off for as long as I could. Problems cleared up.

But after being GF for a while, I noticed my overall physical state was much improved. My baseline went from 5/10 to 8. All sort of chronic problems (that I wasn't necessarily seeking to solve but had just accepted as how my body worked) cleared up.

So in my case, it was definitely worth the trial.
posted by wallaby at 2:12 PM on April 8, 2012

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