Abandoning a gluten-free diet
July 27, 2014 8:04 AM   Subscribe

A close relative is following a gluten-free diet. It's been two years and she feels the same as she did when she started. She's starting to think that maybe she's *not* gluten intolerant after all and got caught up in the hype. Have you or anyone close to you abandoned a GF diet? Did you/then wean back on or go all-in?

She's in her mid-60s. She's had a bum stomach forever. Two years ago after her best friend went GF and the author of the "Wheat Belly" book made his doctor-show rounds, she went GF. Her doctor said, "yeah whatever do what you want" which irritated me. She went to see a GI doc who said, "well if the diet makes you feel better than that's fine to do." She has never been violently ill from eating gluten products.

She lives alone and is not adventurous. So she's not grilling steaks and roasting vegetables or experimenting with various flours to make things work. Blog recipe links and cookbooks have gone unread. Her diet is ridiculously limited, and if something doesn't say GF on it - even if it is natually GF - she won't eat it. As a result, she's eating a lot of processed foods with GF labeling.

She has the same bum stomach issues (burping, acidy, etc) and is still taking Nexium for acid reflux. She lost a little bit of weight, but wasn't overweight to begin with. As someone close to her who receives regular unsolicited updates on her digestive health (yay) I can tell you there has been no difference.

But most importantly, she's unhappy. She misses regular food and is now wondering if she was even gluten intolerant to begin with. She wants to try going back onto regular foods, but doesn't know how to try.

Finally, if you are gluten intolerant, this is not an assumption that gluten intolerance is not real. My relative was never tested and didn't experiment with a smaller elimination diet before jumping into a GF diet with both feet. My questions are merely: Did you or anyone you know recently leave a GF diet? If so, how did they go about it, and was there any ill effects?
posted by kimberussell to Health & Fitness (30 answers total) 8 users marked this as a favorite
The gluten free backlash has begun. According to the Celiac Disease Foundation, only 1% of folks actually have celiac and need a gluten free diet.

I'm glad that your relative is beginning to think a bit more critically about this fad. If I were her, I'd go on the Processed Food Free diet :) I'm a big fan of paleo, with lots of fresh veggies, some fruits and lean protein.

My fiancee' went on the Wheat Belly Diet, and got ZERO results. She went paleo, eating the same things every day or a slight variation thereof, and had great results. There was zero problems or complications, she just did it one day, and kept on going.

I'm going to assume (even though I am not her doctor) that your friend could do the same thing with great results and no complications.

She's eating processed crap now, it can only do her some good to stop eating processed crap.
posted by John Kennedy Toole Box at 8:28 AM on July 27, 2014 [1 favorite]

Get her on the Pro-Biotic trend. If you get a good quality one, it does actually work. It would aid in her digestion and get her off of the nexium, which reduces stomach acid (the stuff you need to digest your food properly). My brother is trying the gluten-free diet. What he has found from it is that he is intolerant of several foods that he was eating every day. But, like your relative, he isn't adding other foods into his diet so he isn't feeling much better. He is now on pro-biotics and they are helping him.
posted by myselfasme at 8:46 AM on July 27, 2014 [1 favorite]

This article is somewhat helpful. It reinforces the idea that this gluten-free stuff is just a fad. http://time.com/2912311/eat-more-gluten-the-diet-fad-must-die/

I wonder why the Nexium isn't working for her if she's not overeating. Does she drink alcohol? A lot of carbonated beverages? Both of these can kick up the acid.
posted by Fairchild at 8:53 AM on July 27, 2014

Her diet is ridiculously limited, and if something doesn't say GF on it - even if it is natually GF - she won't eat it. As a result, she's eating a lot of processed foods with GF labeling.

This is likely a lot of her GI issues, regardless of anything else. If all I ate was Glutino pretzels and granola bars, and Amy's GF pizza, then I'd feel like crap too. :) You said that she's had a bum stomach forever... has she ever had a diet (mostly) free of processed food? You said she misses 'regular' food - what was she eating before?
posted by joycehealy at 8:54 AM on July 27, 2014 [16 favorites]

If she wasn't gluten-intolerant to begin with, going "back on" gluten shouldn't have lasting effects (in fact, this would be the real test of it.) She might wind up feeling a bit off if it means she's going from a very carb-light to carb-heavy diet, though, so she might have an easier time if she paces herself, has some pasta instead of rice/potatoes with dinner or wheat cereal instead of corn/oats.

Also, I don't think you need to be told this, but FFS disregard everyone who is saying to replace it with their pet fad diet. If she really wants some sort of new intervention, hook her up with a licensed nutritionist dietician in your area.
posted by kagredon at 8:59 AM on July 27, 2014 [23 favorites]

I've never had a chronic stomach problem, but my occasional bouts with heartburn, indigestion, stomachaches, etc., went away almost 100% when I stopped eating processed foods almost entirely and replaced them with whole foods. I'm mostly paleo/primal, but I don't keep to any one principle - I eat chicken, shrimp, fruits, vegetables, nuts/seeds, and very occasionally, full-fat dairy. I'm amazed at how calm my stomach is.

Your relative would be better off just eating whole foods and cutting out processed food and white carbs than by cycling through fad diets. Food allergies and intolerances are real, but I'm convinced that most self-diagnosed food allergies are really just the body's way of rebelling against a diet of processed food and white carbs.
posted by Rosie M. Banks at 9:01 AM on July 27, 2014 [6 favorites]

I have chronic stomach problems. I also have non-celiac gluten intolerance. It's a real thing and gluten makes me really really sick. I found out by tracking my food intake then lessening gluten, then trying to eat two slices of bread because I was going in for celiac blood tests. I was so sick from that bread, just, Uhg.

Anyway. If she wants to try to get gluten back in, I suggest she picks a quiet night and just eats a slice of bread. If nothing bad happens then she can try it again the next night and so on.

I agree she needs to see a GI and probably a dietician. Is she on a low-acid diet ( no spicy, onions, etc)? That's a huge thing for chronic acid problems. Also has she tried no lactose? Most people can't properly digest lactose and that's much more common than gluten problems.
posted by Crystalinne at 9:21 AM on July 27, 2014 [3 favorites]

Between the "she" and 60s part and all the indigestion and the weight loss and the very limited list of "safe" foods--I know this isn't strictly an answer, but does she still have her gallbladder? I guess to tie it back in better, if there's a gallbladder problem than trying to go back to eating like before could be even more uncomfortable, but not necessarily because any one thing she's eliminated currently is the culprit. In particular, though, I've known a couple of older women for whom ongoing indigestion issues didn't get treated as potential gallbladder issues. Because they weren't having the incredibly painful gallbladder attacks, because they were mostly avoiding the worst of it through just not eating anything even remotely risky. If her doctors have already checked out that possibility, never mind!
posted by Sequence at 9:24 AM on July 27, 2014 [4 favorites]

Has her MD ruled out IBS or a gall bladder issue? Has she had a colon and stomach cancer screening? If the answer to these is "yes" then it really doesn't matter what fad diet she follows, anything that's more nutritionally sound than a diet of processed foods will help.
posted by fiercekitten at 9:24 AM on July 27, 2014

If she feels like she needs some 'program' to 'wean' herself back to gluten, I dunno, make something up?

Nthing suggestion of fruits, veggies and meat as the bulk of her diet, and adding rice, potatoes and pastas sparingly.

Now, my sister has a hard time digesting raw veggies, and she won't touch fruit. So perhaps steamed veggies to start and easily digested fruits, like bananas, berries and melons to start. Seriously, lettuce just messes her up.

Sometimes you just have a shitty tummy. :-(
posted by Ruthless Bunny at 9:39 AM on July 27, 2014

I have a rare thing, and after years of it I got sick of it and tried an elimination diet. I notice real differences in how I feel when I don't eat wheat. I have never been tested for gluten intolerance or a wheat allergy. But I also know I don't have celiac, because when I do eat wheat I don't have an instant horrible reaction like those who do have that condition. When you have celiac any trace of wheat can mess you up. That's not me, but I can still tell a real difference when I don't eat it.

Based on this, if your friend is not feeling any different, I'd say don't bother keeping it up. It can be expensive to eat that way. Given that it's been a long time since she had any, she'll know as soon as she eats a piece of bread it if it's a real problem for her. I think Crystalline above has the best idea for how to do it.
posted by natteringnabob at 9:46 AM on July 27, 2014 [1 favorite]

I think the key is probably going to be doing the switch slowly. If it's financially feasible, she might consider setting up one or two appointments with a registered dietician. It's probably not strictly necessary to do this, but it might be easier for her if she feels like she has guidance from a professional.

Another thing: this isn't directly answering the question, but has she spoken to her doctor specifically about the acid reflux issues being an ongoing problem? She might have better luck if she focuses on those symptoms rather than asking about any of this gluten-free stuff. Also, how long has she been on Nexium and is her doctor aware of that? I only ask because I know that my doctor was concerned about me taking these proton pump inhibitors for extended periods of time because there is some evidence that this can affect bone density, which seems like it would be of particular concern for a woman in her mid-60's. Of course, IANAD, YMMV, etc.
posted by litera scripta manet at 9:47 AM on July 27, 2014

You say that she's taking Nexium, but is she also avoiding high-acid foods? Citrus, tomatoes, spicy food, etc? That's what made the biggest difference for my stomach issues.
posted by radioamy at 10:05 AM on July 27, 2014

I also was wondering if she's been screened for colon or stomach cancer. Leading up to my diagnosis of colon cancer, I was mainly experiencing stomach pain and generalized digestive weirdness, which led to a (mis)diagnosis of IBS and a possible ulcer.

Aside from that, has she ever kept a food diary? She should write down everything she eats as well as any daily symptoms she's experiencing. After tracking that for awhile -- it might take just a few days, or it might take a few weeks or longer -- she may see some patterns emerging, which will be a lot more useful to her in determining what she can and can't eat.
posted by scody at 10:53 AM on July 27, 2014

Strictly anecdotal, but I have a friend who stuck to a gluten-free diet for some 10 years because a decade ago the naturopath she was seeing (her only doctor at the time - for many years she didn't "believe" in allopathy or Western medicine) told her that she had celiac disease. Anyway, after a decade of eating gluten-free, one of us in our group of friends (who'd finally voiced her irritation at having to find a restaurant with a suitably varied gluten-free menu when we all went out to eat for Ladies' Night Out) noted that her tummy troubles hadn't seemed to improve any over the years - she was still complaining about the same digestive difficulties and pain and such, and the various anti-GERD pills that didn't seem to help, etc. She eventually ended up in the ER because of the pain and was diagnosed with an inflamed gall bladder (plus stones). When she mentioned her celiac disease when giving her history, the doctor asked her something about the biopsy and she replied "What biopsy?" Turns out that celiac disease can only be diagnosed via an endoscopic biopsy. If you don't actually have the disease, following the special diet won't help what's actually ailing you.
posted by Oriole Adams at 10:54 AM on July 27, 2014

Thank you for your answers so far!

She is not a soda or alcohol drinker. She was never a very adventurous eater to begin with, so "losing" bread, pasta, hamburger buns, most cereals and the occasional pizza slice took a big chunk of variety out of her diet.

Sequence, your point about gall bladders is an interesting one, and to my non-medical brain seems very plausible. It was ruled out before, but I might nag ask her about making a gastro appointment again to explore that.

I want to tell her to just eat a half a slice of white bread and see what happens, but I also want her to make that decision for herself.
posted by kimberussell at 11:16 AM on July 27, 2014

I'm going to add to the possible other-stomach-issues comments above.

I'd recommend visiting an MD about your relative's group of symptoms. Among others, angina can also look like really bad heartburn in women.

If her MD is dismissive, I'd find a new doctor. She's at an age (aren't we all, I suppose) where it could start to matter to be followed by someone serious about her health and well-being.
posted by mamabear at 11:18 AM on July 27, 2014 [2 favorites]

Might be preservatives. My sisters, in addition to being differential-analysis-determined gluten intolerant (back in the 70s when even the doctors were like, whu?) had bad reactions to preservatives in general. So my mom had to cook everything fresh.
posted by notsnot at 11:28 AM on July 27, 2014

To answer your actual question: I have several family members who thought they were celiac, had the biopsy done and found out they had absolutely no gluten sensitivity at all. They immediately switched back to a gluten-full diet and experienced no ill effects. So, your friend should feel free to try that!

But yeah, eating processed stuff is going to make your stomach feel gross no matter what - all of the preservatives and chemicals and crap is just not good.

Random: you mention acid reflux and Nexium. Has she ever been treated for H. Pylori? It is a stomach bacteria that causes GERD symptoms (belching, bloating, nausea, abdominal pain, etc) and it only goes away with a special course of antibiotics. Antacids are often prescribed instead, which do nothing to get rid of the infection.
posted by joan_holloway at 11:50 AM on July 27, 2014 [1 favorite]

has she ever had a diet (mostly) free of processed food? You said she misses 'regular' food - what was she eating before?

This! And based on your update about the things she misses I would imagine she hasn't ever eaten much non processed food. So if it makes her happier to eat her old food by all means. But assuming the various alternative causes suggested here can be ruled out, chances are that her digestive troubles will continue unless she starts to eat a cleaner diet.
posted by koahiatamadl at 11:51 AM on July 27, 2014 [1 favorite]

I tried going GF to see if it would help some health issues I was having and lasted maybe two weeks. I didn't notice any change, went right back to eating it, and was fine.

Once her doctor has ruled out any major problems, I'd nth seeing a dietician... Would she enjoy cooking classes?
posted by jrobin276 at 11:54 AM on July 27, 2014

I'm not gluten intolerant, but as a child I was highly allergic to wheat. (Allergy - hives, throat closing...good times.) I mostly outgrew it, but there's still a limit to the amount of wheat I can eat before I have GI distress that I won't even begin to describe for you.

Here is what I do. I try to eat mostly real food. I don't buy processed crap for the house which means I go days without eating crap. I occasionally eat a piece of bread or cake or cookie. It's an event, because I won't eat wheat based food again for a least a few days. Normally, I go all the weekdays without wheat, then have one cheaty meal on weekend - a biscuit or roll with dinner or a wheat laden breakfast food.

I think the vast majority of people who are eating gluten free are limiting their food choices to no real benefit. A trip to the grocery to get real food - including some wheat - is probably her best bet.
posted by 26.2 at 12:00 PM on July 27, 2014

I was off gluten for something close to four years on the advice of my doctor. I tested negative for celiac antibodies, but I had a range of symptoms including hair loss, fatigue, brain fog, anxiety, and menstrual irregularities. "A gluten-free diet helps some of my patients," he said. It wasn't until I was off gluten that I realized I'd also been suffering from extraordinary amounts of gas and diarrhea -- I'll spare you the details. When I went off gluten, suddenly for the first time in as long as I could remember, I didn't always have a stomach ache anymore. It wasn't *perfect,* I still had all of those things from time to time, but the amounts were so much less that I felt like a whole new person.

Turns out gluten wasn't the culprit.

When you give up gluten, you give up fried foods because of cross-contaminated oil, rich sauces, creamy soups, cheesy pasta -- in short, you wind up cutting a lot of fat out of your diet. And it turns out gluten wasn't the thing that had ever bothered me -- it was fat bothering my gall bladder the whole time. I had my gall bladder out at the beginning of June, and after a few weeks I decided to *try* gluten, to see how it went. I've now been reglutened for three, four weeks now, and it's been *amazing.* There's a moment when you go into a restaurant and realize you can eat anything you want... I just can't get over it.

For more details and a lot of emoting, see my blog post about deglutening and then the one about reglutening.

The upshot is that I did indeed have a real sensitivity to something, and removing gluten from my life got me about 85% better than I'd felt before, but gluten was never the root cause in my case. I'm eating epic amounts of gluten now (and I'm probably going to gain some serious weight because of the sudden influx of carbs into my diet) but my stomach is feeling better than it has in some ten or fifteen years, because the source of the true problem, my gall bladder, has been eliminated.
posted by Andrhia at 4:22 PM on July 27, 2014 [5 favorites]

If she never had any symptoms to begin with, just add it back to her diet slowly.
A piece of toast at a time. People do adapt to the food they are eating - e.g. people having spces, beans, meat or dairy if they don't usually eat it, often have a little digestive distress - so just add it back slowly enough that she doesn't mistake 'new food' digestive troubles with some kind of gluten problem.

But still - 2 years. Why bother that long with a diet if it had no real improvement?

And, *hands up* that's as someone who's got some kind of non-celiac wheat something-or-rather!
It turned out to be the silver bullet for most of my health problems (allergies, hypersomnia, etc), but it was pretty freaking obvious it was working.
posted by Elysum at 5:33 PM on July 27, 2014 [1 favorite]

If she's on Nexium and still has reflux issues, she definitely needs to see a GI doc again. Nexium is one of the strongest drugs out there for reflux, and having reflux over a period of years to decades is not a benign thing - it causes damage to your esophagus that puts you at risk for cancer. Believe me, her GI doc will want to know about this.
posted by treehorn+bunny at 5:54 PM on July 27, 2014 [1 favorite]

Can I make a suggestion that she tries FODMAP? My partner also assumed he was Celiac (not unreasonably, multiple blood relatives are) after years of steadily worsening digestive issues. He tried a gluten free diet for about six months and when there wasn't a change, actually went and got tested. When it came back negative he switched to FODMAP and has been raving ever since about the dramatic difference it made almost overnight. It might be worth investigating for her - we have an app so just check stuff on it when we're at the supermarket.
posted by Wantok at 8:34 PM on July 27, 2014

Well, I have celiac disease. And your relative has my sympathy. Guts are complicated.

Scody's suggestion to keep a diary cataloging food and symptoms is a great one. This could even help the doctors/nutritionists she goes to see. More visits to medical professionals also seem like a good idea. Yes, "visits" plural because all of the above suggestions about what could possibly be wrong seem like good possibilities, and only medical professionals and some trial and error will be able to figure that out. This sort of problem requires persistence.

That said, I know that if I ate only GF processed food I would feel terrible too. Really terrible. I know, because I've done it and don't do it anymore. Unprocessed food is the way to go. Even if she only likes three vegetables and three fruits, eating those instead of Schar bread and Glutino pretzels would be so much better.

When she decides to try gluteny food again, definitely ease into it as you mentioned in your update. Have a half a slice of toast and eat normally the rest of the day. Wait a few days. If she feels no worse, up it to a full slice of toast. And make it some wholesome toast with a simple ingredients list, not white bread.
posted by purple_bird at 9:34 AM on July 28, 2014 [2 favorites]

Nthing the food diary suggestion. While I use a website/smartphone app to track my calories, it's also how I discovered that a lot of my gut issues were tied to the amount of fiber I eat a day: 20+ grams of fiber a day means that I have significantly fewer problems, while more than a day or two of very low fiber intake guarantees lots of cramps, gas, and other icky things.

(Does she eat a lot of dairy? Has she tried cutting it out or using lactase pills? That's one possibility I'd suggest she explore for a week or two.)
posted by telophase at 9:54 AM on July 28, 2014

Wanted to add: a food & symptom diary could help her gauge whether gluten is a problem when she adds it back as well.
posted by purple_bird at 10:05 AM on July 28, 2014

Thank you all for the responses but most of all your gentleness with this fraught topic.

I didn't want to put it in the question itself on the .00001% chance that she Googles it, but she's my mom. And hearing that for dinner she had one unseasoned chicken tender grilled on the George Foreman grill, a mozzarella stick and a handful of Fritos kills me.

While I'm not going to print out the thread and show it to her ("you talked about me on the Internet?"), it gives me more real-world stories to talk to her about. And some ammunition.

I'm going to have to be the bad cop and insist on another trip to both her PCP and the GI doc. It's probably time that I start going with her to these appointments so I can hear what they're actually saying and push the gall bladder issue. I don't think she can navigate this all herself and is overwhelmed. (Oof. Lump in my throat, right there.)

I'll post followups as events warrant. Thank you again! :)
posted by kimberussell at 5:44 AM on July 29, 2014

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