Problem #589 With the Gluten-Free Diet


Wow, the gluten-free diet does suck, does it not? From travelling, to going to PTA meetings with donuts-a-plenty, to visiting relatives who secretly hate you — there are a zillion ways things can go horribly awry. Which is why I have been amazed at my own ability to not eat gluten — intentionally, anyway — ever. Well, okay, there was that one time I drank a beer because I was slightly encouraged to give it a shot, on account of the lack of wheat. And I’m horrible at peer pressure. But I’m never going to do that again, because that was dumb.

Imagine my surprise when I discovered maybe my gluten-free diet isn’t so gluten-free after all. Did I say surprise? How about tears followed by raging anger followed by crazy regret at not making one ounce of that gluten count. I could have had croissants, people. Pastries!!!! It turns out, gluten really does sneak into you even when you think you’ve got its number. (It’s number, by the way, is 666.)

Yep, I had one of those follow-up endoscopy things today and guess what? I’m totally fucked!

All right that was a bit dramatic. I’m only slightly fucked, and in reality I won’t know if I truly am or not until the biopsies come back. What I do know? My body still thinks I eat gluten, even though this blog clearly states that I do not, and that it is, in fact, my bitch. It’s true that I have been gluten’d at restaurants that were not as gluten-free as either the waiter thought, or the chef pretended to be. It’s also true that I don’t feel quite right about once a week. But for someone who cooks almost all of my food from scratch, and tells the wait staff about my whole gluten thing 90% of the time (I know), I’m shocked that I still possess some short villi. SHOCKED. And pissed. So what’s a gluten-free gal to do?

Here’s what I won’t do:

  • Storm into the kitchen of a restaurant and demand they wash every pot, pan, surface, and swear on their children’s lives that their hands will not touch gluten when also touching my dinner.
  • Stop going out to eat altogether.
  • Deny my children Cheerio’s.

Here’s what I will do:

  • Stop eating fried food even if they’re using rice flour, or no flour at all (cross-contamination, yo).
  • Have designated bowls and spoons for my kid’s gluten.
  • Always ask, even if I think I know better
  • Stop touching bagels. (What? They’re soft.)

I know there are other things, but right now I’m just right pissed off and not willing to entertain any other options. I kind of thought I was already on top of that shizzle, and am now a bit devastated to find out that is not the case. Seriously, does this mean I can’t dine out anywhere other than hippie joints from now on? ‘Cuz that is not fun. Not fun at all. (No offense hippies. If I smoked the weed, I know I’d feel differently.)

Any suggestions, oh wise gluten-free friends?

40 Comments

Filed under Celiac Disease, Uncategorized

40 responses to “Problem #589 With the Gluten-Free Diet

  1. I’m definitely not liking your current situation but I appreciation your unique ability to put it into words.
    You’ve summed up my anxiety and frustration with all of this gluten-free shit. It’s almost impossible to know and, really, we’re probably just fucked. Haven’t had my first followup endo yet. Will likely schedule it in the next couple of months; the gastro was a little vague about all of that. Or I just forgot. I think I’m supposed to go in when my Nexium runs out.
    Everyone/everything is vague–or, yaknow, wrong.
    Anyway, again, thanks. And I’m sorry.
    No suggestions other than hang in there and definitely keep writing. Let me know when you stumble upon someone who can give you suggestions that are actually useful and wise or whatever.
    Sigh. Shit. [I was thinking with your last post that that expletive is always the appropriate curse for us celiacs. Indeed, it is our curse. I hope that's not too much talking through the metaphor.]

    • Thanks Joel. You know the worst of it was I thought I’d be marching in there like the star pupil to show off my villi. I’m really, really, strict and I don’t cheat (one beer excluded). So it was like getting an ‘F’ on life. Shit, indeed.

      • Speaking of ‘F’–that should be “appreciate” not “appreciation.” It almost sounds like I did that on purpose and I don’t know who sounds that way but it’s not me. Jar-Jar maybe.
        Anyway, yeah, I’m getting my game face ready. I’m still hoping for a good grade but I’ll launch into a litany of “Okay, so this is all the shit I’ve been doing. What the fuck more do you want? Give me a goddamned bullet so I can just finish it now.” Not that I’ll talk that way to the doctor, but it’s fun to imagine. And, yaknow, that’ll be the gist.
        And not that I’m actually gonna be suicidal, because, really, I do feel better not eating any gluten that I know of and, hey, we’re all dying anyway. They’re not taking me down that easily, damnit. But I think we’re entitled to a little anger and drama, what with the not getting donuts and bagels.

  2. Vanessa115

    So sorry about your unpleasant surprise! At our house, I have celiac and dh doesn’t, so we have separate pots, pans, etc. and do gluten and gf dishes separately in the dishwasher. Once we started that, I started feeling a lot better! (Since we rent our apt, we can’t replace the dishwasher.) Hope that’s helpful & feel better soon! :)

  3. Pumafly

    You should also consider your home appliance use, if you havent already. Breadmakers, toasters, blenders, mixers, etc. can’t do double duty. Condiments are another possible offender, squeeze bottles only. Also anything with modified food starch in it is a nono (but you probably knew that). Its a neverending battle!

  4. Jamie

    I had an appointment yesterday. The Dr. wants to run some MORE tests 12 vials of blood later he prescribes turmeric, fish oil and sleeping pills. Then says continue being gluten free as he chuckles and says well as much as you can because we all know that’s impossible! We’re doomed.

    • It is all kinda funny in a sick, tragic, oh-it’s-all-gone-to-hell-might-as-well-enjoy-it-however-you-can way.
      Thank God I’ve been gifted with a morbid, macabre, twisted, totally-inappropriate sense of humor or this’d suck even worse.

  5. Erin Jennifer

    wait, we’re supposed to get a follow up endo?? i’ve been a celiac for 5 years, and no one ever told me that!!

    question: are your shampoos and conditioners and body lotions gf? i puke when i get glutenized (super fun), and i know when i switched to gf shampoo i stopped puking as much. maybe that has an effect on your villi??

    • I always thought the cosmetic thing was kind of cuckoo, but now I’m going to check out every damn thing. PHHHHPT.

      And my doc felt like we needed to do the follow-up based on a professional seminar he had recently attended. Not sure what he learned, but his instincts were obviously right on.

  6. Gretchen

    Sorry about the endo. My Dr. told me it would take years for my gut to heal completely, so maybe that’s it? I was diagnosed 5 years ago and I’ve been sick more in the last year than in the previous 4, since gluten-free has become trendy. Don’t get me started on that whole issue! It was easier to eat out when restaurants either knew or they didn’t. Now they may THINK they know but they don’t really as in, “oh, that’s wheat, right?” I’m not sure I trust them even when they have all the right answers to my questions. I saw a Food Network chef say she’s “avoiding gluten” and then proceed to use soy sauce in the dish she prepared. Really??? Like you, I never intentionally eat gluten, but it happens and sometimes I never know what did it. This may be an obvious thing, but do you have your own jars of foods like peanut butter, jam, mayo, etc? No non-celiacs allowed near them.

  7. Becca

    I think your ideas are great. I just remind myself that if I get near those foods I will feel miserable and that just isnt worth it.

  8. Frank

    I’m 100% gluten free and still feel horrible. I’ve been seeing blurbs here and there lately about how other proteins could also cause celiacs/intolerants to react (corn being one of those). I’m to the point where I feel like i can’t eat anything anymore. I think i actually felt better 4 years ago when i was eating gluten.

  9. No moleste los bagels! but seriously this is its own kind of suckage, agreed. After being strictly paleo style gluten free for 5 months in 2009 my endoscopy was clear, showing only some inflammation – and yes, I had been to a restaurant a few days prior to that, whaddya know. I also had been playing with gluten-lite for almost a year prior to that so my guts had had some time to heal. Maybe that and not having many restaurant choices here at.all. helps keep the celiac in check, who knows? I also have some other issues so I would trade you right now, except, no, I wouldn’t do that to you. If you’re up for it, I’d give a partial paleo diet a chance because one thing that’s not discussed is how much the gluten-free breads and other packaged goods have their own cross-contam, some of the gluten-free flours, etc… It’s rarely very high (though sometimes is) but I’ve signed up for Gluten-free Watch Dog and it happens: things listed as GF are sometimes above 20ppm and that can set off some of us. Best of luck.
    p.s. I ordered stuffed grape leaves (dolmas) off the interwebs since I have no Zankou. Don’t give up Zankou!

    • I just finished my Zankou before checking my blog.

      I was thinking about the no grain thing altogether. I mean, maybe that’s a problem for a myriad of reasons. I’m just way too cranky about giving up one more gd thing. I don’t know how you multi-issue people do it. I’d lose it at the Dairy Queen one day.

      (P.S. I know you’re right about the bagel molestation. It’s highly inappropriate.)

  10. Sarah

    Yeah… as someone who spent 15 years in the restaurant industry, there are very, very. veeeeery few places I feel comfortable eating. In general, unless my server also has allergies, I assume that she/he knows shit about what’s in the food and they need a very complete list. I almost ate something with chilli in it once (I’m allergic to peppers) because neither the server nor the chef knew that chilli powder comes from a pepper. The original meal (minus lemon juice) would have been safe – they felt that it would lack flavour and so _added_ an allergen back into the meal. We never ate there again, despite our meals being comped and beign given a gift certificate. I just can’t afford someone to mess up my meal. On that note, having been on the flipside of things, I understand how much of a pain people like me are, so I tip through the roof to show my appreciation and spread the word about how well I was treated to my friends.

    It’s just so much easier for me to prepare all of my own meals… thankfully, my husband is supportive of me and the only allergen allowed in the house is gluten because it’s my least violent reaction and he’s as anal about cleaning up as I am.

  11. Paul

    It’s possible that you have refractory celiac :/

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  13. emisformaker

    I just read a book from the library that refers to the Specific Carbohydrate Diet, which was the diet prescribed for Celiac sufferers before the 1950′s (it’s been revised since then). They claim it’s more effective at healing damage done to the gut – or at least allowing it to heal – and when followed strictly for children diagnosed with Celiac it cured them. As in they were no longer gluten intolerant, and could eat whatever they wanted. They didn’t have the same findings for adults, but they only followed up for 5 years. It could be that adults take longer to heal. It’s similar in restriction to Paleo (which I also highly recommend since it makes you feel a bajillion times better), but you can have certain cheeses and yogurt if you don’t react poorly to lactose. As with any new diet, I would try it out hardcore for 30 days to see if anything sticks.
    I find that I would have a much easier time eating out if they didn’t charge so freaking much for salad. I refuse to pay in excess of $10 for a plate of Romaine lettuce with some dressing on. Can’t they just have some less-pricey, fresh veggie options?

  14. It’s possible that you *don’t* have refractory celiac and just need to be a bit more strict by taking the steps you’ve already outlined.. :)

  15. Lynne L

    Ironic that I should see this today…was in a restaurant at lunch & asked the server if they had a nutritional list, which she provided. The sauce on the chicken stated no gluten so I ordered it…surprise! It couldn’t have been anything else. I also have severe lactose intolerance, but it wasn’t that (I get diff symptoms from it), Took about 20 minutes & I was in agony. So you can’t even trust when it’s in writing, sadly. I had one server (not today) tell me there was no dairy in something & therefore no gluten!!! We need to get people EDUCATED, especially those people in the food industry!
    Have you tried gluten free beer? I don’t like to drink beer myself, but I do use it in cooking. Hubby (the gluten guy who does drink beer) says it’s not bad, depending upon which one, of course.
    Lotions, cosmetics (including lipstick & mascara), some prescription meds & vitamins etc can contain gluten. I always wondered why I couldn’t use a lot of lotions & mascara always made my eyes burn. Best to call the manufacturer if in doubt. Check out redapplelipstick.com. Trust me, it’s not cuckoo!
    They say it takes a long long time for healing in most adults. Continue what you’re doing hon…& the best of luck to us all!

  16. Katherine Kelley

    That sucks. I’m sorry. You should definitely check your shampoos, cosmetics and such. OTC and prescription meds, too. (Says the chick who got glutened by generic Tylenol last week. Don’t be me.)

    • Ummm, generic Tylenol? Yeah, I use that. WTF?

      And L — oh my god. I really don’t know what kind of cranky a-hole I would be if I had to eliminate all of that from my diet. It would be ugly. I do agree that so many gf products taste like ass and I think freshness is the key, which makes mass marketed food tough to do well. Still, it would be nice if some companies didn’t think, “Hey it’s gluten-free, that’s enough.”

  17. L Horhn

    Well I’m late into the conversation but I sometimes wish gluten was the only problem I have to deal with. Try no cane sugar, yeast, nightshades, corn, fermented foods, chemicals, eggs and limited dairy. That’s my program. So the question is what’s left to eat after that. Talk about depressing. I have not been diagnosed with celiac but my relationship partner has a definite wheat allergy so I went with the program and actually feel better. I lost 50 lbs and learned to embrace cooking at home. So I know it’s frustrating to have a special diet and it sucks that many restaurants can’t accommodate us. I once asked a GF bakery to make me a cake with a natural sweetener that I would purchase myself and got a resounding no. It’s granulated like sugar and can be subbed one for one. How hard is that, geez. And my biggest pet peeve, how many of you have run to the grocery store and paid a fortune for some GF product that tasted like crap. I can and do make better at home which begs the question why are manufacturers taking our hard earned money and not delivering. And how can we organize and unite, 1 billion plus celiacs and others who are GF for whatever reason, to hold them accountable? That’s what I want to know.

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  19. (Mascara has always burned my eyes horribly, as well. I never put that together before.) Anyway, I just stumbled onto your site and I LOVE IT!! I am preparing to covert to gluten free this weekend. I do not have insurance to get tested for celiac but have gone through years of diagnoses from Fibromyalgia to IBS to infinity. I have been diagnosed with Dermatitis Herpetaformis (Sp?) and my doctor never told me what that meant. Recently, my 16 year old daughter lost 25 pounds, can’t keep food down, lips swelling, stomach pain that sends her to the hospital (me at 16) so I called the doctor and they said “Oh I see here you were both diagnosed with HD years ago. You probably have celiac. Why didn’t the old doctor tell you to go gluten free?” FUCK!!! So, we are transitioning this week and getting my cranky husband and step daughter mentally prepared for the change. Your recipes will totally help. I think you are great.

    • What the holy hell is wrong with the state of health care? You’re the second person I’ve talked to who couldn’t get a diagnosis because of insurance, or lack thereof. PHHHPT. And yeah, DH is celiac related. Unbelievable.

      Good luck, and I hope everyone transitions as painlessly as possible.

  20. Jennifer

    I seriously am in tears reading this thread overwhelmed. My 9 year old was diagnosed with Celiac 2.5 years ago, and my 5 year old diagnosed this am. I will preface my comments with saying that We are grateful for the definitive diagnoses and have perspective that we are much better off than many others, and this disease is managed by food….which mostly is under our control. Now, my pity party… I totally thought we have this GF thing under control with 2.5 years experience. But due to our second child’s diagnosis, we are revisiting the research, blogs, websites…. And I am now severely depressed. My son has had multiple stomachaches, where we scratch our heads and can’t figure it out cause everything we made him was “GF”… Now I am questioning everything & feel like I’m drowning because I can’t trust the GF shit I make for him. How do I know the “safe” product we packed in his lunchbox didn’t change their “natural favors” yesterday??? I never even considered checking our f-ing acetaminophen !, wtf??? His sunscreen, shampoos & lotions cost triple of everyone else’s and we can’t even be guaranteed its GF?? Argh!!!! I want to make my life’s crusade lobbying for clear labeling laws now. I went on FDA website & submitted comments for the law regarding labeling & they should have an answer may 22… Lets crusade!!!! Okay, time to breathe & get back to work. Thanks for this amusing & helpful blog… Btw-I swear your website was the one where I got my GF Challah recipe, right? If so…. THANK YOU. you changed our lives. We keep kosher & are somewhat observant Jews & you brought challah back into our lives for Shabbat. Meant the world to our son…

    • Ugh!!! It’s so incredibly frustrating. SO INCREDIBLY. Since I discovered the Tylenol thing and the Skinny Vanilla Latte thing I have been dramatically better. It’s rare now that I feel sick from gluten sneaking in somehow.
      And I did attempt challah, but I’m telling you I still have not perfected it. So if you got a good recipe, it was probably from somewhere else. ;)
      Good luck!!!!! I know this stinks. Literally.

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  22. Mandy

    Sorry that you all suffer from Celiac/GI issues that cause you to have to lead a gluten-free life. I do not have Celiac/GI issues, however, I have PCOS (Polycystic Ovarian Syndrome) and have been suggested to go Gluten-Free, Dairy Free, and Sugar Free. Needless to say that is a HUGE dietary change for me. My question is…how can you shop for products that will fit my dietary needs and be able to stay within a budget?? Money is really tight right now and as I’m sure you know…the healthy (good for you) foods cost much more than “normal” foods. Thank you for any help!!

    • Hi Mandy, I’m sorry about your PCOS diagnosis!

      The best way to shop frugally is to buy naturally gluten-free, whole foods like fruits, vegetables, and organic meats. While organic meats are more expensive, if you eat them occasionally and focus on the rest it is much more affordable. Good luck!!!

    • Lynne L

      Hi Mandy! It’s not easy to eat GF/DF/SF for sure. I would suggest that you avoid packaged GF food if you can(except maybe for pasta), because it’s so expensive except once in awhile. If you visit Asian or Indian stores, you can find rice flour, brown rice, millet, teff, sorghum, sweet rice flour, cornstarch, tapioca starch etc for very cheap prices. For example, I just bought a bag of millet flour for under $2 at an Indian store. Store your GF flours in airtight containers (I bought my glass ones at the dollar store). Some flours need to be refrigerated…make sure you bring them to room temp before using. I actually had a cabinet/pantry made & it’s in my kitchen…it has all my GF flour (the ones that don’t have to be in the fridge), baking stuff etc.
      Google gluten free & go onto blogs, fb pages etc. There are sooo many resources from wonderful & kind ppl who are sharing their knowledge. A lot of them also have DF/SF recipes as well…you will have to learn to cook/ bake, if you don’t already. Homemade cookies, muffins, cupcakes, pizza etc are so much better & you know exactly what went into them. You can also make low fat versions by subbing lactose free yoghurt (if you’re not casein free..you should find out if you just need to be lactose free or completely dairy free), unsweetened applesauce etc for most of the oil, or by using the more healthier coconut oil. Many sites will discuss substitutions for various special requirements. Also, carry food with you wherever you go. Make your own GF/SF protein or granola bars & take with etc. Learn which restaurants etc in your area offer “safe” choices. You probably don’t need to be quite as strict as those of us with Celiac or NCGS. Google gluten free in _______(whatever your city is). You might be surprised as to what comes up!
      In any case, good luck…if I can do it, you can do it!

  23. Soooo I’m coming into this original conversation a few years late but I just found your blog and I. Love. It. You speak my mind. I haven’t had a second endo since I was diagnosed last December, but I am very curious what the results would be. You mentioned that you had the endo at your doctor’s recommendation after attending a conference — have you had follow ups since then? My doctor never mentioned it, so I was wondering if that was typical. I was also curious if any of the advice here worked best for you. I have been really down on myself lately because even though I never cheat (at least on purpose) on the diet, I still haven’t been feeling well lately. I always worry about how that’s impacting my health :(

    • I’m so sorry you’re feeling so bad! I’m about to have another endo but I haven’t had one in 2 years. I’m curious as well since I rarely have a month where I don’t get even a little bit sick. I think there are probably two things at play for people like us. One is if we eat outside our home we’re at risk of cross-contamination and it probably is happening. So we’re not able to stay 100% “clean” if we don’t control every single piece of food, utensil, and cooking device that comes into contact with our meal. So there’s that. The other thing is you could have sensitivities to other foods that you haven’t identified yet. I know, bummer. Or if you’re like me, if I get a little gluten’d I can’t have dairy until I’ve healed back up. I’m okay with dairy other times, but not if I’m already feeling crappy.
      I hope this helps and isn’t just depressing. Talk to your doctor!!!! And good luck.

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