Celiac Disease / Gluten Free Restaurants

Am I Getting Gluten-Free Worse?

Mad Chillin'

Mad Chillin’

Somebody hold my hair.

Duuuudes. Something is up. And I’m so not happy about it. Or, I’ve just had some bad luck for the last 9+ months. Not sure which.

I believe it is clear that there’s no way I would have gone through the autoimmune protocol diet if I hadn’t been hurting. I’ve been hurting. And my last visit with my hot GI doc had him saying, “How can I convince you to not dine out?” Well, never. Because I like to hang out with friends, and eat new things and have a good time.

But the fact is, I have not been okay. So I did the autoimmune protocol diet and the one day I was not on point I got seriously sick. While I was adding foods back into the diet (because eggs and gluten-free grains, really?) I felt fine. But dairy was iffy and eating outside of my house was a nightmare, even if I skipped dairy and sugar and things. So, yeah. You guys, I can cook like a mother, but I don’t want to have to make all of my own food for the rest of my life. I do it 80% of the time, and I need a 20% break, you ‘effers! This is not okay, and this is not okay, and this is not okay. GIVE ME SOME NACHOS, ALREADY!!!!!! All right, I can skip nachos, and I did on this day.

celiac-symptoms-sickAs you can see my children have been well-trained in the nacho love, but I skipped it for corn tortillas and carnitas. I didn’t trust the rice, but added the beans. But because I didn’t roast that pork myself, and cook those beans in my own damn pot, well, I got sick. ‘Eff you, food mother ‘effers. Honestly, I realize I should take a break from nachos. But I didn’t eat the nachos. So why did I feel bad? That’s not cool. I WANT NACHOS.

The funny thing is, when my kids and I sat down to lunch here, my son was all, “I’m going to pray to Jesus and God that you don’t get gluten’d.” And my daughter was all, “Don’t forget to pray to Elijah!” And we were like, ” Elijah of Passover?” #mixedreligiousfamily And my daughter said, “Elijah D.!” Who is a 2nd grader that we really like. But not so much that we pray to him. Still. We did. It didn’t work.

I’ve heard it so many times from so many of you, that you just can’t trust anyone else in a restaurant or wherevs to make your food. And I’ve always been trusting and adventurous. But something has happened, my friends. Something horrible. And I don’t think I can dine out anymore. I was working my way back from one bad day, and then there I was in the middle of one of the biggest cities in the entire world, and I couldn’t get a mother scratchingΒ gluten-free taco. That’s not right.

So what the heck is going on? The cleaner I eat, the worse I feel when I have a snack? Does celiac disease get worse and more sensitive as it goes on? Should I be tested for so many things that I never eat again? What. The. Hell. Also, I’m pretty sure I got sick yesterday from eating too much peanut butter. I mean, it was the only thing outside of my very, very basic diet.

I just need everyone to know that I have not had not had nachos in weeks (with one exception in Texas this weekend, when I DID NOT GET SICK). Same goes for In ‘N Out. Or pizza. Or anything with dairy. No dairy, my friends. And the fact that I still got sick after avoiding dairy???? Oh, hells no.

So, yeah, maybe my gut is getting worse. Maybe I’m more sensitive than I’ve ever been. Maybe I can never, ever, eat outside my own home or a dedicated kitchen ever again. And that would suck it.

Please god/Jesus/Elijah D, prove me wrong.

How are you guys doing out there?

48 thoughts on “Am I Getting Gluten-Free Worse?

  1. I am so completely sorry! I wish I could just grab you up in a hug! I have asked myself the same thing about amped sensitivities -before I got diagnosed, my celiac was ‘silent’. No bloating, gas or problems. Just unknown bleeding in my intestine until I ended up in the hospital needing a blood transfusion. Now that I have been GF for 2 years, if I get contaminated, it seems like I am doubled over running to the bathroom for days! Keep hanging in, praying, and searching for answers. You inspire us!

  2. I have heard of this happening so much after the autoimmune protocol diet. Very hard to add anything back in. And yes it does seem our reactions are more marked the longer we are GF (we have Celiac). I would love to know how to reverse this!

  3. Hi, I’m so sorry you’re having so many tummy troubles. I can RELATE! I have two kids also, and I miss going out to eat with them , without researching the crap out of the restaurant (then still getting sick)😁 I feel like I am getting more sensitive in the past three years since I’ve been gluten free. One thing has helped me though, learning about low fodmaps and incorporating that into my diet. Feel free to email me if you ever want to commiserate, chances are I’ll have a tummyache also! 😊. I live about 30 minutes outside of LA, so if you ever want to talk restaurants,( good luck, bad luck) i’d be happy to chat with you! (Gracias Madre, yum and felt great afterwards!)

  4. I’ve had to eliminate beans (all legumes) as well as lactose…I do okay with cheese. A bite or two of raw fruits and vegetables is “yes” and a serving is “no”…same with leafy greens. Ugh!

  5. Sorry for what you’re going through. I can relate somewhat–certainly to a lesser degree. dumping gluten was amazing. Going paleo was another bump (not quite as much as dumping gluten). We’re not strictly paleo, but it seems like my decline is to a pre-paleo point and maybe not as good as when I first dumped gluten but was still eating a bunch of junk.

    I’m curious to hear what medical folks have to say.

  6. Watch out for corn tortillas in restaurants. Some have wheat flour in them. Also, if you’re eating in a kitchen where flour is being used for say things like pizza, flour dust is everywhere.

    Anything processed can hide casein or soy, which can be a problem for some. In general, if you’re going to eat out, you might try pounding the glutenase enzyme capsules 10 minutes before you eat. Not 1 like the label suggests, try 3.

    Someday, god, buddha, isis and elijah will grant me more trustworthy gluten free restaurants. For now, I accept that eating out is food roulette, and I do it as seldom as possible.

    Sorry 😦

  7. I no how you feel! I went to a nutritionalist who told me I can’t have gluten,dairy, certain sugars, certain fruit and a few other random foods. It was frigin hard but I got better. Then the doctors wanted to do some tests so I had to eat some of the ‘bad foods ‘ I felt awful. In the last couple of weeks I have gone back to my nutritionalist approved diet and I feel so much better already.
    Moral of my story- listen to the stupid people who tell you to eat plain boring crap.
    Just learn to make and freeze the yummiest of foods.
    Also I still eat out! Never bother with starter or desert, and start off with- I have some allergies can you help..
    Oh and always eat at a place where they cook from fresh.
    Often it’s worth talking to the chef or ringing before you go
    Also In the last 3 years I have taught myself to enjoy many foods I have never liked including coconut, almonds and dark chocolate! (Also great basics for sweet recipes !!)
    Also when you feel terrible and down that you can’t eat all the doughnuts, eat Mrs crimbles coconut macaroons and be happy that you are loosing weight when everyone else can’t.. (Although at moment I am struggling a bit with that bit!)

  8. I feel your pain. I feel absolutely more sensitive to everything. My “safe” food list gets shorter and shorter. I am diabetic, too, so there really isn’t anything I should actually eat. Which is a shame because I really love food. I’m at my computer right now because my work bought lunch for everyone. Not me, though. Really smells good, too. 😦

  9. Have you been tested for SIBO? I have leaky gut and going GF and then mostly paleo helped a ton… for about 8 months. Then all my symptoms came back and I was sick for weeks. (Like going home from work 1-3 days a week early sick.) I finally got in to see a GI doctor and she just prescribed me the medication for SIBO (because Kaiser doesn’t cover the test) and had me take it for 10 days to see if I felt better. By day 4 I was back to my old self! So it might not hurt to talk to your doctor about SIBO just in case.

    I really hope you feel better soon! People don’t always understand what it’s like to be afraid to go out to eat because you never know what might make you sick. 😦

    • I keep hearing about SIBO. In fact, a friend of mine received that diagnosis after she thought she was gluten intolerant. Who is this SIBO monster ravaging the land????

  10. I’ve been going thru this too over the past year, and I think mine is a combo of stress (IBS), eating out too much, dairy and other things like hormonal fluctuations. Some days are fine, some days are awful. Lack of sleep messes me up, as does sitting too much. I just think that years of undiagnosed celiac screws you over big time. you become really sensitive not only to food, but anything that can make your gut wonky. I keep thinking, do I live the rest of my life like this or what?

  11. Sooooo… samsies. I’ve been gluten free for over 15 years and lately (like you, the past 9 months or so) I’ve been sick. I finally dragged by butt to a GI and he said it could be non-responsive celiac disease. After all these years?! idk…I wasn’t fully prepared for the appointment (first time seeing this guy) and they need to comb through a million years of old medical records from a million different doctors, so I’ll get back to ya. They did prescribe a breath test, which I have yet to do, so there’s that….

    Prayin’ to Elijah D for ya, girl!

  12. I’m not diagnosed classic celiac because I could never get a doc to listen to me so went GF on my own. I”m labeled “highly gluten sensitive”. I’ve been GF for 3 years. I’ve noticed in the past year that I’m apparently even more sensitive than before because I, too, tend to get ill more times than not when dining out. It’s especially tough in the south (Georgia) where fried foods are basically a religion. I’m with you, it’s really discouraging to think that restaurant fare and group meal outings may be out of my ability eventually. I love to cook, but like anything else, when you’re forced to do it, it just ain’t the same!

  13. April, I’m so sad my favorite GF hero is having a bad time. It really really stinks, I’m with you. I, too, have found that the longer I’m GF (diagnosis 3+ years ago of celiac), the more sensitive I am. There only seems to be about 3 things I can eat at my friend’s Indian restaurant. Anything else, no matter how much they swear up and down it’s safe, and I get sick. For days. Ugh. So, yeah, I’ll definitely go for months not eating out at all, and bringing my own food to meetings, potlucks, etc. So boring. I sure hope you get to feeling much much better very soon. And that a really really good, really truly safe restaurant comes to your neighborhood soon. (That actually happened to me!)

  14. I’m sorry 😦 this sucks. I find myself more sensitive as time goes by as well. I probably should have given up dairy post diagnosis because my stomach gets all grumbly and indigestion-y after large doses of it, but I looove my cheese 😦 So I kept eating it. Only now I find myself thinking, is this reaaally worth the stomach issues and often saying nope. Usually putting it back in the fridge. It’s mostly a garnish for me now. a block that lasted me days now takes two weeks to finish.

    I also find in the last year I’ve become sensitive to other foods, mostly acidic spicy, or fat based, which I think is an acid-reflux thing. Problem is, most of our dishes involve spicy, dairy, acidic etc–see also, all decent vegetarian dishes and Asian meals (vinegar) most latin American foods (spicy/dairy). And Italian of course, tomatoes. See you later, ice cream! THIS IS WHAT I EAT!

    It’s depressing af. At 30, I’m on a retirement home diet? A GLUTEN FREE Retirement home diet, oh my GOSH! Who is ever going to want to date me when I have to eat like this, SOB!

    It could be worse–at least our digestive system works and we don’t need those colonoscopy bags? (it could be SO MUCH WORSE ladies and gents). But I hear you on the increased sensitivity, not just to gluten but other foods. 😦

    • I think they eat better than that in most retirement homes. And, jeez, am I glad I’m not currently dating. I think I’d be on an all-meat and wine diet.

  15. Oh, April, I’m so sorry to hear this 😦 It really really sucks to never dine out. Right now we don’t with my celiac daughter because she is too afraid after getting super sick. I sadly feel like yeah, most places don’t get how wage you need to be, or they just can’t do it especially in a busy kitchen environment. We need more 100% gluten free places. Thinking of you and hoping for better gut news in the near future.

  16. This fu$king SUCKS BALLS. I am so sorry. I’m going on a detox cleanse in July, now I am scared what will happen when I have my first double plate of nachos post tea & greens only hippy-dippy detox month :/ I hope you get better soon!!!!

  17. I found your book in a shop in Seattle… I read it all the way home to little ol’ Billings MT. I got the hell glutened out of me this weekend at my sister in law’s wedding… From gf cupcakes and a kale salad with a mysterious dressing. Haven’t been this sick in a long time. It’s day 3 recovery and I’m wishing I knew Elijah D too. Jesus hears from me a lot these days. Elijah could really give Him a break. Hope you feel better soon. Loves from the Big Sky state!

  18. It truly sucks. In L.A., it’s gonna suck pretty bad because there is Much Good Foods. I am going to chime in as the voice of “I recover faster now, GF for 6 years”. I don’t know precisely why I do recover faster *but* I think it may be because I can’t always tell what is making me sick and I start (here it comes) exercising again ASAP. Like I will go walking even if it’s for 10 minutes. Is it celiac, or allergy, or actual virus? Who knows? I tell myself, “Get yer ass out there for a walk or something…” That and I default to the AIP minus most fruits because latex, and I don’t eat out at non-gluten-free places very much. I was spoiled at the last place I lived because I could pick up glutenfree food super easy at a paleo cafe. We Need more of those! All gluten free and someone else is working over the damn stove. I moved again and am thinking I may just have to open my own since I cook most of the time anyway. I am so sorry you keep being sick. I hope you can quickly figure out which places are truly safe for you to eat at!

  19. I COMPLETELY understand where you are coming from!

    I have been Gluten Free for 6.5 years now – and if anything – it seems I am MORE sensitive and have the ‘got glutened’ symptoms quicker and with more fury.

    It’s very frustrating and even worse when something was supposed to be “gluten free” and then clearly isn’t later.

  20. I am so sorry and, like many other people, have found that I am more sensitive 8 years post-diagnosis. I haven’t heard of SIBO before, but am intrigued.
    My doctor recently asked me to track when I felt most sick and we have determined that I appear to have an issue with nightshades. I had to Google them and they are tomatoes, potatoes, peppers (all kinds, not black pepper corns), paprika, eggplant and some others.
    When I read the list, I realized that it’s almost everything in Mexican food. That includes nachos and my favorite, chorizo! I eat it at breakfast, lunch and dinner. Nightshades cause inflammation and for me, GI issues.
    Hang in there – on some days I feel like even water will make me sick. 😦

  21. I was recently diagnosed with coeliac and haven’t touched gluten since but was out and needing to eat so bought a salad that was labelled as safe for people avoiding gluten. The first bite caused mega pain but I put it down to the copious amount of chili in the dressing but since then I’ve felt like death and think that was my first time getting glutened and life is not ok. I want to curl up in bed and cry all day tomorrow but that’s not an option but liiiiiiife. It shouldn’t be this rubbish

  22. Have you done the Repairvite regime to repair leaky gut? An intense elimination diet goes along with it but it’s nothing any of us hasn’t had to do before. I have an amazing Chiro in Woodland Hills who has made a world of difference for me and all of my ongoing issues.

  23. Pingback: Gluten-Free Los Angeles: Sugarfish | Gluten Is My Bitch

  24. Hiya, found your blog while hunting for new gf recipes. We met at the CDF conference a few years back. I’m the nutritionist who had the booth next to you. Love that your blog and writing continues on! Anyway, I’ve had clients have good gf luck at The Pink Pepper on La Brea (thai food) – gotta ask all the normal million questions – but they pull it off there. Also, expensive hotel restaurants serve gf food pretty well, so long as you talk to the chef. The current gf trend is hazardous to us celiacs…lots of “GF Menus” that are put together by restaurant managers that don’t know the first thing about what gluten free really is, never mind cross-contamination. I am too lazy (? distrusting?) to ask all those questions eating out now, and have had too many mistakes made (mine and theirs), so I haven’t eaten out in years. I too get tired of the constant kitchen work, and was able to hire a friend for a month to cook once a week for the family. It was LOVELY. Wishing you all the best, Liz.

    • I remember, of course! Thanks for the hot tip on a Thai place. I love Thai food and get so tired of making it for myself. πŸ˜‰ and yes, I’m so much more cautious now but I’m NOT happy about cutting down on dining out. Not. At. All.

  25. The longer you eat glutenfree, the more sensitive and painful it will be if you do make a mistake. See it as your auto-immune system not being used to it anymore, so it hits harder.
    (Sorry English is not my main language)

  26. Google the term FODMAP. Changed my life. Gluten is only one of many, many things I can’t eat without serious reactions. Fortunately, theres’s an app for that from the Monash University, AU, one of the pioneer research labs on FODMAPS.

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