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Gluten-Free … Still.

I don’t have celiac disease.  I don’t have gluten-sensitivity antibodies.  My endocrinologist ran a slate of tests to determine if my body was pro- or anti-gluten, and nothing came back weird.  As I mentioned last September, the basic gist is that my body seems to have no trouble at all with gluten.  Except that it totally does.

For a good, long time, I felt crummy.  To revisit last summer:

“I was exhausted – falling asleep on the couch and having trouble maintaining my normal vampire hours.  I was moody and grouchy, especially later in the day.  (And I’ll just offer this up because I know you’re thinking it:  I’m not pregnant.)  My hands, on some mornings, were tingly and pins-and-needlesish.  And my stomach was angry, but in a really passive-aggressive way.  I had sharp pains in my stomach, but not all the time.  I had wicked bloating, but not intensely all the time.  I just had a permanent belly ache, and it was becoming the norm.”

I’ve been entirely gluten-free since last August, and those symptoms up there are gone.  The bloating, tender belly pain is gone, as is the majority of the thick brain fog that had settled in for several months.  (Not all the brain fog, though.  I am still space shot in ways that will never repair themselves, but gluten isn’t to blame for that.  That’s all organically me.)  No more pain.

Overall, I haven’t included a new pile of gluten-free replacements for foods, but instead am just cutting out gluten sources.  I bake our bread, so that’s gluten-free, but I don’t often eat bread.  Or pasta.  Subbing in more vegetables, meat, and fruits works better for my personal diabetes crap and preferences than replacing my diet with a bunch of gluten-free specialty foods.  Again, this is easier for me because I don’t have a problem with foods that have come into contact with gluten (I can pick the croutons off a salad without having a belly ache afterwards) and also because my response to eating gluten isn’t an immediate gastrointestinal disaster but instead a sharp bloating that, all things considered, I can totally work through for a night.

I just don’t want to feel unwell; the change is worth the effort, for me.  So I am totally gluten free.  And I am still squeamish to talk about it because it seems like stupid trend-following witchcraft and food bandwagon’ing.  “Gluten-free!  It’s the modern MUST for foodies!”  I kind of feel like a tool requesting a gluten-free meal or asking a server if they have a gluten-free menu, but the handful of times that I’ve eaten gluten in the last year have left a now-predictable and very uncomfortable mark.  I feel lucky as fuck to have figured this out, because I felt like absolute garbage before cutting gluten.

Which is what I try to remember when I’m sheepishly asking someone about the gluten content of a meal.  I’m not doing this to be trendy or snobby.  I am doing this so I don’t feel terrible the majority of the time.  I’m doing this so my kid can hug me around the waist without me wincing from pain.  I’m doing this so Chris doesn’t think his wife is suddenly 98 years old.  Whether lab work proves a sensitivity or not, my body has spoken loud and clear, and I’m listening.


16 Comments Post a comment
  1. Martha #

    Me too! I’ve been GF for 6 years for all the same reasons and have been self conscious about being “that girl” ever since. Thank you for confirming I’m not the only one!

    06/2/15; 12:12 pm
  2. Rebecca #

    It’s been interesting to follow your journey to the GF life, as I too made the switch 2 years ago without any recommendations from a doctor. My celiac test from the endo always came back negative, but I had this voice in my head that kept telling me to ditch the gluten. I’m so much happier and more comfortable without it, even if we do have to ask for “special” menus, it’s worth it!

    06/2/15; 12:49 pm
  3. GM #

    Stomach problems are among the most difficult things to diagnose and treat, because they can be caused by so many things. The stomach, like the pancreas, seems to have a mind of its own and behave in unpredictable ways. So if you’ve found a solution that works for you, I say go for it, and don’t feel like you have to apologize. It’s no fun going through life with chronic tummy troubles, and anyone who takes a minute to put themselves in your shoes should understand that.

    06/2/15; 12:49 pm
  4. Julie #

    I have gone gluten free also for similar issues that you dealt with plus I require less insulin not eating breads, pasta, etc. I have noticed a huge difference in my health. My stomach no longer swells and my blood sugars have been more stable.

    06/2/15; 1:24 pm
  5. Before it became trendy to eat gluten free, those of us who must had a devil of a time finding products that we could sub into our diets. The few products that we did find were usually pricey and pitiful. Now I can walk into my grocery store and purchase a gluten free cake mix right off the shelf for a decent price and end up with a cake that someone would want to eat. All of you who are going gluten free for what ever reason are making my life easier. Please keep it up.

    06/2/15; 4:41 pm
    • Ginger Vieira #

      YES! Exactly. Thanks to the Paleo crowd, going gluten-free is actually kind of cool now compared to celiac which is kind of weird….and thus we have so many more GF options. I remember how sad and disappointed I was 15 years ago as a 14 year-old when my mom and I ordered a bunch of GF products online (’cause they didn’t exist at all in the store in 1999) and everything tasted like crusty cardboard! Now GF brownie mixes taste better than non-GF brownie mixes. ‘Betes or not, a girl still needs some brownies now and then. But to emphasize Kerri’s point: almost anybody could benefit from “going GF” or at least eating less gluten ’cause it inevitably can help a person eat more whole foods, more veggies, etc.

      06/2/15; 8:22 pm
  6. Gluten free here, too…. 100% for about a year. HUGE difference in my overall digestion and energy levels. What gluten-free did not do was reduce thyroid antibodies for me (which I hoped it would) so I still continue to treat intestinal permeability and dysbiosis with bone broth and herbs…while staying gluten free anyway 😉

    My theory is that wheat has been hybridized so many times since the 1960’s, it is no longer compatible to the human digestive system.

    Always enjoy your articles, by the way 😀

    06/2/15; 8:13 pm
  7. It’s wonderful to know that going GF is making such a positive difference for you, but I’m really curious to know — what made you decide to give it a try in the first place? I ask because I’ve had my share of gastrointestinal “discomforts” over the last…oh, probably 15 years. I’ve seen three specialists all who concluded that there’s nothing wrong, and just this past January I urged my endo to include a test for celiac along with my A1c test — and it came back negative.

    So, did you approach GF with some assurance that it might help things, or was it just a random shot in the dark to see what happens? I personally can’t see putting myself through such dietary (and social) restrictions without at least some scientific reassurance that it would help. And though, anecdotally, it certainly helps for lots of people, my stubborn mind needs it to be rationalized.

    06/2/15; 9:25 pm
    • Emily #

      Hi Scott!
      I have definitely experienced a lot of what Kerri explained, I went GF, Dairy free about 4 years ago and I definitely notice a difference. I had celiac tests done every year at my diabetes clinic and they ALWAYS came back negative. I went GF on Semester at Sea in college and while I didn’t know all the intricacies of GF and cross contamination I think just removing the roll from dinner at night helped. I got back and told my endo I thought I finally had Celiac disease and we did a gluten challenge of 2 weeks and repeated blood tests. The interesting thing was that those two weeks didn’t have me feeling that terrible and the text camp back negative so I thought “cool! gluten again!” but by the end of that summer I was in brain fog city, had fatigue turning the car wheel and I can’t tell you what classes I took in that fall my memory was terrible. I knew that another celiac blood test wasn’t going to show anything but I knew something was up and I, like you, need me some scientific rationalization. I turned to an MD who focuses on integrated health and we ordered some antibody tests through EnteroLab. I ended up reacting to Gluten, Dairy, Soy and weirdly, honeydew melon. I’m still Gf, DF and processed soy (milk products) free.
      The whole point to this rambling is that there are other tests out there that may shine a light on what your “discomfort” is. Though not always cheap, it can be easier to do that then a month long elimination diet… especially in the summer. mmmm grilling season….

      06/3/15; 11:09 am
      • My husband took the ALCAT (blood allergy) test and reacted to lots of things but the worst were egg yolk, cow’s milk, and brussel sprouts. He was mild to gluten so he took that off too. He’s not diabetic (I am) but I think he might be borderline celiac from his symptoms. He feels a ton better from following the diet outlined by his ALCAT testing. So I sometimes think even if you don’t test positive for celiac, that if following a gluten-free diet helps then why not? Scott, I think I’ve read that it can take years for a positive celiac test to react but by then you’ve already had the symptoms and a lot of people are self-diagnosing.

        06/9/15; 3:33 pm
  8. Betsy #

    i have all those symptoms too for about the last year but was also diagnosed with gastroparesis. Did any of you have a stomach-emptying test (or whatever the technical term may be)? The crap part about the diagnosis was that there aren’t many solutions (eat lots of tiny meals? Bolts differently, eat less roughage and fiber? Nooooo!) it would not be too tough for me to be more gluten free so maybe I’ll test that theory. I’m so sick of the bloating! Feel like crap. Thanks for listing your symptoms again- not sure how I missed the first time around.

    06/2/15; 10:28 pm
  9. Sarah #

    Totally the same story for me! I had a blood test that came back negative and then heard the only accurate way was to get a biopsy of my small intestine. I just don’t eat the gluten instead. And I’m with you on not replacing the gluten with gf options–they are usually LOADED with sugar. And let’s face it they have to because they never taste as good!

    06/3/15; 12:32 am
  10. Hooray for feeling healthy and strong! I imagined when our family gave up gluten that I’d start to feel a kind of amazing I’d never experienced, but I find I am still at amazingness level medium-low.

    One day in May I went out for normal people tuna melts at T’s, kind of expecting I’d feel “glutened,” but I didn’t.

    I mentioned T’s because it was exotic to me but I bet it is a Rhode Island thing. If not, T’s is an excellent tuna melt restaurant in a strip mall somewhere in North Kingstown-ish.

    I’d love to know more about the GF bread you’re baking.

    Summary of my comment: I am happy for you and envious too! I’d love to find a thing that makes me feel better.

    06/3/15; 7:57 am
  11. Emily #

    I feel the same, Kerri! My diagnosis came along with being dairy free (casein, NOT lactose) and sometimes I feel like my body tolerates gluten better than milk but for some reason I still cheat more with milk than with gluten.

    Anyway, thank you for posting about feeling like “that girl.” I always feel like I have to joke that I’m a “problem child” at restaurants, but it gets old sometimes and I don’t like apologizing for what makes me healthy. I feel like that is akin to apologizing for not being able to do squats at the gym due to an injury and having to sub a different exercise- you just don’t apologize for it! I’m glad I’m not the only non-celiac but-still-gluten-free-and-feel-better-for-it person.

    06/3/15; 11:15 am
  12. Kimberly #

    Have you considered that you may not be gluten-intolerant, but rather have a FODMAP sensitivity? FODMAPs have a high correlation with gluten, and are often found in foods with gluten, so a GF diet will relieve the symptoms, even though a gluten test may come back negative.

    I’m not an expert or anything, just regurgitating what I’ve heard from other sources, but I thought I would suggest it.

    06/3/15; 4:31 pm

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