Villi or von’t I feel better today?

I probably von’t, though I really can’t say.

shrugging md

One of my favorite things to hate about celiac is how slow-going recovery is. A lot of studies, like this one, check in with people after 6 months on the gluten-free diet (GFD), and (most) people feel (mostly) better by then (though most studies don’t say how people felt in between). Jules Dowler Shepard suggests 3 to 6 months for “younger people” and up to 2 years for “older adults.”

I know, I know, healthy intestines, like Rome, aren’t built in a day. But it’s a bit of a bummer that people without diagnoses are going gluten-free left and right and claiming miraculous, instantaneous improvements to their quality of life, while I’m chugging along clutching my GFD prescription and hoping I’m doing it right.

Back in the spring, I tried the ole GFD for about six weeks and observed no real difference. Did I do some stuff wrong? Yup. Did I do most stuff right? Yup. I assumed I didn’t have celiac but figured I’d go back on gluten and get tested anyway. Blood test, biopsy, and oh hey, I do have it. Awesome. This time around, I’m correcting my errors, and I’m trying the no-oats (even “pure”) and no-lactose thing. I cut out drinking, too, just in case it helps—though this has left my friends most displeased. Coffee…oh God, I just, can’t. Yet.

By the way: A lot of research is done on why people don’t adhere to the GFD. Personally, I think an online database of average length of GFD prior to various symptoms improving would be helpful. Like, type your symptom here to find that X percent of people with anemia see resolution after X months, and X percent of people with depression see resolution after X months. Knowing you’ve still got Y weeks or months left to go until you hit the average resolution date would help fortify you, and knowing you’ve already passed the average could prompt you to go to your doctor to discuss the possibility of other complications. I could get back so many hours of my life devoted to Google searching if I had such a reference.

In the meantime, I’ve settled on July 29th, precisely six months from diagnosis, as the magical date upon which I anticipate all of my symptoms will fade away like brain fog off a windshield, or disappear in a puff of hydrogen sulfide. Until then…

Knowing what ails me is making me happy,
But other than that I feel utterly crappy.

Hope you and yours are feeling vell as ve head into the veekend (a long one, for us Americans). One last assignment for this veek: If you have celiac, how long did it take you to feel better? Did you have to throw in any “add-ons” to your gluten-free diet?

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7 thoughts on “Villi or von’t I feel better today?

  1. Mary Kate says:

    I don’t have celiac, but rather a gluten allergy (so theoretically no damaged intestinal tissues). There was some theory that some of my allergies might resolve themselves, so when I committed to the diet (free of gluten, soy, dairy, egg, and a few other random things), I committed to one year. In about three months, I felt better, and it was a little easier. A year in, it was almost old hat and I was almost ready to go back to trying to socialize in restaurants with people I didn’t already know really well.

    Best thing I did was stop berating myself for being angry and frustrated. It faded quicker when I stopped being angry at myself for perfectly normal responses.

    • Molly says:

      Not getting angry at yourself for getting angry seems like a good policy! Glad that you broke the cycle and appreciate you sharing your story. 🙂

  2. About two weeks after I stopped eating gluten I noticed a difference, but I didn’t stop wondering if there was something different that the doctor missed until I had been gluten free for almost 3 years. I was still symptomatic, and there didn’t seem to be any explanation. A large part of that is the time it takes to heal, but another part of that is not realizing all of the sneaky ways gluten was still getting into my intestines… like cross-contamination from eating in restaurants or eating things that were processed in the same facility. I ended up taking a specific course that Kaiser has for recently diagnosed celiacs, and it was REALLY informative & made a world of difference! I still make mistakes on occasion, and of course I suffer for them, but they are much fewer and far between. My cholesterol may never be anywhere near high enough & I may always have to be that girl bumming out her friends because she can’t go out to eat anywhere, but I feel great.
    This may not give you a ton of hope, but you just need some time!

    • Molly says:

      No, that’s helpful to hear! What was the class like? How many people in it/how many sessions? It’s really nice to know there’s stuff like that out there.

      • My doctor sent me to one that is a few hours long. I know that they have classes with more sessions, but I have a close relationship with my doctor so he knew I just needed the initial one where they scare the bajesus outta you. They did this test where you checked whether or not certain things might have gluten in it, and I was really surprised at all of the places! I was mindblown when I found out that my conditioner was causing my migraines.

        I actually think that there is a real market (and need) for MORE classes like this, classes that include cooking. Too many celiacs spend their first few months scared to eat anything except vegetables…. I may have just thought of a new business plan!

        • Molly says:

          I think an under-researched side effect of gluten exposure must be suppression of entrepreneurial urges, because since going off gluten I’ve had all kinds of business ideas, too. Gluten-free speed-dating sessions—coming to a city near you, any day now.

          I’ve checked into my cosmetics and seem to be in the clear there! Phew.

  3. […] kick in; I want to keep trying things. This is another thing to try. It’s something that, back in February, I didn’t think I could do. So, progress! Sort […]

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