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The difference a diagnosis makes August 6, 2013

Posted by mareserinitatis in food/cooking, societal commentary.
Tags: , , , , , ,

I’m almost upon the 1 year anniversary of receiving my official diagnosis of celiac’s.  It’s a happy thing for me because I’m feeling and looking far better than I did a year ago despite the fact that I still have a ways to go.  I’m still waiting for my ability to digest peaches to be restored.

To celebrate, the FDA has just released new regulations stating that gluten-free items must have under 20 ppm of gluten.  (Coincidence…but they were supposed to have come out with a decision on this months years ago.)  My friend Kari posted an article about this on FB:

The 3 million Americans with celiac disease and all those traumatized against grain by the Atkins craze a decade ago will soon be shopping with ease. The Food and Drug Administration, after a six-year delay, has set new standards for what food can carry the label of “gluten free.”

It was an interesting article, but their whole ‘gluten-free is just a fad’ undertone got on my nerves.  I’ve seen a lot of articles like this (I discussed one at length in this post).

This sort of thing gets on my nerves because for years I had to listen to people tell me how my low-carb diet was a fad and not healthy for me.  I went on a low-carb diet at the age of 22 because I had fibromyalgia (*ahem* not really, but I didn’t know that then) and having weight problems.  Miraculously, I got better after going on the diet.  (Not so miraculous now that I know what I have.)  However, the fact that I felt better and lost weight didn’t phase people.  I continually heard from doctors how I was going to end up with high cholesterol, how the weight I’d lost was ‘water weight’ (ummm…I’m sure that 80 lbs. was all water), and on and on.  I was flummoxed: I was told I needed to lose weight but once I did, I was lectured on how I did it the wrong way.  As a side note, the fact that I was no longer in pain and my fatigue had gone away were irrelevant.

Going to any social gathering was even worse.  I would be rather careful about what food I ate (and I never felt I was overly picky…just asked them to please hold the bun or whatever), but it never mattered.  Inevitably, some stranger would come up and begin lecturing me on my poor food choices.  I came to the conclusion that there were really a lot of busy-bodies out there who had nothing better to do than search out people who really weren’t looking for any advice on their diet in order to fill their ear.

I’ve been putting up with this for 15 years.  I can no longer count how many times I’ve had to justify to ‘strange’ dietary choices to people.  And the funny thing is, they never want to hear how as a vegetarian/vegan or on a normal diet, I actually grew sicker.  (Celiacs, it turns out, impairs the body’s ability to digest protein.) The implication was that I must not have been doing it ‘right’…whatever that means.  The fact that, in the last few years, it wasn’t working was an additional reason for people to come out of the woodwork and criticize my choices…nevermind that what they were telling me was exactly the wrong thing to do.

Now that I have the magical diagnosis, it’s amazing how differently people react.  I always bring my own food with me to social things.  If someone asks, I just say I have celiacs.  Rather than telling me how unhealthy my diet is, I most often get the observation that I am eating very healthy.  No one grills me about why I eat the way I do or tells me that I’m making poor choices anymore, but they ask questions about how I handle it and what things I need to look out for.  Occasionally, I will get comments about how they know someone who has celiacs, as well.  In fact, in the past year, I have had ONE negative comment about how gluten-free diets were a fad…and that person was obviously so woefully uninformed about that (and several other topics) that I didn’t bother wasting too much brainpower on him.

This has me stunned.  The reason why I’m stunned is because I’ve hardly changed my diet at all.  It was very easy to transition to gluten-free because all I really needed to do was cut out a slice of bread or a dessert here and there.  (Okay, so I did have to cut out my favorite Chinese restaurant permanently, and I do have to buy all gluten free soy sauce, which is a bit of a pain.)  Most of my diet was already protein and vegetables, and I’ve really found that sticking with that has been pretty easy as I’d already been doing it for 15 years.  The only major difference I’ve noticed is in people’s perceptions.

This is why I get frustrated when I see these judgmental articles about how people who are doing things ‘gluten-free’ or ‘low-carb’ are just following a fad.  I don’t suppose it’s ever occurred to the writers of such articles that food can have a profound impact on how your body feels and that, just maybe, some people really are paying attention to that.  People don’t like to be sick or fat or tired all the time, so if they say something is helping them to feel better (particularly when 40% of people with celiacs have no symptoms), then I’ll cheer them on for making healthier choices.


1. nicoleandmaggie - August 6, 2013

This past pregnancy I was forever having to explain the people that no, I didn’t have gluten-intolerance, wheat actually *made me throw up*. Sometimes, just to punish the questioner, I would get graphic about it.

But I was very thankful that gluten-free was a fad– it made avoiding wheat so much easier, especially with take-out options. And I’m thankful now as the baby seems to get red spots on her face if she accidentally eats something with wheat (we’re not 100% sure if there’s a cause-effect thing going on because there doesn’t seem to be any point in challenging her with wheat products, and she’s not old enough for allergy tests).

mareserinitatis - August 6, 2013

Yeah…people really like to probe about that stuff. So can you eat wheat now or are you continuing to avoid it? And the poor baby. :-/ I’ve wondered if my younger one has some issues, but his blood work showed up clear. We were sure we’d tied something to whole wheat bagels at one point…but when we tried a challenge later on, it didn’t seem to have an effect. He was also tested for celiac later on, and nothing showed up.

As much as people complain about GF being a fad, I really do appreciate it simply because of the awareness and not constantly having to explain myself.

nicoleandmaggie - August 6, 2013

Well, I had a skin test and bloodwork done and they came back negative (though I am, apparently, allergic to every kind of pollen under the sun). However when I eat a lot of wheat (or maybe it’s just something that comes with the wheat like malted barley, I dunno), my face gets tingly and sometimes my tongue swells up and gets too big for my mouth. One of my friends says she has the same effect with citrus and it isn’t actually an allergy but some kind of cross-allergy thing (she sent a weblink), but the allergist here in town that I went to isn’t up on that sort of stuff. So mainly I’ve been eating very little wheat because I don’t like my tongue to swell up, and I’m still a bit ick from all that throwing up (I may never eat another pancake).

mareserinitatis - August 7, 2013

You know, I can’t say I blame you. Although the picture I have in my head is Bill Cosby doing the whole routine of going to the dentist. :-) Either way, I hope you’re able to overcome your pancake trauma. Bob’s Red Mill has a decent GF pancake mix if you’re ever feeling brave enough.

2. Moose - August 6, 2013

Have a celebratory GF cookie! Seriously…if you like PB these are pretty awesome: http://thatsonetoughcookie.com/2009/05/03/black-sesame-seed-peanut-butter-cookies/ I’m really glad you finally got the right diagnosis and it’s making things easier for you.

mareserinitatis - August 6, 2013

Oooh! Thanks for the link! I’ll definitely have to give those a try. I love coconut, sesame and peanut butter, so it looks like a win all around! :-)

So did you try making some yourself?

3. Cop Car - August 6, 2013

Did someone fail to tell you that good health is but a fad? ; )

mareserinitatis - August 7, 2013

I wouldn’t be surprised if it’s a fad, but I still like the tapered-leg style jeans that came out in the 80s, so I kind of get stuck in fads…good healthy hopefully being one of them. :-)

4. Zane - August 7, 2013

Good for you. I’ve been GF for four months now and have about 95% symptom relief. A few more months to further heal the gut and I’ll probably be 100%. A nice change for the better, considering I’ve been battling symptoms since 1987. (Doctors have been no help at all, and seemed to lose interest after ruling out cancer.)

mareserinitatis - August 9, 2013

Congrats! It’s amazing what a difference it can make. I’m glad it’s working for you.

5. GMP - August 22, 2013

My youngest seems to be having a bit of a growth delay, height not advancing as quickly as expected. One of the potential culprits may be celiac’s, although the blood test that apparently misses 10% of cases came back negative. It’s interesting that the kid has never expressed any interest in bread, pasta, absolutely nothing with wheat. Go figure. We’ll keep searching.

I am glad you found out what works for you. Whoever tells you that vegetables and protein are unhealthy is a total tool. FFS, there are entire cultures where the starch of choice is rice. I don’t think I have celiac’s but I feel considerably less bloated and more energetic when I minimize my intake of bread.

mareserinitatis - August 22, 2013

Can you get an endoscopy on him? That’s why it took so long to get a diagnosis for me. I’d been tested before, but the blood test came back negative. It was another three years until I got a diagnosis, and it was only because I had a new doctor who went and did some of these other tests…

I’m sorry to hear about your son. That has to be rough. I suspect the younger son may have problems with wheat (maybe a non-celiac intolerance), but his blood test also came back negative. However, he seemed to start growing taller as soon as we got rid of wheat in the house (though he’s still small for his age). I worry about him eating wheat at school, though. So I do understand how frustrating it can be. I hope you get something figured out.


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