Any fellow Celiacs?

Hey! I'm a celiac too, yes. :-) My family now has three generations of them!

So...sympathy AND congratulations - I hope that this helps you as much as it did me. And in that vein, let me offer a ton of totally gratuitous advice, LOL. Basically, the things I wish people had told me!

1. The next 6 months (possibly longer), you want to eat a diet that is a maintenance diet, or even more calories than that, rather than lowering your calorie intake at all. It will take at LEAST that long for your body to heal up the damage done from celiac disease (and every time you get contamination, it'll take about 2 weeks to heal that damage).

During that time, your body will require more resources to heal, but at the same time, it won't be healed enough to absorb all the nutrients from your food yet. So you want to give it all the nutritional and caloric resources your body requires, which may be more than you would usually need because whatever you eat...your body is only getting a fraction of it rather than all of it.

This is really important, because seriously, the body will not just be healing your gut. Anything in your body that has been affected by the nutritional deficiencies will get a boost too. So organs, muscles, bones, immune system - whatever's been affected, your body will try to repair, if it can.

It can help to think of yourself for the next 6 months as recovering from a long illness because, well, you are, you know? You may be even more exhausted for a while, because your body is recovering and healing. You may feel super, super hungry - a lot of us do, for a few weeks, although I've never heard a good explanation as to why. But after a few weeks, or a few months, you'll usually start to feel much, much better. :-)

2. Dairy may not be your friend. The damage from celiac disease can ALSO damage the part of the intestines that makes lactase, so many celiacs are lactose intolerant. Some of us regain the ability to digest lactose, some don't, but most of us with the lactose intolerance heal slower if we keep eating dairy.

3. Taking a gluten free vitamin supplement can help your body a lot.

4. If your doctor didn't send you to a really good nutritionist to talk about going gluten free, I'd recommend going somewhere like the forums at celiac.com to ask about how to avoid both gluten AND gluten contamination. Some celiacs can get sick on even as little contamination as you'd get kissing someone who just at gluten. You won't heal all the way until you have a diet that avoids enough contamination.

5. Unless you are doing very, very well financially, it's a good idea to just ditch the GF processed food and start thinking in terms of making everything from scratch. Most GF processed foods are about 3-4 times more expensive than their gluten counterparts, so if you try to just substitute things for your current diet, it's ungodly expensive.

Paleo recipes can be awesome at this point in time. I don't agree with the philosophy, but if you, say, go to pinterest and search for paleo recipes, you'll get a ton. And they are all grain AND dairy free, so if you have any dairy issues, that takes care of it as well. Then you can add back in foods you like to that diet, but it's simply a type of diet that has a good cache of recipes you can start with that will be safe, you know?

6. If your doctor did not tell you this (and most I've heard of don't) the experts currently recommend that EVERY close relative of yours now get tested for celiac disease ASAP. They are in a much, much higher risk category to develop the disease. Experts recommend that if they test negative, they should get retested every 2-5 years, because it can trigger at any age, and it can do damage for years before symptoms show up, so it's good to be safe.

In my family, we weren't told, and years later, when some were getting sick, we started testing finally. All but one person in my family (down the one blood line) ended up testing positive - and the one who was negative ended up being gluten intolerant. It's really a good idea, truly.



Oh, on a good note - a lot of celiacs I know of tend to even out in weight when they go gluten free. If overweight, they lose it (every single person in my family lost weight, between 30-60 pounds in the first 6 months), and if underweight, they gain it. This is without decreasing or increasing calories. It doesn't continue past the first few months, but it may happen to you too, even without lowering calorie levels, you know?


Wishing you luck, and I hope this goes really well for you! :-)