Stages of Celiac, part 2

So, you got the diagnosis of celiac disease. Congratulations! There is finally a name to the awful stuff that has been happening in the body and now what? Well, this is part 2 of my series on the next Stages of Celiac disease – how to feel better….

After a few months of being diagnosed and not feeling better, most people start to question – what else could be wrong? Most people have done a fairly good job of cutting out gluten, replacing all the obvious items that have been cross contaminated with gluten – like toasters and wooden cutting boards, after a few months. But now, things aren’t improving. They thought cutting out gluten would make all the problems go away since they have a name for what has been making them sick.

Here’s how the progression goes as I’ve seen it….

After gluten, the next thing to go is dairy. Yep, cheese, butter, and milk all get eliminated from someone’s diet. Now, many people say that dairy is inflammatory and hard for those with damaged guts to digest it. I’m not here to say it is or it isn’t, but that is typically the next to go. I didn’t do this, but know many, many people that swear by it. If it helps, go for it. But I haven’t found that it solves the problem for most.

The next step is supplementation. Since our guts are damaged, we don’t absorb nutrients properly. Most of us had vitamin and mineral deficiencies at diagnosis, so adding a supplement or two can’t hurt. We believe it will make us feel better because if we can get the vitamins and minerals right, we can be less tired or maybe solve the random persistent system that is bothersome. This is expensive and studies have shown that most supplements are crap, so this doesn’t help much

Then we get to my favorite probiotics and digestive enzymes. Since our gut is damaged, maybe populating our digestive system with good gut bacteria will help make us poo more often or less often as the case may be. These probiotics and digestive enzymes come in a variety of ways. A supplement can be purchased to help with the digestive enzymes or some people offer that eating pineapple or papaya will help. Yes, pineapple or papaya help digestion and are good and natural. It’s just, I got sores in my mouth from the acid from the large amounts of pineapple I was eating and papaya is kinda slimy sometimes. Probiotics are good, but I cannot do kombucha or sauerkraut or kimchi – all foods with lots of probiotics. The pill form of probiotics don’t work very well – see supplements above.

Now, we feel like we’ve done everything we can do to help ourselves. Next up comes the most expensive options – the dietitian, naturopath, chiropractor, or non-insurance covered doctor. I can’t tell you the number of wack-a-doodle doctors, number of tests and procedures, and supplements I’ve taken because they said it would cure whatever ails me (see above regarding supplements). Unfortunately, many, many dollars later, I still feel lousy a lot of the time and none of this gained me any help.

I’m going to try to save you a lot of heartache here. None of these worked to make me feel better. Maybe you found something that worked for you, but I didn’t. Here’s the magic bullet and I really should be charging for this….

Eat whole foods, occasional gluten free processed foods (bread, pasta, pizza, etc.), a 6-week low FODMAP “cleanse”, gentle exercise (too much is too hard on my body), enough sleep, and careful review of the gluten free procedures in my house is the only thing that helped.

Please know that this is from a lot of experience and I hope that it saves you a bunch of money and heartache. Everyone is different and maybe you’ve found something that works for you, but if not, you now know the progression.

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