Going Gluten Free

I don't know if I've talked about being gluten free before on this blog. I'm sure that I've mentioned that LB is on a gluten free diet. He's been on all sorts of diets: the SCD diet, GFCF diet, he's been gluten free, casein free, soy free and corn free for a time as well. We've let up on these diets with him for now for several reasons. First, these diets are hard to deal with and fairly restrictive. Second, we've seen limited benefits with most of them. And, last but not least, LB is going to be 14 years old soon and is much less willing to eat only what his parents allow. I guess he's a teenager now.

There are two limitations that we still insist that LB stick to. He needs to remain gluten-free and really limit his soy intake as well. We have very definitive evidence that gluten is not a good thing for him. As a three-year old, he developed a bad case of stomach flu. It resolved quickly but left a lingering case of chronic diarrhea. For eight months we struggled with it. At my sister's suggestion, we tried the gfcf diet. We removed dairy first since that's a lot easier than removing gluten. There was no change. We then visited a doctor to ask about removing gluten. I wanted him tested because I knew that testing would be much more difficult if we started the diet first.

The doctor basically told us that we were crazy. There was no way that LB could have celiac disease since he was not underweight. The chronic diarrhea was simply related to his autism and not a cause for concern. It's one of the very few times that I've been yelled at by a doctor. I'm guessing that he'd never heard of gluten intolerance. In his mind, only true celiac disease is a reason to be on a gluten free diet.

We tried the diet anyway. Within two weeks, LB's diarrhea went away. Obviously, gluten does not like our son. We later discovered, through trial and error, that soy also caused similar digestive problems.

So, LB has been mostly gluten free for the past ten years. For a while, we did away with gluten free living after discovering an enzyme product from Houston Nutricuticals that helped break down the gluten protein and allowed LB to have gluten without any problems. We still use their products but have gone back to being gluten free.

That's LB's gluten story. Now for me.

For the past 16 years I've been having a variety of strange symptoms. It started with dizzy spells that would come and go with no explanation. My doctor had me tested for all sorts of things and even referred me to a neurologist who treated me like some kind of hypochondriac who was wasting his time. Anyway, it was discovered that the problem was caused by my inner ear and that there was probably nothing that could be done about it.

Not long after BB was born, I started having "silent migraines," which are migraines without a headache. While that may not seem to be a big deal, I can assure you that they are. The first time I had one, we ended up going to the ER. My left arm had gone numb, I was dizzy and the numbness was spreading down my left side. Not being able to feel your limbs is not pleasant at all. Anyway, the doctor there was somewhat concerned and, even though I was only in my late twenties, he made sure to rule out the possibility that I was having a stroke. After about 45 minutes, the feeling was coming back to my limbs and I found out that I was having a silent migraine.

I continued having many silent migraines through the years. At one point, I went to my optometrist because I was having trouble seeing and saw lightning flashes. I'd been told by my optometrist several times that I needed to come in right away if this happened since the shape of my eyes made me more prone to having a detached retina. So I went. He checked me out and couldn't tell for sure if my eyes were OK so I was sent to an ophthalmologist. After an unpleasant eye exa, my eyes checked out as OK. It was another "silent migraine".

I tried all sorts of things to avoid these darn migraines. I discovered many triggers. Parmesan cheese and cinnamon were bad ones. Even sunlight would cause a migraine, especially in winter, and I had to resort to wearing sunglasses even while indoors.

During my most recent pregnancy, the migraines intensified both in frequency and intensity. I was having at least two a week and they were no longer silent. I had the headaches, the nausea, the intense sensitivity to light and sound. I was miserable and finding so many triggers that the only way to avoid migraines seemed to be to crawl into bed and not eat or drink anything.

I'd remembered reading about a possible link between gluten and migraines so I decided to try going gluten free. You can probably guess what happened. Yep, the migraines went away. Not completely, mind you, but there was a significant reduction in both frequency and intensity. (I also discovered that nitrates are something I need to avoid.)

I had hoped that this need to be gluten free would only last as long as my pregnancy. About two weeks after SG was born I tried to return to "regular eating." The migraines came back. They started out small but got worse and worse. Well, I'm not a complete idiot. I'm coming to realize that being gluten free is necessary for me to remain healthy.

Now our family has another reason to be gluten free. TB has never done well with grain. When he first started eating cereals as a baby he had trouble with constipation. It was so bad that I took grains out of his diet for almost a year. When they were reintroduced, he seemed to be fine with them. Now, he's seven years old and he's been having trouble with constipation again. So, after consulting with a doctor, he is going gluten-free as well.

Why am I posting all this here? Mostly to share information and help anyone who may be struggling with similar symptoms. While staying gluten free is hard, it is becoming easier and easier. There are so many more gluten free options available in the grocery stores now. Ten years ago when we first started this diet for LB I had a heck of a time finding gluten free flours and learning what to avoid. Now, you can find gluten free pastas, breads, pizzas, etc at the local grocer.

All in all, while being gluten free is a pain in the "you-know-where," for us it has been very worthwhile. If you are suffering similar symptoms to what I've just talked about, it may be something worth trying.