Saturday, April 26, 2008


OK, everybody. Staci asked specifically for this info, but I've had SO many conversations with people recently about gluten, that I figured I would post it. I hope it is helpful to some of you.

First, our story. I got pregnant with Audrey when Hannah was only 8 months. By 11 months, I was so exhausted from being pregnant and breastfeeding together, that I made the tough decision to wean her earlier than I planned. We put Hannah on a combination of raw goat's milk, rice milk and water, she LOVED it, and we moved on. After 6 months on that formula, Hannah began to look kind of yellow. People would comment about it all the time. She also had a huge round belly, loose stools, and constant temper tantrums. She was also a baby that was hard to communicate with - she refused to make eye contact, even though I worked with her. She did not laugh until 6 months old. She seemed very "OCD", even as a baby. She would line things up all the time and get very upset when they were messed up.

At that time we took her to Dr P. He looked her over, tapped on her belly and said it was very swollen, and said we should take her off the goat's milk. She was 15 months old and I was 8 months pregnant. Her symptoms disappeared overnight. Two weeks later, a friend was feeding her child and shared a pretzel with Hannah. All the symptoms returned. I was confused, so I called Dr P. "You will have to keep her off gluten," he said. "Many times an allergy to casein, the protein in milk, and gluten, the protein in grain go together." "For how long do we have to keep her off gluten?" I asked, as I realized what that meant. "For a very long time." "Oh."

And that's where the journey began.

The symtoms of gluten sensitivity are very strange, because it seems to effect people hundreds of different ways. Here is a fantastic FAQ on gluten. Actually, just read the whole site. Here are testimonials where people tell about the terrible symptoms they had that went away on a gluten free diet. The distinctive telltale symptoms of gluten sensitivity are red, flushed cheeks, and digestive problems.

On a personal note, I have gone gluten free myself in the past couple of months. I am feeling better than I have in a very long time. I was having constant aching in my arms and legs, and often felt despressed for no good reason. When I stay off gluten, I have more energy, I do not ache, I feel happier and more stable, and my stomach feels great. Thursday night I ended up eating out and the restaurant where we went did not guarantee any gluten free food. I did the best I could to order well, but I still had a terrible day yesterday. I ached so badly! No food is worth that, no matter how good it tastes.

I should say here also - gluten is not the only allergy that can cause problems. I also have an egg allergy that is so intense, if I eat even a bite of bread with egg in it, I'm sick 10 minutes later for 12 hours. I avoid egg like the plague! I and my family are also allergic to all dairy (except I can get away with a little goat's milk yogurt and cheese now and then), most of us to soy, and several of us to corn. Hannah and I are also allergic to yeast - which incidentally is a common cause of Colitis.

So what do you eat, you probably want to know? Here's a common meal plan in our house:

turkey sausage (make sure it's GF! Shelton's is very good.)
cooked rice cereal with pure maple syrup and rice milk

open faced turkey sandwich on 1 piece rice bread w/ avocado
sweet potato chips

Chicken with stir fried vegetables
Brown Rice

applesauce cups
rice crackers
organic hot dogs
almond butter on toast

You get the idea. There are lots of options, you just have to know what they are. For the most part, it is all fresh - no "easy" packaged food. In fact, there's nothing easy about this. But in my opinion, life is too short to be sick all the time if there's something you can do to change it. I've said it before, but I'm fairly convinced that Hannah could have been diagnosed with Autism if we hadn't caught this. She's a different kid on gluten. By the way, here's an article about the gluten/autism link.

One last thing, because this post is really long. You have to do this for several weeks to see if it works. If you decide to "kinda try it" for a couple weeks, and hope there is some improvement, don't waste your time and energy. This is all or nothing, unfortunately. Dr P told us that with Hannah, one trace of gluten will set her back 7 -10 days. Some people it takes a year or more and then suddenly their body feels incredible. We noticed a difference after one week, and an even bigger one after about two months. And your body will feel even a trace of flour - eating out, except at a select few restaurants, is not safe. You're also better off getting rid of all gluten in your kitchen, cleaning out your toaster (crumbs, you know), and feeding your whole family gluten free. Cross-contamination is very hard to avoid. Get your husband on board with you first!

I don't mean to discourage you from trying this - I really hope any of you with unsolved health issues will do it, I just don't want to give you a false picture of what it's like. Imagine - feeding your family healthy, fresh food. Being healthy and strong... It's worth it!


  1. A response I wrote to a private email about this:

    Well, the way I think about it...what if "autism" is just the name the medical community has given to kids who are allergic to gluten? It's incurable simply because they refuse to admit it can be treated with a gluten free diet and other nutritional changes?

    This tends to be how I think about it. I don't think of Hannah as autistic, but she does have some of those tendencies just in her personality type, and definitely in her behavior when she's on gluten. Take her off gluten and she's perfectly able to live a normal life. So why call her autistic? No reason to. Just keep her off gluten, you know? I think we as parents are many times unwilling to accept a label like that for our kids, for more reason than just our own pride. Labels just generally aren't good for people! I avoid them like crazy! I have the hardest time calling myself an epileptic, even though all that means is multiple seizures, and that's what I've had.

    Incidentally, this is also how I feel about causes that raise money for diabetes and cancer and M.S. and many other "incurable" diseases. The Alternative Medicine community has known how to help if not solve these things for years, but it's not a drug or a surgery, so it doesn't get recognized. Really makes me mad.

    And, boys are definitely active, no doubt about it. There's a balance to find between looking for problems and paying attention to that mother's intuition that we have. Putting him on a gluten free diet will not hurt him, but it could help him process information better and be healthier. It's lots of work for you guys, but the results could be incredible to you.

    So, there ya go. Probably more than you wanted. :)

  2. Oh, by the way, I LOVE Larabars!!!!

  3. I think that this is incredible. The more and more I pay attention to nutrition and listen to testimonies (for instance Jenny McCarthy's son who is autistic was put on a gluten free diet and she said he improved drasticly) and as I follow your posts about you family and nutrtion it makes me realize that what if you are right? I do admit that some times I have thought okay she (you) must be over exagerating. How can you think that all that food effects you that much. But then if you swear (and other people swear) that these changes really do change your lives. It must have truth to it. What if the majority of our medical problems could be solved by educating people about their diets. What if more money was spent on helping people understand their bodies rather than spending money on making more medicine that seems to just cover up the problems and may even cause more damage. Also I wish that healthy foods and life styles could be more affordable. It's really difficult and some months impossible to spend money on organics and food of that nature becuase it's nearly double the price. It's discouraging, because like you say it can't be a part time commitment. I think that to do it and it to be effective it must be done 100%. To know that there could be answers to our health problems but a lot of the time they are out of reach for us. You know what I mean.

  4. The financial aspect of this is definitely frustrating. We make an average amount of money per year, but we have organized our financial lives in a way that allows us to spend what we need to on healthy food. We don't drive fancy cars or live in a fancy house. There are some ways to shop that are cheaper than others - shopping at locally owned health food stores can save you hundreds over Wild Oats or Whole Foods.

    But, something that people forget is how much money and energy you save because you're healthy! None of us has had to go to the doctor for sickness this winter, in spite of how bad it's been. I don't say that lightly or arrogantly, because this is not a formula, and we may still get sick, but I believe it's better than the other way, you know?

    And as far as the 100% thing, if you go gluten free it does have to be 100%. But, anyone can make steps to help their family be more healthy. I don't think that part is all or nothing, at all! And we do still cheat some - a little chocolate, eating out, etc. Nick is a huge fan of Starbucks rice crispy treats. :)

  5. i'm just glad i have my lovely friends who feel about this like i do. lower back problems are also linked to digestive problems as i am finding out from my chiropractor/naturopath. going gluten free has made an incredible difference in the long-term for me. short-term, i'll say, is hard. headaches, the whole nine yards. but my mom avoided cancer by changing her diet, and i am convinced this is the way to go.