Monday, August 20, 2012

Gluten-Free, Here I Come

I received my test results from the doctor today, and sure enough, I am positive for celiac disease, an autoimmune disease that both of my boys have (they tested positive nearly three years ago). As bad as I have been feeling lately, I am perfectly fine with this diagnosis. I do not have to wander the grocery aisles or wonder, "what in the world am I going to eat" as I have been living this diet through the boys for nearly three years. But now, where I would eat gluten when they ate gluten-free, such as pizza, I now join them.

What I found interesting - incredible - even is how little informed some family members still are about celiac disease, despite our constant explanations, saying yes/no to this or that being gluten-free, and how to prepare foods. Crazy! Perhaps some of you are familiar with the disease, perhaps not so I thought I would share a little if you are interested.

Celiac disease is an autoimmune disease. This means that the body attacks itself. In this case, the body creates an autoimmune response to gluten (all forms of wheat, rye, and barley, and contaminated oats) and attacks the body's intestinal tract. There are little "hairs" called villi in your intestine that do a few good things like grab up the nutrients from food your body needs as well as block the bad stuff from crossing the intestinal barrier. Well, in an untreated celiac person, those villi are flattened, leaving the intestines wide open for food particles to cross the barrier and prevents the person from absorbing nutrients. And this, my friends, is what causes a whole host of problems.

In nearly all cases, the celiac person has a genetic pre-disposition for it. There are lots of people running around with the gene, but something triggers that gene to come into play, like an illness or pregnancy. Once upon a time, celiac disease was thought to be an early childhood disease and the few children diagnosed with  it were literally on their deathbeds, unable to eat the very foods that sustained the "normal" public, and suffering from failure to thrive and malnutrition. But, science is catching up. Today, it is estimated that 1 in 133 people have active celiac disease (but I was told only 1 in 4,000 are actually diagnosed) - and this does not even go into the many, many more people who are gluten intolerant without having celiac disease! This is big stuff, and I believe you will find more and more people having to go gluten-free, and there will be a radical shift in our food consumption.

As far as symptoms, it can cause a myriad of problems, or none. Yes, that's right. All this nasty stuff can be going on inside of you, without you ever knowing, destroying your intestinal villi and increasing your risk for acquiring other autoimmune diseases, malnutrtion (which causes even further issues), osteoporosis, lactose intolerance, certain cancers (such as intestinal lymphoma), and neurological problems.

But, what exactly are the symptoms? Classic symptoms - what doctors typically looked for but many people with the disease do not have - are abdominal pain, bloating and diarrhea. Other symptoms, however, can affect not only your GI system, but your mind, your skin, your entire body: irritability, depression, anemia, upset stomach, joint pain, muscle cramps, skin rash, mouth sores, dental and bone disorders, neuropathy (tingling in the legs and feet), weight loss, diarrhea and/or constipation, gas/bloating, weakness, fatigue, stool changes (foul smelling, oily), stunted growth (in children), osteoporosis. And I am sure there are those who have walked this path that can add to this list. To show you how different people present, I will share my boys' pre-diagnosis symptoms as well as my own.

Skipper... As an infant and toddler he was pretty healthy. He had the typical colds and the odd high fever time to time. From birth, he pooped - a lot and all the time. It did not change (not until he was gluten-free). He was exclusively breastfed prior to solids and up through about 20 months. When he became ill with a fungal infection when he was nearly four, the diarrhea worsened. After mentioning it to the doctor, celiac disease was mentioned. Boy, do I miss that pediatrician! He also had unexplained anemia at one and a huge appetite. He was always a great eater, ate a wide variety, and had no problems with growth. He was off the charts until he turned one, where he has hung out at the 95th percentile for height. His weight did slowly drop to around the 50th percentile, but seriously he went from chunky to tall and skinny, taking after our typical family traits so I thought nothing of it (by the way, he still is very tall and still very skinny!). Closer to diagnosis he did start to want only gluten-filled foods like animal crackers, bread, pizza, mac-n-cheese, etc. And, I did notice he went through spells of not wanting dairy, and then trying it to only refuse it so I think that was due to a lactose intolerance, long since resolved on the GF diet. Really, if it had not been for that crazy fungal infection, we would have no idea what celiac disease was, but here we are. :)

Critter... diagnosed via bloodwork after Skipper's positive bloodwork and biopsy for celiac. If Skipper had not been first diagnosed, I believe we would have been led to this diagnosis through Critter. Like his brother, he was pretty healthy. And like his brother, his bowel movements were the same since birth only he was more on the constipated side. Looking back he definitely had the bloated toddler tummy but he was also quite a chunky one and was always bloated that we did not see it until he went GF and it went away. He also had issues with speech and no kidding, two weeks GF and he had a huge jump in speech! But what would have made me question the doctor was his growth. He was off the charts and at the top like his brother but the fall he was 2 1/2 I realized he was still wearing the same size shoes and the same clothes from a year ago! Plus, whereas his brother ate and ate and ate, Critter seemed to want less and less and avoided the very foods that were making him sick.

As for me, I am not really sure what is due to gluten, but what brought me to the doctor was a general feeling of not feeling well. As I have already mentioned, I have been struggling with depression for a bit now. Between that and the fatigue, the stomach seemed minimal. I did have bloating, cramps, and some stool changes, but I really thought that was from having dairy. I was tired of headaches, of looking pregnant (the bloat), of waking up and an hour later struggling to keep awake, of the wild mood swings, of the hunger, the irritability. I think it will be interesting to see what clears up for me going gluten-free.

So, as you can see, celiac disease can come across in many different ways. Even Miss Bear, who has tested positive for one of the tests used for celiac disease (though she is not confirmed celiac yet) is tall and skinny, starting to eat more and more gluten like her big brother did, and worst of all, is a very moody child. It has been tough, figuring out what is going on and what to do.

The only cure for celiac disease is a GLUTEN-FREE diet/lifestyle. No, it will not go away. It lasts forever. One little does hurt. Cross-contamination is a real thing. This means nothing made with wheat, barley, rye, and oats - like cake, cereal, bread, cookies, many soups, noodles, etc. - can be eaten. Thankfully we live in a time where many food choices abound and if you are willing to experiment in the kitchen, it is actually fun.

Anyway, I thought I would share so if you found this interesting, I am glad. Never fear to ask questions when it comes to someone's diet. I would rather you ask and learn than stumble about, ignorant and unwillingly to find out more.

4 comments:

  1. Praise God that you have some answers and are now on the road to healing.

    I believe the benefits of eating GF. My family has not been tested other than my own elimination diet. I can see the improvements in my entire family in ways that I would not have expected. Especially, my little guy's behavior. I suspect that he may have Celiacs. What test did you have done?

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  2. Yes, I am glad for a firm diagnosis! It's amazing that it was positive. In my heart of hearts, I really thought it would be negative (it's been less than 3 years since I was originally tested after all) and that I'd be struggling to figure out what was going on. I had originally planned an elimination diet but had a celiac test done first. Voila.

    My sons' response to the GF diet was amazing, even though their symptoms were not so apparent to me at the time.

    To test for celiac you must be consuming gluten. My doctor was knowledgeable on celiac disease and ordered up the full panel (aga-iga, aga-igg, total iga, ttg-iga, not sure on ema). I requested a copy of the results so I can share when I have them. If you've been gluten free for awhile I know they've been working on a test that requires a very short gluten challenge (a week or maybe less) but it's still in testing stages.

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  3. Wow, thanks for sharing all this. I'm so grateful that you and your family are starting to feel better. Deo gratias!

    My little girl (4 years old) has a wheat allergy that we've only confirmed through elimination diet. We are also gluten-free. Her allergy has returned after almost a year of no problems. But her symptoms are similar - tummy ache, HORRID stools and behavior problems. All that cleared up within 24 hours of going gluten-free.

    I would be interested to see if the gluten in her diet attributed to her height - at 4 she is barely 3 feet tall (we didn't catch it until she was about 2.5). Her pediatrician ran a bunch of tests on her which came back clear. We refuse the blood test because he said she would need to be gluten-ed for 2 weeks before the test could be administered.

    Sorry for the rambling, but this post is spectacular. :)

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  4. Kim, no worries on the rambling. I ramble myself. And it's always nice to talk with someone on a similar path I've found.

    It's very possible the gluten affected your daughter's growth. My boys had an immediate growth spurt on going GF - within a few weeks. Whereas I have lost 6 lbs (of bloat) in less than a week of going dairy-free and 4.5 days GF.

    I am glad you found some answers going GF. It is never easy being in the middle of a problem and a diagnosis. We're at a gray area with our third child and are unsure what we want to do. I have an appointment with the kids' GI doctor but I have to wait until October.

    By the way, I personally would not do a 2 week gluten challenge. Even if that's all you ate, assuming the doctor is doing standard tests, there is such a likelihood of a false negative result that I would be questioning. You know? Best of luck!

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