New Mama Musings

Thursday, June 28, 2007

"...and Let Medicine Be Thy Food" -- Hippocrates

So, where was I?

In part one of this post I discussed my growing interest in celiac disease. I should probably stop and explain just what celiac disease is, or at least how it's medically defined.

Celiac disease is an autoimmune disorder in which one's immune system views gluten -- a protein found in wheat, barley and rye -- as an invader. The body responds by creating an inflammation in the small intestine, which damages the villi (fingerlike projections lining the small intestine) and prevents absorption of nutrients from other foods. The medical gold standard for diagnosis is blood testing to identify antibodies against gliadin (a simple protein derived from gluten) and then, if the tests are positive, a biopsy of the small intestine to check for flattened villi.

There are many problems associated with this "gold standard," however -- false negatives are very common in both the blood tests and the biopsies. In biopsies part of the problem is that the small intestine is roughly 21 feet long (yes, you read that correctly), and if damage has occurred in only certain spots it's quite possible the biopsy will miss the damaged area and be taken from a "healthy" section instead.

So I started thinking that testing wasn't all it was cracked up to be -- you could have blood drawn and even have a tube stuck down your throat and your intestine scraped, and still have unreliable and inaccurate test results. And since Henry wasn't exhibiting any of the "classic" symptoms associated with the disease (malnutrition, distended abdomen, diarrhea) I wasn't sure his villi were actually damaged anyway. Also, false negatives are even more common in young children.

The more I read the more I started to think that mainstream medicine views this issue with too narrow of a focus. Again and again I read reports of people suffering terrible health problems who tested negative for celiac disease. Often their doctors told them they couldn't possibly have a problem with gluten, and sometimes they were even told that it was all in their head. These same people, after going gluten-free on their own initiative, noticed incredible improvement in their health.

It occurred to me that if doctors are waiting until they can see completely damaged villi before diagnosing someone as having celiac do they think that damage occurred? Did it just magically appear? Or more likely, did it start out as an intolerance to gluten that created problems little by little for years until the patient was desperately ill?

I now think gluten intolerance is the real issue and celiac disease merely one possible symptom of it. It seems like gluten, in someone who is intolerant to it, harms health in many different ways.

If you have celiac disease, you are gluten intolerant. If you are gluten intolerant, you may or may not have celiac disease. You also may or may not have:

  • Fatigue
  • Depression
  • Addison's disease
  • Gastrointestinal problems, like gas, bloating, diarrhea, constipation or reflux
  • Headaches
  • Infertility/Amenorrhea
  • Mouth sores
  • Weight loss/gain
  • Fuzzy thinking
  • Bone/joint/muscle pain
  • Poor formation of dental enamel
  • Anemia
  • Eczema
  • Seizures
  • Sinus problems
  • Tingling or numbness in the extremities
  • Hair loss
If you visit your doctor with any of these complaints -- hell, all of these complaints -- he or she is unlikely to suggest that you may be intolerant to gluten. Possibly, if you have severe diarrhea and exhibit signs of malnutrition, he/she might test you for celiac disease, but if your blood tests or biopsy come back negative, you will probably be told you don't have a problem with gluten.

I believe this is a situation where we need to listen to our bodies and do our own research. (Okay, that's every situation.) And since Henry is counting on me to do what's right for him, I scoured message boards and PubMed and finally found EnteroLab. EnteroLab tests stool samples for food sensitivities and specializes in gluten intolerance. Their tests are supposed to be much more sensitive and accurate than the blood tests traditionally used, since the immune response takes place in the intestine and not in the blood. You don't need a doctor's order to have any testing done by them. And although most mainstream physicians do not accept EnteroLab's test results, Dr. Fine, who perfected this mode of testing, has an impressive resume, which includes Staff Gastroenterologist at Baylor University Medical Center.

So I placed an order for the "Gluten Sensitivity Stool and Gene Panel Complete" which includes a gluten sensitivity stool test, tissue transglutaminase stool test (test for the autoimmune reaction caused by gluten sensitivity), intestinal malabsorption test, gluten sensitivity gene test and a free milk sensitivity stool test.

The testing package came, I swabbed the inside of Henry's cheeks (for the gene test), collected and froze his poop and dropped the whole thing off at UPS. And then I waited.

On May 23rd Henry's test results were e-mailed to me, and they indicated a very high immune response to gluten. Luckily, he did not seem to have any issues with malabsorption; my guess is that if he'd continued ingesting gluten it would only be a matter of time before he did. He also tested positive for a sensitivity to casein (the protein in milk), something we already knew from the testing done by the naturopath.

I had taken both of us off gluten (and dairy) about four weeks prior to receiving the test results -- even before sending in the test -- and I had already noticed a few changes.

The bumps on Henry's cheeks seemed to be disappearing, though the ones on his upper arms weren't changing much. (Photo is from August of last year.)

For my part, I noticed that my light-headedness was gone almost immediately. I thought I was feeling more energetic, and possibly less achy too.

It's now been nine weeks since we started eating gluten-free. The bumps on Henry's arms are finally starting to go away and his cheeks are completely smooth. I often stroke his cheeks while he's nursing and I have to admit, I feel vindicated: I knew those bumps were an indication that something was wrong. I knew it, I knew it, I knew it.

His stool is looking better, too, though I didn't realize it was abnormal before. Light-colored and slightly loose poops, as Henry had previously, are one sign of gluten intolerance. His dirty diapers now look much more normal. (Aren't you glad you know?)

He does still get some red patches on his skin, along with random bumps. I suspect we might be dealing with other food intolerances, or yeast issues, and I'm continuing to investigate.

And me? I'm feeling...not so great. I'm beginning to believe that the reason I felt so good in the beginning was that I was eating very little grains, simple carbs or sugar. But then I discovered a great big world of gluten- and dairy-free processed treats: cake, brownies, cookies and biscotti. (Just because it's gluten-free does not mean it's healthy.)

I think I'm currently dealing with candida overgrowth -- something common in those with gluten intolerance, by the way -- and I'm on day one of a anti-candida, healing regimen.

Ironically, it's a low-carb eating plan. Back in the day, when I was a vegan eating granola for breakfast, pasta for lunch, muffins for snacks and dinner rolls with, well, dinner, I mocked people on low-carb diets.

See how things have come full circle?

Seriously, though, in one year I went from eating lots of processed soy, low fat, lots of carbs/grains, and no meat or dairy. A year later, I'm eating no soy, lots of "good" fats (coconut oil and eggs), very little carbs and no grains, and lots of (organic, grass-fed) meat.

I also learned that I may have a problem with gluten; Henry's gene test showed two genes for gluten intolerance, and I gave him one of them. And from my research it seems like a heck of a lot of people have an auto-immune response to gluten.

And it's all because of Henry. His health is the primary reason I've been reading and researching and trying really hard to do what's right. Isn't that the amazing thing about having children?


  • wow! that's fascinating.

    I haven't gone anywhere as in-depth as you, but one thing that I did do, when others laughed, is let T. choose his own diet (yes, I know that people can choose what they are actually allergic to in this manner) and didn't bug him about his pickiness. Though I still worry a bit, I think that the fact that he was exclusively breastfed for 15 months, plus his very picky eating, shows that he had (or has) some food sensitivities/allergies. He also "outgrew" his asthma, diagnosed at 18 months, and despite the fact that I didn't give him the flu shot or regular inhalers...

    I'm sure you are familiar with Mendelsohn's How to Raise a Healthy Child in Spite of your Doctor???

    By Blogger bfmomma, at 9:38 AM  

  • Yes, great book. As you know, I am seriously wary of doctors...but to be fair, they can only know what they've been taught or what they have time to research on their own, and they are very overworked. Still, I believe in advocating for myself and my family and not taking a doctor's word as gospel.

    It does sound like T. has/had food sensitivities -- you're right that picky eating can be indicative of that. I think it's wise to let him choose his own path as far as diet is concerned. I used to think I'd be the kind of parent who would MAKE their kid eat whatever they were served. Boy, did I change!

    By Blogger New Mama, at 9:45 AM  

  • Fascinating stuff. I'm glad to hear that you've sorted some things out, and think you're on the right path. It sometimes amazes me that something as "simple" as eating is actually so incredibly complex. What a mess we've made of the process (and by "we", I mean culturally, societally, globally, etc.). Have you read The Omnivore's Dilemma? A really excellent book (if I haven't mentioned it already, lol).

    I know that wheat doesn't agree with me, although I still eat it (not nearly as much as I used to). I'm not so sure about M (although I don't think we're really designed to eat wheat, so in truth, it's probably not good for ANYONE), but you know she has lots of digestive issues, so who knows. She has a serious cracker addiction though (got it from her father), and I just can't figure out a way to get around that one, since he keeps them in the house all the time (and eats them with butter, ewww).

    But I so understand how being a parent drives you to better understand things and take better care of yourself, too. There's a whole lotta that going on here too, lol.

    By Anonymous gearhead mama, at 2:38 PM  

  • No, I haven't read that one. I'll add it to the list!

    My current area of research is yeast overgrowth. I thought of you and M. (and Henry!) because it can cause restless sleeping and/or insomnia.

    By Blogger New Mama, at 3:31 PM  

  • Hey New Mama, I'm really enjoying your blog! I myself and my oldest son (who's turning three) also have the little bumps on the cheeks and arms. DS also has the excema (a little bit) and sometimes red splotches. He used to get red splotches like that on his cheeks in response to egg whites, but he outgrew that recently. He also ghot those red splotches on his cheeks in response to second-hand cigarette smoke (when we were out in public near a smoker or something.) Anyway, I could write a book but food sensitivities is something I'm working on figuring out too.

    By Blogger Caitlin, at 7:34 AM  

  • Just wanted to thank you for spreading the word on gluten allergy. It a personal mission for me as well. I am linking to to this post on my site because I believe the more information "out there" helps us all. I have recently made the connection between ingesting gluten keratosis pilaris and have made a post on this subject. Your post gives me further insight as my son, age 19, whom I just purchased the interlab test from has keratosis pilaris on his arms but seeing the photo of your young son's cheeks reminded me that when my son was young he contantly had that same breakout on his face. So interesting....

    By Blogger artistdeb, at 3:13 PM  

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