Our Story: Autoimmune Enteropathy

I could not write this post without testifying of the faith I have in a loving Father in Heaven who has been in the details. During the process of unfolding this disease to us and in giving guidance and assurances all along the way.  Still, what little information I’ve been able to find on this rare disease  just doesn’t seem like enough. After all, only a little over 1% of people in the U.S. have been diagnosed with it. As of today, Autoimmune Enteropathy is just a working diagnosis until further specialized tests confirm it, but understanding it has suddenly become very important to our family…

Autoimmune Enteropathy: Autoimmune enteropathy is a rare disorder characterized by severe and protracted diarrhea, weight loss from malabsorption and immune-mediated damage to the intestinal mucosa, generally occurring in infants and young children… As occurs frequently in autoimmunity, subjects with autoimmune enteropathy may be affected by other autoimmune disorders,…

Management of autoimmune enteropathy patients is based on nutritional support and adequate hydration to ensure optimal growth and development, together with immunosuppressive therapy.

-US National Library of Medicine National Institute of Health

My five year old daughter Miah – the only one of my children who inherited my dimples and her grandma’s red hair and fair skin, has possibly also inherited Autoimmune Enteropathy.  As a baby, although the sweetest and most mild-tempered redhead you could ever imagine, she was never “well”. She always had a cold, ear infection, was bloated and gassy, constipated or prone to huge diaper blowouts.

When doctors or even the dentist would shrug their shoulders and remark how “unusual” it is to see such and such a reaction to this or that we almost laugh, but normally just knowingly nod our heads. That’s been the often frustrating and confusing, yet at the same time interesting and enlightening part of this sequence of discovering just how “unusual” she is.

Well, I know this much…Miah was not born to be ordinary. She is extraordinary! 

Miah’s extraordinary qualities have become more and more apparent as the months and years have passed since 2012 when her life was threatened by what we were told was a “celiac crisis” and this whole journey started. The measures to get her to “recover” were drastic and we almost lost her. Thankfully, she bounced back on a gluten free diet and though she still had small relapses they were few and far between.

However, the symptoms have steadily grown more often and the harsh effects causing her to digress quicker with each episode. Though her silly dimpled smile, infectious laugh, and sweet little self still peeks through despite all this, it’s getting harder. She just doesn’t feel good. Even though she wants to play and do things her siblings do, she usually doesn’t have the energy or feel well enough to do it. The new un-diagnosis as of spring of 2015 was possibly Celiac and/or Crohn’s disease with unusual onset…or something more rare.

Everything I studied about Celiac, Crohn’s, and other gastrointestinal diseases said that a diet rich in chemical free foods that are easily broken down (monosaccharides), with plenty of good bacteria to repopulate the intestine (fermented foods like yogurt, kimchi, and kefir) should allow the digestive system to heal and possibly put the disease in remission. I highly recommend this thorough and extremely helpful book for anyone with a gastrointestinal disease by Elaine Gottschall called Breaking the Vicious Cycle: Intestinal Health Through Diet

During the last 6 months or so of repeated and worsening symptoms I have done all in my power to fend off the disease. I have narrowed down the gluten free diet to completely exclude all grains (gluten grains obviously, rice, corn, oats, and highly starchy foods like white potatoes), dairy, and refined sugar.  I have tried to make sure everything she ate was organic and that there was no gluten cross-contamination.  I have used essential oils and given foot massages to stimulate her intestines to function properly. And I’ve prayed. My husband and I have prayed a lot.

On our recent visit to the specialist at Primary Children’s (fall 2015), the doctor was encouraged by her growth – it was normal, despite the fact that she was losing weight rapidly from this most recent episode. He biopsied Miah’s intestines during an endoscopy and colonoscopy. His initial findings were positive. Her intestines looked normal! Far better than they had looked even 6 months ago. Then why was she pale, hunched over in pain, tired, with no appetite, moody, having severe (and might I add clear-a-room, sickeningly smelly) diarrhea and occasionally vomiting?

The biopsies told the real story…under a microscope her intestines were just as bad as they had been in 2012. So, yes the diet and all my efforts are helping – she is growing and it has allowed for some healing. However, her own body is fighting against itself. The doctors don’t know why…and there’s really nothing I can do about it.

So, now we have decisions to make. Pharmaceuticals and their side effects are really the only “treatment” that is known to manage such a rare disease. Even though I should feel discouraged and disheartened, for some reason I feel inexplicably hopeful! I feel hopeful that Miah’s extraordinary condition is part of her mission…and mine. I feel hopeful that we can pioneer a treatment plan that doesn’t involve a lifetime of medications. I feel hopeful that our prayers will be answered and she can be healed.

And for now that’s enough.