Unmasking Celiac Disease

As I've mentioned several times before, I have Celiac Disease, also called Celiac Sprue, which means I cannot digest a protein called gluten.  I was diagnosed when I was 14 months old, but before my parents received the diagnosis, my mom told me she felt like she was a piece of furniture in the doctor's office. 

I was always getting ear infections, and threw up all the time.  Instead of increasing, my weight was plummeting until, in the words of my dad, the skin on my arms was hanging.  But I had a puffed out belly, like those starving kids in Africa.

My parents couldn't understand what was happening, especially since Celiac Sprue was basically unheard of 30 years ago.  When I threw up the birthday cake at my first birthday party, my mom said enough was enough.  And thus it began.  The rounds of going from doctor to doctor to find out what was wrong with me.

They were given various diagnoses from various doctors, but finally ended up at the Mayo Clinic in Rochester, Minnesota (I am originally from Iowa), where doctors performed a biopsy by sticking a tube called a "snake" down into my intestines, and snipped a sample of my small intestines to inspect whether my villi had atrophied.  Well they had, meaning instead of looking like finger-like projections that were able to absorb nutrients, they were little stubs, unable to absorb many nutrients.  Which is why I was mal-nourished, despite being fed well my entire life. 

Healthy villi
 

 



Atrophied villi

 

See how with normal villi, the surface-area is larger, meaning it can absorb more nutrients?

Lately, gluten-free seems to be the buzz word, which is a good thing in my opinion.  Reflecting on my childhood, it was much more difficult to have Celiac Disease than it is now.  These days, almost any restaurant I walk into has a gluten-free menu, which is awe. some.  For the first several years of my marriage, I couldn't go to a restaurant and say the word "gluten" and have a single person know what I was talking about.  Now, I can say it freely and receive help with ordering.   

The reason I'm writing about this is that all around me, people are getting diagnosed with, and getting tested for, Celiac Sprue.  And even with all of the information about the disease that we have these days, a sure diagnosis still takes awhile for many reasons.  One of my favorite books that discusses this autoimmune disease is Celiac Disease, A Hidden Epidemic by Peter H.R. Green, M.D. and Rory Jones.  I have the old book, but there is now a revised and updated version, which is pictured above.  On the back of the book is a checklist of symptoms that can indicate gluten-intolerace, or even Celiac Disease, and I wanted to post it for you all as a reference for yourselves, friends, and family. 

I. Check each symptom you have had at least once a week during the past three months:

__ Bloating, gas, and/or stomach cramping
__ Diarrhea or runny stools
__ Constipation
__ Joint pain or numbness or tingling in your extremities
__ Itchy skin lesions
__ Constant unexplained fatigue
__ Frequent headaches or migraines

II. Check if you have had or been diagnosed with any of the following:

__ Irritable bowel syndrome
__ Eczema of unexplained dermatitis
__ Fibromyalgia
__ Chronic fatigue syndrome
__ Nervous stomach (non-ulcer dyspepsia)

III. Check if you have any of the following:

__ Lactose intolerance
__ Osteopenia and/or osteoporosis
__ Autoimmune disorders (thyroid disease [hypo/hyper], type 1 diabetes, Sjogren's syndrome, 
     chronic liver disease) or an immediate family member with an autoimmune condition
__ Peripheral neuropathy
__ Non-Hodgkin's lymphoma
__ Small intestinal cancer
__ Psychiatric disorders or depression
__ Anemia (iron deficiency)
__ Infertility


If you have checked one or more lines in section I and II and have any of the illnesses listed in section III, the information in this book may explain a diagnosis that will change your life and well-being.


Let's educate ourselves so that we can recognize the signs that the body gives when Celiac Disease is present. 

Love you all. 


Jenny :)