Just For Fun is my way of sharing all the little things I like to do... from crafty things to thoughtful things!

Tuesday, March 11, 2014

Celiac disease is no joke...

If I hear another person say celiac disease is a wheat allergy or "gluten free" is a fad diet I may scream.  Ok, maybe internally (again), but if you talk about this subject around me and I *do* scream... well.. you'll know why.

I have a lot of trouble with food allergies, if was originally a plant or an animal, I am allergic to it.  I have "I can get away with this once in a while" allergies all the way to "Another bite of this threatens your life".

With my Celiac (also called Celiac Sprue) diagnosis, wheat and all its relatives moved from "I can get away with this" to "threatens my life".  I thought I wasn't having bad reactions, but I was looking for the wrong kinds of symptoms.

When I went to my Gastroenterologist about my acid reflux he felt my symptoms were severe enough to do an endoscopy.  I was surprised to hear everything looked fine and there was no evidence of problems related to acid.

There were however other indications and he took biopsies from several sites - which all came back "consistent with celiac disease".  Huh?

I'm 50 years old and only just this year having digestive issues - you know, acid reflux.  I may over do the wheat allergy now and again but no big deal, right?  Unfortunately it *is* a big deal... and a very good thing I was properly diagnosed.

Celiac disease is an autoimmune disease, which makes it easy for people to confuse with a wheat allergy, or a gluten intolerance - but they are not the same.

Celiac disease - the small intestine doesn't know what to do with gluten, so it gets inflamed.  It calls on the immune system which then overreacts after trying to "kill" the gluten and it actually kills the villi that line the small intestine instead, causing permanent damage over time.  This is what makes it autoimmune disease - the body's immune system attacks the body itself without recognizing that the body is not the invader.  It has a genetic component and cannot be acquired.

Gluten Intolerance - the digestive system has a hard time processing gluten and reacts with digestive symptoms.  The immune system is not triggered, and there are no permanent consequences.  It's the wheat version of lactose (found in milk) intolerance.  Some say these intolerances are increasing because of the way our food products are manufactured.  It makes a good case for organic and farm fresh foods, but that is a discussion for another day.

Wheat allergy - the allergy causing antibodies in the digestive system recognize wheat as an invader and trigger an allergic reaction much like I described above, from hives to anaphylaxis.  However, the immune system does *not* attack any part of the body itself - just the perceived invader.

All three conditions require the removal of wheat, its other relatives and for gluten issues rye, barley, sometimes oats from the diet. 

Next time you're at the market read some labels to see how many items are actually gluten/gluten grain free.  Wheat flour or food starch is found in almost everything from prepared foods to frozen vegetables.  It's not just about bread.  In addition, some gluten free foods are "manufactured in a facility that also processes wheat" - well guess what?  That just disqualified your product from my shopping list.

In addition, not all gluten free foods are actually wheat free.  This is ok for gluten intolerance, but not for those with an allergy.  Careful label reading is the most important thing we can do for ourselves.

For me, even though I have removed all gluten from my diet, I still have significant permanent damage to my small intestine.  It means I can't absorb nutrients properly, and never will. 

It means that for my (completely unrelated to celiac) hypoparathyroidism I have to take 1,000mg of calcium carbonate every four hours, round the clock, because my body cannot absorb it the way it should.  It doesn't even recognize other forms of calcium.  Yes, you read that correctly... I have to wake up at 3am to take calcium, every day for the rest of my life (and so does my patient husband).  If I don't, within hours low calcium levels will bring on muscle cramping and tetany and can eventually lead to seizures, heart irregularities and respiratory failure.

All from a little genetic blip and eating my PBJs.

The next time you encounter someone with any of these conditions, please be kind.  If it's someone with celiac disease, try to remember that they might be screaming inside... screaming for understanding about their condition, and about why those wheat toast crumbs left in the butter are serious business.  For us, it is.  Our lives may depend on it someday.


  1. Just thought I would add a bit more as I had a great question that may be of additional interest...

    Q. "... my GP did a blood test for celiacs but as I avoid as much wheat and gluten as possible I wondered whether this would affect the results?"

    A. My understanding from my own doc is that they are looking for the genetic marker in that blood test. If your blood test came back negative for the gene, then you are not celiac.

    Having the marker doesn't always mean a person actually is celiac either, but you have to have the gene to be in the pool. :oP So... my doc told me that the only way to be officially diagnosed with celiac is biopsy.

    That said, you may have a gluten intolerance which would cause digestive discomfort.

  2. Poor Jen. On the bright side, I have nominated you for the prestigious Liebster Award: http://steampunkaddie.blogspot.com/2014/03/let-me-call-you-liebster.html