My Gluten Free Journey

Celiac Foundation

This gluten free Nana has been around for awhile–at least long enough to have a few experiences and learn a few lessons along the way.  Learning to be gluten free has taken me down many paths.  And not all of them were in the right direction.  But first we need to explain a bit about celiac disease.  This site has great information and a symptom check list that might be helpful.

When 1 in 100 people have this auto-immune condition–and most of those are undiagnosed or misdiagnosed–it should be apparent that more education is needed.  The term “celiac disease” is not something I had heard until long after my first diagnosis–which wasn’t described as celiac disease.  Here’s how it started.

While pregnant with my third child, I broke out in itchy blisters at my joints–wrists, elbows, knees, ankles, and even on my eyelids.  It didn’t look like a normal rash and it was definitely uncomfortable.  So I went to a dermatologist who did a biopsy of one of the blisters.  He diagnosed it as dermatitis herpetiformis (DH).  He said it was a disease that was definitely not genetic (not true); it took many years to develop (not necessarily true); and it was an old man’s disease.  I was 30 years old!  Keep in mind that this was common information for doctors in 1980; they truly didn’t know more about it.  Then he prescribed a medication that was used for leprosy (no longer made) and told me I had to start a gluten free diet.  While gluten free is a common term today, in 1980 it was a new concept.  He gave me a typed list (no computers in 1980) of food I could eat.  It was about half a page long.  And he gave me a typed list of foods I could not eat.  It was 3 full pages and contained all the foods I had been eating and serving to my family for years.  I will admit that I didn’t stay on the gluten free regimen very long.  It was just too hard to do–especially in 1980.   Plus, the medicine was making the rash better so I just ignored the GF part of his conversation.

Within a couple of years we packed up our kids and moved from Texas to Tennessee where I went to see a new dermatologist to get a refill of my medication.  He did a lot of blood work and discovered that I was extremely anemic.  That had been true for many years and had caused a miscarriage at 19 weeks and problems with future pregnancies.  But no doctor had ever looked into the cause of the anemia until this one.  He immediately sent me to an internist who was convinced I had internal bleeding or leukemia.  The standard tests did not show any bleeding or leukemia and both doctors just dropped it.  Now that is something I just don’t understand and I have seen it happen way too often.  A doctor who orders a test that doesn’t give the result he expects but doesn’t look further into the cause of certain symptoms just makes no sense to me.  But it wasn’t the last time I would encounter this reaction and I didn’t know enough to be my own medical advocate.  Over the next few years I was diagnosed with pernicious anemia, irritable bowel syndrome, migraines, Vit. D and folic acid deficiencies, genetic hair loss, and acne (though I was long past the normal age for acne).  No doctor looked very far to discover the root cause and I didn’t either because I didn’t know any better.  Keep in mind that the previous diagnosis of DH was always listed on my medical records and any doctor could have seen it and every specialist I saw mentioned it.

After 2 decades of migraines, anemia, and digestive issues that always kept me aware of the location of the nearest bathroom, I finally got wise and started doing my own research.  By then, computers were making all kinds of research easier.  I discovered many references to a book by Dr. Peter Green called Celiac Disease: A Hidden Epidemic.  And I read this sentence, “If you have a skin biopsy and it is positive for dermatitis herpetiformis, you have a confirmed diagnosis of celiac disease. (page 52)”  Whoa!  Stop the presses!  And now my journey was headed in the right direction.  I read everything I could find.  I did a lot more research and then I went to my GP with a list of tests I wanted him to run.  Thankfully, I had a very open-minded GP.  He told me to come back in a week.  He wanted to study more about celiac disease so he could order the right tests.  That’s exactly what I did and since then we have both joined the journey.  He is the reason why I still drive 90 minutes away for a doctor visit even after living in a different city for 4 years.

However, the GF message still hadn’t sunk in like it should.  I often told myself that half a sandwich or roll or just one slice of pizza wouldn’t be a problem.  What I didn’t know was that eliminating SOME gluten from my diet was helping but was still causing damage.  If I had continued down that misguided path much longer, intestinal or stomach cancer was surely going to be the outcome.  The further away I moved from gluten, the more a small amount affected me and the sooner it began to hurt.  At first, it would take about 18 hours before my digestive system would rebel.  And that length of time made it harder for me to recognize the cause.  Now that my diet is completely GF, it takes about 15 minutes or a very fast and painful drive home.

Along the way, I have learned the importance of using GF products for anything that touches my skin–from shampoo and conditioner to make up and detergent.  I have discovered a really good GF flour blend for baking and cooking (more on this in a future post).  And I have learned to not apologize for trying to educate others about celiac disease.  I really try not to talk about it; but somehow it always comes up in conversation.  I need to work on that.  However, I am no longer anemic.  I have twice as much hair to style as I did 7 years ago.  I no longer get migraine headaches.  And my digestive issues are dormant–as long as I don’t get glutened.

Should you follow a GF diet?  Not necessarily, though there is plenty of research to advocate that a GF diet can be beneficial for anyone who has an auto-immune condition–from arthritis to diabetes and even fibromyalgia.  Should you talk to your doctor about it?  Certainly, especially if there is someone else in your family who has already been diagnosed with celiac disease.  Because it is always genetic–but often asymptomatic–it is likely that one or more of your first or second generation relatives might have it too.  And most of all–listen to your body.  Stand up for yourself when you visit your doctor.  Learn to be your own medical advocate!

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