My Gluten Intolerance Story

A few words on, Dermatitis Herpetiformis, or as I like to call it "hell."

If you are reading this, chances are you are also suffering from some sort of reaction to gluten. There are many symptoms but my only two symptoms were belly bloating and intense skin itch, in the same few areas that appear on both sides of my body, meaning if it is on my left elbow it is on my right etc. 

This all started in 2011 and I only got a proper diagnosis from a dermatologist last October, 2014. To be fair, DH is easy to misdiagnose. I have been told I have eczema, an allergy to black clothing, bug bites and stress. It was only when I was told to try taking gluten out of my diet that the itch subsided.

It began as two little itchy patches on the base of my buttocks on each leg. I am talking tiny spots like from a black fly. The difference was, scratching this spot lead to bleeding, whereas with a bite, this does not usually happen and mosquito bites do not last for weeks. My experience with bug bites is it itches and stings for about 3 days max.  Now, years later, I have it in all the common DH areas. Luckily it is not as bad as some cases but I am diligent about what I eat.

DH, is an itch unlike any other that I have experienced. If you are suffering from this, I just want to give you a big hug because I could not really find anything on line to make me feel like I was not alone.

I feel your suffering.
I know you are not making it up.
I know that you want to rip your skin off at times and that you press so hard after you scratch that you leave bruises sometimes.
I know that your "spots" may have become infected, and that now you have unsightly scars that you are probably afraid to show.
I know that you try to not scratch and that everyday you tell yourself that this is the day you will stop scratching .
I know that people who are trying to sympathize inadvertently hurt your feelings by telling you "to just stop scratching."
I know that you feel guilty every single time you give in to the relentless need to scratch.
I know.....

But there is hope. What I am telling you, is that this disease is not all you are about.

You are a fabulous, vibrant person with a purpose.

Do not let this diagnosis become all you are about. It is a tiny part of what makes you great.  I tell myself that it is a relatively small battle I am fighting. And I will win. And so can you! The positives of this struggle are plenty, believe it or not. We have joined a community of people who now know how important it is to be supportive of others dietary differences. We are making healthier choices for our bodies by taking gluten out of our diet.  Learning to cook gluten free 'from scratch' has benefited my whole family. I am now aware of what is in all the processed foods that we have typically been eating. Knowledge is power!

My words as of late, "this diagnosis is the best, "worst", thing to ever happen to me."

Yes, I had to change everything I eat.
Yes, I had to invest in cross contamination proofing my kitchen.
Yes, I cannot socialize the same way I used.
Yes, I have to bring my own food wherever I go.
Yes, I cringe inside when someone offers me something to eat that they have made just for me...
Yes, I have bad days where I just wish I could escape all of this hassle.

But...

Now we are better off knowing what is causing the #@#$^% skin itch.

I hope that these words help you to feel you are not alone.

We can get through this!
I hope that this helps.
Beth Oldfield