The frustrations of true Celiac disease and the complications that arise from it.

December 29, 2017
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Ever feel Frustrated with this disease?  Well, crap, I do!  And it’s hard because I’m such a social person who likes to have a good time. I grew up in a family of really great Italian cooks, and we loved to cook and eat together. Loved the social gatherings!     But…………..  there’s that darn but!  There’s always a but you know.

These past few weeks I’ve been going out to eat more because it’s holiday time.  While I love to cook, it’s still nice to take a break once in a while. Well, as a true Celiac , all this going out to eat presents problems, usually due to cross contamination issues.  So , it’s the same theme each holiday! You want to be out enjoying the festivities and being with people, but it seems there’s always a price to pay. Frustrating! And in my case, if I get into gluten, which feels impossible not to do sometimes I always end up with more problems due to the damage it does to the body.

For example:  Because I’ve been eating out more partly anyway , I have developed a new problem called Hypokalemic periodic paralysis. Lovely!  It’s a disorder caused from very low potassium levels. I believe that has been brought on by malabsorption and more damage as a result. This in addition to The other 3 autoimmune disorders I’ve developed from the Celiac disease.  My Celiac disease went undiagnosed for decades, and did a lot of damage. Bottom line, I’m still lucky to be here.  So I have to remain diligent, and it’s not easy! Because the cross contamination doesn’t just come from eating out, it comes from cross contamination in prescription’s, and supplements , which are all necessary to take if you have that much damage. And it’s up to me , or you to manage all this. We have to be our own advocates! No one else can do it for us.  The doctors, nutritionists, etc. can aid us, but it’s up to us to keep our eye on the ball, or the result is more damage. More damage that is irreversible I’m afraid!  The good thing is, if you catch the disease early you don’t end up with all this autoimmune mess.  But for those of us, who didn’t catch it early, still good news. It can be managed, it just takes a lot of diligence, and patience. Patience that may seem to run out at times , but always comes back around.  I talk about it with friends, pray, try to keep my mind on other things, all that helps.

The thing that I struggle with, is that I’m in it. And no matter how many people I have around me, to say I understand, when push comes to shove, I still feel alone in it.  It can make you feel isolated and alone.  So, it’s Tough to manage, but not impossible.  So for those of you who have Celiac disease, stay sharp, stay gluten free, stay positive, do what you can, because we all have a purpose. And you don’t want more damage. I have known people who have died from this disease, mainly because they didn’t take care of it. So, hard as it may seem, time consuming and all.  Do the best you can. Who knows, there may be someone else you can encourage along the way, who needs to feel like it’s ok.  Be well.  Not easy sometimes, but doable!  Right!  See you next blog!  Best regards to you. Iris

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