Celiac Disease

I just realized that I have never explained my gluten-free life on this blog. (Must have been one of the other 10 I have started and forgotten!!!)

My youngest son was born in February 2012 at 32 weeks. My water broke at 30 weeks, and I was hospitalized until delivery. He was in NICU for a month, and I was back and forth between my 4 kids at home and my little man in the hospital.

Adorable, isn’t he??

After a couple weeks (March), I noticed a very itchy rash on my elbows and forearms. I thought it had something to do with all the hand/arm washing I had to do every time I went into the NICU unit (which was 4 times a day at a minimum). Then the rash appeared on my knees. It was so itchy, I would wake up rubbing my legs on the sheet trying to scratch my knees. When I googled rash on elbows and knees, Celiac Disease always came up. I mentioned it to my doctor at my 6 week check-up, but we both dismissed it saying I couldn’t have Celiac because I have no other symptoms. She gave me something for the rash and said let her know if it gets worse.

The rash never went away. After more research, I stumbled upon this blog. I was shocked at the atypical symptoms and how many I had. The one that hit me the most was the family history of non-Hodgkins Lymphoma. My father died from NHL in 2001. I was in the Air Force and stationed away from home the previous 6 years. So I don’t know if he had any typical or atypical Celiac symptoms, but that plus the other symptoms was enough for me to push for further testing.

For my symptoms, I could explain everything away. Exhaustion – I have five kids, and the youngest is still in the hospital expecting daily visits from me! Of course I’m exhausted. Allergies – check. Infertility – check. Premature babies – check (all 5 of my kids were born prior to 36 weeks!). Cold sores – check. Canker sores – check. Just random things that wouldn’t normally mean anything!!!

I mentioned this to my allergist, and she actually said, “Do you have a medical background?” Sure do . . . got my PHD from Google University!!! She sent me in for lab work. I also went to a dermatologist who tested the rash. Ironically, the rash was negative (which I still don’t believe. That was the ONLY reason I set out on this journey!), but three of the five blood tests were positive. So I had an intestinal biopsy in May, and it came back Celiac positive with severe intestinal damage. I was in shock!!!!

I am thankful to have a wonderful team of doctors that listen to me and order tests when warranted. My time from initial symptom to diagnosis was two months! Most Celiac sufferers go 10+ years before they get a diagnosis.

I do get some of the stomach symptoms now if I am “glutened.” For the most part, my main symptom is exhaustion. If I consume gluten, I can’t get out of bed a couple days later. This is bad because when I wake up with that feeling, I have to think back a couple days to see what may have had gluten in it. It’s hard to pinpoint the source by that time!

Going glute-free hasn’t been as difficult as I thought it would be. There are definitely some things I really miss. Over the last few years, I have changed my style of cooking and eating to more clean eating and dumped the prepackaged meals. That would have made for a much more difficult transition! I love to cook, and now I just have to make a few substitutions! The hardest part for me is eating out. We love to go out to eat once a week. There are times I feel like no place is as safe as my kitchen!

So, this is my new life, and I’m sure it will make many appearances in this blog!!!


About these ads

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s