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!!!

 

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