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Should I get tested for Celiac Disease?

mlec

By mlec
in Coping with Celiac Disease

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mlec Newbie
mlec
Posted
  • Author

I wanted to come back and give an update. I decided to have my rash biopsied when I got home from vacation and the results thankfully came back positive for DH. What really prompted me to go ahead with that was how reliably the rash would worsen within mere hours of eating gluten. I figured it would be the easiest way for me to definitely know and since I could actually see the damage I was pretty confident by eating gluten until the appointment something would show up. Luckily my experiments of going multiple days here and there in the weeks prior to the test didn't effect the results. (Obviously that probably isn't recommended and I was taking a chance at inconclusive results by going ahead with it so I'm fortunate I got the positive results I expected.) The dermatologist wants me to see a GI doc but for now I'm holding off on doing that because of all the reasons I mentioned previously. It is my understanding that DH qualifies me for the tax write off for food and the small intestine biopsy would just be a technicality and see how much intestinal damage is present. I will follow up with my family doc soon to do blood work and check for any deficiencies.

Since finding out I've done pretty well. I did discover gluten in my shampoo after wondering why my elbows had flared up when I hadn't eaten gluten that day. I had gluten unintentionally this weekend in some sushi and I'm recovering from that at the moment but it hasn't been too bad compared to how I've felt most days for the last year and a half while eating it. I did connect with a lady in my ED recovery group who has celiac and we have been talking about navigating gluten free in the context of recovery/remission from anorexia. I think part of me was scared I'd become afraid of food again but I think as long as my only rule is to replace gluten I will be fine. 

Now my latest gluten discovery is in my home hair color. I was about to color my grays when I read the label and noticed one ingredient was wheat gluten. I guess I'll exchange that for something different. If I was getting it done at a salon I probably wouldn't worry because of the way they rinse it out with your head tipped back in the bowl but at home I think it's harder to keep the water from running into my mouth accidentally. If I hadn't had the shampoo incident I probably wouldn't be so cautious. I'm sure some people can relate to trying to get well and not wanting to make things worse again!

I hope everyone here is doing well!

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squirmingitch Veteran
squirmingitch
Posted

I'm glad you got the biopsy done & have a definitive answer! Welcome to the club you never wanted to be a member of but you will persevere & and flourish. :)

mlec Newbie
mlec
Posted
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Thanks squirmingitch.:P

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