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Newly Diagnosed And Curious

Npealer

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Npealer Rookie
Npealer
Posted

Hi everyone,

I am newly diagnosed with Celiac's (as in the last week) and I am curious how many other's have stories like mine.

I have never been someone who had a lot of allergies, stomach issues or anything else of the sort. I really thought that I was going to be diagnosed with RA or Fibromyaglia. For the last couple months I had more of the brain fog, fatigue, insomnia, bone and joint pain as well as neuropathy in my hand and arm. My doc ran a blood panel on me that just about tested for everything under the sun, I even had an MRI done hours before my official diagnosis came in. After reading some of your stories how you had years without any real help or correct diagnosis I feel lucky that I was diagnosed rather quickly. Of course it is not what I thought it would be and as soon as I learned what was wrong I went home and started reading labels. I meet with a nutritionist tomorrow and I am taking my husband with me so he can understand exactly what my diet restrictions are.

So I was just wondering how many of you had more of the symptoms I had VS the stomach issues more commonly associated with celiac disease? I have been very strict with my diet this last week and I already am starting to feel much better. I finally got rid of the headache that had been plaguing me and I already feel like my sleep is starting to return to normal. My next challenge will be to navigate my diet thru a weekend in Vegas.

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adab8ca Enthusiast
adab8ca
Posted

First, welcome! You are now finally on the road to health.

I am one of you in that I thought I was going to get diagnosed with MS or ALS or some neurological problem or cancer. I had bad neuropathy in my feet and hands. Terrible headaches. Weeks and weeks of headaches. Anxiety attacks that were unbearable and horrible depression. Insomnia where I did not sleep for days. I did lose weight (quite a bit) and had NO appetite but it wasn't an upset stomach at all, just not hungry. It was a shock to everyone that I had celiac (especially myself). I am very tall, pretty robust (although not fat, you would never call me skinny). My vit D was low, my iron was marginal as was my B12 but my bloodwork didn't seem to scream HOUSTON WE HAVE A PROBLEM WITH ABSORPTION.

I am 6 months gluten-free today and have more good days than bad. Depression and anxiety are gone, I sleep. I still have some neuropathy pain but 6 months ago, I was SURE I was going to end up in a wheelchair. My nerves were so painful I had to sleep with pillows under my knees so my heels wouldn't touch the bed.

But enough about me! I am glad you are already starting to feel better and if you have any questions, ask away

Ada

Npealer Rookie
Npealer
Posted
  • Author

Thanks Ada! I feel like I have learned a ton in this last week but have miles to go. I am sure I will be asking a lot more questions in the weeks to come :)

Korwyn Explorer
Korwyn
Posted

I didn't start developing GI issues until about 6 years before I was diagnosed. I had a lot of other wierd 'random' issues though, and also developed neuro and psych (depression, panic attacks, severe insomnia). I was very 'asymptomatic' - whatever that means these days. :) I mean when the Red Book lists over 300 known symptoms, conditions, and linked/related disorders, how can you possibly define symptomatic/asymptomatic?

MrsVJW Newbie
MrsVJW
Posted

Don't fear Vegas if you're gluten free! We made our first trip there last November, and were even able to hit some of our faves (Pinks hot dogs - no bun or chili for me, Fatburger - no bun, the chili there is OK) and there are tons of options and the servers and staff there seem to know the basics and just ask. Most of the higher-end restaraunts will be able to make accomidations from gluten-free if you can't find something thay already works on the menu. I think the La Salsa Cantina at the Forum Shops has a menu that is a little different than their other locations - I think their tortilla chips are okay (if they are fried in-house, I don't think the use shared cooking oil with any flour tortilla things). The only really bad thing about a Vegas trip is the sad airport offerings to and from, lol.

Brigit Apprentice
Brigit
Posted

Your story sounds like mine.

For the past year, I've had that brain fog (where you can't seem to string a sensible sentence together), tiredness (even though I'd sleep 8 hours) and bone and joint pain. My fingers would hurt the most and I'd just 'feel bruised'.

I also had very sore eyes and my hair was falling out.

The doctors just kept checking my iron levels and telling me to take tablets, even though my levels kept dropping, they didn't do much, except finally move me onto iron drips this past year.

I hope your husband understands and is wonderfully supportive and that you soon start feeling the results of eating gluten free.

And ask lots of questions on this forum, everybody is super helpful and it'll make the transition in your lifestyle smoother and quicker!

All the best!

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