5 1/2 Months

[SGWhiskers]

5 1/2 months ago ago, when I was newly diagnosed, I scoured this forum daily trying to learn as much as I could. I especially appreciated the stories of people sharing their recovery. I thought I would give back what I have experienced since my diagnosis for those newly diagnosed.

The last week of August 2008, I had my endoscopy. I was certain going in that I had celiac, but I wanted proof for my family and myself that I needed this diet to be well. The first weeks I tried everything I thought REASONABLE to get rid of gluten. I kept the oats and ate up items that didn't have obvious gluten. Then the 3rd week, when I had seen no improvement, I started to get compulsive. I cut oats and started making my husband grill my meat on foil. I only ate fresh fruits, veggies, meat, rice and potatoes. I bought myself new gluten free soaps and shampoos. I started handwashing like an obsessive-compulsive. Slowly, I started seeing improvement. And I mean SLOWLY!!!!! With the exception of 2 days since becoming gluten free, the changes were something that I had to look back and reflect upon. Those 2 days, I ran 30-100 yards for fun). I accidentally glutened myself regularly during the first 4 months of gluten-free living. I'm still making mistakes, but for the most part, I'm pretty good. I've figured out that I'm extremely sensitive with hot gluten and broken gluten that has gotten airborne giving me temporary reactions. I've figured out that I don't get sick as often if I don't eat with my hands (even well washed). Now I only use utensils. I've found that a week or two after changing a bad habit, I could look back and see improvement. All those expensive or medical grade lotions I had were full of tocepherol. Once I stopped them, I started feeling a little better. No one change made all the difference. It has been cumulative little changes. And time. I HATED to hear that I needed time. The truth is that time of gluten free living was the best. I was fortunate enough to be able to return to work 2 months ago. I'm still tired at the end of the day, but I now know the difference between exhausted and just tired. Every day, I think about celiac 59 times. I think about the spinning that is still in my brain. I think about the pain that is still in my hip. I think about the imaginary film of gluten that is covering my hands. I think about the label I touched at work and the funny piece of something floating in my tea mug. I think about the years and the children celiac robbed from me and the wonderful doctor who solved my mystery illness. I think about how good I might feel in a year or two. I think how happy I am to work again and to be alive. Alive from the inside out.

Things I have learned:

There is a path to healthiness for a celiac.

Compulsiveness is directly related to improvement in health

It takes a LONG time

Time flies when you start feeling better

ALWAYS have food available

3-5 weeks for the first signs of improvement

3-4 months for the ravenous eating to slow down

tocepherol is gluten in disguise

A gluten-free kitchen is better than mixed. (I wish it wasn't).

gluten-free brownie mix must be in the pantry

Cravings for forbidden food pass.

It is OK to take a lunch box into a reastaraunt. Just tip the waiter.

Things I have yet to learn:

where I can find gluten-free cockatiel seed

How to make good recipies again (I'm starting though this month).

How to part with my Calphalon that is in good shape

How to clean the gluten out of my carpet around the bird cage

How to eat out without getting sick

What will trigger my glutening next.

I wish all of the new people loads of health.

For all the old people, thanks for being there when I needed you most.

SGWhiskers

[mimommy]

5 1/2 months ago ago, when I was newly diagnosed, I scoured this forum daily trying to learn as much as I could. I especially appreciated the stories of people sharing their recovery. I thought I would give back what I have experienced since my diagnosis for those newly diagnosed.

I'm still making mistakes, but for the most part, I'm pretty good... I've found that a week or two after changing a bad habit, I could look back and see improvement. ..I HATED to hear that I needed time. ...I think about the pain that is still in my hip... I think about the years and the children celiac robbed from me

Things I have learned:

There is a path to healthiness for a celiac.

Compulsiveness is directly related to improvement in health

It takes a LONG time

Time flies when you start feeling better

gluten-free brownie mix must be in the pantry

sg whiskers...I have scoured this forum for info. daily (first as a guest, now as a member), since the very first time I heard the term "celiac disease" one year ago. What a frightening, overwhelming concept to deal with, especially when you or your loved one is ill--so much information to process. This forum has been an invaluable resource for my family. The stories of recovery offer hope to those of us still learning. I think it is very important to hear another person say, "You will get better" when you are feeling that you never will.

I am sorry to hear that your hip is not healing--I know how you feel on that one.

I am still making mistakes, also, with my child's health at stake--but it is a definite learning process and every day we get better.

I am sad to read of your loss, of both a healthy life and a family. Would it help to know that what you learned from your struggle has helped another?

I agree--there is a path to health for celiac, and it begins with an open mind and a readiness to heal--even if it means contradicting a respected doctor or a family member.

You call it 'compulsiveness', I call it 'advocating'. Be your own and your family's best advocate! "Trust you GUT"!

You mentioned 'time' more than once. If someone told you when you felt your absolute worst, that in a matter of months you would be feeling a little better, and in less than a year you would be well on your way to healing, would you have believed it? Reach around and give yourself a pat on the back--you have conquered what may have seemed impossible to you only a few months ago. This disease took time to damage your body--your body deserves the time it needs to heal; be patient.

And finally, yes--gluten-free brownie mix is a must for any hot-blooded, choco loving celiac!!

Congratulations and keep on keepin' on--you're worth it.