Hello, I am a new member who has had WG for 13 years

[Hayley]

Hello everyone,
I am a new member to this site. I was diagnosed with WG at the age of 10. At that time I began having sinus problems and bloody noses. Within a month I was seriously ill. After three months of doctoring I was finally diagnosed with WG. I have been on a variety of different medications over the past 13 years. Methotrexate and Prednisone were not successful in my situation. Today I am on Cellcept, and Bactrum as well as many vitamins. I now have the energy to work, go to school full time and enjoy life. Unfortunantly Wegners has caused trachea stenosis below my voice box. Every year I have a balloon dilation to help my breathing. The dilation works great but only lasts about a year. I have recently started a gluten free diet which has made me feel better.
I look forward to being a part of the Wegners community!

[Aunnie]

Hi Hayley,
Welcome.I hope you find this site informative,comforting,and also a place to vent if need be!
Any questons or concerns feel free to ask ,we are all willing to listen and offer advice.
or at least make you laugh!!!

Aunnie

[sharon]

Hello Hayley,
welcome to our little community, sorry to hear you were diagnosed so young, but it is great to hear you are so well at the moment, living life to the full, working and going to school, some people take it for granted, but us weggies, know it is an uphill battle and nothing is guaranteed. Can't wait to hear the rest of your story and keep up the great attitude

[pberggren1]

Welcome Hayley:

You will find this site is like having a very large extended family. I'm glad to hear that the balloon dilation lasts about a year for you. Some people it only lasts a couple of weeks. I have never had tracheal stenosis myself.

Please keep us posted about your gluten free diet. It sounds very interesting. How long have you been off gluten so far? Right now I am trying to stay away from dairy to see if that helps any. I have been off dairy for about 3 weeks now. I want to see if my mucus production goes down.

Where are you from Hayley?

[Col 23]

Welcome Hayley
Glad that your enjoying life and sounds like your meds are working for you. The gluten free diet sounds good, we have had some discussions on that. Ive been thinking of at least trying some gluten free meals and see how I go. So if you have any great yummy recipes post them please.
cheers Col 23

[Hayley]

I started my gluten free diet about 2 months ago. I cut out diary, gluten, and red meat because they all increase inflammation. This diet is recommended for rheumatoid arthritis, but I experience quite a bit of joint pain with the wegeners so I thought I would give it a try. A year and a half ago I had to have knee surgery as a result of my long term steroid use. I had three screws put in my knee and have had knee pain ever since. I will say that cutting out dairy, and gluten has helped. I do have a gluten free cook book and will def. share some recipes. Today you are able to get just about anything gluten free. I would def. recommend giving it a try. Unfortunantly, gluten free products are a little more expensive, but so are all of our medications so we are no strangers to that!!
Have a great day,
Hayley

[Hayley]

Thank You! You all seem so supportive and it's very refreshing. I have had 13 dilations, 10 with steroids, and then the last 3 were baloon dilations with Mytomycin C. The baloon dilations last about a year. It seems like I have one every January like clockwork! With the steroid dilations I was having two a year. I will def. keep you posted on the gluten free diet. So far it has been about two months and I do notice a difference in my joint pain and energy level. I am also off dairy. I go back to the rheumatologist next month so we will see how it goes. Currently I go every 3 months.
I am from Wisconsin.
Hayley

[pberggren1]

Could you give me the name of the Gluten Free Cookbook, Hayley, so I could see if I can get it in a bookstore?

Do you go to the Mayo Clinic? I may go there in July or August to see Dr. Specks and an ENT. I have never been to the Mayo Clinic before and I am getting excited at the possibility of going there.

[Hayley]

Hey, I am at work right now but I will check the name and author for you when I get home. No actually I go to Marshfield Clinic in Marshfield, WI. Dr. Ejercito has been my ENT for the last twelve years. He's amazing. My rheumatologist moved to Alaska about three years ago and I don't really care for the one I see now. So that may change! I have heard nothing but great things about Mayo Clinic.
Take Care,
Hayley

[pberggren1]

Thank You Hayley. I look forward to hearing more from you.