Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

statedrone

Introduction

Recommended Posts

Since I have posted a couple of times I should introduce myself. I am 36, and I was diagnosed with celiac disease August 17, 2006. I had to make my own diagnoses and then force the doctor to give me the test.

I guess I should start at the middle (the beginning would just bore you all). In 1999 I had gall bladder surgery, and after the surgery is when all of this started: gas, diarrhea, weakness, etc.). I went back to the doctor, and after seeing 2 specialists I was told I had IBS. I was given medicine and sent along my merry way. Only problem is, the medicine didn’t work. I felt worse. So I quit taking the medicine.

In 2001 I had a tubal, then in 2004 I started having gynecological problems (at least that is what I and the doctors thought) I was having SEVERE cramping, pain, nausea, etc.. Six months later I have a hysterectomy, the pain continues. I was about to give up. I just learned to live with it, thought it was stress.

Then in 2005 my sister got real sick. She went down to 79 pounds and was put in the hospital. She had the same symptoms. They had no idea what was wrong with her. Finally after about 4 months they diagnosed celiac. She is still way underweight (and is having a lot more problems than I am). However, we saw hope, we knew what was wrong and that is half the battle.

I went back to the doctor and suggested that it may be what I had. Basically told Celiac rare, blah, blah, blah. Then this year I dropped 70 pounds in three months, had diarrhea 14/15 times a day, still they said it was IBS. I FORCED them to give me a biopsy. It came back positive. The following week, I lost my job due to missed work. (They didn’t put that down as the official reason on paper, but was told that in person).

So now I am out of work and looking, and trying to get a handle on this disease. In some respects I am lucky, in that I was aware of what celiac disease was, and knew some of the lingo, and diet basics. But when it is YOU and not a family member your whole perspective changes. I felt like I had re-learn everything, I was a baby again, taking my first steps. My sister had her kids tested and one of them is positive. I have another niece that tested positive. So we are one big happy celiac disease family. The whole family has been great including my husband and mother-in-law. They are all supportive, and go out of their way to ensure we are not left out of events, and make sure that everything we eat is gluten free. It is amazing. I honestly didn’t think they had it in them. My brothers and sisters love to argue. So this is refreshing.

Well enough of blathering off at the mouth. Thought since I had started to post, the polite thing to do was introduce myself.

I also just wanted to say I have gotten some great information on here, so thank all of you.

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Hi, and thanks for telling us a little about yourself. Well, when will the doctors ever understand that IBS is a bunch of symptoms, that have a cause, not a valid diagnosis in itself? It is so frustrating. I am very glad you figured it out, and made them diagnose you accurately.

I hope you feel better soon, and find a better job, with a more compasionate boss.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

Share this post


Link to post
Share on other sites

Hi and welcome to the board--we already "met" on my painful gas thread :lol: I guess that's a fitting welcome to our world :D

I'm very glad that you got everything figured out and demanded the testing you knew you needed. Like Ursula said--they all too often label us with IBS and don't bother to find the underlying cause for our illness.

Having a supportive family is also a big plus! I'm glad you found us :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

Share this post


Link to post
Share on other sites

Welcome and thanks for sharing. :)

I'm glad you had the foresight and push to seek a diagnosis. It's a BIG plus to have your family behind you too. Great to hear!


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

Share this post


Link to post
Share on other sites

Welcome to the board. Feel free to ask any questions you need to.. :)


Stephanie

Gluten free since October 05

son born severly premature due to

celiac

"True love stories never end" Richard Bach

"Did you ever stop thinking and forget to start again?" AA Milne

If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you" AA Milne

Swimming Instructor #2 and Town Crier of Rachelville

Share this post


Link to post
Share on other sites

Welcome to the board! And thanks for sharing...we have all come such a long road to where we are. We are just happy to at least have everyone here for support. I am so happy you have a supportive family---I do, as well, and it makes all the difference. :)

Again, welcome---and let us know what we can do. :P

Share this post


Link to post
Share on other sites

welcome to the group. I'm sorry it was so tough to get to your dx, but glad you finally know what it is!


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

Share this post


Link to post
Share on other sites

Welcome

It sounds like you already have a good handle on this. And it is so refreshing to hear that family members are understanding & also getting checked -out to see if they also have problems. The parents are so lucky that they found out early enough to make a positive change for their life.I wish I could get my family on the bandwagon!!! Four of us so far & I know there are several others but they will not even consider getting tested....

You know the old saying: you can lead a horse to water but you can't make him drink...............that's my family

blessings

mamaw

Share this post


Link to post
Share on other sites

Oddly enough my story began much like yours with gallbladder surgery and a year's worth of scopes, medicines that didn't do anything, weight loss and fatigue. We tested my daughter for it, but it came back negative. Nevertheless, she seems to be responding well to the gluten-free diet so we may stick with it.

Fortunately my doctor suggested testing me for Celiac, or probably would have suggested it myself. Healing takes a long time, but it beats the alternative, doesn't it?


It's not about winning, it's about having fun while you play. Gamecreature

Share this post


Link to post
Share on other sites

I just wanted to say thank you everyone for your words of encouragement. As I stated earlier, I have learned so much. Everyday I call my sister with another tidbit about celiac I learned here. Thank you all.

Share this post


Link to post
Share on other sites