Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Greetings, All!


pmrowley

Recommended Posts

pmrowley Newbie

I've been a lurker on many Celiac forums for quite a while, and finally decided to "take the plunge" after checking out these forums for a couple of days. (You'd think I would have been more active sooner, as I've been a diagnosed Celiac for over 20 years now.)

A little history: I was bounced around from doctor to doctor when I was a kid, and underwent hundreds of tests to try to figure out why I wasn't growing, when I was supposed to be right in the middle of my pre-adolescent growth spurt. I was finally referred to the UC Med Center in San Francisco, where some experimental studies were being performed on a new diagnosis technique for celiac disease: Non-surgical intestinal biopsy. I think I was the second or third patient to undergo the procedure, and during the 8 weeks and 3 procedures during the diagnosis process, I saw a couple of evolutions of the biopsy device itself. (And was filmed for posterity during my first biopsy.)

Fortunately, I have a fairly mild case, from what I understand. On the RARE occasion that I have a contamination event, it usually results in about a day's worth of discomfort (mostly upset stomach symptoms.) Of course, as I've been on a total-exclusion diet for most of my adolescent and all of my adult life, I might have a more resilient gut at this point. ;) I just recently took the plunge and re-introduced oats into my life. I never thought I'd be so happy to have a bowl of oatmeal!

Needless to say, Can't say I have all or even many answers, but I do remember when gluten-free foods were few and far between, never mind eating at a fast-food restaurant! I'm used to having people look at me strangely when I explain my condition, but the advent of the Atkins diet has definitely made things easier in that regard. No longer do I get the crazy looks when I ask for a burger with no bun (and Protein-Style In-N-Out burgers are the BEST!) or ask for a salad, tossed in a clean bowl with no crutons. Hopefully, the day will come when Celiac is viewed in the US as something as important as a peanut allergy (and who didn't cringe when that happened, and all of the in-flight snacks on airplanes became Pretzels?!)

One thing I will mention though, to those who have tried a gluten-free diet, and are looking for a solid diagnosis for celiac disease; if you feel better being on an exclusion diet, why worry about the diagnosis? My wife, who is not celiac disease, joined me in my diet when we first started going out together. To this day, she says that she feels better and healthier on a gluten-free diet, regardless of whether she's a diagnosed Celiac or not. (Of course, she still eats the Fleming's Steak House creamed spinach, as her one concession, of which I am jealous of her to no end!)

Cheers,

-Patrick


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Canadian Karen Community Regular

Hi Patrick! Welcome to the board!! :D

There are a bunch of really great people here who are always there for support, guidance and a pat on the back when needed!

Glad to have you aboard - your expertise and experience will be an asset here!

Karen

flagbabyds Collaborator

Welcome! I know what you mean about there used to not be many gluten-free foods, I was diagnosed when I was a baby and don't remember Gluten containing foods, but I could never goanywhere without bringing my own food, but now I can. :) yes an exclusion diet is a form of diagnosis, many doctord don't believe in it but all you really want is to feel better. It is good that your wife is also feeling better on the diet. And if you want a firm diagnosis you would need to go back on gluten for 3 months which would not be fun at all :(

This is a great message board. I found it right when it started and even though I have lived with is for a very long time, I find new facts every day.

plantime Contributor

Hi Patrck! Welcome to the board! It is always good to here from long-time celiacs, the experience is invaluable. The diet itself is a scientific test, at least according to my kids' science teacher! I felt much better on the diet, so I didn't go for any further testing. I got confirmation by biopsy when the gi doc was looking for ulcers. No ulcers, but he did confirm what the diet had already told me! The only reason I can see for getting a formal diagnosis would be for young kids to get a 504 and other help at school and day care. Other than that, what we eat is entirely within our control, and that means our treatment of celiac is ours to control, too.

Come back and post often, we love making new friends!

KaitiUSA Enthusiast

Welcome to the board :D

Everyone here is great and so supportive ...come back and post sometime soon :D

  • 3 weeks later...
pmrowley Newbie

Thanks for the welcome! I've forgotten how good it feels to comiserate with fellow Celiacs. :) Reading everything is just what I needed to recharge my batteries! Every time I come off of these boards, I feel energized, and ready to fight the good fight again! ;)

Cheers,

-Patrick

Rikki Tikki Explorer

Welcome to the board Patrick. You will learn a lot of useful information here!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      My Journey Continues some notes

    2. - Cecile replied to Cecile's topic in Related Issues & Disorders
      3

      Symptoms

    3. - Jmartes71 posted a topic in Introduce Yourself / Share Stuff
      0

      Not validated

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      4

      New issue

    5. - Jmartes71 replied to chrish42's topic in Doctors
      3

      Doctors and Celiac.com

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,194
    • Most Online (within 30 mins)
      7,748

    TBH
    Newest Member
    TBH
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      I have increased my vitamin intake Vitamin B Complex plus 2 Thiamax, NeuroMag, Benfotiamine with breakfast. I continue reading and watching gluten free items that I eat. Breakfast is Bobs Redmill gluten-free oatmeal with Chobani zero sugar yogurt a banana and blueberries. Lunch since im at a deli gluten-free is hard to come by so I stick with turkey with gluten-free Promise bread. Dinner varies like gluten-free pasta, tacos, chicken, sausage, meat etc. rice or take out from gluten-free places. I have decided to stay away from gluten-free pizza as I feel I felt weird with it unless its store bought frozen. I am going to try to make my own gluten-free bread, Bagels. I have been good with baking gluten-free treats like cookies, muffins. Snacks if its not fruit, veggies I grab a protein bar or chocolate guilty pleasure reeses, hersheys, York PP. I am going to start to use my fitness pal app to track what I eat and note when I feel off to see if I can pinpoint if a trend of a certain gluten-free food is a culprit. I noticed once in a while I feel a little bloated, gassy that I think is from the pizza so I am going to avoid it and continue narrowing it down. I have been doing very well and I have learned even if you think you are doing everything 100% gluten-free eating it can sneak in without you knowing. This year is more traveling which im afraid of but have already looked into gluten-free places in Nashville which they have and back to Aruba I went last year and have the gluten-free places already selected. Most restaurants I have been to have been very helpful with what to stay away from to avoid CC. If a place states they don't have any gluten-free the I stick with a salad or when I took my kids to breakfast as much as I miss the breakfast this place serves I played it safe with yogurt and a fruit bowl so at least my kids were happy to go there again. Local farmers market has great gluten-free items that I treat myself to like different types of breads, baked goods. My journey continues...
    • Cecile
      Thank you Scott for your wonderful info. I will pry my Doctor for more extensive blood testing. I appreciate your time. 
    • Jmartes71
      After waisted time of new care team, yet again EXHAUSTED saw new gi today in Modesto, though all my ailments im not getting any kind of concern of me being celiac and sentive to just about everything since menopause. Dr daid why don't I go see you guys because my blood shows zero for celiac. I told him im glutenfree since 1994 by colonoscopy with biopsy positive celiac sprue by GI.Its RIDICULOUS when im bringing in material from this site of knowledge as well as the autoimmune institute,and  there's zero interest on their part.Medical IS causing me depression.Im view as a disability chaser, IM STILL RECOVERING from being a bus driver that im still healing and having more issues, now I may have multiple sclerosis or meningioma. Ive reached out, wrote letters, NOT feeling well. This is inhumane. 
    • Jmartes71
      I was taking medicine for sibo but it was not agreeing with my stomach at all.Was on gabapentin but it amps me up.I was taking in morning because it wasn't allowing me to sleep.This has always been an issue with medicine and me.Even going to dentist, the good shot that numbs you once, I can't take because it makes my heart beat fast and I  get the shakes.I have to take the crappy stuff and get injected always more than 4 times always.Its infuriating 
    • Jmartes71
      I showed one doctor I went to once because completely clueless of celiac disease and yes that one was connected to a well known hospital and she said oh thats just a bunch of people that think they are celiac coming together. I said um no they have doctors and knowledge behind what is being written. So bay area is Downplaying this site! SADLY 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.