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. - knitty kitty replied to oceangirl's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Lubriderm-gluten-free?

    2. - Scott Adams replied to Olenaideole's topic in Gluten-Free Foods, Products, Shopping & Medications
      18

      What apps or tech tools help you manage celiac disease?

    3. - Florence Lillian replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      51

      Supplements for those Diagnosed with Celiac Disease

    4. - Scott Adams commented on Jefferson Adams's article in Summer 2022 Issue
      5

      Once Promising Celiac Drug Larazotide Looks Doomed After Disappointing Phase 3 Trial

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

    • Total Members
      133,421
    • Most Online (within 30 mins)
      7,748

    Susan Kinley
    Newest Member
    Susan Kinley
    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

    • knitty kitty
      @Known1, I'm sure you can find a shelter or community service group that would appreciate your lotion donation.   I've replied to the topic of your bloodwork as it relates to vitamins in your "Introduce Yourself" post so as not to high jack this thread.   Thanks
    • Scott Adams
      The comments requested are very limited in scope, and I don't think this shotgun approach would be helpful, but that is just my 2 cents, for what it's worth.
    • Florence Lillian
      Hi all: Scott, I am glad you listed all your supplements, etc, many new to Celiac will be floundering as I was when diagnosed in 1979.  After much trial and error, the following supplements are now a daily MUST HAVE for me.  We have to keep in mind, too much can be just as damaging as too little. Further, I have found that 'brands' of supplements vary hugely! I tend to go with the newer ones as I find they 'digest' better, and digestion is HUGE with many of us. In hopes my input may help someone through the jungle of supplements:  I buy from Amazon. I take Naka Cal/Mag Marine Algae with Vit D.  Explanation here re/ Algae: I do not take anything with fish oil. I can't swallow large capsules so I chew them...a bit 'fishy' tasting but not bad. I was using a top brand but one day it tasted like...rotten, strong, yucky fish taste. I switched to Algae, I also have a 'thing' about farmed fish full of anti-biotics but don't get me started on that...I digress. I take extra D3, Celiacs need this.. I get the one from Sports Research, great company in U.S.A.  I also take B complex from 'Thorne' as well as extra B12 subliminal, another one Celiacs need. I agree with Scott the need for extra B12 for a clear brain. I also take a Multi vitamin with Zinc- Naka brand.  Also, K2 MK7 is a must for Celiac... and finally, I take Omega-3 Algae.  I truly hope this helps someone -  I know the struggle well.  Florence.  
    • Known1
    • catnapt
      it's not mysterious, it's currently not officially diagnosed as labs are presenting a very complicated case with multiple potential causes- and of course they each have a different treatment.    hmm... well everything you put in your body is interactive with everything else   are you assuming I have an iodine deficiency?  I seriously doubt it but I'll check the iodine content of my nori sometime to see if maybe I'm getting too much... too much is bad too. link doesn't work I've spent hundreds if not thousands of hours crafting a good optimal diet for my particular needs.  Yes definitely thousands of hours. I have enjoyed it immensely and will continue to refine my diet as it suits me and my own physiology.  . My body has decided it will not work properly, either due to an adenoma (benign) or hyperplasia and/or a small kidney defect (that remains to be seen but it's not looking good) and/or we don't yet know......... it does NOT look like it's one single issue, it appears to be at least two different ones not going to give out my full medical history here for ppl to second guess (unless one or more of you have a medical degree and specialize in gastroenterology, nephrology, endocrinology, rheumatology etc) I got permission to stop the drug I was on (I was going to stop it without "permission") so in the meantime I have to walk a VERY VERY fine line with vit D and calcium intake to avoid losing any more BMD than I already have. while I wait til the next round of testing I MAY be able to tolerate a gluten challenge that doesn't have the addition of a confounding variable (the drug I just stopped) it was impossible to tell what symptoms were from the gluten challenge and which were from the drug  
×
×
  • 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.