Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

New Member From California
0

4 posts in this topic

Hey there everyone, Gassy Kassie here. That's a name I got as a child, when I had a horrifically distended belly and extreme flatulence. Don't believe me? Here's a picture of my lovely brothers, sister and neighbors making fun of me back in 1976 by calling me "Gassy Kassie" during a photo op: mean%20kids1.jpg

I'm the barefooted, high-waters wearing one with her head down. You can imagine how popular I was, what with the hand-me-downs, belly and uncontrollable farting. Thicker skin you've never seen...

Childhood trauma aside, I recently read "Wheat Belly" and it's whole explanation of celiac and recent developments (I mean since the 70's when I say recent), then I Googled "celiac" and found this great site and have been lurking ever since.

The things everyone in this community have contributed are eye-opening and have caused me to consider my own history, the apparent ignorance of family doctors relating to this issue, and my general lack of intestinal fortitude/constant state of exhaustion/propensity to catch any cold or flu that is out there.

In recent weeks I've lost sleep thinking about this because I've known about celiac since I was about 5 years old - when I was first diagnosed by a wonderful Canadian doctor visiting the Children's Hospital in LA, at which I had been diagnosed with cystic fibrosis, lactose intolerance, mental retardation, and behavior problems (see picture), and generally been issued a death warrant. That doctor took one look at my chart and threw out the "C" word, followed by the only cure: gluten-free for life! My parents put me on as best a gluten-free diet as they could (nothing was labeled back then and I had three siblings who I swear constantly attempted to kill me with Pop Tarts, but that's another story). The bloating and distention went away and achieved normal height and weight for my age (I was stunted before the diet). It also turned out I was not mentally challenged and merely recalcitrant.

As a pre-teen, and after a series of invasive tests by some quack gastro guy at some institute my parents had agreed to lease me to for two years for the greater good of society under the guise of "medical research" (seriously, multiple laperoscopies, various enemas and scopes no 10 year old should ever know about, funky diets, strange pills and concoctions, you name it), I was ceremoniously handed my first piece of pizza and it was announced by this quack that I had outgrown the celiac at the onset of puberty (that quack later became a gynecologist and lost his license for doing inappropriate things during exams - again, another story).

I remember being so excited not to be the weird kid anymore and not to have to go to that doctor anymore! I spent the next, we'll be nice and say 25 years, gorging on all things glutenous - especially beer and bread. I still had issues with my bowels and in my 20's, after a stint teaching English in rural China wherein I contracted dysentery, I met a doctor who ran a blood test for celiac, which came back negative so she said I was clear. I had a simultaneous diagnosis of B vitamin deficiency with a daily shot requirement that I ignored because I don't like shots and did not have medical insurance at the time.

Now I'm approaching 40, a wife and mother, and needing to take care of myself. The celiac thing has always lingered in my mind. I've always known I've had it. One doctor even told me it was for life back in college when I was having problems (tests not available then). I haven't had a biopsy, but look at the picture, my well-earned name, the toilet paper consumption in my household, my history. It's there, a classic case.

So yesterday, thanks to this website and all the members' honest discussions and links about this thing, I ate my last sticky bun from the German bakery down the street from my office (Note to self: move across from sushi bar), told my family I'm "Off the Wheat" (which my 4 year old announced at preschool this morning), and put all the glutenous pastas, crackers, breads, soups, flours (I'm a baker), etc in some bags to give away.

I'm doing it. Thanks to everyone on here for all their stories and experiences. I look forward to being a member here.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hey there everyone, Gassy Kassie here. That's a name I got as a child, when I had a horrifically distended belly and extreme flatulence. Don't believe me? Here's a picture of my lovely brothers, sister and neighbors making fun of me back in 1976 by calling me "Gassy Kassie" ...

So yesterday, thanks to this website and all the members' honest discussions and links about this thing, I ate my last sticky bun from the German bakery down the street from my office (Note to self: move across from sushi bar), told my family I'm "Off the Wheat" (which my 4 year old announced at preschool this morning), and put all the glutenous pastas, crackers, breads, soups, flours (I'm a baker), etc in some bags to give away.

I'm doing it. Thanks to everyone on here for all their stories and experiences. I look forward to being a member here.

Hello Kassie, welcome to the forum!

That is quite a story, and I love the spirit in which you told it, thanks so much for sharing! Sorry for the painful childhood events, but you sound like you came through it with a great deal of strength rather than having it destroy you. You've been through and overcome a lot. I see that picture and it makes me want to cry; no child should have to feel what you were feeling at that time.

Hope you'll soon be feeling great, see you around the place!

0

Share this post


Link to post
Share on other sites

Thanks Beach Birdie.

It's been 8 days and I've lost about 4 pounds notice I'm sleeping better. It's not easy and I'm hoping to survive the holiday weekend parties and restaurant visits. Already went to a sushi bar thinking that would be easy, and it was, to an extent.

I've got some reading to do on what I can get away with!

0

Share this post


Link to post
Share on other sites

What a story. It is filled with some very encouraging and some very sad things! I recently remembered that when I was 10 my sister thought I was pregnant, but it couldn't be she said. I looked like it that day.

I am glad you are going to follow the gluten free diet again. The sacrifices, I am finding, are worth the benefits. Get Better soon.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,119
    • Total Posts
      919,459
  • Topics

  • Posts

    • A new study confirms a link between intestinal viral infections and celiac disease. View the full article
    • Good luck with all the testing.  You are doing the right thing by telling your son to gluten up!  Buy him one of those gluteny cakes at a bakery...if that doesn't spike his numbers, nothing will. 
    • Thank you for this response! You are right, I'm sure. My sed rate was normal. My c reactive protein was 6, which is high. My platelets were a bit elevated and I was slightly anemic. I am going tomorrow for another endoscopy. I know that these things could be related to other things... but I'm thinking there is a change they are all still related to celiac (I'm hoping). What other autoimmune disease do you have, if you don't mind me asking?
    • HIV doesn't turn off the immune system, it destroys it to the point where most people die from complications that arise from having no immune system.  Some end up with pneumonia or cancer, which takes their life. It is pretty amazing the treatments they have developed for it, to slow it down and give people longer, quality time. I am perfectly content with the gluten free diet as my treatment and honestly, if they developed a pill that they claimed would make it possible for people to eat gluten again, I doubt I would. I could not bring myself to eat a food that I am genetically programmed to not be able to digest and that totally pisses off my immune system.  However, if they succeed with some of the meds they are working on now, one of which I posted about earlier this summer, I would take those.  They are working on things that modulate the immune system down so inflammation can be tamed down further.  Even with a strict gluten-free diet, there will always be more inflammation for us than for those who don't have AI diseases.  I do everything possible to tame it down myself but it isn't in the normal range.....yet. Long term inflammation can kill you so something along those lines would be welcome.  You would still have to eat gluten-free but the disease activity would be calmed down.  This is a drug that targets those with lupus and maybe Sjogren's....which I have.  There are possibilities for other AI diseases from that!
    • Hi Anns and welcome   Do you think that I am on the right course to see if I possibly have Celiac?   Yes, it was smart of you to consider the possibility and its good that you've had the tests. Both the aneamia and bloating are symptoms, although of course they may be unrelated. Best way to find out is to check as you are doing.   Can this develope later in life ( I'm 46)?   Yes, I think its most common discovered later rather than sooner.   I ate a meal last night that was gluten free and did not feel like nearly as bloated after eating, would I notice a change that quickly?  Thanksort for your input.   Yes, I noticed far less of a heavy feeling after eating very soon after diet changes. However you would be better off not trying gluten free just yet. I collected some links and other stuff here, it may be of use: Your best bet is to eat as normal and wait for the test results. If your doctors eliminate celiac there's nothing to stop you excluding gluten at that point to see if it helps. But before then you need to keep eating it to ensure an accurate diagnosis.  All the best  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,159
    • Most Online
      1,763

    Newest Member
    Anns
    Joined