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penguin

By penguin
in Introduce Yourself / Share Stuff

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penguin Community Regular
penguin
Posted

Hi all!

Yeah, yeah, I've been conspicuoulsy absent but we won't discuss that, now will we.

First update: Yes, I definitely have Crohn's Disease. The colonoscopy (boy, that was fun!) showed the tell tale lesions of Crohn's on my ilium, although biopsies did not show the particular cells that are the gold-standard for diagnosis. The doc had me gene tested for Crohn's through Prometheus (I should have had him do celiac gene at the same time, but I didn't think of it), and I have the gene and "enzyme activity". I was put on a low-residue diet which is basically a low fiber diet and that has been a diet I've only half stuck to. I like my fruits and veggies, and especially my corn thankyouverymuch. I'm getting somewhat better in spite of it. I'm currently taking entocort, which is a poorly absorbed steroid, but I'll start Remicade soon since my insurance just approved it. Apparently each infusion costs around $5000, and doing that every 8 weeks is going to get spendy for my insurance company, but luckily it's covered 100%.

Secondly: I started culinary school last week! My first lab class won't be for another 5 weeks or so, but even then I don't have to worry about gluten for a while. I'm working with them for accomodating me, but the plan isn't set in stone yet. They're supporting me 100% in my allergies. I'm not worried about it, after all, it's for a year. I can deal with anything for a year.

Thirdly: Gluten-wise. I know two things for certain right now: I am allergic to gluten and I have Crohn's.

What this means is I have either:

1: Just an allergy that causes sinus, stomach, and hive issues and Crohn's is what was causing all the other issues

2: Gluten is a trigger food for my Crohn's and I need to stay away from it anyway

3: I'm intolerant/celiac in addition to any other issues I have. This is the opinion my doctor has, since both that and Crohn's are autoimmune.

I don't know, I just know I have to stay away from it. I'm not that good at staying away from it anymore, but I am getting better. I feel best without gluten and when I'm eating right in general. Once I get the Crohn's in remission, I'll have a better idea about where I am with gluten. I can't eat it anyway, but it would be nice to know for sure what my particular problem is.

That's all I got. :)

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Rusla Enthusiast
Rusla
Posted

Well hi again. Glad to hear you have found some things out. Be careful in Culinary school, don't be poisoning yourself.

I hope with all this global warming you still have an ice flow left. Best of luck with all your endeavours.

plantime Contributor
plantime
Posted

Hi Chelsea! Glad to see you, thanks for the update!

Carriefaith Enthusiast
Carriefaith
Posted

It's nice to see you back. I hope that the Crohn's goes into remission.

Canadian Karen Community Regular
Canadian Karen
Posted

Hey Happy Feet! Wuz up? Glad you poked in here!

I second what Rusla said - don't go getting yourself poisoned now!

Hugs.

karen

Nantzie Collaborator
Nantzie
Posted

Hi! It's good to see you back.

:D

Keep us posted on the culinary school. I've been thinking about that myself at some point in the semi-distant future.

Nancy

tiffjake Enthusiast
tiffjake
Posted

What up yo? Cold, ain't it?

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Viola 1 Rookie
Viola 1
Posted

Hello, it's great to see you back! I hope things go well with the Crohn's and you get better real quick. Don't be such a stranger and pop back in now and then to let us know how things are going :P

psawyer Proficient
psawyer
Posted

Welcome back! :)

Canadian Karen Community Regular
Canadian Karen
Posted

Peter, gotta tell ya, I love your avatar! So typical cat, eh? :lol:

key Contributor
key
Posted

I have been wondering how you were doing. I am glad you finally got a diagnoses.

Just out of curiousity, what were your symptoms? Did you have bad D?

I am going through a very rough time right now and going to the GI tomorrow. I am hoping to find some answers, but not looking foreward to the colonoscopy and endoscopy. I am such a chicken.

Take care and hopefully the crohn's will go into remission soon.

Monica

penguin Community Regular
penguin
Posted
  • Author
What up yo? Cold, ain't it?

Yes! I'm in 3 pairs of socks, pj pants, a sweatshirt, and a quilt. Stupid shoddy Texas insulation. At least I got my birthday off of work :P

I have been wondering how you were doing. I am glad you finally got a diagnoses.

Just out of curiousity, what were your symptoms? Did you have bad D?

Yeah, I had D that wouldn't go away entirely even on a gluten-free diet, and I started getting a burning feeling in my intestine just under my navel, and I went through a couple weeks where I couldn't keep anything down. I thought my dr. wasn't giving the diet enough time but he insisted on doing a small bowel follow through x-ray just to check. They found narrowing and then did the colonoscopy and confirmed the dx. I'll likely be on drugs forever, but it's worth it if it will make me feel better!

Good luck with your testing!

lonewolf Collaborator
lonewolf
Posted

Welcome back! Sorry to hear about the Crohn's, but at least you have more infomation.

Lisa Mentor
Lisa
Posted

Welcome Back Chelsea.

It is nice to get an update about you.

Lisa

dlp252 Apprentice
dlp252
Posted

Hi Chels! Great news...not a fun thing, but at least you know what you're fighting against now!

jerseyangel Proficient
jerseyangel
Posted

Hi Chelsea :)

Thanks for popping in and letting us know how you are doing. I'm glad that at least you now know what you're dealing with, and are able to take steps to get better.

Best of luck at school--it sounds very exciting! I'm sure all of the details will fall into place as you go along. They sound great about working with you on your allergies and such.

Take care :)

DingoGirl Enthusiast
DingoGirl
Posted

Nice to see you Chelsea. :) Keep us updated.

nikki-uk Enthusiast
nikki-uk
Posted

Hi-di-ho !!

Ta for the update.So good to see you back on here.

Hubby's hoping to start Remicade too for his arthritis (injections though)

Let us know how you fair ....we can trade side effects.. :unsure::lol:

tarnalberry Community Regular
tarnalberry
Posted

Welcome back. :)

I'm sorry that it came back Crohn's but glad you got an answer. And woot for culinary school! That's *so wonderful* you found someone to work with you!

penguin Community Regular
penguin
Posted
  • Author
Hi-di-ho !!

Ta for the update.So good to see you back on here.

Hubby's hoping to start Remicade too for his arthritis (injections though)

Let us know how you fair ....we can trade side effects.. :unsure::lol:

Yeah, I'm so looking forward to those infusions! :o

At least it's not a pill everyday, right? :rolleyes:

2Boys4Me Enthusiast
2Boys4Me
Posted

Welcome back. I'm so glad to hear the culinary school will be working with your allergies.

I'm sure we all look forward to yummy gluten-free culinary school recipes. :lol:

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Hi, Penguin! Glad to see you! I make your ranch chicken fingers (or fish) practically every week!

AndreaB Contributor
AndreaB
Posted

Chelsea!

Glad to see you and thanks for the update.

I'm glad you got a firm diagnosis and can head toward recovery/remission.

I'm excited for you and culinary school. Hoping you'll keep us updated with that as well. :)

AndreaB Contributor
AndreaB
Posted

Oh, I forgot.

Don't know if I told you to check out Barbara Kerr's site.

I think it is tasteofhealth.com. She has chron's and I believe her story is on the site.

olalisa Contributor
olalisa
Posted

Welcome back, Penguin! You have been missed. I particularly have missed your humor and your insightfulness. Sorry to hear about the Chron's but glad you can now be treated for the problem.

Keep us updated on school, especially any new gluten free gems!

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

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      Finding gluten free ingredients

      By trents · Posted

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