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

Hey There!

penguin

By penguin
in Introduce Yourself / Share Stuff

Recommended Posts

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. :)

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

Celiac.com Sponsor (A8-M):


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?

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

Celiac.com Sponsor (A8-M):


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!

Archived

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

Go to topic listing

  • 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. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    2. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    3. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    4. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748
    Moooey
    Newest Member
    Moooey
    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

    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.