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

Recommended Posts

penguin Community Regular

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

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

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

Carriefaith Enthusiast

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

Canadian Karen Community Regular

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

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

What up yo? Cold, ain't it?


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



Celiac.com Sponsor (A8-M):



Viola 1 Rookie

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

Welcome back! :)

Canadian Karen Community Regular

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

key Contributor

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
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

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

Lisa Mentor

Welcome Back Chelsea.

It is nice to get an update about you.

Lisa

dlp252 Apprentice

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

jerseyangel Proficient

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

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

nikki-uk Enthusiast

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

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
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

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

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

AndreaB Contributor

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,606
    • Most Online (within 30 mins)
      7,748

    TGreen
    Newest Member
    TGreen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
×
×
  • 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.