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.

  • 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. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

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

    3. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    4. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

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

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

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748

    avery144
    Newest Member
    avery144
    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

    • trents
      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
      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.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
×
×
  • 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.