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Celiac And Crohns

SteveW

By SteveW
in Related Issues & Disorders

Recommended Posts

SteveW Rookie
SteveW
Posted

Well I just got the news from my GI that he's 90% sure I have Crohns on top of having Celiac Sprue :angry:

I recently was given a script for Prednisone and within a week all my GI issues are for the most part gone. I still have a pain on my right side under my last rib that comes and goes but other that that I feel physically beter than I have in the past 7 months.He's taking my off the Prdnisone slowly and putting me on Pentasa in it's place.

I'm stilled freaked out. Crohns seems a lot worse than Sprue to me. I'm mentally spent right now.I know it's not a death sentense but just knowing I have this stuff is a bummer.

Anyone else have both?

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Karina Explorer
Karina
Posted

Steve,

I am currently being worked up for Celiac (endoscopy done last monday). My doc said he thought I may have either celiac disease or Crohns based on my symptoms (I had right sided abd. pain--but then it started moving around). Anyway, when my Celiac panel came back suggestive, doc set up endo and told me that he thinks I have celiac disease, but that it may not be the cause of ALL my symptoms. I am wondering if he is thinking Crohns still. I hope not, if I had to choose between celiac disease and Crohns, I would choose celiac disease. I suppose I have a colonoscopy in my future :( . Anyway Steve, if you do have Crohns, you are now treating it, and remember there are degrees of it. I read that some people only have one or two "attacks" of it in their life, while others suffer on a more regular basis. I hope you find all the info you need to make wise and healthy choices for yourself. If I end up with a crohns dx. I just may come here to hunt you down for info!

Karina

Guest jhmom
Guest jhmom
Posted

Hi Steve, I remember you posting that you had been having a lot of problems even after going gluten-free. I am sorry you have Crohn's but glad they found out what was causing your pain and now you can be treated!

You take care and hang in there! ((((((Hugs))))))) to you :)

LDHV Newbie
LDHV
Posted

Hi Steve,

Sorry for the dx. but you are not alone my 13 yr old has both. She hasn't been put on stereroids yet and hoping thats a long way off. but, she is on asecol(8) a day niferex (2) folic acid (1) acidophilus (2) a good muti vitamin and calcium

I think the secret is the folic acid. She is doing great right now. She has never had any pain!!!! she is waiting for that to start. We dont know what to expect, I guess that is the scary part about crohn's. Celiac is the hard part she knows if she has messed up within 2 hours although the mistakes with the gluten free diet are fewer and fewer. Hang in there its a long waiting game with the good news being if you are controlling the diesese's you will be waiting a long time

Take care,

Leah

Jacie's mom

SteveW Rookie
SteveW
Posted
  • Author

Karina,

Don't worry about the colonoscopy, you won't feel a thing. The night before was interesting :o but not a big deal. With any luck you just have sprue and the diet is all you have to do. Feel free to track me down! Good luck.

Jhmom

I kind of new something else was wrong. My GI told me he saw some irritation after my colonoscopy that may be the start of crohns so that was always in the back of my mind. But I've been trying ignoring that. Not anymore. Thanks for the hug :D

LDHV

Sorry about your daughter. It's awful when someone so young gets sick. But I'm glad she is doing good. I can't imagine being that young and not being able to eat pizza and the like....bummer. I

debmidge Rising Star
debmidge
Posted

Steve

Best wishes for a good recovery. Keep up your spirits.

Debmidge

travelthomas Apprentice
travelthomas
Posted

I'm just curious about Crohn's. After I started a gluten free diet I had diarrhea, off and on, for about four months. I have a feeling if I were to have been under a doctor

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ehuebs Newbie
ehuebs
Posted

Will someone please help me out with this? I've never been online chating with anyone so please be patient with me. I visited this site last night and read a message from Steve. He asked if anyone had Crohn's and celiac disease. I have Crohn's and my Dr. is suspicious that I have a wheat allergy. I haven't been given a celiac disease diagnosis but my sister has. I'm wondering if anyone can tell me the relationship between allergies and Crohn's. From what I've read, I think that I may have been misdiagnosed 17 years ago and may actually be a person living with celiac disease. Steve, if you'd like to talk to someone about Crohn's and life after diagnosis, I'd be happy to share what I've learned with you. The challenge for me will be to find your posting and figure out how to respond to you!

Elaine

SteveW Rookie
SteveW
Posted
  • Author
I'm just curious about Crohn's. After I started a gluten free diet I had diarrhea, off and on, for about four months. I have a feeling if I were to have been under a doctor
travelthomas Apprentice
travelthomas
Posted

Elaine,

To read all of the post by Steve W, click on

seeking-wholeness Explorer
seeking-wholeness
Posted

Steve,

On the Enterolab website, it says that there may be a connection between Crohn's disease and yeast sensitivity. It might be worth investigating!

travelthomas Apprentice
travelthomas
Posted

Steve,

It wasn

wildones Apprentice
wildones
Posted
Steve,

It wasn

SteveW Rookie
SteveW
Posted
  • Author
Steve,

It wasn

Guest Haypaula
Guest Haypaula
Posted

Thomas, Just wanted to say that I have read many of your posts on this board and I appreciate your no nonsense approach to gluten-free living. I have gained great respect for you and your opinions. Thank you, Paula

plantime Contributor
plantime
Posted

Travelthomas, So do I. 0 ppm is my goal, and I will eventually find all of the hidden sources.

komarcova Newbie
komarcova
Posted

Hello everybody!

I wish you happy Easter! I`ve been Celiac since 1 year old baby and have never had any symptoms of Crohn, but my younger sister has just been diagnosed with Crohn at her 17 :( It has to be definatelly in the family all this "intestinal" problems! I am sure that my precedents were overeating the grains! My mom, grandma, aunt - all of them are skinny with big belly, what I think is definatelly connected with poor digestion.

Well, I think the best for all of us is to eat healthy for our life!

Good night,

Stefania.

Karina Explorer
Karina
Posted

Steve,

I got the word back today on my edoscopy and it was mild damage consistent with Celiac Sprue. I guess this makes my diagnosis official. The doc is sending me info on it, and wants to see me in two to three weeks for a question and answer session, etc. I am wondering how were you diagnosed with Crohns? Just by colonoscopy or did you have a barium enema too? I am also wondering if the reason you are not getting better is because of the Crohns--I guess that was the reason for this thread. I know you have been gluten-free and still experiencing symptoms. I guess my question is how do any of us know we don't have Crohns--the symptoms for celiac disease and Crohns are very similar! I will be asking about this at the doc's of course. He said originally he was suspicious of Crohns OR Celiac. Can Crohns cause damage in the small intestine? Sorry so many questions, I am just sorting through all of this right now, and frankly it is all a little surreal.

Regards,

Karina

SteveW Rookie
SteveW
Posted
  • Author

Karina

-Irritation was found in my colon during my colonoscopy-My GI felt that it may be Crohns or just irritation from being so sick with the Celiac thing. So it was try the diet first and see what happens.

3 months, not feeling much better, my GI ordered a blood test for Crohns anti bodies, similar to Celiac panel just looking for different anti bodies. This is through Prometheus Lab and is a very expensive test that luckily me Insurance paid for.

Anyway it came back 85% + for IBD-Crohns

At the same time they checked my Celiac Panel-that was down to normal levels, but I still need to drop them more.

Also I had I think was called a lower GI. Drank the barium and they X rayed me as it went through my digestive track. That came out ok.

So a month after my last visit I went back and my GI gave me a script for Prednisone. After a week on the drug I felt much better. Not a 100% but live able.

The urgency to go is better along with stomach pain and Solid BMs. Never in my life would I have thought that a Solid BM would make me smile but it did :D .

So I went back again and that's when he told me that its 100% + for Celiac he also believed that since

1-Irratation found during colonoscopy-along with biopsy

2-Blood test 85% + for IBD Crohns

3-My rapid response to Prednisone

4 diet alone not helping much

He was 90% + that I have Crohns also.

From what I've read Crohns can be anywhere in the digestive track but I think its more common in the lower and colon area.

Crohns is a dangerous disease that has many complications that I don

travelthomas Apprentice
travelthomas
Posted

Lorriane,

To answer the

travelthomas Apprentice
travelthomas
Posted

Dessa,

0 ppm is a great goal. I also try my best. It really is impossible to avoid foods that you

  • 6 months later...
GEF Explorer
GEF
Posted

I just received a call from my doctor today that the test for intestinal inflamation came back "suggestive" of crohn's. We have totally ruled out celiac disease with every test imaginable, including the HLA. He wants to do an upper GI and if that's not conclusive, then he wants to do the mini-camera test (the camera that you swallow). I have mixed emotions here about the whole thing.... but, I'm getting closer to an answer.

Wedding is in 10 days, so I'm going to try to schedule the upper GI asap. I guess that IBD can cause some of the celiac tests to show a false positive?? :blink:

Gretchen

IGG 40 (pos)

IGA 23 (pos)

TTg - neg

HLA for DQ2 & DQ8 - Neg

Antireticulin IGG 1:20 (borderline)

Guest jhmom
Guest jhmom
Posted

Hi Gretchen,

I am glad you are that much closer to getting an answer. My GI doc is also checking into the camera thing that you swallow, it sounds very interesting. I hope to have some answers soon! I am going on over 2 years of feeling this way and over a year of being gluten-free with mild improvements.

Please keep us updated on how your tests come back.

GEF Explorer
GEF
Posted

Thank you so much, Stacie for your support. My test is on Nov 2nd @ 9am. I pleaded with the scheduler for grace because of my timing issue and she got me in. The thought that acute inflamation is occurring somewhere in my body is a little unsettling... even that it is "suggestive" of crohn's. Either way.. pos or neg, I'm glad that we're getting closer to an answer. I think the difference has been getting a really, really, really good doctor. He specializes in celiac, crohn's, colitis, nutrition, internal med. I would suggest to anyone who's symptomatic of celiac and undiagnosed, to make sure that other conditions are ruled out. My celiac results were inconclusive, but it's important to remember that other conditions can cause the Igg's to elevate and they should be ruled out. Stacie, I so hope that you get your answers soon too... you'll certainly be in my prayers. Keep perservering.

Gretchen

GEF Explorer
GEF
Posted

I spoke with the nurse yesterday. She is so cool and told me that if I EVER have any questions, that I can always call her.. she was awesome. Anyway, I asked her what test came back "suggestive" of crohn's... and she said it was the Anti-OmpC Iga (weirdest thing I've ever heard). Apparently if your result is less than 16.5, then you're negative. Mine was 19.8. I was negative for pANCA and ASCA. The upper-GI series (barium x-ray) includes a small bowel follow-through... I'm glad they're doing that. The nurse told me to call her when I leave the hospital and she said that she will try to get the results that afternoon. :blink: wow.

Steve, my doctor ran the tests from Prometheus too.

anti-OmpC (outer membrane porin C; uncommon in patients without IBD; more common in patients with Crohn

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      Contact them.
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