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

Celiac And Crohns


SteveW

Recommended Posts

SteveW Rookie

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?


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



Celiac.com Sponsor (A8-M):



Karina Explorer

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

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

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

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

Steve

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

Debmidge

travelthomas Apprentice

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


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



Celiac.com Sponsor (A8-M):



ehuebs Newbie

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
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

Elaine,

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

seeking-wholeness Explorer

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

Steve,

It wasn

wildones Apprentice
Steve,

It wasn

SteveW Rookie
Steve,

It wasn

Guest Haypaula

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

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

komarcova Newbie

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

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

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

Lorriane,

To answer the

travelthomas Apprentice

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

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

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

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

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

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. - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

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

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • 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.