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Crohns/uc/colitis And Celiac

cookie22

By cookie22
in Related Issues & Disorders

Recommended Posts

cookie22 Newbie
cookie22
Posted

Hi everyone, I thought I'd start this topic to see who else is out there in the same boat as me, celiac and crohn's disease, and if anyone wants to talk about it/vent/find support!?

  • 2 weeks later...
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Elena M Newbie
Elena M
Posted

My husband is recently diagnosed with Celiac and ulcerative colitis. He is on medication for the colitis. The frustrating part now is trying to make all the diet changes (he is now gluten-free, dairy-free, soy-free and corn-free) and calm down the colitis, but he is still not gaining any weight back (he lost 15 pounds and he was thin to begin with!). Any suggestions would be so welcome!

somegirl2004 Newbie
somegirl2004
Posted

I'm in the same boat... I was diagnosed with celiac in June 2005 and Crohn's in December 2005.

Doesn't it suck taking so many pills every day?!?! I'm only 21, but my pill collection makes it look like I'm in my 80s!

corinne Apprentice
corinne
Posted

I have collagenous colitis and I follow a gluten free (well actually grain free including corn+rice, dairy free, soy free etc) diet. I haven't been diagnosed with celiac, but my mother has celiac disease.

The gastro. just started me on Asacol so that I can expand my diet a bit, because I'm losing weight, but so far Asacol is making things much worse. To try and keep up my weight, I eat avocado and olives which have healthy fat. I can't eat nuts, but if you can those have lots of good fat calories too.

  • 5 weeks later...
Cheri A Contributor
Cheri A
Posted

I'm babysitting for a friend whose dh has Crohn's Disease. I know through my various searches I've seen info on how a gluten-free diet can help with that. But, I can't find the links now. Does anyone else have any links that are helpful? They are at the surgeon's right now to discuss how to help him right now. This will be his 2nd surgery!

evie Rookie
evie
Posted

I have collagenous colitis and I follow a gluten free (well actually grain free including corn+rice, dairy free, soy free etc) diet. I haven't been diagnosed with celiac, but my mother has celiac disease.

The gastro. just started me on Asacol so that I can expand my diet a bit, because I'm losing weight, but so far Asacol is making things much worse. To try and keep up my weight, I eat avocado and olives which have healthy fat. I can't eat nuts, but if you can those have lots of good fat calories too.

Nearly one year after Celiac DX I found I have colitis too. Not using any meds but still experimenting to find what causes upsets of both problems...does anyone eer get to the point where you feel safe in what you eat? Do you think emotions enter into theses problems? I am wondering about the colitis if it does not...I am so much better than i was at DX of celiac...have come a long way mostly due to gluten free foods. What does Asacol do for you corrine? Do you plan to do any tests for celiac? If so good luck!! evie :unsure:

  • 3 weeks later...
NicoleAJ Enthusiast
NicoleAJ
Posted

I just went to a celiac/UC specialist at Hershey Medical Center (PA) and she was great. I was misdiagnosed with UC last year. Asacol actually caused paralytic ileus for me (paralysis of the colon)--I was in the hospital for the week fasting for a few days and then liquids only. The doctor seems reasonably convinced that I have Crohns, which I'm really not happy about. I'm going in next month for a gastroscopy and a capsule endoscopy.

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NicoleAJ Enthusiast
NicoleAJ
Posted

I just went to a celiac/UC specialist at Hershey Medical Center (PA) and she was great. I was misdiagnosed with UC last year. Asacol actually caused paralytic ileus for me (paralysis of the colon)--I was in the hospital for the week fasting for a few days and then liquids only. The doctor seems reasonably convinced that I have Crohns, which I'm really not happy about. I'm going in next month for a gastroscopy and a capsule endoscopy.

  • 2 months later...
Erikee Newbie
Erikee
Posted

I was diagnosed with Crohn's disease of the large intestine (not the small intestine -- lucky) a year ago. While I was at the gastro, I mentioned to him that I have issues with eating wheat so he ran a TTG test just to be sure. It came back positive so they caught the fact that I have celiac as well, which was lucky for me because I didn't have external symptoms yet. Come to find out I have osteopenia caused by malabsorption of calcium, which you wouldn't expect in a man of 42.

I'm taking Asacol for the Crohn's, and in my case it has put it into remission. I also have a hiatal hernia that causes bad reflux, so I'm on a double-dose of prescription-strength prilosec.

I take a lot of pills every day too!

I'm on a Gluten-free Casein-free diet, as are my boys. They don't have celiac but they have dairy and wheat "issues" and the Gluten-free Casein-free diet is helping their digestion and behavior.

spunky Contributor
spunky
Posted

Have you read up on the Specific Carbohydrate Diet? It sounds promising for these types of inflammatory bowel diseases. Google it and see if it looks helpful.

Also, I've heard of people feeling better taking a product called Digestive Advantage for Crohn's and Colitis...a so-called "functional" food (consisting of a sporgenes-like probiotic...i.e., survives without refrigeration and survives stomach acids, enzymes, etc., and other ingredients) designed specifically to combat those diseases. I take the DA for irritable bowel...and it helps me quite a bit...that one is gluten free, and I'm pretty sure all of their products are...check on their website to be sure. Their products are inexpensive and seem to be very effective!

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    • 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.
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      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
      IBS-D vs Celiac

      By SilkieFairy · Posted

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