Crohn's Disease and Celiac Disease

[slightlysilly]

Does anyone have both?

I had an upper endoscopy done today and there were folds and scallops indicative of celiac disease. Im going to have a celiac work up done along with some gallbladder tests. Another cool thing is im going to get that small camera endoscopy thing that you swallow like a pill and it takes info and pictures through the whole system. Apparently, my doctor is the first one in the state to have this thing.

Oh and im also going to see an endocrinologist to straighten out this prednisone wean problem I seem to have.

I haven't seen much on here about both celiac and crohns, so does anyone else have both?

Thanks in advance!

 

[xJillx]

I don't have Celiac (granted...I never was tested to my knowledge), but it is not uncommon to have both. Also, I am in the running to have the pill cam this month, too! Well, as long as my insurance approves it. It sounds so futuristic, doesn't it? I wish you the best of luck with your tests!

 

[slightlysilly]

Thanks Jill!!!

I'm just coming off the goofballs they give you before you get the endoscopy. I did some research on the celiac thing.. I guess the good news is that if this is celiac disease and I stop eating wheat, chances are, I'll feel a lot better. That's what I'm after!!!

Cheers!

 

[patsworth]

I have been tested for it as my mum is a celiac. They think I may have Crohn's but it is certainly an interesting link. I've often wondered if my mum having it could link with my own digestive problems.

On a real positive though, if you do have celiac you will see great results with the diet. Although it can be hard, there are so many products coming out and some really good bread so there isn't much you feel you are missing out on. My mum gained a healthy weight and is so much better. I hope it goes well with your tests.

 

[D Bergy]

Celiac and Crohn's are related in some way, as my daughter has Celiac, while I have Crohn's.

It is not as simple as avoiding Wheat, as you have to eliminate Gluten from your diet.

Gluten is in many many foods, and it takes a real effort to not expose yourself to it. Gluten acts like an adhesive that holds food together, so it is used a lot.

Bread of any kind, other than the type that is specially made to be Gluten free is out.

Prepared food almost always has Gluten in it. You have to find those few that do not have Gluten in it.

It is hard to avoid, but it can be done with some education.

Dan

 

[slightlysilly]

Thanks much Dan and Pat... I know that I have a lot to learn. The hard thing is that I am waiting for the lab to call me to schedule the tests and I'm told by my GI to continue to eat what I have been eating (which has been heavy in wheat and gluten because I can barely eat anything else) so it's hard to know that I am possibly hurting myself by eating this stuff, but yet I have to in order to properly diagnose myself.

I have permission by my GI to do Ensures and fruit and vegetable juice (from the juicer) as long as I feel I can... fortunately.. or unfortunately.. I am about 50lbs overweight at the moment (thank you prednisone... and um.. cookies... lots of cookies) so I can stand to drop a bit of weight. I'm happy he is letting me do that and carefully monitoring my stats etc, each week because honestly... food is no longer fun stuff to eat.

 

[annak87]

I have both celiac and crohn's and I'm pretty sure there are a few others on here that do as well. I think it's fairly common to have one with the other. It does take some getting used to but really, after a while it's just second nature to check the ingredients for no wheat, rye, barley, and malt and you're good to go. Luckily, many regular grocery stores are starting to carry a lot of gluten free products. When I was first diagnosed, I had to go to a health food store and even they only had a limited amount of goodies. Also, when my GI doctor said I had celiac she sent me to a nutritionist who gave me gluten free eating 101, which was extremely helpful. So hopefully you could get some help like that too.

Unless this is a newer pill cam, I had the same test a few years ago at UPMC in Pittsburgh. It was really interesting and super easy to do. I went with my Dad to one of the museums for the day and they actually gave me a script to carry with me because with all the lines from the monitors to the little box coming out from underneath my shirt they didn't want anyone to think it was a bomb or something! hahah

Good luck with all the testing, I hope you get some answers soon!

 

[xJillx]

Unless this is a newer pill cam, I had the same test a few years ago at UPMC in Pittsburgh. It was really interesting and super easy to do. I went with my Dad to one of the museums for the day and they actually gave me a script to carry with me because with all the lines from the monitors to the little box coming out from underneath my shirt they didn't want anyone to think it was a bomb or something! hahah

How far along in your system did you pill cam get? My GI said the battery usually dies around the TI. I am really hoping it will get that area and doesn't die before that.

BTW, are you wearing an Eagles jersey in your Avatar pic?? LOVE IT!

 

[annak87]

I, honestly, cannot remember how far the pill cam made it because I had this done in..2004-2005 I think? I'm pretty sure this was when the pill cam's were fairly new because I remember I was only the second person at Children's Hospital in Pittsburgh to have it.

And..dear Lord no this is NOT an Eagles jersey : ) Steelers! haha

 

[D Bergy]

According to the Celiac Disease Foundation (CDF), ingredients that may tip off hidden gluten content include:

* Unidentified starch
* Modified food starch
* Hydrolyzed vegetable protein (HVP)
* Hydrolyzed plant protein (HPP)
* Texturized vegetable protein (TVP)
* Malt and other natural flavorings
* Binders, fillers, excipients, extenders

Note that the last item on that list would include certain dietary supplements and medications that use binders and fillers. This is one of the reasons you sometimes see the statement "no binders or fillers" printed on supplement containers.

Just for the record, Malt will send my guts into an uproar, so Gluten sensitivity without full blow Celiac Disease is possible. The difference being I can tolerate Gluten until it reaches a certain amount. Someone with true Ceiac Sprue cannot tolerate one particle of Gluten.

MSG such as what pretty much makes up Bullion Cubes, will give me the big D immediately, although I normally do not have this. There can be many foods that do not agree with any one person.

Dan

 

[xJillx]

And..dear Lord no this is NOT an Eagles jersey : ) Steelers! haha

Whoops! I've got to be honest, I was surprised you'd be an Eagles fan in Pittsburgh. But your jersey looks green in your photo.

 

[annak87]

Dan - glad you mentioned the binders and fillers because just in the past month I discovered three products I had been using contained wheat. One a day vitacrave gummy vitamins have it, which I guess I shouldn't be surprised but it just totally didn't occur to me to even check for wheat. The two things that really blew my mind though were my Bed Head shampoo and hairspray. Hairspray would probably be the last thing I would check for wheat but after I discovered it on mine, I headed to the salon and EVERY hairspray except for TWO had wheat in them. So crazy.

Jill - I totally understand. Without seeing the gold, black would be hard to distinguish from the eagles green. And eagles fans don't usually make it around here without harsh criticism and verbal torture haha : )

 

[slightlysilly]

I wonder what's up with the pill cam. I read an article in a local magazine and it said that my doctor (had his picture and everything) was the first in the state to use it... maybe he's the first GI non hospital setting doctor? Oh well, who cares... the article sounded like the pill cam is going to get tons of information and answers for us.

Tell me though Anna... what do they do with the pill cam after you're... er... through with it?

 

[annak87]

Like I said, this was 6 - 7 years ago so this may be an updated version of the pill cam I had or something? When I was finished they hooked the little box up to a computer while I was getting all the sticky monitors ripped off and I could see the pictures downloading onto the screen as they went in and it was pretty cool to see.

They told me just to keep an eye on everything that was coming out of me for a few days to make sure I saw it but I didn't have to do a catch or prove that I saw it or anything. I can't remember how long it took, but there it was in the toilet one day haha

 

[slightlysilly]

Ok, thanks! My husband was laughing and laughing at the possibility that I would have to go digging to "find" the pill cam... I should make HIM go find the pill cam... HA!!

I'm in an interesting world right now. It's like I probably have Celiac so I should go gluten free but if I do that before I take my test, then I might goof up the test, therefore I have to keep eating gluten (someone correct me if I'm wrong) in order for the test to be accurate.

Also, my GI gave me the green light to go liquid only for a bit. I think that's probably because I'm already about 50lbs overweight. I told him that pretty much anything that goes through hurts, so he said it was ok to do Ensures and Carnation Instant Breakfast (I already know that the ready made Instant breakfasts have gluten, and the powders don't EXCEPT the chocolate malt flavor)

Interesting... I can't wait to see what these tests show!

Thanks again and cheers! (I can go both ways on the football thing... central PA yo!)