Crohns Misdiagnosed?

[catdee]

Has anyone been misdiagnosed with crohns disease, only to find out its celiac instead?

[trents]

Celiac disease does damage to the mucosa in the upper end of the intestinal track. Crohn's damages the colon, i.e., the other end. Crohn's is oftened difficult to differentiate from ulcerative coloitis but I don't think it is commonly confused with Celiac disease. I could be wrong.

Steve

[cookie22]

Has anyone been misdiagnosed with crohns disease, only to find out its celiac instead?

no, it doesn't work that way. like the guy beneath me said, it's two different parts of the body, and two completely different reactions in the body. celiac has villi flattening, crohns has ulcers. it's like confusing a stuffy nose with a sprained ankle. however, and this is a big however, you can have both. i do.

[kalikohl]

no, it doesn't work that way. like the guy beneath me said, it's two different parts of the body, and two completely different reactions in the body. celiac has villi flattening, crohns has ulcers. it's like confusing a stuffy nose with a sprained ankle. however, and this is a big however, you can have both. i do.

I'm another lucky winner of Crohn's colitis and celiac disease. Sometimes I wonder how I got so lucky

[cookie22]

I'm another lucky winner of Crohn's colitis and celiac disease. Sometimes I wonder how I got so lucky

Oh hang in there both of you=-D Have either of you just been diagnosed? Things get a lot easier although, around here it gets a bit frustrating when you have people who just have celiac which can actually be stopped going on like they have the plauge and you have something on top of it that is totally incurable. I'm sure the people with lyme feel the same way though. PM me if you are newly diagnosed and have any questions/ want to talk, i've bee diagnosed for over two years, and trust me, it gets better. If you were just diagnosed let me give you a big hint that helped me, don't live to be sick, don't make that a big part of your life, any bigger than it has to be. I am me, and i am a student, a spanish major, and i live in tx. i have brown hair, and crohn's and celiac. and i consider the crohns and celiac about as important as my hair color, something i can't control and have to deal with. yes, there are some days i'm sick as a dog and stuck in bed. but, really, don't make it the center of your life as so many have. Also want to throw in, right about the time i was diagnosed and having a pity party, like normal, my cousin was diagnosed with colon cancer and is still fighting for his life, just to put things in perspective. Think, the day we were each diagnosed with whatever we have, someone else was diagnosed with something terminal, that helps me stop my pity parties pretty fast, although, everyone still has them.

[GFinMN]

cookie22 - thanks for the reminder of other's going through things much more difficult than we are. it's so easy to fall into a pitty party - i know that 1st hand. it's easy to get discouraged and frustrated.

when i do i think of this little girl here in minneapolis that had a terrible accident a few weeks ago. i saw it on the local news. she was at a health club pool and sat on the pool drain and the suction was so strong it sucked out her entire bowel. she was only 6 years old. the news updates have said that she will now need to be fed through a feeding tube for the rest of her life, as they couldn't save any of her bowel. i feel so bad for her. it's a blessing to be able to eat anything at all. this little girl never will again. her name is abby - that's what they said on the news. pray for her.

[cookie22]

cookie22 - thanks for the reminder of other's going through things much more difficult than we are. it's so easy to fall into a pitty party - i know that 1st hand. it's easy to get discouraged and frustrated.

when i do i think of this little girl here in minneapolis that had a terrible accident a few weeks ago. i saw it on the local news. she was at a health club pool and sat on the pool drain and the suction was so strong it sucked out her entire bowel. she was only 6 years old. the news updates have said that she will now need to be fed through a feeding tube for the rest of her life, as they couldn't save any of her bowel. i feel so bad for her. it's a blessing to be able to eat anything at all. this little girl never will again. her name is abby - that's what they said on the news. pray for her.

that's horrible about the little girl. i heard about something like that happening years ago, i thought every pool had to make modifications but apparently not. i will pray for her. but, really, next time you're having a pity party, invite friends and turn it into a real one bc no party is fun alone =D. we should keep a thread going or start a new one about chrons and celiac.

[corinne]

I have collagenous colitis not Crohn's, but the symptoms/treatments are pretty similar. It's so true that it's a matter of perspective. It's said often on this website how hard celiac is, but to me it would be great to have something that can be fixed with diet. Then I hear about other people's situations such as that little girl and feel grateful that I just have colitis.

On a side-note, I have an appointment with a GI tomorrow. For the last 2 years, I've controlled my symptoms by diet and anti-diarrheal meds such as lomotil as necessary. However, I have been having flares every 6-8 weeks and the GI will probably want me to start Asacol (I said no before). Has anyone taken Asacol? How were the side-effects?

[cookie22]

I have collagenous colitis not Crohn's, but the symptoms/treatments are pretty similar. It's so true that it's a matter of perspective. It's said often on this website how hard celiac is, but to me it would be great to have something that can be fixed with diet. Then I hear about other people's situations such as that little girl and feel grateful that I just have colitis.

On a side-note, I have an appointment with a GI tomorrow. For the last 2 years, I've controlled my symptoms by diet and anti-diarrheal meds such as lomotil as necessary. However, I have been having flares every 6-8 weeks and the GI will probably want me to start Asacol (I said no before). Has anyone taken Asacol? How were the side-effects?

I guess the two are a little different because mine can't be controlled by diet to any extent, but, when i was first diagnosed (chrons) before they figured out the right combo of meds for me, it seems to be the go to "start" drug. It made my liver go bananas, and they tried other ones, but it usually works for everyone to some extent. Let us know how the appointment goes, good luck, if anything, you will probably be feeling alot better soon =-D

[corinne]

With collagenous colitis, the docs say that diet has no effect, but for me, I have less flares by eliminating things like cabbage, nuts etc. I eat a very simple diet (just fish, chicken and a few well-cooked fruits/veggies and avoid all grains/dairy etc). I no longer have daily D, but when it flares up, it's hard to make it work. I teach university so I can't get a sub. I was diagnosed 3 years ago and meds were the first line of treatment suggested, but I didn't want to take them because I'm very active in sports. It might be time to give in and try meds.

[cookie22]

With collagenous colitis, the docs say that diet has no effect, but for me, I have less flares by eliminating things like cabbage, nuts etc. I eat a very simple diet (just fish, chicken and a few well-cooked fruits/veggies and avoid all grains/dairy etc). I no longer have daily D, but when it flares up, it's hard to make it work. I teach university so I can't get a sub. I was diagnosed 3 years ago and meds were the first line of treatment suggested, but I didn't want to take them because I'm very active in sports. It might be time to give in and try meds.

oh, then you know something, i'm an idiot and wasn't thinking. i suppose in my own way diet has made a difference/is important, because i would not in a kabillion years ever try to eat something like cabbage lol. When my arthritis isn't flaring, i am very active and, i am on a million meds between my arthritis and crohns. So, it is possible to be on medicine and be active, they actually help me be more active. maybe it won't affect your sports at all!

[corinne]

It's funny - my dad is Austrian and I actually miss eating sauerkraut

Anyways, the new GI was very good. He wants me start taking Asacol. He also suggested taking a probiotic. I'll give Asacol a shot. I haven't been feeling great lately and it's true, taking meds might actually make it easier to do the sports I enjoy. I really wanted to go for a run on the beach tonight, but the cramps got to be too much so I didn't go. Maybe tomorrow.

[Karen B.]

Oh hang in there both of you=-D Have either of you just been diagnosed? Things get a lot easier although, around here it gets a bit frustrating when you have people who just have celiac which can actually be stopped going on like they have the plauge and you have something on top of it that is totally incurable. I'm sure the people with lyme feel the same way though. ----snip----

That's what keeps me on the gluten-free straight and narrow. The possibility of developing something else other than Celiac. I've already been diagnosed terminally ill once in my life and beat it (now think it was undiagnosed Celiac). At this time, gluten-free is the only limit I have, a diet can be so much more limited. I don't want to push my luck and gluten-free isn't that bad once you get used to it.

[cookie22]

That's what keeps me on the gluten-free straight and narrow. The possibility of developing something else other than Celiac. I've already been diagnosed terminally ill once in my life and beat it (now think it was undiagnosed Celiac). At this time, gluten-free is the only limit I have, a diet can be so much more limited. I don't want to push my luck and gluten-free isn't that bad once you get used to it.

you don't really develop crohns disease. it's usually already there. unless i'm completley mistaken.

[Karen B.]

you don't really develop crohns disease. it's usually already there. unless i'm completley mistaken.

I'm not sure how you get Crohn's. Since it was listed with the "Disorders Related to Celiac" group on this website, I assumed it was one of the many things you can develop if you continue to irritate your immune system. Celiac.com remains one of my key info sources.

I'm still not sure of the answer, but I found the following articles interesting:

Crohn's Disease: Bacterium Tied to Crohn's Disease to be Removed From Milk in the United Kingdom

...As reported by Reuters Health, scientists have warned of a widespread bacterium called Mycobacterium paratuberculosis that is the likely cause of the bowel disorder. This bacterium can survive the milk's normal, or even prolonged pasteurization process...

https://www.celiac.com/st_prod.html?p_prodi...-58107353034.74

Celiac Disease Prevalence High in Patients with Crohn's Disease

Inflamm Bowel Dis. 2005 Jul;11(7):662-666.

Celiac.com 06/30/2005

[mylady4]

For those of you who have both Celiac and Crohn's, what were/are your symptoms?

The past couple months things have definitely changed in me. I have Celiac and have been controlling it very well the past year and a half so I know I have not been getting glutened plus this feels way different then when I get glutened. Now I have episodes where my intestines feel like they are swollen, I loose all appetite and the gas and bloating is horrible. I even had one episode where I swelled up and it hurt so bad it was taking my breath away. I could barely walk and was on the verge of tears. I also had to deal with constipation for the longest time but now it has changed to diarrhea. I have never had diarrhea except when I had the flu.

I did see my GI doctor this week. He thinks that it could be Crohn's or some other intestinal problem but needs some test to confirm or rule it out. I had a barium test today and that did not show anything. We thought that it would not because I am not having a flare up. Now I will have to have a colonoscopy, hey, not!!!! The RT gave me some milk of magnesia to drink tonight. She said that the barium might make me constipated but it has had the opposite effect. It felt like I spent all afternoon at work in the bathroom and that I had a thunderstorm rumbling through me intestines.

So, what I am wondering is what kind of symptoms everyone has had and what type of testing was done to diagnose you and what everyone is doing to control the diseases.

Thanks for listening

Nicole

[jjzait]

You need to be careful with this one. My husband was diagnosed with Chrons of the small intestine so you need to talk to your DR about where the chrons was found. We were told that the difference b/w UC and chrons is not where it is located but how deep the ulcers are. Chrons involved deeper ulcers that damage more layers of the intestine. Just what we were told by one DR (seems they all have a different story on this). 5 years (and one near death experience) later he took out gluten and is fine. No meds, no pain, no chrons symptoms and depression is gone.

[dollamasgetceliac?]

Hi Nicole;

So I had been diagnosed with Crohn', so I do not know how to cancel this ,reply because it should be a a reply to all. Sso I might post again sorry:

These are the symptoms of Crohn's:

1. Blood and slyme in your poop.

2. No blood and no slyme in your poop ( and still have active Crohn's)

3. Abdominal pain gooooooogle The painful truth and you will read an artice from the U.K most doc's do not know about this .

Bloating,gass Diareah or Constipation.

4. Sores in your mouth

5.related to Crohn's can be Celiac, or Colitus, or Uviatis, and lower back pain.( Sciatica) ( I think Asthma, food allergies, chemical and Enviromental allergies, and Migrains) so be carfull when they do a cat scan that you might get an Anaphylactic reaction to the Iodine contrast, that is very common so ask your Doctor before they do that test. You could have an allergic reaction to any food or substance even if you have been exposed to it many times.

6. Crohn's is a sneaky disease one day you are fine and the next day you could be in the hospital with an obstruction in your intestines.

7. Any organ from the mouth to the Anus may involve Crohn's, the ulcers may be perforated , or the intestines can develop Fistulas narrowing of the illium.

In my honest opinion most Doctors can misdiagnose IBD for IBS or Celiac. They can even think you are another patient because someone made a mistake and he thinks you are someone else. No I am not paranoid Iit happened to me.

Go to the Mayoclinicdotcom and research all of the disease related to Crohn's and note that now they are comming up with this research that says Nicotene can take away ulcers and Dr.Peter Green ( Celiac a hidden Epidemic says that it can delay the onset of the disease. ) this is still in research. so it has not been aproved they think that it is only for people who have smoked in the past and for Ulcerative Colitus.

Yes their is a test ( Genetic) HLA bla bla bla that can see if you can get Crohn's but most Doctors think it is not reliable. Anyway Most Doctors are not always knowlagable about G.I diseases any way because that and headaches is the most difficult to Diagnose.

So You can be eating Gluten Free and get your intestines in Remmission The thing about cabbage, I find it very good for my Crohn's Stir fry with gluten-free Soy and put on Rice. The trick is do not over cook.

[Loey]

For those of you who have both Celiac and Crohn's, what were/are your symptoms?

The past couple months things have definitely changed in me. I have Celiac and have been controlling it very well the past year and a half so I know I have not been getting glutened plus this feels way different then when I get glutened. Now I have episodes where my intestines feel like they are swollen, I loose all appetite and the gas and bloating is horrible. I even had one episode where I swelled up and it hurt so bad it was taking my breath away. I could barely walk and was on the verge of tears. I also had to deal with constipation for the longest time but now it has changed to diarrhea. I have never had diarrhea except when I had the flu.

I did see my GI doctor this week. He thinks that it could be Crohn's or some other intestinal problem but needs some test to confirm or rule it out. I had a barium test today and that did not show anything. We thought that it would not because I am not having a flare up. Now I will have to have a colonoscopy, hey, not!!!! The RT gave me some milk of magnesia to drink tonight. She said that the barium might make me constipated but it has had the opposite effect. It felt like I spent all afternoon at work in the bathroom and that I had a thunderstorm rumbling through me intestines.

So, what I am wondering is what kind of symptoms everyone has had and what type of testing was done to diagnose you and what everyone is doing to control the diseases.

Thanks for listening

Nicole

I'm new to this forum and to Celiac. I found this thread because I'm currently having my capsule endoscopy (a little less than two hours before I return the recorder). I'm resource geek and was checking into whether or not the capsule could come out too early because my cleanse last night didn't work. The I found info on Crohn's and it lead me back to this forum (I'm finding everything I research brings me here because all of you are so smart).

I was diagnosed in June after being bedridden for 6 weeks and we moved to a new state the day after I saw my GI with all of the test results. She felt I had gone undiagnosed for God only knows how many years and wanted my new GI to do the test I'm taking today. I had to be very proactive to get him to do it. I'm probably going to go to another doctor that was referred by my husband's colleague. I just don't feel this one is taking me seriously. I was following the gluten-free diet well (at least I thought I was) but I now know that everything that is marked gluten-free isn't always truly gluten-free. I also think I have sensitivity issues and had a flare about a month ago. Right now I'm doing the elimination diet to slowly introduce foods. That might be why the cleanse didn't do anything. I've only been eating rice, chicken and apples. Today I introduced sweet potato.

I'm currently an unemployed Elementary and Special Education Teacher. I went back to grad school at 50 and taught for 4 years while going to grad school at night. Right now I don't even feel well enough to sub.

I agree that it's important (and helps) to keep in mind those who have it worse. I taught inner city children during my first 2 years of teaching and that prompted me to want to get certified in special ed. I taught first grade at a charter school and there wasn't a program to help these kids. Most of them had families involved in gangs. I tried to make them feel safe during the day while I tried to get them to learn how to read, write and understand math. Some were brilliant - others needed more than I could give.

I feel that I have a lot of blessings in my life. I just have to remind myself about that some days. This forum has already given me so much and I hope to give back whatever I learn in return.

Loey