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Crohn's Disease Forum » Your Story » Crohn's AND Celiac?


07-22-2012, 02:25 PM   #1
Trischolar
 
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Crohn's AND Celiac?

Greetings!

This is my first time on the site and have enjoyed poking around.

I was diagnosed with Crohn's in 2005 after a bout with an abscessed mass in the terminal ilium; biopsy indicated Crohn's. I still continued to be sickly with many problems (GI, peripheral neuropathy, chronic pain and fatigue). In 2008 I was diagnosed with Celiac with blood test and biopsy confirmed. At that time my GI doc told me he though I was misdiagnosed with Crohn's and it was really Celiac all along. I stopped believing I had Crohn's and attacked Gluten Free living. Now I am beginning to wonder. After 4 years on a strict GF diet, I am still having a lot of symptoms (frequent diarrhea, gas, joint pain etc) that I can't correlate with having having possibly ingested gluten.

Does anyone out there have both Celiac and Crohn's? How do you distinguish the symptoms. After a bowel obstruction earlier this year I had another endoscopy and colonoscopy that didn't show any concerning inflammation according to GI, just localized erosion in the stomach, small linear ulcer in rectum, and mild erythematous in the distal ileum. He said the findings were mild and probably caused by the trauma of the obstruction and treatment.

If I have Crohn's and it is in remission, would I still have symptoms? Could this be causing some of the troubling symptoms even if there is not a flare/ sign of active Crohn's?

Thanks for any advice you have!
07-22-2012, 03:19 PM   #2
Lucinda
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Your story could be my story. I was diagnosed with Celiac after years of taking Crohn's meds and still being sick. Long story short, I have both. GF diet took away the fatigue, fuzzy head, aches and pains. Less bloating too.

I don't believe you can have symptoms and be in remission. But I do believe you can have little to no inflammation and have symptoms. At least that has been my experience. I think location makes a big difference. People who have CD in the colon seem to get a complete break from pain at times. Those I know like me, who have it in the illeum, seem to have chronic pain, even when there is little inflammation. I don't know why that seems to be.

For me personally, I am avoiding all grains now and that seems to help. I'm not perfect but I notice a lot of fatigue when I eat a grain heavy meal, even if it's gf. You may also want to look at sugars and starches because they can cause trouble.

Bottom line: Yes, I think you can have both and your Crohn's could still be active. But this is only based on my experience. I'm sure others will have more information to add.
07-22-2012, 03:24 PM   #3
kiny
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Many have both, I'm actually getting a blood test done in a few days for celiac.

I sometimes wonder if people on the SCD diet actually have crohn, I think some might have celiac or celiac with crohn.

There's many diseases that look like crohn but aren't crohn, I think many are wrongly diagnosed, intestinal tuberculosis is incredibly similar to crohn, even more so than celiac.

Intestinal TB is rare and Crohn common in the West, so there is an assumption it's crohn before they consider intestinal TB.

In the East is the exact opposite, in recent years crohn has risen a lot in Asia, but they often assume it's intestinal TB, many many people in Asia have been wrongly diagnosed because of it.
07-22-2012, 05:24 PM   #4
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The thought of truly having both is a bit overwhelming. When I was diagnosed with Celiac I was so happy that there was finally something I could do about being so sick, and had hope that it would be better.

I am also troubled by the fact that doctor's still seem to not be helpful. It seems that folks with chronic diseases really have to rely on each other. So many wrong diagnosis and still not being taken seriously. According to my medical records I have been diagnosed at one point or another with celiac, crohn's, fibromyalgia, thyroid disease, polycystic ovarian syndrome and with that insulin resistance, peripheral neuropathy, anemia (Iron and B12), and so on.

I posted a similar thread on a Celiac forum and folks there suggested trying an elimination diet to see if there are other food intolerances/causes. I know diet is not a treatment for crohn's- only helpful in reducing symptoms. Are there prevalent intolerances or triggers with Crohn's? I know I don't digest high fiber foods right now (nuts, seeds, beans, ruffage).
07-22-2012, 07:15 PM   #5
kiny
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I posted a similar thread on a Celiac forum and folks there suggested trying an elimination diet to see if there are other food intolerances/causes. I know diet is not a treatment for crohn's- only helpful in reducing symptoms. Are there prevalent intolerances or triggers with Crohn's? I know I don't digest high fiber foods right now (nuts, seeds, beans, ruffage).
In general (there are exceptions) the biggest intolerance I see for crohn patients (including me) is dairy. Is this down to mycobacteria, lactose, I don't know.

Outside of that there are wide and varying opinions, some exclude high sugar because many studies show that high sugar intake is common with crohn patients, some avoid artificial sweeteners. Meat seems to be tolerated but many do not like red meat because it's quite a bit harder to digest than poultry.

There seem to be staple foods that rarely anyone has issues with, fish, chicken, eggs, you will find very few people having issues with those. Most diets people are using for crohn are high protein, average fat, low sugar (including low starch), low in processed foods. This also makes sense to me, protein is needed to build and protect tissue, more so than fat and sugar, which are much easier to convert into energy.

I personally do not believe you can easily tell which food is causing issues, breakdown of the mucosal barrier is something that takes weeks to months, it does not happen in a day, a flare does not happen from 1 specific food type, it's an ongoing process that might be worsened by a particular food, but it might just have happened without the food too.

These are just my observations from having crohn for 10 years and reading about people's habits.
07-22-2012, 08:24 PM   #6
Lucinda
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It can be overwhelming, no doubt. Don't feel like you need to solve it all at once. Also remember chronic illness is an ever-changing landscape. What works one day may not work the next so don't feel like you should have it all under control.

First, remember that diet adjustment helps but it will not cure Crohn's disease, regardless of what people may tell you. Diet is also most significantly affected by how you feel. When you are in the middle of a flare, soft foods are better than rough foods. But when you are feeling well, roughage is a good thing.

Keeping a food diary can be helpful. By track your symptoms and what you eat, you may notice patterns but don't expect hard and fast cause/effects. For example, you may find that dairy makes you feel bloated. Fried foods may cause you to feel nauseated. For me, grains lead to fatigue. Not always but certainly if I consume too much.

The Celiac community is definitely about eliminating foods. I see that all the time. The truth is though elimination diets are hard. Pure and simple. Especially when you are dealing with more than just Celiac. If you are really looking for food intolerances and you have the money or your insurance will cover it, I recommend a blood test. At the very least, it gives you a place to start. But this approach is not about curing your Crohn's. It is simply recognizing that certain foods may give you symptoms completely unrelated to your illness. Clearing those up can make it easier to recognize when it really is your Crohn's giving you fits.

Like kiny said, there is a wide range of opinions regarding food and Crohn's. I don't buy all of them, certainly not as a cause and/or cure for Crohn's. But I do believe diet can have an impact on how you feel.

Don't try to do it all at once. Take it one step at a time. The things I do have been years in the making. Give yourself some time to adjust to this diagnosis then start making a plan. It seems lots of people here have a lot of great ideas so I'm sure you will always have something new to try if what you're doing doesn't work. Chin up. You can do this.
07-23-2012, 02:26 AM   #7
Thermo
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If you have 100% stuck to a gluten free diet at all times and you still have symptoms like frequent diarrhea, gas, joint pain etc I am sorry to say but to me this points to Crohns or UC as well.
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07-24-2012, 03:39 PM   #8
David
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Hi there and welcome.

Depending on the source I've read, anywhere between 10 and 25% of people with Crohn's Disease also have Celiac disease. Here is one source that suggests 18%. My guess is gluten sensitivity is even higher.

The key here is that the biopsy of an abscessed mass in your terminal ileum indicated Crohn's Disease.

With that, if your GI changed your diagnosis to just Celiac simply because you had Celiac without doing additional testing to rule out Crohn's, well... let's just say that's not good, at best.
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