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Crohn's Disease And Gluten-Free Diets
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I'm currently training for my first triathlon in order to raise money for the Crohn's and Colitis Foundation of America. I picked this one because I know that some of their research does overlap other GI immune conditions. I'm not totally sure how though. I've found some research about shared genes. I want to make sure I'm telling people the right things, since many of them have experience with celiac only.

My main question now is how many people with Crohn's and/or colitis follow a gluten free diet? Is it the same or different from the celiac diet in any ways? I've met one person who said she couldn't eat many other gluten free replacement grains. Is that something that varies by person?

Also, how does a doctor distinguish between celiac disease and Crohn's when it affects the small intestine?

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I cannot address a lot of your questions but I believe the differential dx between Crohns and Celiac disease would be that with Celiac disease there will be villi blunting.

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I believe Crohn's is usually diagnosed by barium swallow x-rays of the GI tract, both upper and lower, as it affects the whole intestine.

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Some people with Crohn's follow the GFCFSF diet also. Others don't. If it helps an individual seems to vary. Some people have both Crohn's and celiac too.

There isn't any clear cut answer to why Crohn's affects the whole intestine and celiac only the small intestine. They are both auto-immune diseases/conditions and are both serious. However with Crohn's a diet that helps everyone is not a known thing, like it is with celiac. Of course then you look a little further and find that many people with celiac have additional food intolerances beyond GFCFSF. People with Crohn's often have antibodies to baker's yeast also.

Crohn's patients generally use a combination of diet and immuno-suppressants to manage their symptoms. Some don't make any diet changes and use drugs to control their symptoms.

They are both auto-immmune diseases/conditions of the digestive tract and probably have more in common than different. But celiac is the only auto-immune disease that doctors understand the trigger for right now. Crohn's is still a mystery.

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There isn't any clear cut answer to why Crohn's affects the whole intestine and celiac only the small intestine. They are both auto-immune diseases/conditions and are both serious. However with Crohn's a diet that helps everyone is not a known thing, like it is with celiac. Of course then you look a little further and find that many people with celiac have additional food intolerances beyond GFCFSF. People with Crohn's often have antibodies to baker's yeast also.

Crohn's patients generally use a combination of diet and immuno-suppressants to manage their symptoms. Some don't make any diet changes and use drugs to control their symptoms.

They are both auto-immmune diseases/conditions of the digestive tract and probably have more in common than different. But celiac is the only auto-immune disease that doctors understand the trigger for right now. Crohn's is still a mystery.

Might be because docs don't tell them to change their diet. I know people with Crohn's, one had huge chunks of her large intestine removed, who were never told about diet. They just take pills. :o

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I know someone with Crohn's, too, and I asked her if she'd ever been tested for celiac. She hasn't but knows we share a lot of the same symptoms. She also knows both are autoimmune. She'd rather just take her pills, which she's been doing for many years. So I don't know if she was ever told about the gluten-free diet or if she'd just miss the spontaniety of eating out a lot. So I've dropped the subject.

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Before I was aware of celiac I knew someone with Crohn's who literally lived on pasta, and no, it was not Tinkyada :o And I did sonehow know at that time that was not the right thing to do because I said to my MIL "But she has Crohn's!!" It makes you wonder why doctors insist on NO SALT and NO FAT but they can't say the words NO GLUTEN!!

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Thanks for the responses. It's interesting. The one girl I talked to at the meetings said she went into remission on a Gluten-free Casein-free low sugar diet, and some doctors supported her while others didn't. It sounded very similar to my own experience with negative tests, a variety of responses from doctors, but major health improvements on a different diet.

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Crohn's disease affects several layers of the intestines, unlike celiac, which just affects the top layers, and there is often narrowing/scarring/ulcers. It shows up in biopsies in the affected area, and I believe the pattern of immune cells in the mucosa is different. Typically, the symptoms are slightly different as well but there can be a lot of overlap. (I really really did not want Crohn's disease to be diagnosed last year.)

A really common diet recommendation for Crohn's is no whole grains and no beans. Digesting fiber ahd phytic actid tends to be hard. That's probably why she said she can't eat some (whole) gluten-free grains.

Some research points to infection with MAP (Mycobacterium paratuberculosis) as the trigger for Crohn's but it's not well accepted.

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This thread is interesting to read. The only person I have ever known with crohns told me there was no way to help the symptoms with dietary changes and they would not even entertain the idea. So I never really looked into it or anything. This person was on very strong medicines and still in pain most of the time. I wish they would have at least looked into some dietary changes to see if it helped (although I understand it's not the same as celiac and diet may not help everyone, it's hard to watch someone so desperate for symptom relief yet refuse to at least try a change of food). This person also ate mostly pasta and breads however and I really do wonder now if they were addicted to the gluten and just making their pain worse by eating it so much.

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Hi everyone,

Interesting to read the responses from the Celiac community. I have Crohn's disease, am working on a documentary film about treating digestive conditions such as IBS, Celiac, Crohn's & ulcerative colitis using alternative treatments when drugs and surgery no longer work.

Several of you are correct that there is no specific, doctor recommended dietary plan for treating Crohn's disease. Unless you talk to a Naturopathic doctor, but even then, it's still a mixed bag of responses. No standards at all.

I use primarily diet and supplementation to control my D and pain. I haven't been on medication since 2007. Gastroenterologists absolutely do not believe food plays a role and tell patients that the best course of treatment is medication and sometimes surgery. This is why some of you have run into opposition when trying to talk to your friends about diet treatments for Crohn's. They are told it doesn't work and they believe their doctors.

It is my hope with my documentary that I will prove that it can work! There are many people who are discovering this everyday and defying their doctor's requests to take immunosupressive drugs, which can have horrible side effects. It ain't easy, especially because we can't tolerate any grains at all (those of us who use special diets) and instead we make our breads with nut flours like almond and pecan. The most popular diet for us is called the Specific Carbohydrate Diet (SCD). If anyone with Celiac still has trouble on gluten free, I recommend SCD.

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Hi everyone,

Interesting to read the responses from the Celiac community. I have Crohn's disease, am working on a documentary film about treating digestive conditions such as IBS, Celiac, Crohn's & ulcerative colitis using alternative treatments when drugs and surgery no longer work.

Several of you are correct that there is no specific, doctor recommended dietary plan for treating Crohn's disease. Unless you talk to a Naturopathic doctor, but even then, it's still a mixed bag of responses. No standards at all.

I use primarily diet and supplementation to control my D and pain. I haven't been on medication since 2007. Gastroenterologists absolutely do not believe food plays a role and tell patients that the best course of treatment is medication and sometimes surgery. This is why some of you have run into opposition when trying to talk to your friends about diet treatments for Crohn's. They are told it doesn't work and they believe their doctors.

It is my hope with my documentary that I will prove that it can work! There are many people who are discovering this everyday and defying their doctor's requests to take immunosupressive drugs, which can have horrible side effects. It ain't easy, especially because we can't tolerate any grains at all (those of us who use special diets) and instead we make our breads with nut flours like almond and pecan. The most popular diet for us is called the Specific Carbohydrate Diet (SCD). If anyone with Celiac still has trouble on gluten free, I recommend SCD.

Thank you so much for this post. I just finished messaging another advanced member about my daughter's recent symptoms. She is 7 yrs old and was diagnosed a year and a half ago w/Celiac. She was doing great on the gluten-free diet for almost exactly a year to the date and then she started getting horrible stomach pains and bad headaches. Her GI suggested taking her off of lactose to see if it would help. It didn't. I started reading about the SCD diet and Dr. Haas' research and decided to take her off of ALL grains and also dairy which almost immediately seemed to work. Her symptoms went away. I tried to reintroduce rice and rice pasta a few weeks later and after 4 days of one serving a day, her symptoms returned. I also tried separately to reintroduce casein and the stomachaches returned as well. I am baffled that she could be doing so well and now she is so restricted on what she can eat. She also cannot tolerate corn so she is basically now following the Paleo diet: protein, vegetables, fruit, no grains...also, no starches, no corn, no dairy....VERY hard for a 7 yr old.

Over the past couple weeks a stomach bug has been going around our house where we feel pretty good until we eat something and then we get abdominal gurgling, loose stools, mild stomach pain, and loss of appetite. Most of us are recovered and pretty much back to normal, except for our daugher who is still having a lot of stomach pain and just doesn't feel good in general. I'm scared that her symptoms are now returning again since it is taking her so long to get over it. Have you found that following the SCD diet can possibly be temporary and then you are able to return to a "normal" gluten-free diet or is this a permanent solution? Dr. Haas talked about doing it for a number of years and then being able to return to normal foods. Thanks for any advice you can give!

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I would love to see your documentary. Did you complete it?

My daughter was suffering with many symptoms for several months. She had a colonoscopy and the results came back "consistent with Crohns". Her gastroenterologist stated that current medical thinking is that diet is not the answer. He said that there were very effective drugs available now and put her on Asacol. She wound up in the emergency room twice in one day with palpitations. Even though the doctor claimed that there was no connection he pulled her off the medication. Wonder of wonder, no more palpitations. I have taken her to 2 different gastroenterologists, a holistic doctor, a nutritionist and the list is growing...meanwhile she has gone gluten free and is doing very well. I wonder if she had Crohn's at all.

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I was diagnosed with Crohns disease last year after colonoscopy with biopsies. I only have a mild case and the medication does help, but I still have alot of other symptoms and I am convinced that changing my diet is the answer.

I can't handle whole grains, corn, popcorn, too much milk, caffeine and a variety of other foods. I still get daily nausea and stomach pain. I know alot of other people who suffer from Crohns disease have very restricted diets but it is mostly trial and error to avoid things that set them off, not just a simple Dr recommended diet.

Incidently, I have just had an endoscopy to test for concurrent coeliacs but I haven't got the biopsy results back yet.

I also plan to visit a dietitian who specialises in IBD/coeliac type diseases so hopefully I will get some results.

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My main question now is how many people with Crohn's and/or colitis follow a gluten free diet? Is it the same or different from the celiac diet in any ways? I've met one person who said she couldn't eat many other gluten free replacement grains. Is that something that varies by person?

Also, how does a doctor distinguish between celiac disease and Crohn's when it affects the small intestine?

My mother had Crohn's disease, so I can't say I was totally surprised in 2008 when I was diagnosed with it as well after a colonoscopy. We never heard of celiac, or gluten back then. I lived on pasta, cereal and sandwiches. I was given medication to treat the disease.

In 2010, after a stint of antibiotic-associated colitis, I had developed the greatest food fear of my life because I had gotten so sick from everything I consumed. I went to a nutritionist.

She said I was gluten and dairy intolerant. I thought she was nuts, but in my desperation, I followed a gluten-free DF diet for one month before returning to her. In that time I was convinced - I had lost five pounds and symptoms overall were decreasing.

I have been gluten-free and DF ever since. In 2011, when I had my follow up colonoscopy, my doctor said the evidence of early stages Crohn's was gone. He would not credit the diet, but admitted that there was no way the medication could have reversed the effects.

I don't know if I have celiac and I was misdiagnosed. What's worse, is that I will never know if this diet could have helped my mother in all her years of suffering (she passed away in 2006).

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My mother had Crohn's disease, so I can't say I was totally surprised in 2008 when I was diagnosed with it as well after a colonoscopy. We never heard of celiac, or gluten back then. I lived on pasta, cereal and sandwiches. I was given medication to treat the disease.

In 2010, after a stint of antibiotic-associated colitis, I had developed the greatest food fear of my life because I had gotten so sick from everything I consumed. I went to a nutritionist.

She said I was gluten and dairy intolerant. I thought she was nuts, but in my desperation, I followed a gluten-free DF diet for one month before returning to her. In that time I was convinced - I had lost five pounds and symptoms overall were decreasing.

I have been gluten-free and DF ever since. In 2011, when I had my follow up colonoscopy, my doctor said the evidence of early stages Crohn's was gone. He would not credit the diet, but admitted that there was no way the medication could have reversed the effects.

I don't know if I have celiac and I was misdiagnosed. What's worse, is that I will never know if this diet could have helped my mother in all her years of suffering (she passed away in 2006).

It's good to hear the gluten-free diet is helping you Riverand. You might want to look at going soy-free also. Soy is one of the top 8 food allergens and is a problem for some celiacs. Isn't it great they put it in baby formula?

http://www.sciencedaily.com/releases/2004/12/041219153340.htm

Research Studies Effects Of Soy Baby Formula On Intestinal Development

Dec. 27, 2004 — URBANA, Ill. -- Two studies by University of Illinois food science and human nutrition professor Sharon Donovan show that the soy isoflavone genistein, in amounts present in commercial soy infant formulas, may inhibit intestinal cell growth in babies. So what are we to think about soy in a baby's diet?

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    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
    • Along those lines, many Americans are now pursuing gluten-free eating. Gluten ... Diagnosis of celiac disease typically requires a history and physical ... View the full article
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