The Gluten-free Diet Saved Me from Crohn’s Disease

by Jen Hadley on January 10th, 2011


Photo: Sheknows.com

I have always had a funky stomach. As a very young child I recall laying on my stomach on the living room floor trying to alleviate the horrible cramps and pains I used to get on a regular basis. Coming from a family full of tummy trouble, I thought it was normal and never complained. As a teenager the pains became worse and my Mom and I took a trip to the pediatrician to find out what was wrong. He said I had a spastic colon and that I needed to eat healthier and he taught me how to massage my stomach to get things moving along. I loved my pediatrician but that advice wasn’t so helpful. Telling a teenager to “eat healthy”? Right.

I went away to college and learned all about cheap beer and the freshman fifteen. I ate and drank whatever I want. I learned to ignore my wonky belly and just enjoyed the good life that college most certainly provided. By the time I turned 20 I had gained about 50 pounds and was pretty much sick all the time. I was miserable, moody, and just ill. My boyfriend at the time certainly noticed and when he called me out on it, I went back to the doctor, this time my adult primary care physician. That’s when I heard it for the first time – IBS – Irritable Bowel Syndrome. She handed me a one page, poorly photocopied handout explaining IBS and what to do about it. Eat more fiber. There’s no cure. That’s all we can tell you. Have a nice day!

So I started eating healthier, whole grains, fruits, veggies… the healthier I ate, the worse I felt. I joined Weight Watchers and using their points system I lost 25 pounds and also started exercising again. I felt better for the most part, but my stomach troubles persisted. Horrible constipation, diarrhea, gas, bloating, pain, nausea. I didn’t think there was anything else I could do so I just lived with it. Eventually my symptoms started to change. Infections, rashes, more stomach troubles. I’d go to the doctor for each symptom and they’d diagnose them individually. This infection gets this antibiotic, this rash gets this cream… but they just kept coming back. This is when I started to think that maybe all of these things were connected somehow. Maybe there was something else going on. I decided that it was up to me to figure it out since the doctors had been useless up until this point.

I dove into research and all of my symptoms together pointed to one thing – Celiac Disease. If you’re reading this website, you probably already know what that is, at the most basic level it is an autoimmune disease that is triggered by an intolerance to gluten. Gluten is the protein found in wheat, barley and rye and may often be a cross-contaminant in many brands of oats. What… you want me to stop eating bread? And drinking beer?? ABSURD!! But surely this is what I have because the symptoms match up so perfectly. The one I was the most focused on was the rash. I don’t want to go into too much detail but it was a very sensitive rash and there were only two options I could find and I knew for sure it wasn’t one of them so it had to be the other – Dermatitis Herpetiformis. The Celiac rash.

My Celiac research taught me many things about the disease and the gluten free lifestyle. Back in 2007 the gluten free blog boom was just beginning and the first one I came across was Shauna James Ahern – the original Gluten Free Girl. I learned that it’s best to get tested before going gluten free, so I found a new doctor and told him this whole story and asked to be tested. He told me that my symptoms (constipation dominance) were not “classic” Celiac symptoms and he thought for sure that it was IBS. I was devastated. He tested me anyway. My numbers were a little funky but not crazy enough to say I had the disease. He referred me to a gastroenterologist that basically told me I was young and healthy and he didn’t want to perform unnecessary invasive tests when he was also sure that I simply had IBS. At this point I’m completely turned off by medical doctors and determined to just go it alone. I read the Celiac Chicks, which are self-diagnosed, and I decided that I too could do this on my own.

A few weeks into this crazy new diet I most definitely felt better. It was a miracle!! I thought for sure that I was on the right path, but I kept reading various websites that were nagging me to get a clear diagnosis. I also found that without a diagnosis I was letting myself “cheat” on the diet a lot. One night I made plans to meet up with my old co-worker and friend Allie and she told me she was going to order a mixed drink because she can’t drink beer anymore. I almost fell off my barstool when she told me she had been diagnosed with Celiac!!! I was excited to have someone to talk to about all of this and she encouraged me to keep going and also to get tested, but I kept putting it off after the bad experiences I’d had with doctors in the past.

At the end of the summer of 2007 I came down with a terrible stomach virus that had been going around. It was just awful and within a couple of days I was so severely dehydrated that I wound up passing out 4 times in one night. My roommate drove me to the hospital at 4 in the morning and my Mom met us there. They pumped me full of fluids, ran some blood tests, told me I was fine and sent me on my way. I went for a follow up at the doctor’s office a few days later and they found that I was still dehydrated so they gave me another antibiotic. I eventually recovered but I lost 12 pounds in 2 weeks. A few months later I came down with the flu and once again became so dehydrated that I passed out and was taken to the hospital again, this time via my first ambulance ride! The ER doctor was puzzled as to why this was happening and my parents were very concerned (as was I) about my health. My bloodwork was all pretty normal and despite my frequent visits about my stomach problems, they couldn’t figure out what was wrong with me.

After two ER visits within 6 months I knew I had to push harder to find some answers. I was still convinced that I had Celiac so I searched the internet for a Celiac specialist and came across the Celiac Center at Beth Israel Deaconess Medical Center here in Boston. I made an appointment right away. When I met with The Doc I told him my whole history and he immediately scheduled me for a colonoscopy. I went in for the procedure on May 9, 2008. When I woke up from the anesthesia, the doctor was there and he informed me that it looks like I have Crohn’s Disease. Ummm, excuse me? I have what?? Crohn’s Disease, and here are the pictures of your insides to prove it.

Crohn’s Disease is also an autoimmune disease, but unlike Celiac, you can’t just cut gluten out of your diet and feel better. They don’t know what causes it or how to cure it and all they can do is medicate you until you feel better and then medicate you more to keep you that way. I am the type of person that only takes Advil as a last resort, so when they wanted to put me on steroids and chemotherapy drugs I was horrified to say the least. I put as much energy as I could into figuring out how I could turn this thing around and heal myself as naturally as possible. And so this blog was born. I decided after lots of reading that the gluten free diet was the way to go regardless of not having a Celiac diagnosis, and through trial and error I eventually eliminated dairy products as well.

I did allow the doctor to try it his way first, knowing that this is a serious disease. That was a roller coaster ride for sure and back in December of 2009 I received an urgent call from my doctor that the last medication I was on was causing my white blood cell count to drop too low and I had to stop it immediately. I was nervous for sure, I had been slacking on the diet since the meds were helping and I was scared of a relapse. I buckled down, went strictly gluten and dairy free and didn’t look back. I’ve been medication free ever since. I recently had a follow up visit with The Doc and he’s baffled at my remarkable success and is supporting my request to stay med free as long as I’m in remission. Today I feel better than I have in my entire life and that’s why I write this website. I want other people to know that there is hope! I firmly believe that health can be achieved through proper nutrition and I will continue to share my story so that others may find healing.

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Author Information: Jen Hadley, Boston, MA
Jen blogs about living Gluten and Dairy Free with Crohn’s Disease.
Website: www.alifeofsugarandspice.com
She can be reached by email here.
Twitter: @MySugarAndSpice


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26 Responses to “The Gluten-free Diet Saved Me from Crohn’s Disease”

  1. Jennifer says:

    Hi Jen! Thanks for sharing your story. I was diagnosed with crohn’s about a year and a half ago. I went to the doctor because I had lost about 13 pounds (and I am not that big to begin with), I was exhausted all the time- to the point where I couldn’t even get up the stairs at work. My doctor did some bloodwork- when the results came back I was told that I had crohn’s disease and would need to speak with a gastroenterologist. He confirmed the bloodwork for me and schedule a colonoscopy. At the time I had no internal damage-the disease was basically “dormant” in my body, but my doctor made it very clear to eat healthy and exercise so I can get back to better health. I now take 2000 IU of vitamin D, and I TRY my hardest to eat as healthy as I can. Yoga is great for stress relief as well as meditation so I try to do this a few times a week. I am happy to say that I am finally starting to feel better and get my life back on track- it’s a great feeling, but unfortunately an everyday struggle.

  2. Michelle says:

    The writer is wrong about Crohns. They DO know what causes it. While there is no cure but they have had some positive results with different non-traditional treatment other than “meds” including pig worms. There was no Crohns before the industrial revolution when we moved from a farming environment to one with less good germs and bacteria and to a more sterile one. I have had blood work done to show that mine is hereditary and came from my mother’s side of my family. Also, it has to be biopsied to confirm the disease, not just by looking. I think some people are misdiagnosed believing they have it when they do not. They have also narrowed which specific parts of the immune system it affects. I have had it for 22 years since I was a child and I think trying any kind of diet including GF is a GREAT idea and a better choice than meds but sometimes to control a flare up that has already started you MIGHT have no other choice since the disease is auto immune and not just a stomach problem.

    • Paul Furniss says:

      You say they DO know what causes it, then please enlighten us, I have had Crohns disease for over 30 years and nobody yet has claimed to know what causes it?

  3. Julz says:

    Hi Jen, I just found ur blog and it has been very helpful. your childhood reminds me of mine. i was always laying on my stomach with severe cramps and couldn’t stand up straight, i would also tell myself its because sensitive stomachs run in the family. I would get severe leg cramps as well, I was told by my Doc that i had a spastic colon but after reading this i will definitely go and get more test especially since Crohn’s Disease runs in my family and to be honest i haven’t even considered that may be the cause. My Mother-in-law told me to try a gluten free diet and i thought why not and it has definitely helped not only with my cramps but i am losing weight (something i have always had trouble with), i have also cut out a lot of dairy. I rarely get my cramps now but if i do i know it is because i have been naughty with my diet.

    Thank you for sharing your story,
    Jules (From Australia)

  4. [...] are good for women with crohn’s disease. Some crohn’s sufferers also swear by the gluten free diet for crohn’s symptom [...]

  5. Charles Cole says:

    Thanks for sharing your story as this gives me hope. My mother in law has been on me about gluten for the past several months because she feels this could be contributing to my health issues.
    For years I had issues with my stomach etc with all of the symptoms mentioned above. Then in Jan ’12 I could function anymore and ended up in the emergency room. Later I was diagnosed with Crohn’s and after trying several meds that didn’t work I ended up having small bowel resection surgery in Apr ’12. I totally changed my diet afterwards, primarily fish, vegtables and fruits and activia yogurt. During this time I felt awesome!
    Then in Oct’12 I had a flare up from my chrons and we started the med trial and error again. Had a couple of double ballon procedures done also during this time and nothing relieved my symptoms.
    Apr’13, I was just released from the hospital after my second small bowel resection. I told my wife I’m not going back again.
    So here we are, gonna try taking out all gluten from my diet this time to see if it works as I would prefer no meds, (GI wants to put me on 6mp quickly). I’m gonna go non gluten first and see how long I can make it.
    Thanks again for the article and sharing your story.

  6. Tquez says:

    Hi. I have a 15 old daughter who has been diagnosed with ” it seems like crohns”. I don’t believe medicating her is the answer. I had her on structured water for 6 months and she did well. She stopped hydrating herself and her weight has dropped, she is tired and has brain fog. My brother mentioned fecal transplants. I looked into it, found a local doctor ( surprise!) and we had a phone consultation the next day. He wants her on Low dose naltrexone and a gluten free diet first. Then we will talk about a transplant. He stated that the results have not been as favorable for Crohns when compared to colitis. We have made changes to our diet in the last year. She diagnosed with food allergies so I make everything from scratch ( no soy or nuts). Then they said she needed to be vegan so now we are vegan. I figure going gluten free should be relatively easy after everything else. It’s learning how to substitute right? We are also going back on the water as I think it helped as well. I will keep you posted…who knows I might start a blog!

  7. Amy L says:

    hi
    i read your whole story. i turn 45 in two weeks. i have colitis since i was 16. i also had an infection and saw my pediatrician until they determined what it was. i have had hospitalizations but no surgery. now i had a flare up for the first time in 21 yrs. i am gluten free and i limit dairy. my 6 yr old daughter may have celiac. good thing i know all about it.

  8. Jen says:

    You are so welcome!! I’m really glad that my story can help others. It’s been two years since this was posted and I love that people still read it. I am still a huge proponent of the gf/df diet for Crohn’s relief. I’ve recently started dabbling with the Paleo diet which restricts all grains and I find that I feel fantastic on it. My stomach is calm and happy!! :) Sugar is also a big trigger for me so limiting that has also been huge.

  9. Just Jenn says:

    Jen,
    One of my very good friends just forwarded me this link. Thank you so much for posting this. I was just diagnosed with Chron’s 1 week ago and I actually go back to the doctor’s in the morning to discuss treatment options. Until now, I had no idea what it was or how it’s treated. The more I find out, the scarier it gets. Like you, I’m not a medicine person and never have been. I didn’t take pain meds after a surgery because I didn’t like the foggy head feeling. I have been terrified and dreading this appointment tomorrow, but after getting support from my Kelly (she sent me tons of gf recipes) and reading your blog, I feel relieved. This is the most at ease I have felt in a very long time. I know the restricted diet will be really hard, I absolutely love dark beer, but reading your article and how it’s helped you, gives me confidence. I wish you the very best of luck and THANK YOU!!!

  10. Mike Muise says:

    Great article, thank you. My brother has crohns and is on remicade which seems to work well but I am confident some day people will look back on these drugs and be bewildered that we took them. So it makes sense to try whatever you can and learn as much as possible. I don’t understand how doctors who know firsthand how treatments come and go can still act with such an air of certainty with their current med recommendation?
    I’m not against medication, I’d just appreciate it if doctors said, ” here’s what we know today, and here’s what I’m recommending but keep reading and let me know if you find some other ideas and we’ll investigate together”
    By the way I’m also finding some fascinating stories about crohns, IBS and several other problems and “fecal transplants” just google it.
    All the best!

  11. Kerrigan says:

    Hey Jen, thanks for sharing, I’m also gluten and casein intolerant. I find I can eat butter/ghee and full fat cream without problem though. Have you tried that?

  12. Sean says:

    When the meds where not working for my Crohn’s, I initially went much more restrictive on my diet, Atkins plus gluten free. I went from taking the max dose of my Crohn’s meds to being off meds within a week. Then I told the doctor what I did to end my symptoms his response was who told you to do that. It was as if he did not believe that diet could be so important. It was really him that drove me to find the diet because he want to switch me to much more powerful drugs. I stayed symptom free for over a year, but then I just had to have the foods I liked again and the symptoms came back. Then I spent several years in a cycle of eating the restrictive diet, feeling great, and then switching back to the foods that I like until I felt so bad that I had to go restrictive again. Since being so restrictive was not working for me I started using more gluten free substitutes, that way I could still have the foods I like and instead of going Atkins I have just stuck with gluten free and very low in dairy.

    Sean

  13. Laura says:

    I am 30 year old nurse and work in the medical field. I have been gluten and dairy free for 5 years. I struggled my whole life with varies oddities such as, stomach cramps, bloating, constipation, rashes all over my body, UTIs, joint pain even as a child. Over the years I was told my rashes were eczema of unkown cause. My stomach pains were just gas pains. My UTIs were caused by a short urethra. My constipation was from lack of fiber. My joint pain was just growing pains. I also struggled with acne and depression most of my life. It just makes me want to cry when I see that others(many) have been through the same struggles. over the years the healthier I ate the worse my symptoms got. Long story short, I do not have celiac disease, but I am gluten and cow milk protein intolerant. Now gluten and dairy free for 5 years I am happy to say all my symptoms have disappeared. They do return if i stray from my diet. I was searching for a site like this because I see a lot of patients that have crohn’s and was curious to see if there were people benefitting from a gluten and/or dairy free diet. I often want to suggest it to my pt but, it is not my place, as I am not a doctor. However, I know most sufferers have limited success with meds. Not to mention the side effects of the medications.

  14. Jen says:

    Erin – I am actually casein intolerant, not lactose intolerant. I have not had any luck with any types of cows milk dairy including raw. :)

  15. erin says:

    Have you ever considered raw milk/dairy products? They often do not cause lactose intolerance like pasteurized milk.

  16. Levi says:

    Hi,

    Thank you for your article. I am going though the same situation as you are. I got my blood tested and it was negative for celiac, but I have been doing gluten free diet for a while before the test. My doctor told me that it’s very rare to have celiac, so he gave me anti-depressant.

    I am sure that I am gluten intolerant. I have tested myself through trial and error. After a while of not eating gluten, I had some gluten the other day, and my stomach right away growled.

    Anyway, I still had minor stomach issues specially when I eat high fibre food or consume a large amount of alcohol. This baffled me. I finally think that I have crohn’s disease with gluten and lactose intolerance. All the symptom match with what I have or experiencing. I’m tired of going through doctors, and they just think that I’m nuts. Your article really encouraged me to trust my instinct.

  17. Rick Clarke says:

    Thank-you Jen. Very helpful………at least I think it will be. Isn’t it frustrating that MOST doctors do NOT know much about diet and how it affects our health. Quite frankly I do not understand their reluctance. HELLO………………..”We are what we eat” comes to mind. I have had crohns disease since 1975. I am now 59 years old. I have had numerous resections over the years and now have had an Ostomy for the last 10 years or so. After starting to get pain again when exerting myself with minor lifting or just cutting the lawn I went back to the specialist and he did another colonoscopy and …………..low and behold the crohns is back again. 23 cm. apparently is inflamed again. So I am now on Entocort and have been for the past 8 months. Haven’t really noticed much difference except to my bank account. This junk is EXPENSIVE, but I am not one to sit around. I am a very busy design consultant and project manager so I just carry on pain or not. Hell…..I have been living with pain for most of my life so no biggy. However………………..I am getting REAL tired of having pain when I do almost anything, even walking too much. So it was with great interest that MAYBE just MAYBE glutten free might be an answer. I just do not know and OBVIOUSLY the Doc’s are frustrated as well although they do NOT seem to have a handle on information that is available to them. Seems the “DOCTOR” industry needs to step up here. “Not EVERYTHING is cured by drugs ya know”. I am amazed that the medical industry continues to insist that the food we intake couldn’t possibly be involved with crohns disease. After all I heard that the medical doctors only spend 8 hours in their studies to become a doctor on nutrition and diet. Anybody else have a situation similar to mine at all? Rick

  18. Kate says:

    Thank you for your thorough post and blog. I have to ask though why you haven’t gone further into your Crohn’s Disease, specifically where in the bowel it is and how you feel being gluten & dairy free helped that. I hhave Crohn’s Disease and have had it since 1996. The only thing I’ve not yet tried is a gluten free diet. I’ve been on all of the meds for Crohn’s, inclluding the chemotherapy ones (one I was on for 10 yrs) and now am on the last line of biologics,Cimzia,but am developing the beginnings of anaphylactic reactions to this too. The one thing that keeps me from going gluten free is the cost of produucts. I already make about 85% of my family’s food,including breads,from scratch and am dairy free. I just wonder can gluten free really help someone like me whose Crohn’s is pereanal and not in the intestines? I have an IBS overlay as added fun and tested negative for Celiacs.
    Any thoughts? Thank you.

  19. Jamie says:

    Thankyou so much for this. You have finally given me hope. I have had IBS problems since I was a little girl and its gotten so much worse. This past week has been the hardest yet with 2 er visits last night alone. I was told I needed to see a gi doctor to confirm that I have crohns which was already confirmed about 9 years ago!! I am so excited to try this with my dad who also has crohns. Thank you so much. You have given me hope for not only me, but my father and baby girl as well!

  20. nikki says:

    I just started GF diet 2 days ago and im already feeling great. I have Crohns and have had stomach troubles for years. The doctor really wants me on meds but i refuse to go on them . my best friend has it and she just had surgery. The meds do not help at all. Thank you so much for this blog really helped me .

  21. Brian says:

    Gluten is bad for everyone. A very terrible thing is, even if whole grains are used in baking ingredients, you can sometimes find down in the list that extra gluten is added! It’s technically a potent extract of the stuff! They know what it does to the body, they’re still allowed to poison everyone. Makes us sick. We pay more money to the ‘machine’ to cure us with backwards diets and mystery chemicals. It’s madness. I would have figured that mainstream Kosher standards would at least add this to the “no” list, although some people do support the gluten-free Kosher cause.

    I notice that I can sleep better, feel better rested, have more energy, and have less digestive problems with Crohn’s when I stick to a gluten free diet. I’m willing to bet that diets high in foods made from gluten containing grains – and especially foods with added gluten extract – affect MANY more than they estimate. Most may never notice it, or power through it, man up to it, be psychologically happy no matter what, etc, whatever. It’s the root of laziness too! Gluten is just some evil stuff, it’s a mystery behind why such unhealthy grains suddenly became cultivated in abundance all those years ago… (they work so dang good when baking) !@#$%, ya know? I still say there’s a gluten conspiracy deep rooted in our history.

    A note to the first commenter: Be sure to get your B12 from either a purely organic vegetable source OR in the bioavailable form called methylcobalamin. Most B12 “vitamins” are made of cyanocobalamin which contains a cyanide molecule that the body must break off and dispose of (detoxify that poison!) before the rest of the “vitamin” molecule can be used – although there’s debate over the actual absorption/utilization of the cyanocobalamin.

    Oh, and gluten free beer is available, but of course alcohol is on the NO list of things to consume for people with any type of GI tract disorder. So, good luck still trying to sneak them in there! ;)

  22. Jennie says:

    Hello,

    I’m still waiting on my test results, but I wanted to thank you for your article. It stinks that we have to push doctors so hard to test for what’s making us sick.

  23. Caren – No, I do not take any supplements at all. I maintain my health strictly through food. My doctors do recommend a multi-vitamin and a calcium supplement, but I currently don’t take either. I do take B12 which is prescribed by my doctors because of the damage in my intestines from the Crohn’s, I wasn’t absorbing it well through food. Currently all of my levels are within normal limits and I’m feeling great!

  24. Caren says:

    So do you take any vitamins or natual remedies?

  25. Grant Smith says:

    And me ,too! I was in the hospital 2 to 3 times a year for a week at a time or more. Went GF 6 years ago and haven’t had a flareup since. Had a Colonoscopy and no active Crohn’s visible. When I went GF on my own 6 years ago my GI Dr. poopooed it until he saw how great I was doing. He to was baffled but has found studies that say 18-20% of Crohn’s patients are also Celiac or at least wheat intolerant!!

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