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01-15-2012, 03:51 AM   #1
taylor27
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Crohns or food intolerance?

I'm new to this forum and I had my first colonoscopy in the beginning of december as they suspected Crohns because they couldn't figure anything else out.. all my blood work was normal but the only thing was my inflammation marker was a bit higher than usual but not as high as most cases of crohns as it was apparently very mild so we did a colonoscopy anyways...after having it done they said they found mild inflammation with the "clinical suspicion of Crohns" with a question mark at the end... my GI said it was Crohns but a big question mark at the end definitely doesn't confirm that for me.

anyways, I went and saw a Naturopath and got my food intolerance tests done and found out I was intolerant to all dairy including eggs, red meat, gluten and a bit of corn... I cut it out of my diet and I have no problems now, they than prescribed me budesonide to take for 2 months to help... but even taking this, i cheated on my food diet one day and ate pizza and i got extremely sick so this makes me feel like maybe it's not crohns and maybe it is food allergies because i get sick any time i eat any of those foods even though I'm on medication...my GI seems stuck in her ways and she only started last June where as the Naturopath said it could be just the food as they cause the same sort of problems.. any advice on what anyone thinks would be great... I don't know what to think of it because my GI apparently "doesn't believe in food allergies" affecting Crohns which is a big red flag for me considering when I eat what I was told not to eat is the only time I've been sick in a month and a bit now..

This is all very confusing and I don't know what to make of it and it's very frusterating as well not knowing what is actually happening
01-15-2012, 05:23 AM   #2
bozzylozzy
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welcome to the forum!
it does sound confusing for you, i think ive seen on here that diet can affect crohn's.
(im undiagnosed, so i wont be able to help) but i know certain foods do trigger me to feel unwell. and when i was on a low residue diet, it completely stopped my diarrheoa.
at least you seem to be fine when cutting those foods out of your diet.

everyone is really lovely and helpful on this forum, so im sure you'll get some great advice on here
but i just wanted to say hi! and hopefully you'll get the answer you want
01-15-2012, 05:40 AM   #3
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Have you considered maybe getting a second GI's opinion? Maybe you should if you aren't sure about her if you're able. I hope things get better!
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01-15-2012, 06:02 AM   #4
handle
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Hi Taylor,
Welcome! Although the naturopath may be right, I would get proper allergy tests done (via blood test.) There are some people on here, claiming miraculous cures with diet adjustments, whom I believe are actually suffering from food intolerances alone. So it is possible that you are in that category (I hope so!). One girlfriend of mine had symptoms that mimicked I.B.D but were in fact from Coeliac disease - they can seem the same but are very different.
Good luck.
01-15-2012, 07:05 AM   #5
dietsavedme
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I'm new to this forum and I had my first colonoscopy in the beginning of december as they suspected Crohns because they couldn't figure anything else out.. all my blood work was normal but the only thing was my inflammation marker was a bit higher than usual but not as high as most cases of crohns as it was apparently very mild so we did a colonoscopy anyways...after having it done they said they found mild inflammation with the "clinical suspicion of Crohns" with a question mark at the end... my GI said it was Crohns but a big question mark at the end definitely doesn't confirm that for me.

anyways, I went and saw a Naturopath and got my food intolerance tests done and found out I was intolerant to all dairy including eggs, red meat, gluten and a bit of corn... I cut it out of my diet and I have no problems now, they than prescribed me budesonide to take for 2 months to help... but even taking this, i cheated on my food diet one day and ate pizza and i got extremely sick so this makes me feel like maybe it's not crohns and maybe it is food allergies because i get sick any time i eat any of those foods even though I'm on medication...my GI seems stuck in her ways and she only started last June where as the Naturopath said it could be just the food as they cause the same sort of problems.. any advice on what anyone thinks would be great... I don't know what to think of it because my GI apparently "doesn't believe in food allergies" affecting Crohns which is a big red flag for me considering when I eat what I was told not to eat is the only time I've been sick in a month and a bit now..

This is all very confusing and I don't know what to make of it and it's very frusterating as well not knowing what is actually happening
If diet works, don't second guess yourself, go for it and enjoy the results. Your GI probably doesn't believe in a lot of things, all that matters is you believe in yourself and if you get results with food, stick with it and don't look back!
01-15-2012, 12:12 PM   #6
bangarang
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If diet works, don't second guess yourself, go for it and enjoy the results. Your GI probably doesn't believe in a lot of things, all that matters is you believe in yourself and if you get results with food, stick with it and don't look back!
I agree.

If you truly believe in yourself and its working then continue on what you feel is right. Perhaps you should also find another GI thats a bit more open minded, and knowledgeable.
01-15-2012, 12:24 PM   #7
Gabismommy
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I completely agree. If it is working for you continue!
01-15-2012, 09:46 PM   #8
taylor27
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thanks for the replys everyone..i think i should get a second opinion as well.. my Naturopath said that all my blood work was normal and usually it isn't with Crohns.. inflammation is caused by food intolerance as well and i hear of so many people who change there diet and feel a million times better..

my naturopath also told me that crohns will leave scarring always..is this true? I was thinking after not eating certain foods for a while I would request another colonoscopy just to see if there is no scarring... it's amazing to think that one day you can wake up and all this just randomly happens to you...

I've been tested for every possible solution and disease so i am just left with Crohns and food intolerance so now I just need to figure out a way to get all of this sorted i guess
01-15-2012, 10:09 PM   #9
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I think the least invasive way to rule out Crohn's is a pill cam/wireless endoscopy--so long as you insist on a dummy pill first, just in case of a stricture. Most crohnnies have inflammation just out of reach of a colonoscopy, at the end of the small intestines.

Personally, in your case, I wouldn't be taking the meds unless they were demonstrably improving my symptoms. If you do have Crohns, diet is of central importance and never let your doc say otherwise. They really do not want to hear how well your doing, or bad, in relation to diet.

Good for you for taking things into your own hands and getting dietary tests done.
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01-16-2012, 03:51 PM   #10
taylor27
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Hi Taylor,
Welcome! Although the naturopath may be right, I would get proper allergy tests done (via blood test.) There are some people on here, claiming miraculous cures with diet adjustments, whom I believe are actually suffering from food intolerances alone. So it is possible that you are in that category (I hope so!). One girlfriend of mine had symptoms that mimicked I.B.D but were in fact from Coeliac disease - they can seem the same but are very different.
Good luck.
Hi Handle, I did get the blood tests done and my food intolerances were to gluten, eggs and dairy are very high... as an example, after a month I ate something yesterday which i wasnt supposed to and I payed for it a couple hours after having to go to the bathroom...so obviously the budesonide hasn't stopped anything,it is my eating habits which have.. so it makes me wonder what am I taking the budesonide for... I hope I find out it is just food intolerance but doesn't it seem a bit extreme for food intolerance to ahve caused this much pain?

During my colonoscopy they found "acute, very mild inflammation focal points in the terminal ileum (end of small intestine) which match the clinical suspicion of Crohns?

That is exactly what my biopsy says with a question mark at the end of it.. can food intolerance cause extremely mild inflammation..theres so many different things to consider here
01-16-2012, 05:50 PM   #11
handle
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Hi again Taylor,
Mild inflammation of the terminal ileum can be caused by gluten intolerance. Early Crohns in the terminal ileum often involves the finding of small ulcers, giving a cobblestone appearance.
An endoscopy would be needed to show true Coeliac disease, as the colonoscopy would not go far enough into the small bowel. Gluten sensitivity tends to damage the villi in the small intestine, giving a flattened appearance to the mucosa. And yes, it can cause significant pain.
Did they biopsy the area during your colonoscopy?
01-16-2012, 06:49 PM   #12
taylor27
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Hi again Taylor,
Mild inflammation of the terminal ileum can be caused by gluten intolerance. Early Crohns in the terminal ileum often involves the finding of small ulcers, giving a cobblestone appearance.
An endoscopy would be needed to show true Coeliac disease, as the colonoscopy would not go far enough into the small bowel. Gluten sensitivity tends to damage the villi in the small intestine, giving a flattened appearance to the mucosa. And yes, it can cause significant pain.
Did they biopsy the area during your colonoscopy?
They only can go into the beginning of the terminal ileum with a colonoscopy and that is where they saw it..i also had a small bowel follow through after that where i drink barium and that came back completely normal... theres no mention of cobblestone appearance but that is what my naturopath also said.. even though i am intolerant to gluten i can take small amounts and have had blood work for celiacs and had it ruled out...dairy bothers me more than anything...milk and cheese messes me up right away..

my GI said foods cant cause inflammation where as my naturopath said they definitely can in the small intestine and she seems more trustworthy..how did you find out that gluten can cause inflammation in the small intestine? the internet seems to be all over the place..thanks for your help
01-16-2012, 07:50 PM   #13
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Hi there, I have very recently joined this site (tonight to be exact - UK time). I was diagnosed with Crohn's in Feb 2002 and had to have a R - Hemicolectomy a month later as the disease had affected the bottom part of my small bowel, ileum and part of large bowel so bad, surgery was the only option (this was mostly to do with medical testing over approx 10 years to find a diagnosis). To cut a very long story short and minus all the ups and downs I have experienced, since 2002 I have been on various medications, some have worked, others not so good. It has been a long hard road up to this point. I am currently taking 6-Mercaptopurine (not many patients in the UK are prescribed so think I could possibly be a guinea pig!..hee hee)..I am still on Prednisolone, have been since 2002 (except for Entocort for 2 years in 2006 & 2007 which was not too effective at the end) and have bone thinning as a result of long term prednisolone use.

Well, I wanted to share my experiences of food with you. Over the years I have tried and tested many things. I have completely cut out dairy (semi skimmed cow's milk; cheese and butter), substituting this with Soya. It was a funny change which I had to get use to (the taste was completely different and being a cheese lover, i found it hard) but after a few months, I felt better. During the last 3 years I have re-introduced dairy - semi skimmed milk (I suffer with major stomach cramps & diahorrea drinking full fat cow's milk), mild cheddar cheese, edam, diary-Lea and margarine/spread (can eat a little real butter but do suffer with stomach cramps.
I have taken to eating foods rich in Protein & Vitamins from the 4 basic food groups - Meat, Dairy, Cereal & grains, Fruit and Veg. However, in saying this, I cannot eat some products within these groups therefore I stay well away from certain things like swede, cabbage, white bread, spices, high fibre, bran. I also find mixing starch (potatos) with some green veg etc makes me really bloated and causes me significant stomach cramps and I do not eaten Indian food as this is a 'you'll find me in the toilet' line!!.. Oh and chips is another story, was admitted to hospital after eating chip shop chips so obviously, I stopped eating them. However, there is a good outcome to this, after some experimenting, I realised (after a long time) that it was actually the sunflower oil the potato's were cooked in that made me so unwell... moral of that story = vegetable oil is the way forward for meeeeeee

Pork is another difficult one for me - if I eat a pork chop its the case of 'you'll find me on the toilet' but I can eat Bacon, deli ham and Cooked Gammon!! Hmmmmm..

Like a few other people mention here, a food diary is a brilliant tool to use. Some days, I can eat something and be fine but the next time I eat it, I'll be on the loo/can/w.c/jonny/toilet literally within minutes and this can impact significantly on your social/work life. I also take multi-vitamins and vitamin B-12 tablets daily to ensure I am getting the necessary vitamins into my body

Basically, the food thing is hit and miss, trial and error...

There's lots more I could report to you, from a personal experience, however I do not want to over-do my first post and send everyone to sleep....
Hope this post helps or at least provides some insight into my (the) complex world of Crohns and food....
Hope everyone is well ...
01-16-2012, 07:57 PM   #14
handle
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See:
http://kalishresearch.com/a_gluten.html

Look specifically down to 'Physiological Effects of Sub-Clinical Gluten Intolerance' which may be your condition, given that they did not see the classic mucosal flattening which marks fully fledged Coeliac Disease.
If dairy bothers you more, then that is also likely to cause an inflammatory response.
Of course that doesn't rule out possible I.B.D., or other issues. If I were in your situation, I would eliminate the troublesome foods, and then retest in 3-6 months. I doubt I would continue with the Budesonide beyond the two months, but that is only my opinion based on your response to it.
Good luck - it is often a bit of a journey.
01-17-2012, 11:05 PM   #15
taylor27
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See:
http://kalishresearch.com/a_gluten.html

Look specifically down to 'Physiological Effects of Sub-Clinical Gluten Intolerance' which may be your condition, given that they did not see the classic mucosal flattening which marks fully fledged Coeliac Disease.
If dairy bothers you more, then that is also likely to cause an inflammatory response.
Of course that doesn't rule out possible I.B.D., or other issues. If I were in your situation, I would eliminate the troublesome foods, and then retest in 3-6 months. I doubt I would continue with the Budesonide beyond the two months, but that is only my opinion based on your response to it.
Good luck - it is often a bit of a journey.
That is such an amazing link with so much useful info..makes me feel like that is what is wrong with me considering I only get sick from food... It also makes me wonder when you hear of these "miraculous cures" and other things how many ppl are actually misdiagnosed because there are so many stubborn GI's who don't "believe in" food intolerances.

I think everyone should get these tests done, I know they are expensive but if it can help you feel better and 100% I think it is worth the $400-500. With such high numbers not being confirmed imagine how many ppl it would save from different diseases and all. Anyways thanks for the link and hopefully more people will take a read.
02-09-2012, 01:49 PM   #16
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Hello Taylor,
I just happened to find this forum and loved that I saw your message!
WOW...you are singing my song! I too had a colonoscopy in December and the GI says that I have mild Crohn's of the TI. The biopsy was done that show no ulcerations and mild non-specific active chronic ileitis. I had already made another appt with a new GI since I did not care for this one and saw him a few weeks ago. He ordered a SIBO test that was negative. He agreed that it was most likely Crohn's, but, I just don't know. I presented with lower abdominal bloating and trapped gas not being able to pass, no fever, diarrhea or blood in stool. After getting that diagnosis three days before Christmas I decided to be proactive about it all. I had a million tests done this year and really have had enough. I am taking probiotics and numerous supplements to help with the inflammation. I also stopped dairy completely as of 1/2/12 and can feel a HUGE difference with the original complaints. I have lowered my gluten by half too. I have a son who is allergic to milk, all nuts, eggs and wheat so I really wonder if this is an allergy and not Crohn's? I can tell you that stress makes me worse and I need to work on that one. I have felt really good the past few weeks. The doctor wants me to take Pentasa 8 pills a day and I have yet to begin that.
it's amazing to think that one day you can wake up and all this just randomly happens to you... I could not agree more!
My new GI wants to do an endoscopy in March and I am just not sure if I can do another test

I hope you are able to find the answers you need From everything I read there is a huge connection between state of mind, stress and diet with Crohn's.

Take care,
Ann-Marie
03-21-2015, 09:09 AM   #17
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Hi Taylor 27...I just wanted to resurrect this old thread and find out how you are doing, and if you ever found your answer as to whether it was Crohn's or food allergens?
03-21-2015, 12:10 PM   #18
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Hi, just found this old thread about food intolerance and the connection to crohns. My story is pretty much the same as all of the other's posted. Mild chronic inflammation of the terminal ileum. Put on Budesonide and Pentasa, had horrible reactions to both. GI didn't believe in food intolerance so changed to a different more open minded GI doc across the state who actually listened to me and recommended seeing a Naturopath to test for food intolerance. Well, it seems I am fructose intolerant (I had been pounding down the fruit eating Paleo) and also shouldn't eat potatoes within 8 hours of eating grains. I am feeling better. Also started on supplements per the ND. Hopefully, I have solved some of the mystery to my issue. We will see. Good luck everyone, these things are difficult to say the least 😞
03-23-2015, 02:05 PM   #19
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I'm curious also how you are doing, good I hope
04-18-2015, 11:32 PM   #20
RNGirl
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I'm actually doing very well. Remain gluten free, but removing fructose and adding back all other grains has improved my quality of life and I'm maintaining my weight again. Can only eat cantaloupe and pineapple, but going to experiment with sparse addition of low fructose fruits when I feel it's safe to do so. I do believe the fructose was contributing to my nausea, weird bowel movements and was over all feeling unwell.

Naturopath prescribed the following:

Calcium phosphate.
Vitamin D3 4000 IU
Drenatrophan (adrenal support)
Spirulina
Sacro-B probiotic
Gentian/skullcap (stomach upset/heartburn)

Currently, no crohns meds. For me, food greatly contributes to my symptoms. Feeling almost normal again. Thanks for asking!
04-19-2015, 12:43 AM   #21
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Going EEN... remicade failed... so gonna remove food out of the equation and slowly reintroduce over a year.
04-19-2015, 03:37 PM   #22
buttER
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I'm actually doing very well. Remain gluten free, but removing fructose and adding back all other grains has improved my quality of life and I'm maintaining my weight again. Can only eat cantaloupe and pineapple, but going to experiment with sparse addition of low fructose fruits when I feel it's safe to do so. I do believe the fructose was contributing to my nausea, weird bowel movements and was over all feeling unwell.

Naturopath prescribed the following:

Calcium phosphate.
Vitamin D3 4000 IU
Drenatrophan (adrenal support)
Spirulina
Sacro-B probiotic
Gentian/skullcap (stomach upset/heartburn)

Currently, no crohns meds. For me, food greatly contributes to my symptoms. Feeling almost normal again. Thanks for asking!
RNGirl I was wondering what foods have a high fructose content?
04-19-2015, 03:42 PM   #23
buttER
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Can it still be a food intolerance if you also get fever (39-39C) and diarrhea 30 x day?

I'm wondering because the doc sees inflammation but it is not backed up by the biopsies. I know that certain foods, especially dairy, gluten and certain veg and fruit, make it worse. I think it was a cauliflower cheese that sent me to the ER.
04-19-2015, 10:35 PM   #24
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Hi King of Orange,

All fruits have fructose, some have higher levels of fructose. The worst are the stone fruits like apples, nectarines, peaches etc. I was told to stay away from all fruits except the occasional serving of cantaloupe and fresh pineapple. So for me, as painful as it is, means no wine, catsup, olives, coconut and condiments with wine vinegar or apple cider vinegar. Sounds bad, but I'm eating most vegetables, grains (except wheat), eggs, beef, pork, fish, salads, almond butter and occasional almond milk ice cream. The naturopath I see considers coconut and olive oil fruit. Dried fruit has the highest levels of fructose. High fructose corn syrup is in everything. Really bad for you. I read all food labels, eat organic and make my own bread and baked goods. High fructose corn syrup messes with your insulin levels and latest studies indicate causes obesity and contributes to diabetes.

Not sure I can comment on the fevers you are having, but I had stomach upset and diarrhea after eating fruit, especially dried apples, which I now know are extremely high in fructose. kind of like always having the flu. Seems to be resolving now and better bowel movements than I have had in years.

I hope you get some resolve with your problems. Crohns is a difficult disease to get a handle on. I don't do meds well, so I've had to figure out my own way to manage my symptoms. Good luck and take care.
04-22-2015, 03:06 PM   #25
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Can it still be a food intolerance if you also get fever (39-39C) and diarrhea 30 x day?

I'm wondering because the doc sees inflammation but it is not backed up by the biopsies. I know that certain foods, especially dairy, gluten and certain veg and fruit, make it worse. I think it was a cauliflower cheese that sent me to the ER.
What did they find when you went to the ER?

There are different kinds of food intolerance, and there is an awful lot of false information about food intolerances around, and there are a lot of people/laboritories charging money for meaningless food intolerance tests.

When you have digestive problems, you may well find some foods worsen your symptoms, but this is very different from lactose intolerance, which seems to be the most well known food intolerance and is fully recognised as a medical condition. This site has some clear information about food intolerance types, symptoms, diagnosis, etc.: http://www.patient.co.uk/health/food...nd-intolerance
04-22-2015, 03:29 PM   #26
buttER
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Thanks UnXmas, you are a mine of information.
The ER just checked me for sepsis markers in the blood and then sent me home.

I can't find anything about having a fever from food intolerance (or IBS).
04-23-2015, 04:20 AM   #27
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I haven't heard of food intolerance causing fever either, though I'm not 100% sure that it can't. IBS definitely can't cause a fever.

You could ask your doctor for a lactose intolerance test to see if that's causing the diarrhoea. Or you could avoid lactose for a couple of weeks, but then if you did find yourself feeling better, you wouldn't know if you have straightforward lactose intolerance or if you have some other problem that's making you sensitive to dairy.

And that still wouldn't explain the fevers. How often are you getting them? If you've only had a couple of fevers they could be due to something seperate from the digestive problems that just happened to occur at the same time. But if you're getting them frequently, and if the onset of the fevers and the diarrhoea was the same time, it seems to be a bit too much of a coincidence for them to be unrelated to each other.

What diagnoses are your doctors currently considering? I don't know that much about fevers but I know when I was in hospital and had a temperature of 40 C the doctors were very concerned, so if yours is 39 that shouldn't be something your doctors can just ignore. And diarrhoea thirty times a day is pretty serious too and any sensible doctor should not be ok with labeling that as IBS and leaving you to figure out your diagnosis on forums like this (if that is what they're doing - I know it's not always the case - many people end up trying to self-diagnose even though their doctors have tried but still haven't found the answer). Do you ever get diarrhoea that wakes you up at night? "Nocturnal diarrhoea" is a sign that digestive symptoms are not due to IBS.

Sorry I can't offer anything more useful.
04-23-2015, 02:01 PM   #28
buttER
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Hi UnXmas

You are so lovely, you are always helpful, and thoughtful.

I know I am not lactose intolerant.
The fever went on for about 6 months and yes always spiked with diarrhea. Thankfully since I started the Asacol I have not had the fever.
I also get/got nocturnal diarrhea when things get bad.

I get the feeling the doctors are following the protocol, no positive diagnosis from the biopsy=no disease. I need to persuade them to look further.
I also have the feeling that the doctors have selective hearing, so they ignore words like fever, weight loss......

Perhaps soon it will be difficult to draw a line between IBD and IBS, there are so many potential causes for each, some of them overlapping.

I am dreading the visit to the doc next week. He is my last chance, otherwise I will have to look futher afield (England?).
04-23-2015, 03:17 PM   #29
UnXmas
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Have your doctors got a record of your weight or temperature? If you get a temperature, it may help to try and make an appointment then - you may basically have to prove it to them. And intermittent symptoms have a habit of refusing to occur when you're in hospital or when you already have an appointment with a doctor. Weight loss is easier to bring to doctors' attention - your doctors should be weighing you so the results over the course of several weeks should speak for themselves. You may have to stress the weight loss is unintentional at first, but, depending on how much weight you have to spare before you're underweight enough that it's noticable to doctors, eventually they are going to notice.

I'm not sure you'd do better here in England. There are some good doctors here, and there are a lot of awful ones. I was told I had IBS (amoung many other incorrect diagnoses, most of them mental illnesses) for years by many doctors. Now I have an ileostomy and nearly died last year from a perforated intestine. Though that didn't happen because I was misdiagnosed for so long. I'd been getting good treatment for years before that happened. But I think in England you may well run into the problems of doctors relying on tests and refusing to listen to how much patients are suffering. It would just be a question of whether you're lucky enough to find the right doctor for you.
04-26-2015, 03:41 PM   #30
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Thanks again UnXmas. I have asked my Mum to try and remember my case history and write everything down.
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