Beets flared me! How weird?

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Snoflayk505

Joined
Apr 19, 2011
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Beets are a legal food according to SCD but they totally flared me! That is weird, I wonder what is in beets that makes my body doesn't like?

I am learning so much from doing this SCD diet. It is so easy to determine what your body doesn't like when the things you eat are so pure. Much easier to do the process of elimination. So far Cocoa Powder and Beets cause my Crohn's to go nuts. The cocoa powder was waaay worse and i only had a lick. Ate an entire beet Monday night and flared yesterday morning. Feeling lots better today. Not sure if I ate too much of it or my body just doesnt agree with them. I will try them again in a smaller amount just to be sure when I feel better.

I have went back to the Intro diet each time I flared from a food and eliminated it out of my diet which works great. This is the third time now since I started the diet that I flared from a particular food. It takes about 4 days to feel normal again for me. (With no meds! yay lol)
 
When you say they flared you, what did you experience?

How are you monitoring your condition to make sure it's a particular food causing a flare and not existing disease being aggravated by the food?

I hope you feel back to 100% soon! :)
 
I had beets and roasted chicken for dinner and was nauseous the morning after(yesterday), really acidy and full feeling. Little cramping. I knwo it wasnt the chicken cuz I have that like every day :) Today no nausea just sharp cramping pains in a few spots throughout my small intestine. ALso I know it's inflamed because my Ostomy is not working as well at the moment. I get blocked VERY easy when i flare cuz everything gets so inflamed and twisted.

As for how I know I had no active disease before because I had an MRI on July 17th that showed no inflammation. Plus it is so obvious what the cause of my flare is because it seems to be clockwork when I react to something. I had zero symptoms until I ate the beets.
 
AND i'm not 100% on anything about foods and flares and all that hehe. I am just listening to my body and trying to learn everything I can from it. It seems to be working so far. :)
 
No I can't afford organic ;) Do you think it was pesticides or something? I boiled the beets...figured that would kill everything. I really thought it was very odd that beets flared me cuz of the anti-inflammatory properties and stuff. Thinking I won't have a sure answer until I try beets again after I pass this flare.
 
Who knows. There hasn't been any connection that I'm aware of between pesticides and IBD. I personally don't eat anything not organic but I can't claim it makes IBD worse.

The biggest problem with saying, "X food caused my issue" is how many variables come into play. For example, you may have been eating potatoes (I know you haven't, this is just an example) for the last two months and feeling fine. But the glycoalkaloids from the potatoes slowly increase your intestinal permeability to the point you finally flare. You eat beets that day and feel terrible and blame the beets and go back to eating your safe food, french fries.

It's so confusing and frustrating :(

If it was me, I'd test it. Don't eat beets for a month and get back to feeling amazing again. Then try beets again. I can't count how many "trigger foods" aren't actually trigger foods for me since retesting.
 
Yea I agree. Thats what I did with the chocolate. Tried it once, flared bad, got better, tried 3 weeks later n it did the same thing. So i swore off cocoa powder :)

It is kinda frustrating but not nearly as frustrating as what I have experienced with the past decade of meds not working and all the docs. Feels more like I am finally getting some long awaited answers more than anything :) Pretty cool that good old homemade chicken soup is my go-to medicine now.
Just wish i didnt slip up on some apple slices for dessert last night :( Got so used to eating fruits and veggies again that I forgot how bad they hurt when in a flare!
 
I've heard that other colors of beats (the yellow and orange) are easier to digest (don't remember where). Might try those. Plus you wont have that scary thought of, "OMG am I bleeding?" :p

Also, I'm curious what your CRP is and if you have it checked on a regular basis. MRIs wont tell the full story.
 
Flaring honestly is not something that happens overnight. It's a long process of breaking down the barrier of the small intestine, and after weeks of damage you finally flare. The chance the flare was more pronounced because of some food is possible, but 1 single food does not make you flare on it's own, it usually means a disease not in remission. I think it's important to make that distinction, people who are in remission through drugs that have a decent track record of mucosal healing (and many will attest to this) can basically eat anything without a flare whatsoever, because the process from healed intestine to flare is one that takes weeks.
 
Hmm I just don't agree with that. With what I have went through and am experiencing now. It is VERY apparent that my body is reacting overnight. I know within 12 hours if a food causes me symptoms. I just had an MRI on the 17th and didn't have a single symptom until 12 hours after I ate the beets. Anyways, I'm just sharing my experiences with what is happening with my body. Where is there any proof that says flaring takes weeks or a week? Gosh you guys are really against this whole diet thing and the possibility that anything that I am saying has any truth it seems.
 
Honestly I'm quite offended by your comment Kiny. How can you sit there and tell me something that is happening to me is not possible or challenge EVERYTHING i say when I am trying to tell people how diet saved my life. Not quite what I'm looking for when I come to a support group. I'm not claiming to be an expert, I'm simply sharing my stories and experiences. I'm sorry if what is going on with my body is not making sense to you. They don't even know enough about Crohns to say diet is not the cause. Anyways, I'm a little annoyed so I am going to stop now. Have a good night.
 
No one is attacking you Snoflayk505. :)

Just like with medication, its important that everyone get all the information they can about what works for some people and what doesn't. This helps them figure out what route they are willing to try to treat their own illness. So when we take medication we have regular testing done (as you sort of did with the MRI, although colonoscopies and endoscopies are more the norm for regular check ups while in remission) and regular blood work done to make sure we have little to no inflammation and that's why the CRP blood test is a fairly common one done. I think people would be much more open to diet only treatment if the people who went that route also had regular checkups and shared their results. That's why I asked what your CRP was.

As far as diet goes, its known to aggravate symptoms, especially during a flare but there's little evidence that it causes flares compared to all the other studies out there. I believe David shared a study a while back on food and its relation to flares. I tagged him in case he would like to chime in and share that information once again.

"Most experts believe, though, that some patients can identify specific foods that trigger your gastrointestinal symptoms, particularly during disease flares." http://www.webmd.com/ibd-crohns-disease/crohns-disease/creating-a-crohns-disease-diet-plan
 
I see my GI and surgeon regularly. I currently have an abcess in my rectum and a hole the size of a lighter. My bloodwork is reflecting my wound at the moment which is one of the many reasons we did an MRI. My GI is very excited the result I have gotten from diet because of the struggle we have went through the past 7 years.

Anyways, I can't help but feel attacked when Kiny is telling me basically that I am wrong and what is going on with me is not possible or I'm interpretting it wrong. Not one expert can say that diet is not a cure because it hasn't been thoroughly tested. AND the tests they have done in small groups are showing HUGE success rates. GRRR Just going to go ahead and end it here.

Everyone thinks only a pill will hep them and I am trying to say that maybe diet can help TOO. I am not opposed to taking Crohn's medication and will definitely take it if my journey on this diet does not continue to work like it is now. All I am simply doing is trying to figure out my body and try and help people bny sharing my experience. But, I am good now. Just too much negative reaction for me to handle.

Good luck everyone, I hope you all find good health.
 
Everyone has their own methods for trying to get into remission whether its diet, medication or a combination of both. There is no cure for Crohn's, not even diet.

You must accept that everyone has their own opinions based off of their own research and what they learn on the forum and some are more blunt (not the same as attacking or being negative) than others. Some posters can be a little rough around the edges sometimes but that doesn't mean you or anyone else should ignore what they say. I'm sure you don't want people to ignore you for any reason. Just because someone has a different view doesn't mean they are attacking you or being negative.

And yes your blood work will reflect the hole you're dealing with but it will also show your current state of remission or possible flare. Even my CRP shows my inflammation in my joints because I have arthritis as well yet mine is still pretty low so it doesn't show that I'm flaring. I'm assuming that you don't get your CRP tested. I think it'd be important for your GI to start testing it. Might suggest it to them.
 
At his worst, my son didn't show hugely elevated numbers in his CRP, ESR etc... In fact, they were barely high end of normal. Both his diagnosing GI and pediatic GI said his inflammatory markers were not indicative of the severe inflammation in his TI. I think it is great that with this diet you aren't experiencing symptoms I hope this continues for you! I also don't think Kiny was in anyway attacking you just stating concern based on the research that Kiny has done. We are trying to incorporate healthier eating into our lifestyle although ours would be closer to Paleo but since there is no cure for CD this is just for our over all health.
 
Was just trying to share my progress on my journey with the SCD diet. And no, I haven't gotten my CRP tested yet. Was supposed to talk about getting a food allergy test this month but was in the hospital for my abcess and missed my appointment. I dont know what else he had planned but he was going to run some blood tests and go over my MRI results and see how my body is doing on this diet. I got a copy of my MRI which showed no sign of inflammation or narrowing. Rescheduled my appointment for October.

Just feel like I have to defend myself when someone is telling me I'm wrong and it's not possible. Anyways, no need to continue this. I was offended, the end. Thanks for your posts and support. Just trying to share my experiences so it might help others.
 
Snoflayk505, don't be upset,
often it takes a while to nut out what different people call different things.

From the sound of it you experienced cramping and spasms.

Something you ate yesterday won't cause a flare but can easily aggravate whatever is already present.

If you have been making good progress (and it sounds like you have), then your symptoms have probably reversed to the point that you are no longer as aware of them but not fully healed, and some foods will still cause a reaction.

Out of interest - were the beets cooked or raw?
 
Wait a second. You've been promoting the hell out of this SCD diet and talking about how it got you into remission. I didn't know you had an ostomy, because (and although its just my opinion) I'd say that's what got you into remission. Were you on the diet before getting the stoma? If so, why do you think it didn't prevent the need for surgery?

Just curious
 
Kwalker
All Im doing is sharing my experiences and telling people SO FAR this diet has worked for me, and I was TRYING to just keep people updated on my journey trying diet to control it. Im not trying to PROMOTE anything like a product. Im just trying to help people jesus.

I got my Ostomy in August 2010. My crohn's stayed away until this around April and May of this year. I found the SCD diet in June. I was very close to needing to be admitted. Was unable to eat anything but liquids and very sick. Started the SCD diet and within 4 days of drinking homemade chicken broth I was able to start the intro diet, within 8 days my symptoms were almost completely gone. I have only experienced symptoms a few times since then and it was only after eating something I shouldn't have and aparently beets.

I am normally a stress free person and so loving and caring. I cant believe the responses and disbelief I am getting from people just by sharing my journey through trying a diet to heal my Crohn's. This is frickin crazy. I just wanted to help people and I guess Im just overly sensative. Thinking this is just not the right place for me. I have never felt like I needed to defend myself so much in my life.
 
Whether my disease is just hanging out waiting for me to eat something and bite me or Im in remission and food flares me, all I know is using foods to control my SYMPTOMS seems to be working.
 
I was just trying to figure out if you started the diet before or after needing surgery....


You should be happy people are even replying to your posts. It means that they're interested in what you're saying and just trying to ask questions and gather more information. When you get so defensive it just seems like you're leaving parts out or hiding something. Just help people instead. Were all here for the same reason. Stressing about silly internet stuff isn't going to help your crohns that's for sure.
 
Hide something? Sigh, i just give up. Why would I hide something... Anyways. Seems all anyone wants to do is prove me wrong anyways. So sorry im kinda upset. Just baffled more like it actually.
 
This is a support forum. Nobodys bashing, insulting, accusing, or anything else you can think of. No matter what you do in life, there's always going to be someone questioning it or asking questions, instead of getting so defensive just take the time to help others understand.

Your reaction is pretty atypical to flare that fast after eating something so simple. That's why people were asking questions, trying to figure out your symptoms. Nobodys saying you're lying.
 
Unfortunately when you come to an internet forum you will get many and varied opinions and at times it is difficult not to take offence at what is being said but it is important to leave those comments behind and move on. Robust debate is not uncommon and there is many a time I have had to agree to disagree, take a deep breath and continue on.

There are many, many members here that are following your journey with keen interest Snoflaky505, myself included, and it would so disappointing to see you discontinue posting your experiences. I use the information you and others provide to boost my knowledge of Crohn's and hopefully remain a constant source of knowledge for my children.

Dusty. xxx
 
Thanks Dustykat
I completely understand. Thanks for being so nice :) I just feel so ....I guess unwanted lol. Feel like a drama queen more than ever now because of all the negative reactions ive gotten from so many because I am so passionate about this diet. Ive never had to defend myself so much in my life.

This is like the 3rd time in a week I have had negative reactions and feel like Im being picked on. I guess I just wasnt expecting so many to disbelieve or question it so much. i kinda thought people would just see what happens with me or try it themselves as well. Wasnt expecting to be challenged on my interpretations or thoughts on whats going on with my body. Maybe suggestions but not straight up, you're wrong and it's not possible.

Idk I sure hope all you people who think diet has nothing to do with Crohn's will remember me when they come up with a cure because of the link they find between food and IBD. I bet some scientist will find a way to block those reactions and find a REAL cure. The first start to finding a cure is finding the source! Not enough people have even been trying or studying diets effects on IBD until now. Just watch ;) I bet you will all say, "wow snoflayk was right! Diet does play a HUGE role in IBD!!" lol so that is just a joke but it's possible.

What if it really is diet that is the key to finding what causes Crohn's. We will never find out if people don't at least try.

So Im trying for everyone who is curious. I can't just sit around and wait for my next med anymore. It was time for me to take charge of my illness into my own hands. Im just trying to understand my body. Im not looking for arguments.

I will change my signature and be a little more detailed I think.
 
Passion is a wonderful thing so hold onto it tight with both hands and never let go.

I can well understand where yours is coming from hun. :) Just know that you are not being picked on.

As to diet...my own daughter is strongly following that path and although in remission before going that route I know deep down that many of the choices she has made are not just lifestyle changes but an all out attempt at increasing her chances of this disease never rearing its ugly head again.
Will diet make a difference for her? I don't know, my thoughts about this disease, in all it's aspects, have changed so much over the years and I guess that change of mind happens with knowledge and personal experience. What I do know now though is she happy and healthy both physically and psychologically and diet and exercise is certainly playing a role in it.

Good luck with your journey and I will continue to read with interest.

Dusty. xxx
 
Snoflayk505 said:
I got my Ostomy in August 2010. My crohn's stayed away until this around April and May of this year. I found the SCD diet in June. I was very close to needing to be admitted. Was unable to eat anything but liquids and very sick. Started the SCD diet and within 4 days of drinking homemade chicken broth I was able to start the intro diet, within 8 days my symptoms were almost completely gone. I have only experienced symptoms a few times since then and it was only after eating something I shouldn't have and aparently beets.
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I'm not picking on you, I just want to understand what I believe I just read.

You got your ostomy in 2010.
You flared again in 2012 this year from April-June.
Then you started the diet in June this year.
Your symptoms have come and gone since starting the diet roughly a month and a half ago.

You're saying you've been in remission for a little over a month while still having symptoms off and on?

Just trying to understand is all. :)

Hope your appointment goes well with the GI. Wish you could get in sooner though especially since you're having symptoms. :(
 
David said:
How are you monitoring your condition to make sure it's a particular food causing a flare and not existing disease being aggravated by the food?
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David, I am curious. What is the difference between "a particular food causing a flare" and "existing disease being aggravated by the food". I am still new and learning about crohns/uc so maybe I am missing some basic understanding here.

Surely "a particular food causing a flare" is because of "existing disease" (eg: crohns, UC)" - without "existing disease" how would there even be a flare?

And how would the sufferer monitor the condition in order to tell the difference?
 
@Gra

If going from a healthy intestine to an intestine that is ulcerated / inflamed, takes say 2 weeks, and if a flare is the result of any food passing past that ulceration...how can you possibly know the food was in any way responsible, it would have happened regardless.

I didn't think like this in the beginning, I thought that a flare was associated with one particular food and I, like many did, started an elimination diet, until I basically had nothing left to eat.

Once I went on remicade, and it induced complete mucosal healing, I could eat whatever I wanted, without flaring at all. It has didly squat to do with the food, it was the result of continued inflammation, any food that would have passed against that wound would have resulted in pain at that moment.

I believe in diet because some might have mycobacteria, some might not be very healthy, I want enough protein since protein is the macronutrient needed to recover and heal wounds, but I don't base my diet on flares, it's not reliable.


And let's say some food might aggravate crohn, by eliminating whole food groups at random you might become nutrient deficient, I assume that is much worse than the minute chance that through some elimination diet you might find a food that is aggravating crohn. Some diets are really restrictive, SCD is one of them, nothing against people on SCD (I tried it myself), but the diet itself is eliminating a whole bunch of food groups, it is low on fibre, low on SCFA and low on some aminoacids. There's also a real chance that this diet is not helping crohn but hurting crohn because it's nutrient defficient. If you don't want the diet critiqued, then fine, trust the diet, ignore what anyone else says, but crohn is a bit more complex than just eliminating complex carbs I think.
 
Thanks Dusty :) I wish you and your family the best of health. Something about you is so calming and peaceful and understanding. Its very nice to talk with you =D I hope your calmness can rub off on me ;)


Crabby
Yes, you have it exactly right. I have been on the SCD for almost 2 months now. THis is VERY new to me. That being said, you might wonder why I am SOO passionate about this diet when it's been such a short time. This is why:

My reason is because I was so Crohn's sick when I first started this diet. I for sure would have been hospitilized and on prednisone and pain meds for weeks if I had gone much longer. I suffered for 11 years, hard, hard suffering. My doctor was baffled SO many times on how to even just get me healthy let alone stay that way. It was so unfortunate how sick I was we really werent sure how much more my body could take. After the birth of my daughter from a wonderful year and a half of remission thanks to Humira, I was in the hospital flaring for a month with intestines shot and diseased so it was Ostomy time. Which brings us to the present. I was so sick and following SCD took me right out of it, in practically a week! It was incredible. Since then I became obsessed and determined to find out if this is a coincidence or if my body is really responding to diet! Im still in shock.

The reason i feel I have been in remission since I started is because I have been eating nuts and salads constantly! Its amazing. No way in hell could I ever even take a bite of something like that with active Crohn's. So, thats why Im here now. Trying to make sense of everything. it cant be just a coincidence that this is working? I have had symtpoms immediately following the next day after eating something im not supposed to 3 times since I started.

-first was a piece of chocolate cake I tried after like 3 weeks ....(more like fell off the wagon lol)
-second I was testing cocoa powder to see if chocolate was the culprit. I had symptoms for a week after the cake and tried the powder like 2 weeks after I felt better. Had a symptoms the next day or two i think and then got better.
-Third is the beets I tried Monday
I relieved my symptoms EVERYTIME with the Intro SCD diet. Even now my symptoms are almost gone and ive been doing the intro since the beets. Just a tender tummy now and a little bloated. Talked to my GI today and they are working me in soon. I dont know when yet.

So, as you can see its REALLY convincing. I am just trying to make sense of it and learn what I can. I really do appreciate advice from everyone. i guess im a little defensive and get offended so easily but its because I feel like I stumbled on a hidden secret or something! It's really amazing.

I am open to any interpretations of what might be happening. But it really does seem that I can calm my Crohn's with diet. I will take meds and all that one day if diet fails or just isnt enough. But at least so far its making my life a whole lot easier.

Also, the SCD communities and blogs are SO FULL of so many people that have succeeded with diet. I really hope diet continues to work for me because it really is wonderful to have the control. Im hoping all I have to do is learn what my body doesnt like and I can be symptom free forever! lol A girl can dream ;)
 
Kiny can you please show me something that says it takes 2 weeks? Where have you gotten this number from, I would love to read it because there is no way thats the case in my situation. Well i guess its possible cuz im no MD but really, where does it say it takes 2 weeks. I thought they dont even know enough to make that statement?
 
Snoflayk505 said:
Kiny can you please show me something that says it takes 2 weeks? Where have you gotten this number from, I would love to read it because there is no way thats the case in my situation. Well i guess its possible cuz im no MD but really, where does it say it takes 2 weeks. I thought they dont even know enough to make that statement?
Click to expand...

I never said it took 2 weeks though, I assume it depends on a lot of factors.

I said if hypothetically speaking, an intestine that is completely healed, to one that is ulcerated and inflamed to the point where you get a flare, takes 2 weeks, how do you know that whatever food you ate at the end of those 2 weeks was in any way responsible for your flare?

Your theory is that you ate a food, not in any way associated with crohn as far as I know, that caused a breakdown of your intestine within a really short amount of time, and you flared. Have you ever considered that the reason you're flaring might not be food related at all?
 
I understand what you are saying, I am asking for your source. I want to know where you got the information that it even takes more than 24 hours for Crohn's to flare. I don't believe that is something that is known for sure.
 
Snoflayk505 said:
I understand what you are saying, I am asking for your source. I want to know where you got the information that it even takes more than 24 hours for Crohn's to flare. I don't believe that is something that is known for sure.
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People who go on drugs like infliximab, as I have, and reach complete mucosal healing, stay in remission for quite a long time after they go off the drug, whatever the rate of remission > flare is, it's a hell of a lot longer than 24 hours before you get to a point that you flare. (you also can eat whatever you want at that point, there is no way that someone who reaches remission like that still has flares by 1 food, it doesn't happen)

The opposite is also true, it takes 4 weeks (that number you can quote me on) on average in studies before someone reaches mucosal healing on a TNF blocker, the wound itself being completely healed takes years because of remoddeling.

So when someone says "food x, y, z, caused me to flare, and the next day I was better because I ate food a, b, c" and I'm not saying you did, but you see that all the time, people wonder if that is actually what happened, and I think I understand doctors now who aren't advocating a diet as easily as in the past now, because imaging tech has shown that it takes a while to go from one state to another, both ways.

Maybe I'm wrong, and maybe beets are a CD trigger that is causing flares...but I somehow doubt that's all that is going on and I doubt it's that simple to eat something..feel pain..and blame it on the food.
 
So basically your saying you have no source and that you can't show me any medical documentation saying that it takes longer than 24 hours for Crohn's to flare? Im not being rude, Im simply telling you you cannot make your opinion fact based on pure speculation.
 
Check this stress study out on ulcers. It was done on horses and shows horses were scoped day 1 with no ulcers, after 5 days of their group study they were scoped again and groups showed multiple signs of ulcers.......

Its not Crohn's but Crohn's has Ulcers. I cant find any information rergarding ulcer or crohns flare development but this study seems pretty relevant.

http://www.arenus.com/Info/Articles/Article/145/how-long-does-it-take-for-ulcers-to-develop
 
Snoflayk505 said:
So basically your saying you have no source and that you can't show me any medical documentation saying that it takes longer than 24 hours for Crohn's to flare? Im not being rude, Im simply telling you you cannot make your opinion fact based on pure speculation.
Click to expand...

here is a list for you, it's a process that takes weeks, you do not go in and out of remission on a daily basis depending on what you eat or don't eat

the process of the intestine breaking down and healing is one that takes weeks, I don't believe someone can actually tell or guess what food caused a flare by one single incident, that would have happened regardless

if you want stats of mucosal breaking down it's the exact same process, one of continued inflammation, if you want to look up stats on those be my guest, but it's not something that happend in 24 hours

if you are happy with the diet and are actually better, who am I to judge, I only know what I know, and that is that it is extremely hard to identify "trigger" foods when you are dealing with inflammation, a process that takes much longer than the time it takes to change meals


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This is healing rate. It is not relevant to my question though. unless Im not reading it right?? Where does it say how long it takes to develop an ulcer or flare
 
woman, believe what you want, I spent way more time on this than I am dear
 
I just wanted to know where you got your information because you offended me in your first post telling me whats happening with me is impossible. I simply wanted to read about it. I just want to know whats going on with my body and when someone tells me what im saying is impossible, i would think they have proof
 
This sounds more along the lines of, "what do you define as a flare?" There was a thread on it in the past and many people mentioned food "causing them to flare." Others mentioned that a flare is when your illness is not in remission, where you have inflammation or ulcers etc. and that people are confusing "symptoms" with "flares."

When you're in a flare already many foods can make your symptoms worse. These are "trigger" foods. When you're in remission these foods will not act the same way (unless say you're lactose or glucose intolerant etc.) and may not even affect you at all. Fiber itself is a known irritant and is not digestible hence why so many people have a hard time with raw fruits and vegetables (also one of the reasons why there's a lot more talk about juicing).

Snoflayk505, I'm looking for a proper source (scientific study) to share on the average time for a flare to rear its ugly head (I doubt there are many but I also doubt there are none). Takes the right key words, otherwise you get too much garbage to sift through.
 
This is an ulcer study in mice showing specific time sequences on how long it takes to develop an ulcer after injection of stuff that causes ulcers to form. It shows cell development after only 30 minutes of ulcer formation. Now these are gastric ulcers I understand but Crohn's has ulcers too. I'm pretty sure this can be put into the same category. Whatever food we eat that aggravates our Crohns could trigger what causes the ulcers and flare to form. So it seems to me its possible that a certain food can trigger a flare and show symptoms in 12 hours or so.

http://www.ncbi.nlm.nih.gov/pubmed/7999635
 
Thanks crabby! I really am I seriously looking for an answer. I want to know what is going on its my body. I appreciate you helping me look :) I'm having no luck so I just turned to gastric ulcers. They always find my intestines covered in ulcers so seems close enough.
 
I also contacted the Science Forum Monitor in help finding the real answer to my question how long it takes Crohn's to flare or Ulcers/symptoms to develop. I am hoping she will respond in this thread but if not I will copy what she says :)
 
Snoflayk, I for one am definitely rooting for you :) Heck, I am forever running little experiments on myself in an effort to try and find what works. Some I post, some I don't.

My only concern is how close you're being monitored to make sure the diet is working as well as necessary to avoid future complications. It's obvious that it's doing an awesome job reducing your symptoms and I am SO HAPPY about that. I just worry it's not got the inflammation down to the point that scarring won't occur over time. Of course, I feel that way about people here on their medications as well. Far too many people aren't being monitored closely enough to make sure their medications, diet, or whatever is working as well as they think. And some end up paying for it and it breaks my heart :(

Many are incredulous about diet working. They should also be incredulous about their medications working. I'm all for being hopeful, but think we should use hard data to make sure how we feel is telling the entire story.

This is part of the reason I'm a huge fan of the shotgun approach to the treatment of IBD. Have diet knock the disease down XX%. Have medications knock the disease down another XX%. Have stress reduction knock the disease down XX%. Have alternative medications knock the disease down XX%. Have proper vitamin/mineral supplementation of deficiencies knock the disease down XX%. Have supplements knock the disease down XX%. Etc etc. With all those, I think the chances that the number is 100% is pretty good for many people. But if they only do one or two of those, then they need to be careful that the number isn't high enough to control symptoms but not high enough for full remission.

One thing so many don't realize is that the studies of these medications are often based upon indexes such as the CDAI. "We define remission as a reduction in the CDAI of the person of >100" might be something you read. What that means is their SYMPTOMS are reduced significantly but doesn't ensure that they are devoid of inflammation and their mucosa is healed.

I've spent a long time on the soap box :) Snowflayk, you're great. Keep doing what you're doing. Continue to learn about this disease and refine your diet and treatment regimen as best you and your doctor can. Continue to share your ups and downs. Allow yourself to be vulnerable as that is what allows others to benefit as well. As long as you do that, I'll be here with the pom poms :)

*hugs*

*steps off soapbox*
 
Wow, Thanks so much for your post David, you made me feel so welcome :) I see exactly what you are saying and I love it! I feel like I am ready to take Crohn's head on now! I am going to hit it at every angle I can. Diet, Chinese medicine teas, stress and nutrition are my main focuses at the moment.

I plan on taking my doc in every step of my journey :) It's a little hard because he has A LOT of patients so its hard to get in soon and I keep having emergencys and miss his apts. I'm a little worried though because I am waiting for my rescheduled appointment but my flare is already going away with the Intro diet since the beets! Kinda hoping it will show slight inflammation or something so I can prove the Intro diet is taking me out of a flare. He called this morning to tell me they are scheduling me for another MRI and blood tests and ill get an appointment to go over results. Probably going to take a few days.

I am actually so glad you posted because i wanted to ask you a question. I am looking into vitamins and stuff and there are so many recommendations out there, I dont want to take stuff i don't need or take too much of something. I am waiting for my doc to call back because I want to make sure he does a blood test on my nutrition or something so I can go get supplements and vitamins or whatever I need. I am wondering if you can recommend some vitamins that are a for sure i should be taking without seeing tests yet? I just want to stay symptom free!

I totally agree with what you were saying also about possibly not being completely out of a flare. Maybe even though I could eat all the nuts and salads it's still possibly there doing damage? I really want to find this out. Maybe it really is only taking 12 hours to start a flare? I messaged (I believe your sister) the Judith to help me with ulcer development time. Saw her on another post with some pretty amazing scientific information. hoping she can help some? I am just tired of waiting around for docs to fix me ;) I am taking charge of my health this time around!
 
MR Enterography ? scheduled for the 10th. Never had this test before. Curious to see the imaging from this :) They said it's a more detailed imaging of the small intestine. I kinda miss the old days where he could just scope me in the office real quick when I had a colon and see instantly how bad it is. Guess it's not that easy with a Stoma.
 
The difference with an MRE is the type of oral contrast that is used. Rather than being absorbed by the small bowel it is designed to coat it.

Scoping is done with stomas but still has limitations due the length and multiple folds of the small bowel.

Good luck!

Dusty. xxx
 
Let us know how the scan goes Snoflayk505.

As far as vitamins go, it would be best to check your levels cause then you'll know how much you need to supplement IF supplements work at all (some people need shots for B12 or infusions for things like Iron (I think there are others that are infusion as well)). Someone can add if I missed any but you'll want to check your B12, Iron, folic acid, vit. A, C, D, E, magnesium, calcium, and potassium. I bet I'm forgetting something. If you start listing those off your doc should know what to do but make sure those are tested at least. They will have to be retested after you begin supplements maybe a couple months later to see if you need more or less. I needed more B12, Iron and vit D. So far blood work shows I don't absorb B12 so I have shots every other month now. I take 650mg or iron now (325mg wasn't enough, waiting on test results to see if I need more or an infusion) and just started vit D drops at 5,000IU (waiting on results to see if I need more or less). I also take a multi Vit. You can take a multi vitamin anytime. I take the prenatal ones cause they have the most folic acid.
 
Thanks Crabby! I'm so excited to do these tests. Only test I know my doc ever did regarding nutrition or food was to see if I was celiac........Feel like this should have been done a long time ago... Did you feel a difference after you started getting B12 injections? I read that you feel more tired if you are deficient. I get drained easy fast but feel like I get enough B12 because of the amount of animal products I eat. I didn't realize you could have a problem absorbing it.
 
Oh yes, you can have a problem absorbing all nutrients. Inflammation, scar tissue, ulcers etc all make absorption difficult to impossible. Plus most of the absorption for B12 happens in the ileum (some is absorbed through the rest of the digestive tract but mainly in the ileum) so if you've had part or all of it removed your chances of being low or deficient are much higher. I've had a resection in that area already. Even being low can give you symptoms of a deficiency.

I feel a little bit better after my shots and can tell when its time for the next one because I start getting really tired before the next shot. There's something else that's making me tired though and I'm trying to figure out what it is exactly. Might be the iron but I still need to see the blood test results first. Will take some time for the Vit D to go up since I started the drops less than a month ago. I'll make an appointment with my GP soon so I can get the results.
 
Yay! It all makes sense now! Since I flared I have been searching the internet trying to find an answer of why I flared and I did!

I had beets but I ate those with a homemade ranch recipe I am experimenting with. Well I had to make Mayonnaise for it and used vegetable oil which has SOYBEAN OIL in the ingredients! Ding ding ding ding, ILLEGAL!

This is great, I was very confused but now I get it. hehe No wonder lol I practically drank the ranch with my beets =D I can't believe I missed that.

This is the article I ran accross that made me check my Vegetable Oil ingredients ;) It's alot about Celiac but talks about the effects of soy and it causing inflammation and leading to Leaky Gut.

http://scdlifestyle.com/2012/04/the-toxic-truth-about-gluten-free-food-and-celiac-disease/
 
Just wanted to update on my flare due to Vegetable (Soybean) Oil 11 days ago. Today I am now completely symptom free. MRE still scheduled for the 10th, looking forward to my results!!!!!

=) I LOVE YOU SCD DIET!!!!!!!! xoxoxoxoxoxox
 
Hi Snoflayk, I'm glad that you figured out what was causing you to have symptoms. I am also a believer in the SCD diet. I'm a nurse and I think that there is some science behind the diet and why it works. However, I think that some people were questioning you because you referred to the beets/oil causing you to "flare". I've only been on the diet for 3 weeks, and I do understand exactly what you mean. The few times that I've accidently ingested something that is SCD illegal, it pretty quickly exacerbated my symptoms. But instead of saying it caused you to flare, maybe it would be more accurate to say something like "exacerbated symptoms". When I think of a Crohn's flare, it is caused by underlying inflammation and will last longer than if you just eat something once or twice that is SCD illegal. However, eating something that is SCD illegal can cause immediate GI symptoms. A good analogy would be to think about a person with a healthy GI tract and if they were on a sucrose-free, grain-free, lactose-free diet. If that person decided to have big slice of buttercream cake, they probably wouldn't be feeling so well and may even have some GI symptoms. Since we don't have a healthy GI tract, our systems are more sensitive and react more quickly and more severely when we eat SCD illegal ingredients even in small doses. I'm not sure that doing so once would be enough to put you into an actual flare, but if you eat SCD illegal ingredients repeatedly, it will definitely put you right back into the cycle and lead to a flare. That is how I think about it anyway. But I suppose it does depend on how long you've been on the diet and how much healing has already taken place in the GI tract. You know your body best and if it felt like a flare, no one can tell you that it wasn't :)

I've been doing a lot of research into the SCD diet and I am so hopeful and optimistic about the great outcomes that I've read about others having. Good luck to you and I hope that your MRE goes well!
 
By the way, all of my blood results (CRP, ESR) were completely normal when I was diagnosed, even though it was confirmed that I was in an active flare by colonoscopy. Blood tests are important, but they don't always tell the full story.
 
I can't eat beets either, no matter what the color, they always seem to start up the bleeding. Also, tomatoes, but I can eat dairy. Go figure!
 

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