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gj64

Joined
Dec 22, 2012
Messages
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Hi everybody,

I was diagnosed just a few days ago with CD. It 1st started 17 years ago but who would have thought that CD existed. A few months ago the real bad experience started; stomach cramps and diarrhoea. Now I am on a very strict diet and taking 3 kinds of medecine:-
- Imuran 1 x 3
- Pentasa 2gms x 2
- Cortancyl 20mg x 2
Luckily I feel much better now and waiting to have a blood test within a few days.

During all these diarrhoetic years, I have noticed that the following were unsuitable for me:- whole wheat, yeast and lettuce
-wine (red) only if it contains yeast to produce its alcohol
-beer same as above
-anything coming from whole wheat (bread, pizza, croissant etc..)
-lettuce (the worse, feel running to the toilet b4 even swallowing it)

Most of the sites I have been reading have noticed that 'whole wheat' is the major cause of our problem.
 
Welcome to the forum, gj64!

I'm glad you're feeling better! May I ask what sort of diet you follow (or do you just avoid the foods you listed)?
 
I wanted to say welcome too. You are ahead of the game in some ways having found specific foods that bother you. I have never found any consistent pattern myself...it seems that I can eat anything up to some threshold amount. After that I get stomach cramps, but I can't always tell where that threshold amount is. And, becaus ei don't have pain consistently, I am very bad at being strict about my diet.

Between the medications and your diet changes are you totally symptom free? I hope so!
 
Hello and welcome! Like said above, its great that you already know what foods upset you! I was wondering if you have been tested for Celiac's disease? It sounds like gluten upsets your stomach. As for the lettuce, I don't think anyone with Crohn's can handle it. Like Sarahbear I was wondering what kind of diet you follow. I hope we here from, you soon!!
 
Hi again,

Thank you for your welcome msg
My doc has put me on a very strict diet as stomach and intestines were all affected, not symptom free at all. 1st week have to stick to meat, chicken and mashed potatoes only (can be grilled or fried) and absolutely nothing else. He said every week he will increase the food variety bit by bit. Of course the foods i listed will keep far away from. it's amazing how each one of us is reacted to different foods..
On the other hand i would really like to know more from your experiences on how do u identify which food is good or not good for you. this is very important so as to warn others and be more alert on what we consume.
For instance 17 years ago i just made a blood test and the result came out that i should not eat from anything deriving from the skin of the 'whole wheat' food products. I didnt take it for serious but now that i think of, it was quite an accurate test as pizzas and croissants used to make my stomach pain unbearable. but the funny thing is that nowadays i dont feel anything and can just almost eat anything (except raw vegetables: lettuce, parsley).
So anybody who can share anything i would really appreciate it.
Sorry for the length of the msg but hope by time things will enter into order.
 
The elimination diet should really help you figure out what you can and can't eat. For me I would notice a stomach ache while eating and then rushing to the bathroom soon after , so for the most part I could tell what made me sick. But during bad flares anything and everything made me sick so it was hard to eliminate somethings. Check out the food and diet forum, you can get an idea of the things that upset the typical Crohn's diet. It truly is unfortunate that we have todo trial and error and fund out the hard way what we can't eat. It would be nice if Crohn's was more direct and straight forward on the cause, symptoms and treatment!
 
Hi Afidz,

2mrw the doc will confirm 100% if I have CD or any other.
During the colonoscopy the doctor removed many samples from the intestines and the stomach, and told me that it was simply to make sure what exactly is CD or other, but his opinion was that it is pointing to be CD.
I went to read about Celiac and wow.it symptoms seem to tag along with me.
I beleive that it is easier to coop with Celiac rather than CD.
I will keep you posted. As for the kind of diet - well if the result is Celiac, then it is obvious that there are specific food products not to be consumed. If it turns out that it is CD then + or - I already know that mainly 'yeast' and (most probably as well though not sure yet) 'whole wheat' are the main threats.
But its strange and I wonder, 27 years ago when i did a blood test in UAE (blood was sent to a UK lab at that time) in order to identify what food was not good for you. I wonder if this can be done and help with the CD bearers, and I beleive it should give us a clear indication on the food tolerance of what we can and cannot eat.
Thank you for your real care and support - I really appreciate it
 
Sarahbear, you have been tested for celiacs right? Is it just a blood test? I know you can have both. I wonder if your intolerance for yeast is really intolerance for gluten, its definitely something to talk to your doctor about.
 
The blood test for Celiac's is the same as the blood test for IBD (Prometheus tests). It's not as reliable as biopsies, but having them both done is usually a good idea. As far as I can tell, false negatives are somewhat common (depending on how active the disease is at the time), but false positives don't seem to be.

gj64, keep in mind you have to eat gluten regularly for about a month before being tested for Celiac's, or you could get a false negative. Has your doctor mentioned Celiac's as a possibility? It can have very similar symptoms to CD, so either is possible.
 
so sorry to hear that youve been unfortunate enough to end up here with us lot lol. im afraid its time to face the truth. you have a long road ahead of you, especially with diet as noone can tell you EVERYTHING that will affect you as were all different. like AFIDZ i used the elimination diet. took me a long time (year or so) but i now dont have a problem with at all. my advise is this: your meds and quantity will vary greatly until they get it right so expect small episodes from time to time until they do. dont kid yourself, your ill and its not going to get better straight away, atleast then your prepared for it. take advise and follow instructions to the letter. NEVER over indulge at parties and gatherings to fit in, it will only make you ill. get to know your bodies limits and dont push them. arm yourself, read every article you can find and collect every bit of information you can about your illness. its time consuming but believe me in the long run itll be worth it. Above all, accept it. this is now apart of your life, dont be embarrassed by it. hey, i even use mine nowadays to get out of shit i dont want to do lol. good luck and believe me, in time, it does get better.
 
ok
here are the scenarios in my case:-
1- biopsy result came
2- professional opinion of the doctor

as a biopsy result the doctor has told me that he has sent more than 15 samples for biopsy. out of these 15 pieces the lab didnt reach to a conclusion saying that yes it is CN or UC. the report simply says an internal infection

According to my doctor's professional opinion he said it might be a very mild CN or something else

can anyone advise me what to do next
 
Hi - have been away for sometime
I have consulted a nother doctor for a second opinion.
He prescribed 2 anti biotics for 15 days
Flagyl and Ciprobay
Additionally he requested an additional blood and stool test
Both tests results were negative
The doctor confirmed that I dont have any CD or UC
additionally the antibiotics really cured me
It seems that I had a very strong bacteria for a long time since the doctor said that if the diarrhoea has stopped with antibiotics (and blood and stool result proved negative) then 100% i dont have any Crohn or UC.

I wonder if it has happened the same to anybody else the same case that i had and their comments plz.
 
In all honesty, I am a little concerned that the second doctor decided you dont have CD or UC based on blood work. You can't diagnose based on blood work, so it would seem to me that it would be the same in reverse. Flagyl and Cipro are used quite often amoung IBD sufferers, I'm glad that you feel better. Out of curiosity, how were you diagnosed with CD from the first doctor?
I am going to tag Crabby for additional support, I don't want to say something that is inaccurate. I am very happy to hear you are doing better though!!
 
I dunno I'd want a 3rd opinion or you could wait until your symptoms returned if you wanted to go that route. Thing is that you said it all started 17 years ago then just a few months ago things got really bad. Generally when diagnosing Crohn's more tests are done then just scopes, blood work and stool tests. While biopsies are generally needed for diagnosis, yours thus far have been inconclusive so it may be too soon to say that you do or don't have it. People with Crohn's aren't immune to infections so it may very well be that you had an infection on top of another illness that you've noticed for the last 17 years.
 
Welcome,

I agree with the above posts. CD is very hard to diagnose. No one test is 100% reliable in diagnosing. Keep a recording more problems.

I am not sure that an infection could have been bothered by the foods you have listed.

What did your doctor have to say about that?


Lauren
 

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