Is it or is it not Crohn's?

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Mar 14, 2011
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I am in the process of trying to figure out if I have Crohn's or not... I am 43 and was diagnosed with Fibromyalgia, CFS, Asthma and have been B12 deficient for about 10 yrs now (i'm in the "low" normal range) Over the years, I've been having bouts of pain and diarrea which i just thought it was related to a food allergy, for some odd reason, each time i get tested for foods, i seem to be allergic to the foods i have been eating more of. I do however have a wheat allergy which i've had for years but ignored it, i was tested for Celiac and Lactose Intolerance (ice cream seems to make me have what i call a bowel episode)and both came back negative. Also negative result with Pernicious Anemia too. finally saw a Gastroenteroligist he mentioned that B12 deficiency can be caused from Crohns and will need to have some tests done.

I had a colonoscopy as well as the scope down the throat. the stomach is fine, but they found two ulcers in my terminal illeum as well as some inflamation, they biopsied those tumors and luckily aren't cancerous. my Gastroenterologyst isn't fully convinced I have Crohns even though i have alot of the symptoms. symptoms being, dramatic weight loss, loss of appetite, mild to severe stomach pains, cramping, churning, feels like everything inside is swelling (I can literally feel it as it happens)and then my mouth starts to water., followed by bowel movements which start off solid, then turn soft then liquid and then it can sometimes continue all night and other times, i go maybe 3 times and am completly empty but then i dont have a bowel movement for 4 days afterwards.

I also have alot of other symptoms that no one seems to have such as hard stools all the time (except when i went on a gluten free diet), swelling feeling after i have bowel movement in my back, and lots of pressure in my lower abdomen, itchiness, dry eyes, tiny hives, tiredness, and severe cramping in my soles of my feet which are extremely painful and painful sporatic shoots of pain that goes where ever and can last from 2 to 30 seconds then turns to an ache (like a tooth ache) then dissapears. my bowel habits are good otherwise, i am regular even though they are hard.

I am at a loss and was hoping to get some information off others who may know what is wrong with me or know someone with similar symptoms.... My gastroenteroligys has ordered a ultra sound on my small intestine only, as well as an internal ultrasound too. he said if this test comes back normal then he will label me and treat me as a Crohns patient. . . ?! thank you in advance for any info anyone can share with me
 
Hi Suess
Welcome to the forum
I am confused by your last statement re "he said if this test comes back normal then he will label me and treat me as a Crohns patient. . . ?!" I will assume you meant "abnormal"
Sounds to me like you have a lot of the symptoms. When is your test?

Good luck and hang in! There are a lot of good people here who are very helpful and welcoming. If you have it or not; sounds to me like you are very uncomfortable... sometimes it takes a long time to diagnose...

take care and let us know what is happening with you.
Cheers,
Wendy
 
Alot of us waited years for a diagnosis for Crohns. Hang in there, sounds like you are at least getting seen by a GI, so progress should be made soon.

Welcome to the forum!
Misty
 
hey Seuss - is there 2 of the same posts here?.....lol.. I just read the same one knowing I commented on it and when I read the new replies - my response was missing. Now I read this one and lo and behold... this is the one I responded to. Just a little confusing is all :D Maybe there is a way for a moderator to combine the two??? I don't know....
 
I wanted to add that my guy friend has gluten intolerance/Celiac disease and tests negative for it regularly — it's very, very common to test negative, unfortunately. However, if a gluten free, lactose free diet does nothing for you, sounds like other venues need to be explored.

I get the impression inflammation in the ileum is pretty common with a few different diseases. I'm not sure why it gets tackled so often, but that seems to be the case. It would certainly explain your B12 deficiency. Keep in mind there are other forms of IBD aside from Crohn's disease, but no matter what, the treatment tends to be similar.

Best of luck in your search.
 
Hi Suess and welcome to the forum. :)

I'm afraid I can't add anything new to what's been already said. I think your symptoms are down to inflammation in your TI and you need some form of treatment whether they label you with CD or not.

Best of luck. Take care.
 
Hi Wendy,
Yes, my Gastroenterologist said that if the test (ultrasound) comes back "normal" (meaning the rest of my small intestine) his words exactly... then he'll label and treat me as Crohns. I think because i have alot of the symptoms and the lack of B12 absorbtion and the two ulcers (that;s why he's not fully convinced because there were only two Ulcers) so my question is, could this be the start of Crohns? could it be something else where Ulcers can be found in the TI? I have tried to do some research online but it always comes up as "Crohns"
I did find that Gluten free diet helps my Fibromyalgia and I don't seem to get those sporatic pains that come and go and my bowel habit's are more of a normal consistancy. But I dont want to go gluten free until i have this last ultrasound done (in June) incase it shows something.
and yes, hahaha, i seemed to have posted twice, not sure how it happened but i deleted one of them.
thanks for all your replies, it sure feels good to know that there are others out there with similar symptoms - none of my friends are.
 
Hi Sorbys,
thank you for your response, I too have heard that a Celiac test can be negative but you can be sensitive to gluten and not actually be Celiac and I do notice that if I stay away from breads and pasta's, then i feel much better.
I also have a quick question for you, you mentioned that there are a few diseases with inflammation in the illeum, do you know what they are called so i can look them up?
 
Hi Sorbys,
thank you for your response, I too have heard that a Celiac test can be negative but you can be sensitive to gluten and not actually be Celiac and I do notice that if I stay away from breads and pasta's, then i feel much better.
I also have a quick question for you, you mentioned that there are a few diseases with inflammation in the illeum, do you know what they are called so i can look them up?

Almost anything! Viral infections, bacteria, fungus (candida got mentioned), and there's research that even IBS can be centered around the ileum now, so it seems to be a "hot spot" for activity, for whatever reason.

That you feel better off of gluten seems pretty tell-tale to me. Celiac disease is autoimmune and can destroy the intestines, and not surprisingly can effect the ileum. You might do well to get biopsied for it (I assume you haven't been).
 
I had a scope a few months ago to test for Celiac and to find out if I had intrinsic factor for the absorbtion of B12. the scope came back normal...
I will go back onto a gluten free diet after I have the Ultrasound in June. I know it's a long ways away but I certainly don't want to mess up the test. I also read that if your not Celiac then you shouldn't go on a gluten free diet, it can mess with your system but honestly, I look at it as - If a person feels better without Gluten in their diet then obviously something is wrong . . isn't that what all doctors say to do? listen to your body?
thanks for the info I have a sneaking suspicion that I do have Crohns based on symptoms, but it dosen't hurt to look into other possibilites that you mentioned.
 
I couldnt do without bread when I'm flaring! I just hope they can you a diagnosis soon, so you know what to do. After so many many years...I finally got confirmation I had crohn's, but it took surgery and almost dying to get it! Patience my redundant ass!
Misty
pardon the pun
 
hahaha Misty, thanks and i hope your feeling good now. I dont understand why it takes so long for a diagnosis?? I have a friend who had her gall bladder out thinking that was the problem, only to find years later it is Crohns.
 
It's because Dr's seem to be afraid to pull their finger out sometimes and give a definite answer it seems to me! Mostly it's the microbiologists that say...'we think it shows the markers 95%'....and they hem and haw!
Grrrrrrr. It's because they dont like to be wrong I guess. Madening.
Misty
 

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