21 replies to this topic

[Karina]

I am new to the board. Have seen a GI guy who ordered blood tests that came back suggestive of Celiac. He is doing an endoscopy at end of month. He feels this will just be confirmation that I have celiac disease, as he says I present with many typical symptoms. I am very thin, have diarrhea many times a month, have abdominal bloating, and STRANGE pains around my umbilicus. I will feel this pain and when I reach down to touch it , it hurts REALLY bad! I feel this pretty much daily, but at different times and on and off. Are these types of pain typical?

Karina

[deweyhughie]

Karina,

Have you mentioned this to your doctor? If not, please call him and tell him! I do not want to scare you, and I am not a doctor, but please mention this to him ASAP.

[Karina]

Yes, I have told my DR. Also, I am a nurse. I am wondering exactly what you are thinking (I know you are not a DR--I am not holding you accountable for guessing)? I have had these symptoms for a few months, and at first he wanted to do a colonoscopy, but after the celiac panel came back now he wants to do this. He is having me test for occult blood in stools. Are you thinking colon cancer? Whatever you would say, I assure you I have probably already thought of it so don't worry about scaring me--this is why I am getting checked out. But now that you have resonded this way I hope you will share what you are thinking.

Thanks,
Karina

[deweyhughie]

Hi Karina,

Thanks for mentioning you are a nurse. It makes it a little easier for me to tell you that my fear (based entirely on my non-medical knowledge!) is that it is small bowel lymphoma. Since you are a nurse, and since you have obviously done some research on this, you probably already know of the significant risk increase of this lymphoma to Celiac patients. I'm a little surprised he has not ordered an upper GI series for you. Maybe you should request it.

Please keep me posted.

[Karina]

Hi,

I failed to mention that when I first got the pain it was around my appendix, and so when I went to my family practice DR> he ordered a CT of my abdomen and pelvis with contrast. That CT came back negative. Now my GI DR. is following up on this celiac thing with an endoscopy, but like I said he originally wanted to do a colonoscopy. His other major concern is/was Crohn's disease. He also told me even if we find out after the endo that I have Celiac he is not certain that it is the cause of all my symptoms. I thinks he means the

[Karina]

whoops! somehow I hit post before I finished. Anyway I was just saying that we (my DR and me) do not know where this paplable pain is coming from in my abdomen--he said it could be the celiac......


Karina

[deweyhughie]

Hi Gillian,

Sorry if I led you astray. It has been awhile since I read the study. Technically, the study found a high incidence of previously undiagnosed Celiac disease in patients with small bowel lymphoma. By extrapolation, I said there is a higher incidence of that lymphoma in Celiac patients. The study was very limited in it's scope and did not go on to determine the incidence of lymphoma in Celiac patients after being on the diet.

If you would like to read the synopsis of the study here is a link:

http://www.cancerpag...cle.asp?id=1320

Following my diagnosis, I had quite a bit of trouble gaining weight. My doctor was very concerned about small bowel lymphoma, so unless he has seen another study I don't know about, me thinks he made the same extrapolation I did!

Hope this clears things up.

[Karina]

Well, this is a long process--getting diagnosed isn't it? Today was a bad day for me, lots of abdominal pain ALL OVER my belly, but the tender points were extremely painful also. I am fighting the urge to get scared here, and was near tears tonight, not because the pain is so unbearable, but because right now I don't know for sure what is causing it. I don't want to have Celiac, but frankly right now, Celiac is less frightening than some of the other things going through my head.
Karina

[Karina]

Steph,

Goodluck with your move! Are you originally from the UK? I have seen some posts here from people in the UK and someone here may be helpful in helping you find a good doc. I am sure these boards will be hearing from me for a little while at least as I find my way around all this. I really hope you find out what is causing your pains--I hope you will post your progress!

Karina

[deweyhughie]

Steph, it's probably better for you in the long run that you are going to the UK. They are much more aware of the disease there than in Japan!

You should have no trouble finding a competent doctor!

Karina, I'm sorry if I have contributed to your fear. I did not mean to upset you - that was why I was originally ambiguous in my post.

Do not worry about being diagnosed with Celiac. Yes, it is overwhelming at first, but you WILL get used to it. Soon it will be second nature. You are absolutely right, there are much worse things than Celiac!

[Meenucat]

I also have pain around my naval, but it's about an inch above the naval and to my right - if I press on the spot then I will be in severe pain for hours - it feels more like an obstruction in my case, but I don't know - I'm baffled by this - I cannot wear pants with a tight waist beause it triggers the pain.

Anyone know why pressure would cause pain in this area for me??? I'm okay as long as nothing touches or presses on it in a certain way...???