Desperately Seeking Diagnosis

[sarcasm89]

I just wanted to put my story out there to see if anyone else has ever experienced these symptoms before being diagnosed.

I'm a 24 year old male who for no apparent reason started vomiting every day for about a month back in the middle of May 2009. I was perfectly healthy before then and rarely got sick. I had bad acid reflux since I was a young teenager, but never bothered to get help for it because it wasn't that debilitating. I just thought it was normal to burp up food.

After seeing a neurologist and an ENT specialist who found nothing wrong with me, I saw a GI doctor. The doctor did an endoscopy and found that I had two small gastric ulcers. He put me on PPI's and they were healed within two months. However, the nausea continued. It lessened in severity, but it still is incredibly problematic. I have really bad stretches where I'm nauseous for 3 or 4 days and then good stretches where the nausea comes and goes. However, there is rarely a day where I don't feel some kind of nausea. I usually don't throw up, but pry average at least three of four vomiting episodes a month. Other symptoms I have include abdominal cramping that usually happens at least once a day and constipation (which is greatly improved by miralax). I haven't been able to pin it to food. It seems when my stomach's working I can eat anything. When it's not, anything bothers it.

I had a stomach emptying test done last summer and that came back normal. I went to Cleveland Clinic this last October and was told that I have achalasia (basically where the muscles in the lower 2/3rds of your esophagus don't work) after an esophageal manometry study and he thought I may have some small intestinal motility problems as well. However, a small bowel follow through showed a normal transit through my small intestine.

I then switched GI doctor's and a blood test showed that I had a high IBD panel suggesting Crohn's disease. My IgA (ASCA) was 68.3 and my IgG (ASCA) was 39.7 above the normal range of below 20. After a colonoscopy showing a perfectly healthy colon, I had a capsule endoscopy which showed minor inflammation of the small intestine. Even though I present with atypical Crohn's disease symptoms, I was put on Prednisone about two weeks ago. So far I don't feel a difference. Other drugs I'm on include domperidone and prilosec. I also have been iron deficient throughout this whole process and I can't get my iron level up despite taking two iron tablets a day.

I currently am 5'10 and way about 150 pounds. Down about 20 pounds from two years ago. I have no trouble maintaining weight when I'm healthy, but lose weight when I get sick because it's impossible to get the adequate calories needed. Other tests that came back negative include the celiac blood tests, food allergies, and two gallbladder tests (an ultrasound and HIDA scan). I am currently on a gluten free diet, but that hasn't seemed to help at all.

I am basically at a loss of what to do next if these steroids don't start working because I really haven't received a diagnosis yet. This has completely turned my life around and I now fear going out into public. Going out to eat is an nightmare. Any suggestions about anything would be greatly appreciated.

 

[ameslouise]

Hey Sarcasm and welcome!

Wow, you've been through a lot already! What is the normal treatment plan for achalasia?

What is your dose of Pred?

It can be difficult to raise your iron levels thru tablets alone. Plus, the iron tabs can be really, really rough on your digestive system. How anemic are you? Have you discussed venofer or other IV iron with your doc?

Are all your other blood levels okay?

Sorry I can't give much guidance, but just wanted to say welcome and I hope you get a firm dx and some relief very soon.

- Amy

 

[sarcasm89]

Hey Sarcasm and welcome!

Wow, you've been through a lot already! What is the normal treatment plan for achalasia?

What is your dose of Pred?

It can be difficult to raise your iron levels thru tablets alone. Plus, the iron tabs can be really, really rough on your digestive system. How anemic are you? Have you discussed venofer or other IV iron with your doc?

Are all your other blood levels okay?

Sorry I can't give much guidance, but just wanted to say welcome and I hope you get a firm dx and some relief very soon.

- Amy

I appreciate your response and my doctor's keep telling me I'm an atypical case. The achalasia isn't giving me any swallowing problems so I won't start taking medicine until it does. The only reason I got the test for achalasia was because the doctor I saw in Cleveland specializes in that area and it was an easy test to prep for. He was very surprised when it came back abnormal. He said that like 1 in 100,000 people have that (lucky me).

My other blood levels are okay and I was on 40 mg of prednisone a day and now have tapered off slowly to 20. The problem is I don't know how I'd feel if I was off the prednisone so I don't know if it's helping. I feel pretty much the same as I did before. Good periods followed by really bad periods. I would assume if the steroids don't work then I probably don't have Crohn's despite the elevated IBD panel.

 

[David30005]

Nope, you can not assume anything with Crohn's. Pred works for some and not for others. I am sue you must have had biopsies taken duing the colonoscopy, I would guess they came back normal also.
You are in a very tough situation. You need a diagnosis but you do not wnat it to be crohn's. Even though it is a pain I would continue to push until this is cleared up. I did not push and it took me 30 years to get a diagnosis. It really was my doc that pushed and I had to take every test there is before I got a Dx.

I wish you luck you do not have crohn's but if you do, you need to know to get on the right meds
Dave

 

[sarcasm89]

Nope, you can not assume anything with Crohn's. Pred works for some and not for others. I am sue you must have had biopsies taken duing the colonoscopy, I would guess they came back normal also.
You are in a very tough situation. You need a diagnosis but you do not wnat it to be crohn's. Even though it is a pain I would continue to push until this is cleared up. I did not push and it took me 30 years to get a diagnosis. It really was my doc that pushed and I had to take every test there is before I got a Dx.

I wish you luck you do not have crohn's but if you do, you need to know to get on the right meds
Dave

Thanks for your response and I'm going to push and keep pushing because I won't get my life back until I figure this out. I'm tired of praying after I eat that it will stay down. I'm in the final year of a 3 year grad program and have struggled mightily this year to try and complete a full year internship. Luckily, I have very understanding supervisors, but I cringe at having to work everyday not knowing how I'm going to feel. I need to figure this out while I'm still covered under my parents insurance (thanks Obama).

As far as the colonoscopy goes, my doctor didn't do any biopsies because he said it had no inflammation and was perfectly healthy. One more reason why I just switched doctors. I have had biopsies done during a few endoscopy's though.

I am going to push for a Antroduodenal Manometry because I have all the symptoms of a motility disorder even though the stomach emptying test came back normal.