Shoul I Cooperate With My Gastroenterologist?

[ashhm]

Hey everyone! My name is Ashley and I live in Pittsburgh, PA. I came across this website a couple of weeks ago and have finally read through all of the posts that interested me. I can't believe what some of you have been through! It seems like you know more than many doctors!

Anyway, as many others, I'm having problems getting a solid answer from my gastroenterologist. Honestly, I never even heard of Celiac Disease until I went to see him...so at least I know that he is aware of it! Regardless, I'd like to get some opinions on this. I'm going out of my mind here and its completely ruining my life! Yet, I still have an optimistic attitude! AMAZING!

Here is a list of my symptoms:

Several soiling accidents (keep a ziploc freezer bag in my car! )

Extremely full after eating one thing, but hungry after eating others.

Extremely bloated, all of the time...visible most of the time

Extremely urgent bowel movements

Fatigue

Foggy head

Anti-social (not like myself at all..I'm an events coordinator for a radio station! Its my job to be social!)

Floating stools

Weight loss

Anemia as a child

Mono at age 17

Neck aches all of the time

Stools have been green, light brown and real dark brown

Never solid stools

Atopic dermatitis as a child

Excema as a child

Allergies to anything and everything as a child

Bruise very easily - touch me too hard and I bruise

Gurgling stomach

Irritable

Blurry eyes - used to be 20/20

Diarrhea all of the time

Here is a little medical history to date: The time that sticks out most in my mind is last December (04), driving on a long road to a ski lodge. I had just eaten Mexican food, probably a fish taco and some chips and salsa. My boyfriend and I were about to go snowboarding and I couldn't even make it to the damn lodge! He had to pull over so I could go to the bathroom behind a tree! I spent the next half hour in the bathroom at the lodge and didn't eat a thing the rest of the day. We'd go snowboarding a lot and I would make sure to go to the bathroom before leaving the lodge and wouldn't eat a thing until we were done. I've had chronic diarrhea since that time. For some reason, I ignored it and just assumed it was from the things I ate. So, I completely changed my diet. I quit eating all fast foods, all fried foods, no soda, no junk food and rarely eat sweets. I made sure to eat a lot of vegetables, fruits and eat only wheat or mixed grain bread. I started lifting weights 3 times a week and jogged on the treadmill when I could. As a result, I lost weight pretty quickly, about 30 pounds since January 05'. And its always been pretty tough for me to lose weight, so it seemed almost surreal. Regardless, the diarrhea continued. I finally couldn't take it anymore and went to my gyno/internal medicine doctor about it. She sent me in for blood tests and immediately said I have IBS. She prescribed Bentyl (20 mg whenever I felt I needed it) and sent me on my way. {I must also add that 2 yrs ago, 03, I went to the ER for extreme pain in my lower left abdomen. They thought it was my appendix...ruled that out, thought I may have Crohn's..ruled that out, then did a CT Scan...the results for that showed some colitis and an enlarged colon. The follow up appointments showed that the doctors had no concern and just to keep any eye on things. Nothing happened again until the incident in Dec. 04 that I mentioned earlier}. So, I took the Bentyl for a couple weeks and it did not help at all! The instructions were to take it one pill before a meal if I thought it would make me sick, or during a meal if I felt like I would be sick..so that's what I did. It would either constipate me to the point where I really felt like I needed to go, but couldn't for days, or it would act as though I didn't even take it.

She asked me to make an appt. with GI, so I went on the referral of my boss (who has a colostimy bag) and made an appt with his doctor. I took every single medical record I could get my hands on, CT Scans, blood test results, etc. to the 1st appt.

He talked with me for awhile, felt my stomach, talked some more. He mentioned that he thinks it could be a slew of things, but that he didn't want to name anything and confuse me. He said it could be celiac disease, wanted to rule out Crohn's, but thinks it is probably just IBS. He scheduled me for a Colonoscopy and wanted it done ASAP. I had some bloodwork for malabsorption and some stool samples done immediately following the appointment.

The Colonoscopy was done that week (Sept 30th). They also did a biopsy of the small intestine. He called me with a follow up and said they didn't find any serious inflammation, but wanted to do an Upper GI. So, the Upper GI was done Oct. 7th (Which was much worse than the Colonoscopy in my opinion) and more bloodwork was done as well.

The GI dr. called me back the following Monday and wanted to discuss what they found. He said they found no serious inflammation and the outlook is fine. He thinks it is "entirely possible that this is IBS" that was triggered by the ER bout in 03. He thinks it should gradually setlle down. While speaking with him on the phone I mentioned that I've been reading a lot about celiac disease and think it could be a real possibility. He said that it could still be possible, but that it is hard to detect and they would have to do an Endoscopy to determine it and he didn't feel there was a need to do another invasive procedure on me at this time. I'm scheduled for a follow up appointment with him on Nov. 4th to determine what the next step is. Until then, I'm taking 2 Fibercon pills (1 in the am, 1 in the pm) and 1 10mg Bentyl tablet. I honestly don't understand what's up with the Fibercn because I think I eat a ton of fiber to begin with. I should also mention that when I brought up the possibility of celiac disease, he said that one of the blood tests he did should have been diagnostic for celiac disease and he thinks its unlikely because of the results. The malabsorption test results came back negative. Whatever that means. I truly don't know.

So, now I'm at the point where the symptoms are still there, all the time. It's completely running my life at this point and making me a miserable person. I know this is an extremely long post, but all of this has been on my mind for awhile now. I don't even know if what I've written makes sense! I don't even know why I'm writing this in here...I guess I just need to know if any of this sounds like celiac disease. If I go to the appt on the 4th and he still says I have IBS, should I go gluten-free on my own? I've thought about it..but don't want the tests to come back negative. I'm usually so bubbly and fun to be around (or so I've been told) and lately I just feel like the rudest person in the world! I've lost connections with friends and family who meant the world to me. I just bought a great house with the love of my life and it doesn't even phase me, when normally I'd be so excited all of the time. I just don't know what to do anymore. I know that I'm not feeling normal, well..this has become my 'normal', but I know it's not right. There is something wrong with me and I don't want to take all of these pills the rest of my life.

Sorry for the long post I hope you guys don't mind.

[fisharefriendsnotfood]

It sounds like Celiac! It's strange that the malabsorption tests were negative, though. Celiacs have malabsorption. BUT, something like three quarters of all Celiacs were previously diagnosed with IBS. You should get the Celiac blood test. Even if it comes back negative, you could try the gluten-free diet and see if you feel any better. If you do, it's probably Celiac, and if you don't, well, you feel better so who cares?

-Jackie

[Lisa]

The symptoms that you listed are classic celiac symptoms. I would request/demand that the GI Dr. to an endoscopy test with a biopsy to rule out celiac.

You can't live your life this misserable. Hope you find a cause and get well soon.

But....I bet your have Celiac Disease

Lisa B.

[ashhm]

By the way, you guys are great! I don't think I posted this 10 minutes ago and I've already had 2 replies. Thanks so much! I actually printed out a couple message board conversations and highlighted things that relate to me and the symptoms I've experienced. I'm planning on taking everything in to the GI appt with me and demanding the tests. Whats another tube gonna hurt, up your bum, down your throat..same difference right?! Might as well poke me with a couple needles while they're at it! haha I guess I'm just worried that I'm looking for something and celiac disease is all I've found that makes sense. I needed some justification.

[fisharefriendsnotfood]

You're welcome! I'm glad I could help. For sure get tested for Celiac.

[Lisa]

By the way, you guys are great! I don't think I posted this 10 minutes ago and I've already had 2 replies. Thanks so much! I actually printed out a couple message board conversations and highlighted things that relate to me and the symptoms I've experienced. I'm planning on taking everything in to the GI appt with me and demanding the tests. Whats another tube gonna hurt, up your bum, down your throat..same difference right?! Might as well poke me with a couple needles while they're at it! haha I guess I'm just worried that I'm looking for something and celiac disease is all I've found that makes sense. I needed some justification.

<{POST_SNAPBACK}>

It took me 10 minutes to read your post

Do not go Gluten Free before any test or you won't be a true read.

Endocopy test is no problem and you won't remember.....Good luck

Lisa B.

[paw]

Ashley, I could almost have written your post. My biggest symptom has been abdominal bloating to the point that I look pregnant, but there are lots of others too like not being able to eat dairy. I have had colonoscopy and endoscopy and biopsies. I did not get results yet. I am not going gluten free until I find out if I need blood work done too. I think it should be done if the biopsy is not completely conclusive.

I see my doctor in about two weeks. I am not going to accept "your digestive tract is irritated and inflamed" -- I got that part. I want to know why and what to do about it!

Hang in there and keep asking questions till you get a yes or no answer. I know that is not always easy with this condition, but I want to know before I go gluten-free. Once I take away the gluten, the blood tests won't show anything.

Feel better. ((hugs))

[Lisa]

Ashley, I could almost have written your post.  My biggest symptom has been abdominal bloating to the point that I look pregnant, but there are lots of others too like not being able to eat dairy.  I have had colonoscopy and endoscopy and biopsies.  I did not get results yet.  I am not going gluten free until I find out if I need blood work done too.  I think it should be done if the biopsy is not completely conclusive. 

I see my doctor in about two weeks.  I am not going to accept "your digestive tract is irritated and inflamed"  -- I got that part.  I want to know why and what to do about it!

Hang in there and keep asking questions till you get a yes or no answer.  I know that is not always easy with this condition, but I want to know before I go gluten-free.  Once I take away the gluten, the blood tests won't show anything.

Feel better.  ((hugs))

<{POST_SNAPBACK}>

For all of you out there, that are not gluten free yet........eat a really BIG piece of chocolate cake for all of us, please (but don't tell us how good it was).

Lisa B.

[Guest Kalynn]

Hi Ashley. I am pre-dx as well, but you sound so much like me. I was on the road to depression not knowing what was wrong with me. Thank God I have the wonderful husband and kids that I do. I just got married in April and my health started going downhill in July (well, it started with bouts of nausa in March). The doctors ran all kinds of tests and still never came up with anything. I too wrote off the constant running to the bathroom for years, then became really sick in July. It was the sudden and unexplained weight loss that led me to start looking for answers on my own. I called both my pcp and my gi and insisted that a full celiac panel be run. I am waiting on the results as we speak.

Don't give up and keep your spirits up. It can be difficult sometimes, my co-workers have been asking for months what's wrong with me because my demeanor has been so different, so I can relate to how you feel. I am excited now because I have been gluten-free since the blood was taken for my test and have noticed some improvement. It gets better.

[Rachel--24]

About the malabsorption. The tests my doctors ran on me came back negative for malabsorption so they figured I couldnt have Celiac plus I didnt have diarreah (which I now know is not a symptom you have to have).

I had lost 25 lbs. and my Enterolab results came back showing high malabsorption. I think like anything else there can be errors made in the lab....I dont know how else my results could be so diferent from 2 different labs.

I did not believe the results which my doctors gave me since I was losing so much weight and my stools were floating with undigested food in them. As far as I know only malabsorption could've caused that.

[VegasCeliacBuckeye]

It is also possible to be gluten intolerant, but not have celiac disease.

It wouldn't hurt to bring that up with the doctor....There are quite a few of us here that are GI but do not have celiac disease...

[ashhm]

Thank all of you for responding to my post. I'll definitely bring up the idea of being gluten intolerant at my next GI appt. I'll keep you posted!