My Frustrating Journey

[nohelpfromdr's]

Hello everyone. Just joined. Sick and tired of being sick and tired. I'd like to share my experience in the hope that it will help someone else.

Probably the last 10 yrs have been plagued with diarrhea, bloody diarrhea, terrible bloating ( I'm athletic and do physical work ), back pain, rashes, lethargy, lousy appetite, heartburn, thrashing in my sleep, awful muscle cramps, pain in gut, nausea.... Doctors insisted IBS after 2 colonoscopy's, and all the other tests...New doctor just wants to stick his finger up me arse and prescribe painkillers in order to get me out of his hair...Doc's said " bowel feels no pain", then why all the colonoscopy's and bowel inspection? And why do I feel pain/ why blood in stool?

I decided to just eliminate gluten after reading up on symptoms..Ha!. Not so easy as it's in "rice" crispie's. It's in tomato soup. Difficult to do. But I've lost 4 pounds in 11 days. 2 belt sizes. No bloating. Got energy. Poop's are solid and sink.(ya!)No blood. Sleep better. Haven't had a charlie horse. Rash on elbow's, back of arm's and back gone ( wouldn't the dark itchy rash on lower back tip doc off to celiac?).

But I haven't been "diagnosed" with celiac's. Am I gonna have to eat gluten and get sick/pain in order to prove to doc what's up?...Very,very disappointed with the efforts the last 4-5 doc's tried. It's like they don't care, just want the traffic in order to get rich. They won't spend time with patient, want you in and out in 5 min, then bill government....I am thankful for this forum as I've already learned a lot. Thanks a million.

[Twinklestars]

Hello I'm new here too. I'm sorry you've been so sick, I definitely know the feeling. I haven't been diagnosed yet either, but from what I've read you will have to ingest gluten again for a while for the blood tests to show a positive reading. Someone correct me if that's wrong?

It's awful that you've had a run around with doctors. Clearly many of them just don't get it. I hope you get the answers you're after.

[mushroom]

Unfortunately, most doctors do not recognize a celiac person/patient. Celiacs present in ways they are not taught about in medical school. I wonder how many hours they hear about IBS versus how many about celiac, because they sure trot out the IBS at the drop of a hat. At least yours was creative enough to consider colitis or Crohn's disease, perhaps?

It is also unfortunately true that if you want a diagnosis of celiac you do have to continue eating that nasty gluten. In the absence of gluten healing starts to take place in the gut and the antibodies start to retreat from the blood, so that both the blood tests and the endoscopy with biopsy can come up negative in a really short time frame. Pity your doctor didn't do an endoscopy while he was doing the colonoscopy - he might have found the real cause of your problems.

It certainly does sound like gluten is your problem - whether fullblown celiac or (undiagnosable by testing) gluten intolerance. So regardless of what kind of further testing (if any) you decide to pursue, when all testing is done you should give the gluten free diet a good trial.

[pain*in*my*gut]

  On 9/11/2011 at 9:54 PM, nohelpfromdr said:

Hello everyone. Just joined. Sick and tired of being sick and tired. I'd like to share my experience in the hope that it will help someone else.

Probably the last 10 yrs have been plagued with diarrhea, bloody diarrhea, terrible bloating ( I'm athletic and do physical work ), back pain, rashes, lethargy, lousy appetite, heartburn, thrashing in my sleep, awful muscle cramps, pain in gut, nausea.... Doctors insisted IBS after 2 colonoscopy's, and all the other tests...New doctor just wants to stick his finger up me arse and prescribe painkillers in order to get me out of his hair...Doc's said " bowel feels no pain", then why all the colonoscopy's and bowel inspection? And why do I feel pain/ why blood in stool?

I decided to just eliminate gluten after reading up on symptoms..Ha!. Not so easy as it's in "rice" crispie's. It's in tomato soup. Difficult to do. But I've lost 4 pounds in 11 days. 2 belt sizes. No bloating. Got energy. Poop's are solid and sink.(ya!)No blood. Sleep better. Haven't had a charlie horse. Rash on elbow's, back of arm's and back gone ( wouldn't the dark itchy rash on lower back tip doc off to celiac?).

But I haven't been "diagnosed" with celiac's. Am I gonna have to eat gluten and get sick/pain in order to prove to doc what's up?...Very,very disappointed with the efforts the last 4-5 doc's tried. It's like they don't care, just want the traffic in order to get rich. They won't spend time with patient, want you in and out in 5 min, then bill government....I am thankful for this forum as I've already learned a lot. Thanks a million.

I am so sorry you have been sick for so long. I feel the same way about most docs these days. It's very dissapointing when you are sick to be dismissed or given a garbage can diagnosis.

Have you only been gluten free for 11 days? You must be eating gluten before the test, but if it's only been 11 days, you might be able to start eating it again for a few weeks and then get tested (as opposed to doing a full gluten challenge, which is 3-4 months). I was gluten free for 2 weeks when my GI doc ordered me back on gluten for only a month before my biopsy.

Or you could just forget about an "official" dx since you have had such a positive response to the diet. It's up to you. Luckily you don't need a prescription to go gluten free!

[eatmeat4good]

Congratulations for finding this site...it saved me after a bunch of long years sick. No Dr. ever listened past the first 10 symptoms, it's like they just can't handle more than one symptom...and the billing of course.

It sounds like you have your answer.

Do you need the tests?

After all you have been through, I think I would just eat gluten free and tell the Dr. to stick his finger in his Hot Cross Buns!

[AVR1962]

Your story is a familiar one. I too was looking for answers, docs sent me away saying it was this, that and the other. I finally got so sick I was in ER, this was 7 months ago. I have had so many blood tests, CT scans, MRI, etc. Docs did test me for celiac after I was on a gluten-free diet. Tried to go back on to repeat the test and got sick all over again. My balance, speach and memory are very affected by any amount of gluten. So I had to make a decision.....go thru 2 months of burning stomach and all the other issues that come along with being on glutens to get possibly uncertain test results 2-3 months down the road OR try and heal now with what is working for me. A bone scan revealed bone loss, my symtoms are a good indicator of malabsorbtion, I am hoping the MRI will show my nueropathy problems, and I am having a gentic marker test done. When all of this is completed I hope docs will be able to put this together. I have been told that the only way that docs will diagnose Celiac is with a positive scope.

I may never have the diagnosis and without it, docs can't say they know what they are treating. I think we all have to do what is best for us. I can see where an actual diagnosis would be beneficial for those who can make it to thru the testing. There are other problems associated with the symptoms of Celiac and I can understand why docs want to be sure as this goes in your records as what to treat you for. The continual testing and being passed by is very very frustrating. Being sick every day for years is awfully hard. Good thing is you found what works and from here you can put one foot in front of the other and get your health back! Best to you!

[nohelpfromdr's]

Thank you all for your thoughtful, helpful comments....I should mention dr's put me on meds for helicobacter pylori and stomach seemed a little better. But developed hives. Then they put me on Tecta which really helps. Not sure if Tecta is a medication commonly taken by Celiacs', but some might ask their dr about it.

I share a lot of P.I.M.G.'s symptoms. Was really worried about all the stuff that was/is happening like tingling hands, dizziness, lower back pain. E4G is right. When I tried to list all the symptoms, dr really didn't want to hear it. He would try to infer I was making a mountain out of a mole hill- "all tests came back negative".

[AVR1962]

  On 9/13/2011 at 3:29 AM, nohelpfromdr said:

Thank you all for your thoughtful, helpful comments....I should mention dr's put me on meds for helicobacter pylori and stomach seemed a little better. But developed hives. Then they put me on Tecta which really helps. Not sure if Tecta is a medication commonly taken by Celiacs', but some might ask their dr about it.

I share a lot of P.I.M.G.'s symptoms. Was really worried about all the stuff that was/is happening like tingling hands, dizziness, lower back pain. E4G is right. When I tried to list all the symptoms, dr really didn't want to hear it. He would try to infer I was making a mountain out of a mole hill- "all tests came back negative".

You're not alone. I tried to tell my doc all that had happened and he was only interested in "what was causing me issues now." Basically, let's treat the symptoms without finding the source of the problem. I have said many times if they can't prescribe something for it, they ar lost. I hate to sound like i have little faith but it is amazing now that I look back how little help I have received from docs with all of this. I have pretty much researched it all thru books and the Internet, taking advise from those who are dealing with the same, and then experimenting to see what works. Unfortunately something could be being missed that is important to see and we don't even realize it because we aren't getting the help we need.

[nohelpfromdr's]

I hear ya man.