Has anyone had trouble diagnosing a digestive disorder, such as Irritable Bowel, Celiac, or Crohn's?Ever since I was little I've had problems with digestion. I originally thought it was lactose-intolerance, and my GP told me to take Lactaid pills. They worked at first, probably psychologically, then stopped working and was still having frequent discomfort.
Now that I'm 19 years old and Still having problems, I found a gastroenterologist. He scheduled me for bloodwork and a colonoscopy. Today he did my scope, but he hasn't seen the blood work yet. He says my colon looks fine and suspects I have Irritable Bowel Syndrome. However when I looked up the symptoms for Celiac disase, I have all the symptoms except for osteoporosis, which my mother has. ( We both have digestive issues, as well my her brother/my uncle) I'm almost positive that's what I have just basing it off that, but my doctor says I've been looking at the internet too much, and that what the internet says is Wrong... Has anyone been in a similar situation?? IS the internet, in fact, a Bad reference, even though Every website has the same symptoms listed??? Help!
Posted by Yvonne
Unfortunately YES the internet shouldnt be used for self diagnosis.WIll I tell you why you dont have coeliac disease>>Because the colonoscopy would have shown damage to the villi of your lower intestine.This hapens in the disease as the villi become flattened and irritated and this is easily seen on a scope.
Its very likely that it IS IBS(i have it too:)welcome))hope youre ok x
Posted by Blowfly
My partners sister has been diagnosed with Chron's on and off by specialist that the medical profession may not be able to diagnose concisely.
Do not try and diagnose yourself, Gather info from the internet but do not be a hypochondriact (not suggesting that you are).
Posted by meeta bhar
I do have IBS, although for my weight loss is still a question mark there. You could be having celiac or ibs. Let the doctor rule out. It's best to ask him the questions. He's the right person to provide you the answers.
Posted by sailor
The internet is a great reference but does not replace doctors. The other problem is that you can see the symptoms of a lot of diseases and think you have them. First year medical students have that problem too.
Anyway, the symptoms for IBS, celiac disease, and Crohns are very similar. If you and your mother have the same type symptoms, you should both get tested for celiac disease. First of all, a colonscopy will not get the scope into the small intestine where the damage is done by celiac disease. You need to have an endoscopy done which gets a scope into the small intestine.
Go to the website www.csaceliacs and see if there is a support group for celiacs near you. They will know what doctors to work with to get diagnosed with or without it. Doctors open to looking for celiac disease are also going to generally be better at differentiating the different conditions. (In the US, it generally takes 8 years to get a correct diagnosis if you have celiac disease since doctors don't look for it and it mimics other problems. It is estimated 1 in 133 people have it)
The other thing to consider after you get tested, is to try a trial gluten free diet for 3 months and see how you feel. This will rule out non-celiac gluten intolerance (think of it as pre-celiac) or a gluten/wheat allergy.
Good luck and hope this helps!!
Posted by roxypink123
I know exactly how you feel! I'm in the same situation and just want it to end. Here's my story.
I have had stomach problems since i was 10 (nausea, stomach pain, and diareha) but it wasn't all the time so i just delt with it. 2 years ago it got a lot worse so i went 2 the doctor and he said i just had gastritis and ibs. well a few months later i started losing weight unintionaly but gained it back due 2 medication side effects.
A year ago now things got worse. in summer i started losing weight rapidly it wasn't a concern until i got below 110 (at 5'8"). All the doctors did is accusing me of doing it intentionaly and diagnosed me with an eating disorder (major misdiagnosis) at this point the pain was so bad (at least i thought then) especially after i ate. i had been having night fevers so they thought it was cancer. they ran tons of tests on me and they were all negative.
My pediatrition finally refered me 2 a pediatric gastronologist (at this time a little over 100). At first during the appointment he just diagnosed me with ibs (having diareha up to 20 times a day for a very long time). He did decide 2 run some blood and stool tests just 2 make sure. Well my regular doc told me all the tests turned out fine. It got so bad i had 2 go 2 the ER curled up in extreme pain they gave me pain meds and fluids and guess what they diagnosed me with? gastritis, ibs, and anorexia.
Well almost 2 months later we got a phone call...from the gi office saying they scheduled a endoscopy/colonoscopy that i needed immediatly. They didn't say why so my dad called my gi doc and he said that i had the antibodies for crohn's. We went through with the tests and when i woke up my doctor came by with this big smile on his face and said "i finally know whats wrong with u. u have crohn's disease. i will send out the biopsies just 2 make sure." he started me on a high dose of prednisone immediatly. i felt happy 2 now what was wrong but very scared of what was 2 come.
A few weeks later the biopsy results came back inconclusive. soon after that phone call i got below 90lbs and was sent 2 the hospital. the first few days were great (nice nurses, privacy, and visitors). the not so pleasent experience was that i had 2 have an ng tube (horrible!) they did a ct scan as the final test 2 decide if i had crohn's...the next day i knew something was up. usually just the gi doc on call comes in that morning one of the peds docs on call came in 2. then came the worst day of my life!!!!!! they said there was nothing medically wrong with me!!!!!! all i had was anorexia!!!!!!!! i am not stupid i would never starve myself!!!! then the lonliest part of my life began. they said the only way 2 get out of the hospital was 2 go 2 an intensive outpatient eating disorder program. after the horrible misdiagnosis i got stuck in this horrible eating disorder protocal (ask me about it if u really want 2 know.) they started weaning me off of prednisone and my pain got so much worse! when the director of the program came 2 visit the nurses got concerned since i had a high fever and was severly tacnacardic...it just got worse from there. 5 days total at hospital.
I went 2 the program (will give more details if u want). lets just put it this way they were cruel, i didn't fit in, and were constantly trying 2 acuse me of things i never have done. i lost weight in their over 4,000 calorie high fat diet well it all came out in my stools (gross! =P) got down 2 85lbs and was on my death bed i went 2 the hospital again. another ng tube. another bad experience. 2 weeks. my gi doc finally decided 2 face me again and ran some more tests (upper gi yuck! 2 make sure the pill cam wouldn't get stuck. scary experience when my sweat test was just about positive 4 cystic fibrosis but luckily they ran a dna test andd i will never have it) they made me go on an all high fat formula diet that constipated me and guess what made me lose most of the weight i had gained in the hospital.
At this point we decided 2 go 2 another gi specialist. he thought it was unlikely i had crohn's on my first visit. they thought the only way 2 keep me alive was 2 put an ng tube in me until i reach 110. and guess what a few day hospital visit turned into 3 weeks. they thought my stomach pain was just a nerve problem so they put me on neurontin which never worked. at this point my pain was getting so bad i have been curled up in a ball most of the day. the most medical attention i got was when i had a severe allergic reaction 2 reglan. after 2 weeks of suffering in severe pain they finally gave me a shot of morphine and even though it only took my pain level from a 10 to a 5 it was tthe best i felt in a long time. when it wore off they said they couldn't give it 2 me reguarlly so they gave my vicodin (which made me so miserably nauseous). then they told me just 2 take ibprofin (isn't that supposed 2 be bad 4 crohn's disease???) it made my pain even worse.
2 months ago I started b
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