I'm a 39yr old female that has been suffering from symptoms consistant with either Crohn's or IBD for the last 14yrs, but most active the last 2yrs. I have seen multiple doctor's for the last several years that really don't care about what is really wrong with me. They rather just tell me that they believe I only have IBS & give me maintenance meds that don't help with my symptoms at all. I've also been diagnosed as having celiac disease, but after being on the gluten-free diet for 6 + months with no improvement I didn't believe that diagnosis either. Then they go back to the IBS diagnosis & blame everything on stress. I tried all the meds they asked of me to help manage stress & again, no improvement was noticed. I have decided to take matters in my own hands to find out what to do to better my quality of life via internet research and forums like this one I am joining at this time.
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Michelle's Story
- Thread starter msgoffney
- Start date
xJillx
Your Story Forum Monitor
Welcome Michelle! I am sorry your doctors are giving you the brush off. Unfortunately, many people are misdiagnosed with IBS at first. Are you seeking another opinion? Sometimes people need to go through several doctors before finding the right one.
What are your symptoms? What tests have you had done and what were the results?
What are your symptoms? What tests have you had done and what were the results?
Thanks for the warm welcome Joan & Jill.
@ Jill: I tried putting a signature together with the tests & results, but I was advised by the system that I couldn't have over 1000 characters, so I kept shortening it until I was under 1000 characters & then I was advised by the system that I couldn't have over 500 characters, so I have given up on it for tonight. Instead I copied it & will be pasting at the end of this message for you to review.
Symptoms have varied for some time now, but worsened in 2009. About 14 yrs ago I had bloody diarrhea stools multiple times a day along with abdominal pain. In the beginning of 2009 I started experiencing bloating/stomach distension with abdominal pain along with constipation on & off. Then in Nov. 2009 I had a terrible episode of bloating/stomach distension with abdominal pain without being able to have a normal bowel movement or any bowel movement for weeks. It got to the point I couldn't even eat, since I felt like I was full all the way to my esophagus/throat area. My GP put me on a liquid only diet & had me try MiraLax & enema's to try to get things moving again, but unfortunately that didn't work either. Eventually I was referred to a GI for a consultation & he rushed me in within 2 days for an Endoscopy & Colonoscopy with the Go Lightly Prep. I've also experienced other symptoms starting @ June of 2009, like nausea & vomitting, fatigue, heat intolerance, mouth & nose ulcers, skin rashes, joint pains, compromised immune system (re-occuring ear infection, pneumonia when only around a common cold/flu & strep throat when no one else around me had it) & chest pains similiar to costochondritis.
Michelle
_____________________________________________
Tests Done:
14 yrs ago - Flexible Sigmoidoscopy & Stool Samples: All Negative
Nov 2009 - Endoscopy & Colonoscopy: Gastric Ulcers, Erosive Gastritis & Small Intestine inflammation suggesting Celiac Disease
Jan 2010 - Celiac Blood Panel: Negative
Feb 2010 - Lupus, Rheumatoid Arthritis & Thyroid Blood Panels: Negative, Vitamin & Iron Blood Panels: Vitamin D deficient & Normal Iron levels
March 2010 - EKG & Heart Halter Test: Both Normal
Apr 2010 - Abdominal CT Scan w/Iodine: Umbilical Hernia, Repeat Endoscopy & Colonoscopy: Small Intestine inflammation suggesting Celiac Disease
Dec 2010 - Lupus & Thyroid Blood Panels: Negative, Vitamin & Iron Blood Panels: Vitamin D within normal range (still on the supplements though), Iron was below normal range (but not anemic per GP) & Folic Acid was on the low side of average
March 2011 - Abdominal Ultrasound: Abnormal Gallbladder (Stones & Polyps)
July 2011 - CT Scan (Abdominal & Pelvic): Pending Results
@ Jill: I tried putting a signature together with the tests & results, but I was advised by the system that I couldn't have over 1000 characters, so I kept shortening it until I was under 1000 characters & then I was advised by the system that I couldn't have over 500 characters, so I have given up on it for tonight. Instead I copied it & will be pasting at the end of this message for you to review.
Symptoms have varied for some time now, but worsened in 2009. About 14 yrs ago I had bloody diarrhea stools multiple times a day along with abdominal pain. In the beginning of 2009 I started experiencing bloating/stomach distension with abdominal pain along with constipation on & off. Then in Nov. 2009 I had a terrible episode of bloating/stomach distension with abdominal pain without being able to have a normal bowel movement or any bowel movement for weeks. It got to the point I couldn't even eat, since I felt like I was full all the way to my esophagus/throat area. My GP put me on a liquid only diet & had me try MiraLax & enema's to try to get things moving again, but unfortunately that didn't work either. Eventually I was referred to a GI for a consultation & he rushed me in within 2 days for an Endoscopy & Colonoscopy with the Go Lightly Prep. I've also experienced other symptoms starting @ June of 2009, like nausea & vomitting, fatigue, heat intolerance, mouth & nose ulcers, skin rashes, joint pains, compromised immune system (re-occuring ear infection, pneumonia when only around a common cold/flu & strep throat when no one else around me had it) & chest pains similiar to costochondritis.
Michelle
_____________________________________________
Tests Done:
14 yrs ago - Flexible Sigmoidoscopy & Stool Samples: All Negative
Nov 2009 - Endoscopy & Colonoscopy: Gastric Ulcers, Erosive Gastritis & Small Intestine inflammation suggesting Celiac Disease
Jan 2010 - Celiac Blood Panel: Negative
Feb 2010 - Lupus, Rheumatoid Arthritis & Thyroid Blood Panels: Negative, Vitamin & Iron Blood Panels: Vitamin D deficient & Normal Iron levels
March 2010 - EKG & Heart Halter Test: Both Normal
Apr 2010 - Abdominal CT Scan w/Iodine: Umbilical Hernia, Repeat Endoscopy & Colonoscopy: Small Intestine inflammation suggesting Celiac Disease
Dec 2010 - Lupus & Thyroid Blood Panels: Negative, Vitamin & Iron Blood Panels: Vitamin D within normal range (still on the supplements though), Iron was below normal range (but not anemic per GP) & Folic Acid was on the low side of average
March 2011 - Abdominal Ultrasound: Abnormal Gallbladder (Stones & Polyps)
July 2011 - CT Scan (Abdominal & Pelvic): Pending Results
Welcome Michelle! In case you haven't found it yet, the undiagnosed club is here...http://www.crohnsforum.com/forumdisplay.php?f=75
You'll find much commiseration there! Unfortunately, it's probably the most used club on this forum
Hope you get answers soon! Good luck!
You'll find much commiseration there! Unfortunately, it's probably the most used club on this forum
Hope you get answers soon! Good luck!
Michelle--Good luck! I was an easy case to diagnose, but I watched my mom suffer for over 10 years and go to multiple docs who mostly referred her to psychologists for anxiety and depression. She finally got her Chronic Fatigue dx, and started getting help. Waiting so long for a dx is terrible. I believe she wouldn't be as bad off, and neither would I, if everything was caught earlier. And when doctors tell me there's nothing wrong when there so clearly is.....I hope you get a dx so you can start getting some real help!
xJillx
Your Story Forum Monitor
Boy, Michelle, you have certainly been through enough. And you've seen 7 doctors - my goodness! Granted, I can't say I am shocked. It isn't easy to find a good doctor...
From looking over all of your tests, it certainly looks like Celiac Disease is on the table. Are you following a gluten free diet? If so, did you see an improvement?
From looking over all of your tests, it certainly looks like Celiac Disease is on the table. Are you following a gluten free diet? If so, did you see an improvement?
@xJillx: I did do the gluten-free diet religiously for over 6 months & there was no improvement. Instead I started a food diary that helped me discover certain foods that trigger symptoms (pork, corn, dairy & sucralose). Sorry for the delayed response, I've lost touch with this forum for too long & I'm back finally.
Michelle
_____________________________________________
Tests Done:
14 yrs ago - Flexible Sigmoidoscopy & Stool Samples: All Negative
Nov 2009 - Endoscopy & Colonoscopy: Gastric Ulcers, Erosive Gastritis & Small Intestine inflammation suggesting Celiac Disease
Jan 2010 - Celiac Blood Panel: Negative
Feb 2010 - Lupus, Rheumatoid Arthritis & Thyroid Blood Panels: Negative, Vitamin & Iron Blood Panels: Vitamin D deficient & Normal Iron levels
March 2010 - EKG & Heart Halter Test: Both Normal
Apr 2010 - Abdominal CT Scan w/Iodine: Umbilical Hernia, Repeat Endoscopy & Colonoscopy: Small Intestine inflammation suggesting Celiac Disease
Dec 2010 - Lupus & Thyroid Blood Panels: Negative, Vitamin & Iron Blood Panels: Vitamin D within normal range (still on the supplements though), Iron was below normal range (but not anemic per GP) & Folic Acid was on the low side of average
March 2011 - Abdominal Ultrasound: Abnormal Gallbladder (Stones & Polyps)
July 2011 - CT Scan (Abdominal & Pelvic): Umbilical Hernia & Abnormal Gallbladder (Stones & Polyps)
Sept 2011 - Cholecystectomy & Umbilical Hernia repair (sutured natural tissues)
July 2013 - Endoscopy & Colonoscopy (Ulcers & Erosive Gastritis is responding well to the Omeprazole 40mg/day)
Sept 2013 - Umbilical Hernia repair with mesh
July 2015 - Blood Panels: IGA 11.5 & IGG 20.9 (IGA & IGG both equivocal results), Sed Rate by Modified Westergren (ANCA) 2mm/h, Proteinase-3 Antibody <1.0 AI, & Myeloperoxidase Antibody <1.0 AI (Normal)
March 2016 - Multiple Blood Panels: Pending
Michelle
_____________________________________________
Tests Done:
14 yrs ago - Flexible Sigmoidoscopy & Stool Samples: All Negative
Nov 2009 - Endoscopy & Colonoscopy: Gastric Ulcers, Erosive Gastritis & Small Intestine inflammation suggesting Celiac Disease
Jan 2010 - Celiac Blood Panel: Negative
Feb 2010 - Lupus, Rheumatoid Arthritis & Thyroid Blood Panels: Negative, Vitamin & Iron Blood Panels: Vitamin D deficient & Normal Iron levels
March 2010 - EKG & Heart Halter Test: Both Normal
Apr 2010 - Abdominal CT Scan w/Iodine: Umbilical Hernia, Repeat Endoscopy & Colonoscopy: Small Intestine inflammation suggesting Celiac Disease
Dec 2010 - Lupus & Thyroid Blood Panels: Negative, Vitamin & Iron Blood Panels: Vitamin D within normal range (still on the supplements though), Iron was below normal range (but not anemic per GP) & Folic Acid was on the low side of average
March 2011 - Abdominal Ultrasound: Abnormal Gallbladder (Stones & Polyps)
July 2011 - CT Scan (Abdominal & Pelvic): Umbilical Hernia & Abnormal Gallbladder (Stones & Polyps)
Sept 2011 - Cholecystectomy & Umbilical Hernia repair (sutured natural tissues)
July 2013 - Endoscopy & Colonoscopy (Ulcers & Erosive Gastritis is responding well to the Omeprazole 40mg/day)
Sept 2013 - Umbilical Hernia repair with mesh
July 2015 - Blood Panels: IGA 11.5 & IGG 20.9 (IGA & IGG both equivocal results), Sed Rate by Modified Westergren (ANCA) 2mm/h, Proteinase-3 Antibody <1.0 AI, & Myeloperoxidase Antibody <1.0 AI (Normal)
March 2016 - Multiple Blood Panels: Pending
