Headed In Right Direction?

[Melindy09]

Ok so here is my story...

I welcome any thoughts, opinions and support! I would love to discover if anyone can relate to my story. Some info may be unrelated, but I have managed to piece together a timeline

Childhood-Looking back I feel I have always suffered from some anxiety issues, I always told my parents I didn't "feel good", missed a lot of school, felt nervous a lot, etc., felt achy, have suffered non-diabetic hypoglycemia

2003-Started taking anti-depressents to manage depression

2004-I was diagnosed with Mono in my first year of college

June 2005-Developed severe pain in my jaw/mouth/teeth. So severe that we had called the Dentist in the middle of the night and she prescribed me Tylenol w/ Codeine. I had an appt scheduled that summer to get to see if I should get my wisdom teeth removed, so we bumped up the appt the next day to see if that was the cause. He determined the paid I was experiencing was not the cause. He then referred me to see an endodontist to determine if I needed a root canal and maybe that was causing the severe pain, that doctor determined I did not need a root canal. I was SO ill from the pain meds I had taken for this (went from Tylenol w/ Codeine to Vicoden) that my mom had to take me to the ER for nausea and dehydration. There they gave me 2 IV bags, zofran for nausea and prescribed me an antibiotic (Penicillin) thinking I had an infection in my mouth.

Here is where things get interesting...

To make a long story short, after a day or two on the penicillin I developed severe abdominal pain, and was up all night in pain. I developed diarrhea and noticed blood in my stool. I was taken to the ER again, and they admitted me to the hospital where I spent 4 days. Now, as a 19 year old at the time I trusted that my parents knew all the answers, so I did not ask a whole lot of questions about what had happened to me. Assuming that this stay was due to C. Diff from the antibiotics, I thought we had our answers. I have recently learned that theI tested NEGATIVE for C. Diff.!?! They also at that time ruled out Chrones, etc. They did however, I believe, say that I had colitis (inflammation in the lining of my colon) and suggested I have a colonoscopy done.

Jan 2006-I had a colonoscopy done, in which they did not find any evidence of inflammation (colitis). They did remove a very tiny polyp from the first portion of my colon. It was benign, and was called a "tubular adenoma". Since I am at risk of developing more and they can be precancerous, they suggested I repeat the colonoscopy in 5 years (Jan 2011), which was over a year ago.

After all this I have had "episodes" I like to call them maybe 5-6 times/year of severe abdominal pain/cramping. These "episodes" have gotten worse over time one of the recent times landed me in the ER due to pain, nausea & vomiting. They gave me a CT scan and found nothing abnormal, and diagnosed me with IBS.

I have developed more severe anxiety issues, and have bouts of depression.

Family history includes a grandmother who had colon cancer, a distant relative with Celiac, and I am not sure of anyone else at this time. I had a visit with my doctor today and I brought up the possibility of Celiac. She said that would be on the bottom of her list of diagnosis because she felt I should be having my "episodes" much more frequently if it was Celiac. Do you feel this to be true? I asked her what she felt I was hospitalized for in '05, and she said we may never know, or even find out what is causing my episodes:-( I got a little teary eyed and told her that I don't want this to happen to me anymore because it is so awful. I want to start a family soon, and want to be healthy before I get pregnant. She gave me a referral to a Gastro doctor and said I can go if I want, and if I really wanted to have blood work done for Celiac she would order it, but didn't feel it was a problem.

Based on the information provided do you think I should even consider gluten issues as a cause? Please help, I don't know where to go with this or if I should take my doctors word? I didn't feel like she provided me with much help:-(

[GFinDC]

Hi and welcome to the site.

You could get the celiac blood antibody testing done. The standard tests are the blood antibodies and then the endoscopy to take biopsy samples from the small intestine. They check the biopsy samples for evidence of damage under a microscope. You could also try the gluten-free diet and see if it makes any difference. But if you want testing done you need to stay on gluten until the testing is completed.

[Bubba's Mom]

Ok so here is my story...

I welcome any thoughts, opinions and support! I would love to discover if anyone can relate to my story. Some info may be unrelated, but I have managed to piece together a timeline

Childhood-Looking back I feel I have always suffered from some anxiety issues, I always told my parents I didn't "feel good", missed a lot of school, felt nervous a lot, etc., felt achy, have suffered non-diabetic hypoglycemia

2003-Started taking anti-depressents to manage depression

2004-I was diagnosed with Mono in my first year of college

June 2005-Developed severe pain in my jaw/mouth/teeth. So severe that we had called the Dentist in the middle of the night and she prescribed me Tylenol w/ Codeine. I had an appt scheduled that summer to get to see if I should get my wisdom teeth removed, so we bumped up the appt the next day to see if that was the cause. He determined the paid I was experiencing was not the cause. He then referred me to see an endodontist to determine if I needed a root canal and maybe that was causing the severe pain, that doctor determined I did not need a root canal. I was SO ill from the pain meds I had taken for this (went from Tylenol w/ Codeine to Vicoden) that my mom had to take me to the ER for nausea and dehydration. There they gave me 2 IV bags, zofran for nausea and prescribed me an antibiotic (Penicillin) thinking I had an infection in my mouth.

Here is where things get interesting...

To make a long story short, after a day or two on the penicillin I developed severe abdominal pain, and was up all night in pain. I developed diarrhea and noticed blood in my stool. I was taken to the ER again, and they admitted me to the hospital where I spent 4 days. Now, as a 19 year old at the time I trusted that my parents knew all the answers, so I did not ask a whole lot of questions about what had happened to me. Assuming that this stay was due to C. Diff from the antibiotics, I thought we had our answers. I have recently learned that theI tested NEGATIVE for C. Diff.!?! They also at that time ruled out Chrones, etc. They did however, I believe, say that I had colitis (inflammation in the lining of my colon) and suggested I have a colonoscopy done.

Jan 2006-I had a colonoscopy done, in which they did not find any evidence of inflammation (colitis). They did remove a very tiny polyp from the first portion of my colon. It was benign, and was called a "tubular adenoma". Since I am at risk of developing more and they can be precancerous, they suggested I repeat the colonoscopy in 5 years (Jan 2011), which was over a year ago.

After all this I have had "episodes" I like to call them maybe 5-6 times/year of severe abdominal pain/cramping. These "episodes" have gotten worse over time one of the recent times landed me in the ER due to pain, nausea & vomiting. They gave me a CT scan and found nothing abnormal, and diagnosed me with IBS.

I have developed more severe anxiety issues, and have bouts of depression.

Family history includes a grandmother who had colon cancer, a distant relative with Celiac, and I am not sure of anyone else at this time. I had a visit with my doctor today and I brought up the possibility of Celiac. She said that would be on the bottom of her list of diagnosis because she felt I should be having my "episodes" much more frequently if it was Celiac. Do you feel this to be true? I asked her what she felt I was hospitalized for in '05, and she said we may never know, or even find out what is causing my episodes:-( I got a little teary eyed and told her that I don't want this to happen to me anymore because it is so awful. I want to start a family soon, and want to be healthy before I get pregnant. She gave me a referral to a Gastro doctor and said I can go if I want, and if I really wanted to have blood work done for Celiac she would order it, but didn't feel it was a problem.

Based on the information provided do you think I should even consider gluten issues as a cause? Please help, I don't know where to go with this or if I should take my doctors word? I didn't feel like she provided me with much help:-(

I would suggest persuing the tests. Over the years pre-DX I also had "bouts" of more severe symptoms, followed by spells where I felt pretty good.

Get tested, then no matter what the tests find (20-30% of Celiacs have negative blood tests) go completly gluten-free for 3 months. See how you feel.

Some people are gluten intolerant and blood and endoscopes won't show it.

[Melindy09]

Thank you for your responses!

I got tested, and my results of the IGA TIssue Transglutaminase AB test was < 1.2. Standard range is <4.0, which means I tested negative for Celiac Disease.

Is it weird that I almost feel bummed? I just wish I had an answer to my problems:-(

[Mnicole1981]

Thank you for your responses!

I got tested, and my results of the IGA TIssue Transglutaminase AB test was < 1.2. Standard range is <4.0, which means I tested negative for Celiac Disease.

Is it weird that I almost feel bummed? I just wish I had an answer to my problems:-(

Nope, you have every right to be bummed. I know how you feel. You probably felt like you had an answer as to why you felt so bad. When you hear that the test was negative, you are right back where you started.

[GFinDC]

@Melindy,

Hi, you should not assume a negative test means you don't have celiac disease. The tests can only show a positive (the presence of antibodies). They can't show a negative, the absence of celiac disease. And the tests are looking for antibodies in your blood stream, when they are mostly concentrated in your gut. Some of the tests are up to 70% accurate, which means they are wrong 30% of the time. Some people do have a high reading on one antibody and low reading on all the others. This isn't an exact science, Some people never test positive for antibodies but they still have celiac.There is a lot of variability between people and how their tests will turn out. They don't have a perfect celiac disease test yet. Teh positives are almost always right, but the negative tests are not so reliable.

[beachbirdie]

Ok so here is my story...

I welcome any thoughts, opinions and support! I would love to discover if anyone can relate to my story. Some info may be unrelated, but I have managed to piece together a timeline

She said that would be on the bottom of her list of diagnosis because she felt I should be having my "episodes" much more frequently if it was Celiac. Do you feel this to be true? I asked her what she felt I was hospitalized for in '05, and she said we may never know, or even find out what is causing my episodes:-( I got a little teary eyed and told her that I don't want this to happen to me anymore because it is so awful. I want to start a family soon, and want to be healthy before I get pregnant. She gave me a referral to a Gastro doctor and said I can go if I want, and if I really wanted to have blood work done for Celiac she would order it, but didn't feel it was a problem.

Based on the information provided do you think I should even consider gluten issues as a cause? Please help, I don't know where to go with this or if I should take my doctors word? I didn't feel like she provided me with much help:-(

Well, first of all, your doctor is wrong about your digestive episodes. Many celiacs do not have digestive issues, many have no symptoms at all. That should not be a reason to rule OUT celiac.

I don't know much about the testing for this, but if you had a C.Diff infection, your gut flora is seriously messed up. It does not necessarily recover on its own. There are tests that they can do to look for "Small Intestine Bacterial Overgrowth" (or "SIBO"). Has your doc said anything about that?

I would definitely pursue an appointment with the GI doc, ask him/her to do the full celiac panel and ask about the SIBO.

After that, you might try the Open Original Shared Link or Open Original Shared Link diets. They are designed especially for people who have had serious intestinal issues (Crohn's, other inflammatory bowel diseases, celiac, etc.). They are based on the idea of eating foods that do not feed certain bacteria, and have proven successful in many people. They are a little harder to follow than the gluten free diet because they are also grain-free, sugar-free (raw honey is allowed), and free of most dairy. There is plenty of science behind them, they are not fads. I recommend them a lot because I have seen how successful the SCD diet has been for my daughter-in-law who almost died from a C.Diff infection last year. She is symptom free, though she can definitely tell when she has gotten a tad bit of sugar or un-fermented dairy.

It might help if you start a food diary and try to find out whether you can tie your "episodes" to any specific foods. Food reactions can take anywhere from minutes to days, so you'll have to keep it for a while.

Hope this helps a little.