Saw My Gastroenterologist Today...

Tabasco · August 31, 2009

I think she might be a keeper. She didn't dismiss my symptoms or make me feel like a hypochondriac. She said that a lot of my symptoms sound like celiac but some may have other causes. She is very thorough. She is testing me for everything. These are the labs that I can remember:

Celiac Panel

Antibodies

B12

Ferritin

Thyroid (TSH)

CBC w/ diff

Cholesterol

A1C (for diabetes)

Hep screen (since I have a tattoo)

U/S for gallbladder

Transit time for chronic constipation (swallow pills with markers in them and follow up with x-rays at intervals)

Diabetes, heart disease, gallbladder, hepatitis, stroke all run in my immediate family. My older sister had a stroke at 23. She has a genetic blood disorder called Factor V deficiency, which causes clotting.

Dr. Jagiella is referring me to an Oncologist to be screened for Factor V deficiency as well. She said that if I have it then that can affect the circulation to my gut thus affecting my transit time due to small clots in the arteries.

She suspects that I may have Metabolic Syndrome as well. That would explain my weight gain. Today I was hypertensive in the office. I guess I have been for my last few dr. visits. And I know that my cholesterol is elevated. Has been for over 20 yrs. Not high enough to treat medically but hangs out around 200. She said my liver felt slightly enlarged too. Ho- hum...I am feeling like a fatty-boom-ba-latty now.

She saw the rash on my back and said "Oh yes...this needs to be biopsied". She seemed suspicious of it. So it's back to the derm too.

She said she isn't going to give me any meds or tell me anything until we get the labs back. If I test positive then she wants to do the biopsy for confirmation.

So that's where I am today. Another step closer to knowing one way or the other.

I'll keep you posted.

Stef

jerseyangel · August 31, 2009

She sounds very thorough, Stef--please keep us posted.

Tabasco · September 7, 2009

Still waiting on the genetic results but so far everything has come back normal. I haven't seen the numbers, just going by what the nurse said. I guess this is good news but it is a little disappointing. When you have all of these symptoms all of your life and think that maybe they're not all random, that there is really a cause, it's a relief. I feel like a hypochondriac. I don't WANT to be sick. I don't want to have a "syndrome" or a "disease". I don't want to even be allergic or sensitive to anything.

My gallbladder U/S is scheduled for tomorrow but I can't make it. I forgot to tell work about it and it's too late to spring it on them.

My transit time study is next week so I will do that and I will also see the hematologist and the derm. I still need to know if I have Factor 5 deficiency and I need a biopsy of the rash...which is why I started this journey to begin with.

I'm not anemic, or diabetic, or hypothyroid. I don't have hepatitis either...thank God. My B12 is good too.

We'll see what the derm says.

So...can I be positive for DH but not have positive labs?

ravenwoodglass · September 7, 2009

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Tabasco said:
Still waiting on the genetic results but so far everything has come back normal. I haven't seen the numbers, just going by what the nurse said. I guess this is good news but it is a little disappointing. When you have all of these symptoms all of your life and think that maybe they're not all random, that there is really a cause, it's a relief. I feel like a hypochondriac. I don't WANT to be sick. I don't want to have a "syndrome" or a "disease". I don't want to even be allergic or sensitive to anything.

My gallbladder U/S is scheduled for tomorrow but I can't make it. I forgot to tell work about it and it's too late to spring it on them.
My transit time study is next week so I will do that and I will also see the hematologist and the derm. I still need to know if I have Factor 5 deficiency and I need a biopsy of the rash...which is why I started this journey to begin with.

I'm not anemic, or diabetic, or hypothyroid. I don't have hepatitis either...thank God. My B12 is good too.

We'll see what the derm says.
So...can I be positive for DH but not have positive labs?

Yes you can have DH and not have positives you can also have celiac and not have positive labs or biopsy. False negatives are not unusual. When your done with all testing for celiac be sure to give the diet a good try no matter what the results. Being gluten free will not effect testing for anything other than celiac so it does not hurt to try the diet while other stuff is being excuded.

OptimisticMom42 · September 7, 2009

My son had a negative celiac blood test but had DH on the back of his knees, lots of other celiac type symptoms and a positive response to the diet. So I have agree with Ravenwoodglass, try the diet anyhow. Hope you are feeling better soon.

RA

ravenwoodglass · September 7, 2009

One thing I forgot to mention about the DH issue. Make sure the derm is familiar with the process for biopsy. If he biopsies the lesions themselves that will come back negative. The biopsy needs to be tissue beside the lesions.