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What Do You Think Of This?

mwib

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mwib Newbie
mwib
Posted

Several years ago, my aunt was diagnosed with celiac, but I did not show any symptoms, so I did not get any tests done.

Two months ago, I was admitted to the hospital because my hemoglobin was down to 5. I received several blood transfusions and was diagnosed with Pernicious Anemia.

In the months leading to this diagnosis, I kept telling my family doctor something was wrong with me. I was nauseous and had diarrhea every day, but she dismissed those symptoms.

Since taking B12 shots, the nausea has gone away but the diarrhea persists.

I have also developed iron deficiency anemia.

I followed up with a GI and had an endoscopy / colonoscopy done last week. I was told that it showed moderate chronic duodenitis.

I looked that up and see that it can be caused by taking Advil, which I did take several times per week before going into the hospital, as I had lots of headaches before going on B12 shots...

But, when I look at the fact that I have a family history of celiac, that I am deficient in both B12 and iron, and that there is the duodenitis, I am wondering if I have celiac?

My follow up appt with the GI isn't for another week... If anyone can shed some light on this in the meantime, I'd appreciate it.

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ravenwoodglass Mentor
ravenwoodglass
Posted

With a family history and the symptoms you have had it certainly could be that you are one of us. Did they do a celiac panel on you? Regardless of what the outcome is on the biopsy or blood tests you should give the diet a good strict try for a couple of months. False negatives unfortunately are all to common.

mwib Newbie
mwib
Posted
  • Author
With a family history and the symptoms you have had it certainly could be that you are one of us. Did they do a celiac panel on you? Regardless of what the outcome is on the biopsy or blood tests you should give the diet a good strict try for a couple of months. False negatives unfortunately are all to common.

My GI didn't do a celiac panel - he went ahead and scheduled the biopsy after my initial appointment. He said that because of the pernicious anemia, there was no point in doing a blood test... He made it sound as though the blood test was just a preliminary step to see if it was at all possible. (does that sound right? or should one be done?)

Ahorsesoul Enthusiast
Ahorsesoul
Posted

Just embrace the gluten free diet.

I love that you noticed less headaches with taking B12 shots. I've noticed this too--major decline in headaches/migraines. Anyone notice less headaches with B12 pills or spray?

mwib Newbie
mwib
Posted
  • Author
Just embrace the gluten free diet.

I love that you noticed less headaches with taking B12 shots. I've noticed this too--major decline in headaches/migraines. Anyone notice less headaches with B12 pills or spray?

I haven't had a headache in 2 months - since getting diagnosed w/ the pernicious anemia...

JillianLindsay Enthusiast
JillianLindsay
Posted
He made it sound as though the blood test was just a preliminary step to see if it was at all possible. (does that sound right? or should one be done?)

You've got it (IMHO). I'm not a doctor, but from what I've learned, read and experienced, it seems that the blood test is very preliminary (a formality even). There are a lost of false negatives and doctors will often send a patient for an endoscopy anyway if the symptoms fit. Considering the seriousness of your symptoms, he was probably just saving you time waiting for more blood test results and sending you straight to the scopes, which sounds like a good thing to me.

If you have stunted villi (the lining in your small bowel that allows you to absorb nutrients from your food) then you will be diagnosed with celiac disease based on the appearance of the lining of your small bowel (inflammation, stunted villi, lymphocytes, etc) rather than from a blood test. People with celiac disease usually have anemia and/or other vitamin deficiencies because the inflammation and stunted villi prevent them from absorbing them naturally (from their diet).

Regardless of the results you might want to try a gluten-free diet once the scopes are done (don't start beforehand or you may get a false negative there) to see if it helps you feel better. If you have a positive dietary response combined with your anemia and diahhrea your doctor may diagnose you on that alone.

Good luck! I hope you get some answers and start to feel better soon!

Jillian

My GI didn't do a celiac panel - he went ahead and scheduled the biopsy after my initial appointment. He said that because of the pernicious anemia, there was no point in doing a blood test...
Mtndog Collaborator
Mtndog
Posted
With a family history and the symptoms you have had it certainly could be that you are one of us. Did they do a celiac panel on you? Regardless of what the outcome is on the biopsy or blood tests you should give the diet a good strict try for a couple of months. False negatives unfortunately are all to common.

I think you've gotten some good advice here. The blood test and biopsy all too often come back false negative.

I too would wait for your scopes and then try going gluten free.

Here's hoping you feel better soon!

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    • knitty kitty
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    • Wheatwacked
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