"You're a non-traditional case" Doc said. What?? Help Please!

[Jesikita07]

I know there are thousands of these topics out there, but I'm yet another confused and in pain patient seeking as much help and guidance as I can get from you kind folk. 

My storyline is this (and I'll bullet point for ease)

- 2012 living abroad in Nicaragua for last 5 years- begin feeling stomach pain, gas, severe diarrhea. Foods like broccoli, spinach, coffee, are major irritants. 

- 2013 - Immigrate back to US - symptoms continue but increase in frequency

- 2014 - crappy health insurance and can't get tested

- 2015 April - Initial blood test = Celiac panel- my value 98 (std rng 0-19), TTG IGA- my value 74 (std rng 0-19), Gliadin Antibodies IGA - my value 9 (std rng 0-19)

- 2015 Sept - Endoscopy - negative villi atrophy, Colonoscopy - without abnormality

- 2015 Oct - Begin gluten free diet, 98% faithful. Diarrhea seems to lessen. Feeling of increased energy. 

- 2015 Nov - Additional blood work and parasite tests ; Cryptoporidium and Giardia Antigens : Negative, TTG Ab IgA = 26 (std range = <20), Gliadin Deamidated IgG Ab = 29 (std range = <20)

- 2015 Nov-Dec - attempt eating a whole wheat italian coldcut wrap for lunch to test theory. Immediate pain in stomach, and symptoms for 3 weeks. 

 

So my questions are these: 

How important is the diagnosis?

Do these sound like celiac elements or simply gluten sensitivity or neither?

How can the TTG have been so high without villi atrophy? 

Is there something else I should test for or seek out? 

[celiac sharon]

10 hours ago, Jesikita07 said:

I know there are thousands of these topics out there, but I'm yet another confused and in pain patient seeking as much help and guidance as I can get from you kind folk. 

My storyline is this (and I'll bullet point for ease)

- 2012 living abroad in Nicaragua for last 5 years- begin feeling stomach pain, gas, severe diarrhea. Foods like broccoli, spinach, coffee, are major irritants. 

- 2013 - Immigrate back to US - symptoms continue but increase in frequency

- 2014 - crappy health insurance and can't get tested

- 2015 April - Initial blood test = Celiac panel- my value 98 (std rng 0-19), TTG IGA- my value 74 (std rng 0-19), Gliadin Antibodies IGA - my value 9 (std rng 0-19)

- 2015 Sept - Endoscopy - negative villi atrophy, Colonoscopy - without abnormality

- 2015 Oct - Begin gluten free diet, 98% faithful. Diarrhea seems to lessen. Feeling of increased energy. 

- 2015 Nov - Additional blood work and parasite tests ; Cryptoporidium and Giardia Antigens : Negative, TTG Ab IgA = 26 (std range = <20), Gliadin Deamidated IgG Ab = 29 (std range = <20)

- 2015 Nov-Dec - attempt eating a whole wheat italian coldcut wrap for lunch to test theory. Immediate pain in stomach, and symptoms for 3 weeks. 

 

So my questions are these: 

How important is the diagnosis?

Do these sound like celiac elements or simply gluten sensitivity or neither?

How can the TTG have been so high without villi atrophy? 

Is there something else I should test for or seek out? 

The damage to the villi could have been patchy and if they didn't take enough random samples the May have missed it. 

[bartfull]

You have celiac. The small intestine, if spread out, is the size of a football field. Of course they missed the damage, but with numbers that high on your blood work, I'm sure it is there.

That means being 98% compliant in the diet is not good enough. You need to be 100%, or as close as is humanly possible. Go on over to the coping section and read the Newbie 101 thread pinned to the top to learn how.

[squirmingitch]

1 hour ago, bartfull said:

You have celiac. The small intestine, if spread out, is the size of a football field. Of course they missed the damage, but with numbers that high on your blood work, I'm sure it is there.

That means being 98% compliant in the diet is not good enough. You need to be 100%, or as close as is humanly possible. Go on over to the coping section and read the Newbie 101 thread pinned to the top to learn how.

DITTO THIS!!!!!!!

[Palvyre]

With those blood results and if a gluten-free diet helps you very likely have Celiac. My biopsy was also negative, but had strong positive numbers on all of the celiac disease blood tests. I also had a high risk positive genetic profile. Follow up testing revealed vitamin deficiencies and osteoporosis. If you are still concerned you may not have a diagnosis, I'd get the genetic test. 

[Palvyre]

I would add that I am now over a year into my gluten-free diet and my daily diahrea and stomach pain are gone.