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“Non-celiac disease”

Luna21
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Luna21 Rookie
Luna21
Posted

Hey, so I am one of those “non-celiac disease” people and it’s quite frustrating. I first had a blood test done ordered by my GP. (It was because I was losing/had lost a lot of weight over the past few visites.) I had kind of a horrible bumpy ride getting to where I am today. I was also referred to a GI to see if I had anything wrong too, because sometimes I remember after eating something like that I wouldn’t feel good & foggy mind but just thought it was in my head. Basically thinking back now I had the classic celiac type symptoms (I didn’t ever tell them my symptoms because I was so use to them I thought them normal) ie. Diarrhea every night, brain fog, loss of apatite, mood swings fatigue etc.
Ok now, back to the GI office. It was cold, I was scared and kinda excited because I don’t know what to expect. I’m this skinny kid and the GI comes in, he stands there, looks at me and smiles. I’m telling you this is a GREAT doctor, love him. So basically we found out that my blood work was “through the roof” I’m assuming it was celiac markers where it’s supposed to be under 15 something and mine was 115 or 515, can’t remember. Well was ever and he says “don’t freak out but I think you have celiac” Eventually I do an endoscopy and it’s negative. He thinks scene I’ve been avoiding gluten my gut has healed but he didn’t know so he said I have “non-celiac-gluten sensitivity” why ever that means. Seriously. I think when I’m older I’m going to do a gluten challenge and have a mother endoscopy done?

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Scott Adams Grand Master
Scott Adams
Posted

At this point you should just try out the gluten-free diet for a few months to see if it helps. Are you gluten-free now? If your blood tests were this high, many doctors would have diagnosed you with CD based on this alone, no biopsy necessary. Having a negative biopsy is just confusing at this point, but your blood test results are not confusing, and you should listen to them. Whether it is NCGS, or gluten intolerance, or gluten sensitivity, you need to be gluten-free.

Feel free to share your blood test results if you still have them.

Luna21 Rookie
Luna21
Posted
  • Author
8 hours ago, Scott Adams said:

At this point you should just try out the gluten-free diet for a few months to see if it helps. Are you gluten-free now? If your blood tests were this high, many doctors would have diagnosed you with celiac disease based on this alone, no biopsy necessary. Having a negative biopsy is just confusing at this point, but your blood test results are not confusing, and you should listen to them. Whether it is NCGS, or gluten intolerance, or gluten sensitivity, you need to be gluten-free.

Feel free to share your blood test results if you still have them.

Yes, I try to look for the blood test numbers. And I have been gluten-free for a few months now and symptoms are gone. I just really want to know if it’s actually celiac. 

8 hours ago, Scott Adams said:

At this point you should just try out the gluten-free diet for a few months to see if it helps. Are you gluten-free now? If your blood tests were this high, many doctors would have diagnosed you with celiac disease based on this alone, no biopsy necessary. Having a negative biopsy is just confusing at this point, but your blood test results are not confusing, and you should listen to them. Whether it is NCGS, or gluten intolerance, or gluten sensitivity, you need to be gluten-free.

Feel free to share your blood test results if you still have the

Luna21 Rookie
Luna21
Posted
  • Author

I like what you said about how my blood test is not confusing, I think doctors should trust blood work more, because I had been before the endoscopy been eating a low gluten diet.

Scott Adams Grand Master
Scott Adams
Posted

The biopsy should never have been done if you were not eating gluten daily for the weeks leading up to it.

Luna21 Rookie
Luna21
Posted
  • Author
On 10/18/2020 at 12:10 PM, Scott Adams said:

The biopsy should never have been done if you were not eating gluten daily for the weeks leading up to it.

Okay, so I found the number but I don’t know what exactly for but it’s this: 

the normal range is 15 units/ml 

mine; 157 units /ml. 

RMJ Mentor
RMJ
Posted

You could have the blood test repeated - if it has gone down on a low gluten diet and your symptoms have improved that would certainly say that gluten is a problem for you.

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knitty kitty Grand Master
knitty kitty
Posted

Luna, 

Have you had a DNA test to see if you have any of the genes for Celiac?  If you've got Celiac genes, and you improve on a gluten free diet like RMJ said, plus have such high blood test results, you and your doctors may want to accept all that as a Celiac diagnosis.

Damage to the small intestine is on a sliding scale.  The longer you've been exposed to gluten, the worse the damage is.  It's silly for doctors to tell people to do damage to their bodies so the doctors can be sure they made a diagnosis correctly.  

 

 

Scott Adams Grand Master
Scott Adams
Posted
14 hours ago, Luna21 said:

Okay, so I found the number but I don’t know what exactly for but it’s this: 

the normal range is 15 units/ml 

mine; 157 units /ml. 

Does it say what type of test this was? Was it ttg? Also, is the normal range for this test shown? Knowing these would be helpful.

  • 2 months later...
Luna21 Rookie
Luna21
Posted
  • Author

For some reason we don't have the test results, in paper that is; its on the doctors computer and the doctor sent it to the GI doctor. We don't even know what test it was exactly that was elevated but thats what made the GI doctor think it was Celiac. On my next check up I am going ask for it.

Scott Adams Grand Master
Scott Adams
Posted

I would request that your doctor provide you with the results, as they do have them.

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