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Update For Me... Negative Blood Work.

littleburgy

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littleburgy Rookie
littleburgy
Posted

So my blood work came back negative for celiac. But I was positive for anemia and the GP wants to talk to me next month when I get back from vacation. She might request a biopsy, but I doubt it. And even then I may not get a positive on that.

 

I've reached a point where I don't want to keep chasing a diagnosis that may never come and possibly isn't there. When would enough be enough? Do I start chasing doctors and getting second or third opinions and demanding this test or that test and keep eating gluten and stay sick and miserable?

 

Sorry, I can't do it and I'm done with it. Maybe it's not celiac's and it's a gluten sensitivity.

 

All I know is what wrecks me when I eat gluten (and secondary, dairy.) So that's where I'm at, I'll be on the boards discussing the gluten free life anyway. I have been off gluten for a week and already feel like a new person. My head to toe eczema has almost disappeared. The wounds that have taken months to heal are finally starting to heal. The gas and brick stools are subsiding. I'm up managing the house and cooking and cleaning like a wife again when I used to want to just go to bed. I just want my life back.

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nvsmom Community Regular
nvsmom
Posted

More people have NCGS than celiac disease. You may be correct that it could be NCGS - the symptoms are basically the same anyways.

 

Give the diet a good 6 months before judging it's effectiveness.  Some symptoms change quickly, but others, like anemia and arthritis, will take quite a while to improve.

 

Best wishes.

cyclinglady Grand Master
cyclinglady
Posted

Did you get a complete panel? I tested negative on TTG which is really odd. If my doc had not ordered the complete panel, I never would have received a diagnosis. Anemia was my only symptom at the time.

I am officially diagnosed, but my husband was not. He went gluten-free per the advice of two medical doctors 14 years ago and is thriving (we knew nothing about celiac disease and testing back then). So, you might consider the diet, but stick with it for at least six months!

Zebra007 Contributor
Zebra007
Posted

I think your wise to choose to continue on with your gluten-free diet, my blood test came back negative too, and then I just thought what the heck!! I knew I couldn't continue to eat anything with Gluten, and so I made the decision to continue with my gluten-free diet.  I think its normal that you would want a firm diagnosis, I felt the same way, but really if your body is telling you something is very wrong you have to listen, which sounds like what you have done.

BlessedMommy Rising Star
BlessedMommy
Posted

I totally understand where you're at! I never actually even got the bloodwork--as I ended up in the ER in the process of challenging. Being that it was only 10 days on the challenge before I had that severe reaction and that I couldn't go see the celiac doctor for weeks, I simply gave up on testing and went gluten free for life. I figured that even if I tested negative, I wouldn't dare touch the stuff again. 

 

You know your body better than anybody else. If something makes you sick, don't eat it. You don't have to have a doctor's note to do what's best for your health. 

Sunshine Sassie Rookie
Sunshine Sassie
Posted

Hey there littleburgy, I've been playing the "chase the diagnosis" game as well recently! I just had an endoscopy with a negative biopsy and my blood work couldn't confirm or rule out Celiac due to my IGA deficiency. I possibly could have Celiac or NCGS but I know my reaction is negative towards gluten.

 

I understand how frustrating and confusing it can be. I am not pursuing any more testing as of now; just working on feeling better and eating gluten free. I am just grateful that the treatment for Celiac and NCGS are the same (gluten free eating) and doesn't have to be prescribed by a doctor! Maybe in the future they will come out with different tests that are easier to diagnose or rule out Celiac  :D

littleburgy Rookie
littleburgy
Posted
  • Author

Thank you for your support, everyone. I will be seeing everyone around. If nothing else it's been a good thing that I've finally pinpointed what's been causing my problems for so long. There's no better test than seeing how you react to what you eat.

 

Did you get a complete panel? I tested negative on TTG which is really odd. If my doc had not ordered the complete panel, I never would have received a diagnosis. Anemia was my only symptom at the time.

I am officially diagnosed, but my husband was not. He went gluten-free per the advice of two medical doctors 14 years ago and is thriving (we knew nothing about celiac disease and testing back then). So, you might consider the diet, but stick with it for at least six months!

 

The GP did get some pretty thorough testing done but I will double check with her when I see her. She might order the additional biopsy but I won't be fussed if she doesn't.

 

If diagnostic methods do improve in the future, than someday perhaps I may be willing to put myself up to more testing.

 

I have started the Specific Carbohydrate Diet (more or less, no dairy, gluten or soy) and I can't believe how much better I feel. Unless I want to live with eczema, anemia and constipation -- eating gluten and dairy just isn't an option. I've cut out soy as well because it's not recommended for hypothyroids like me. I've tried gluten free but with dairy and soy -- some improvements but not as much as taking them all out!

 

Right now the upcoming challenge is going to be travelling to see my in-laws for easter and explaining to them that I have to eat a strict diet. I think they understand in theory and are willing to help but it will be getting them to understand little things like hidden gluten -- yes, "the meat is great but I can't eat it breaded!"

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