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Waiting For An Answer

Chrisco

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Chrisco Apprentice
Chrisco
Posted

I've had the blood work to test for Celiac done. I see the Dr tomorrow to get the results. I couldn't wait so I went to the lab and got a copy of the results. It shows that I am negative for Celiac. This may sound crazy but I was really hoping for a positive result. I have been sick for 15 years. I am sick with nausea all the time. The Dr's have never been able to give me any answers. I've got the "it's all in your head" explanation a hundred times. I started seeing a psychologist who doesn't believe it's in my head and encouraged me to keep seeing the Dr. I finally found a Dr who listened to me and she swears it is Celiac. I was so excited to have an answer. When I got the results my heart sank because I am still sick with no answer and no remedy. I take a lot of time off from work and I'm pretty sure that I will be fired soon if I do not get well. I know some people have said they tested negative but went on the diet and felt better. My Dr wants to send me for an endoscopy so I don't want to start the diet till after that because I'm afraid I might get a negative result. I know it may seem silly to want a diagnosis so bad but because I have had people not believe that I'm sick and that I'm making it up I feel like I need something to show them to say see I told you I was sick. Has anyone else felt this way? I feel like I'm alone in all this. Everyone is sick of me being sick and honestly I'm sick of it to. I feel like giving up and just not getting out of bed.

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Wolicki Enthusiast
Wolicki
Posted

You're not alone. Most of us have had similar problems.

Have the endo if you'd like, or you can just try the diet to see if you feel better. I hope you get answers soon. If it makes you feel any better, my son and I both have Celiac but BOTH our blood tests only showed abnormal high IGA serum. My little boy started the diet last Friday and has been strict. Yesterday at school, he wasn't thinking and ate a Red Vine Licorice. He spent the afternoon throwing up. He's already having exaggerated gluten responses after only one week. Blood tests are not so reliable. Although doctors think the postive biopsy is the gold standard, I believe the positive effect of diet is the gold standard. Just my two cents.

ang1e0251 Contributor
ang1e0251
Posted

There are reasons why your bloodwork could show negative. You could post the results here and see what responses you get. Waiting for the endoscopy is a good idea for you. Just remember that if your problem is gluten intolerance, the tests will all be negative even though you still have symptoms. Your dr can still dx you as gluten intolerant based on dietary response, if your testing continues to show negative. Hang in there, and keep on doing this step by step. Keep posting and we'll keep hoping for a good result for you.

happygirl Collaborator
happygirl
Posted

Which blood tests were run for Celiac?

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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