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Hoping For Celiac?!

mkp

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mkp Newbie
mkp
Posted

I have had a negative blood test, but am scheduled for a biopsy at the end of February. Regardless of the biopsy results, I will be starting a gluten free diet the day after my biopsy, since learning through this forum that a biopsy may well miss celiac too. I have been struggling with a number of problems for years, but have had some major concerns come up recently. After fracturing both my feet this summer (I'm 27) I finally talked my hematologist into ordering a dexa scan, since no one else thought it was a big deal. Dexa scan showed bone loss with diagnosis of osteopenia. I am already on injections for a B-12 deficiency. I have Raynaud's, Rheumatoid Arthritis, severe bouts of diarrhea/constipation and my gas could probably clear a small airport. My white blood count has also been low, but after several more CBC's it corrects itself. Anyhow, I have FINALLY gotten to a great internist and she is committed to getting to the bottom of my crazy health issues. My doctor feels that I definitely have something gastro (most likely celiac) going on, but if not gastro related, then a connective tissue autoimmune disease (not to belittle celiac, but at least I would feel better with a change,albeit,a huge change in diet). One of my major questions is, how do I get my gastro to get on board with a celiac diagnosis if everything comes back negative, but a gluten free diet takes care of things? It's important for me to have a diagnosis because I am finishing up my masters and will be moving to another state to get a job this summer. I don't want to have to reestablish a celiac diagnosis everywhere I go and follow up care is important to me. For those of you with early bone loss, how quickly have you been able to see a bone gain after starting a gluten free diet? The bone loss is one of my most major concerns. I have felt run down for as long as I can remember really, but getting fractures so easily (i.e. walking) is no good! Thanks ahead of time for your answers! Any tricks/advice for going gluten free would also be greatly appreciated!

Kristen

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oceangirl Collaborator
oceangirl
Posted

Kristen,

Had you gone off gluten at all prior to your bloodwork? And, did they run a complete celiac panel? (It's 5 tests last I knew...) I suspect no matter what the tests ultimately reveal you may benefit from a gluten-free diet. Your symptoms sound somewhat similar to mine minus the rheumatoid. A gluten-free diet really is not as big a deal as so many seem to think. And I am HIGHLY sensitive to gluten so I make almost everything I eat from whole ingredients- it's doable. You are young enough to be adaptive and old enough, I think, to have garnered a little wisdom and I suspect feeling well would eclipse any inconvenience this diet imposes.

After feeling well for a really nice long stretch (I'm almost 4 years in to a gluten-free diet) I recently got "glutened"- BAD. I wouldn't trade the inconvenience and vigilance for ONE SECOND for risking feeling these wretched , wretched symptoms again.

I hope you get to the bottom of this. If you're still eating gluten, do wait 'til after your biopsy to try going off it. Then, stick with this board. It has been an absolute lifesaver for me and I suspect many others. Anything you need to know about how to survive in the world gluten-free you will find here- plus some pretty neat, empathic people!

Good health to you soon!

lisa

mkp Newbie
mkp
Posted
  • Author

Lisa,

I was eating gluten when I had the blood test done, but I need to see exactly what tests were done. Thanks for the info!

Kristen

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