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Do I Need A Diagnosis?

BeFree

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BeFree Contributor
BeFree
Posted

I'm new--Hello everyone!

I have been on this diet for two months now, and I feel AMAZING, like a new person, all of my symptoms are gone. I'm sleeping like a rock, full of energy, happy, no more acid reflux, no more signs of vitamin deficiencies, no more stomach gurgling, no more painful gas and bloating. With all this, is it really necessary to get tested for celiac? I really do not want to reintroduce gluten to get the test because I feel SO GOOD.

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Lisa Mentor
Lisa
Posted

How can you argue with success! Consider yourself Gluten Intolerant, which carries a wide spectrum. Labels aren't too important here.

If it feels good, keep it up! Congratulations :D

Ooops....forgot my manners, WELCOME!

BeFree Contributor
BeFree
Posted
  • Author

How can you argue with success! Consider yourself Gluten Intolerant, which carries a wide spectrum. Labels aren't too important here.

If it feels good, keep it up! Congratulations :D

Ooops....forgot my manners, WELCOME!

Thanks Lisa!!!!

Lisa Mentor
Lisa
Posted

I must add, as a word of caution.....that if you have had an extended time with intestinal distress, mineral deficiency or issue with absorption, you should seek some medical testing. It's a good measure for your medical history and to rule out other issues of greater concerns.

Skylark Collaborator
Skylark
Posted

That's great! I'm glad you are feeling better.

I was never formally diagnosed. I didn't need a Dr. to tell me what I had already figured out on my own. I agree with Lisa that there is no harm in asking your Dr. to check your D, B12, and iron levels to be sure the vitamin deficiencies have fully resolved.

BeFree Contributor
BeFree
Posted
  • Author

"I must add, as a word of caution.....that if you have had an extended time with intestinal distress, mineral deficiency or issue with absorption, you should seek some medical testing. It's a good measure for your medical history and to rule out other issues of greater concerns."

I understand you're not a doctor LOL, but specifically what do you think I should be concerned about or what type of medical testing should I seek? The thing is, I *have* had these symptoms for an extended time, but I'm talking like 25 years, most of life, so whatever's there, celiac or otherwise, it has been with me for a long time. They have only just recently worsened (within the past year), which prompted me to try the gluten-free diet. My concern is that if I go to the doctor with all of these vague sounding (to him), long term symptoms, I will just undergo a long series of invasive and inconclusive medical tests, unless I ask for something specific, like celiac testing. I just don't want to run around in circles. (Also I have been tested for anemia, that's been ruled out.)

BeFree Contributor
BeFree
Posted
  • Author

Oh and also, the last time I "challenged" myself with gluten, I was in the worst pain of my life. Much worse than anything I'd had when eating it daily. I'm afraid of gluten now, it seems like poison. I do want the diagnosis and I think it would be very important to have it in my medical records, but the thought of regluttening, yikes.

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jswog Contributor
jswog
Posted

That's great! I'm glad you are feeling better.

I was never formally diagnosed. I didn't need a Dr. to tell me what I had already figured out on my own. I agree with Lisa that there is no harm in asking your Dr. to check your D, B12, and iron levels to be sure the vitamin deficiencies have fully resolved.

My doctor REFUSED to order those tests without a diagnosis. :(

Skylark Collaborator
Skylark
Posted

My doctor REFUSED to order those tests without a diagnosis. :(

If you are showing signs of deficiency, find a doctor who will. My doctor ordered them when I wasn't feeling well without batting an eye. He also tells me not to bother gluten challenging because I feel better off gluten and the celiac tests are too unreliable.

jswog Contributor
jswog
Posted

If you are showing signs of deficiency, find a doctor who will. My doctor ordered them when I wasn't feeling well without batting an eye. He also tells me not to bother gluten challenging because I feel better off gluten and the celiac tests are too unreliable.

Unfortunatly, I'm in a little town in the middle of nowhere in West Texas, so I'm very limited on choices, adding GREATLY to all of my frusterations! I wish I could find a doctor like yours!

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

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    • catnapt
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      By catnapt · Posted

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