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Its Been A Long Road

ranger

By ranger
in Coping with Celiac Disease

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ranger Enthusiast
ranger
Posted

ive been reading the forums for awhile, but just decided to join in. I had a negative blood test and a negative biopsy but feel so much better gluten free that Ive decided to ignore all that and go gluten-free. Ive been sick for a year and a half- gone from 110 lbs. to 84 lbs at my low point. Been gluten-free since Oct. 31 ( except for some major glutenings through all the holidays!) Am now up to 94 lbs.(hooray) and feeling much better. I probably would have never stopped eatin gluten after the biopsy if it werent for the info Ive gotten on this forum. For that, I thank you all! Have always been a cook- now relearning everything, bit eating rather well.I really feel sorry for those that dont cook on this diet.Again thank you

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ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome. I am glad you are starting to feel better. It does take a bit to get the hang of things but it sounds like you are well on your way.

sbj Rookie
sbj
Posted

If you haven't already done so, you might consider a complete blood count, vitamin and mineral testing, and a bone density scan. These are tests that are recommended for those newly diagnosed with celiac disease.

Jestgar Rising Star
Jestgar
Posted
If you haven't already done so, you might consider a complete blood count, vitamin and mineral testing, and a bone density scan. These are tests that are recommended for those newly diagnosed with celiac disease.

Or not. Not everyone chooses additional testing.

sbj Rookie
sbj
Posted
Or not. Not everyone chooses additional testing.

That's sort of why I wrote "you might consider"

Must every well-intentioned suggestion come with a disclaimer?

rinne Apprentice
rinne
Posted

Hi and welcome. :)

Congratulations on taking your health into your own hands. I have found this site enormously helpful too.

A vitamin and mineral panel check at minimum is very helpful, it is quite possible your B12 and D are low and that can be dealt with simply, if not dealt with it may lead to other problems.

And I am not a doctor. :)

I had negative blood work too and I didn't wait for the endoscopy because it was scheduled for five months after I went gluten free and there was little use in having it done at that point. I had already decided I was never going to eat gluten again.

Jestgar Rising Star
Jestgar
Posted
That's sort of why I wrote "you might consider"

Must every well-intentioned suggestion come with a disclaimer?

Sorry, I didn't mean to be argumentative, I was just trying lessen the immediate burden of a lifestyle change. Sometimes the info comes too fast and it's intimidating. I wanted to emphasize that additional testing is optional, and doesn't need to happen immediately.

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marciab Enthusiast
marciab
Posted

I agree all this info can be overwhelming but getting your nutrient levels tested could save you some recovery time.

I was tested after about a year on the diet and found to be B12 and iron deficient. I felt a whole lot better once I got those built back up.

And .. I was just retested a few months ago, 3 years after starting the diet and found out I'm chromium deficient.

Oh and if you're feeling weak or dizzy, a BG tolerance test would be a good idea too. These are things that are easily treated and can make a big difference in how you feel.

sbj Rookie
sbj
Posted
Sometimes the info comes too fast and it's intimidating.

That's true!

Ranger, the weight loss seems a bit scary so there could be a deficiency there that might benefit from quick action - a supplement from your doctor. On the other hand, there is no absolute requirement to do any of these tests, and most deficiencies resolve themselves after being on the gluten-free diet for a while. It's your call on what to do beyond the gluten-free diet, if anything.

Life would be so much more simple if everything was a yes or no, black and white, do this don't do that, wouldn't it? All we can do is gather information and try to make informed decisions.

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