So I do realize it is not the end of the world if it now is celiac, which the doctor seem to think with a 99.9% certainty it is (however, screw statistics, we have done soooo well with that in the past). But the thing that gets me every time is those darn blood tests. Every 6 months we test for celiac (probably not needed any more), thyroid values, and leukemia. After the last scare of the blood test that came back with no good values (the leukemia one) I am still exhausted, and then we get one more with bad results. And in 6 months we have to do it all over again, and in 12 months, and in 18 months etc etc. Does that freak out feeling ever go away?

7 Responses

  1. We haven’t had all those blood tests yet. Just regular ones and thyroid. I don’t know if it will ever get easier, but hugs are coming your way!

  2. It’s hard not to worry isn’t it? I’ve tried to just start telling myself that I can’t control the results and to enjoy every moment and not let the worry sneak into the happiness. It’s easier said than done of course, but it helps a little.

  3. Marina had that same thing, the blood test said: Celiac! So she had to go through that “Dünndarmbiopsie” (whatever it is called in english, I don’t know), but everything was alright. Afterwards I was told, that about 50% of people with DS are wrong positive. I hope Vincent is wrong positive just like Marina. I know it is not the end of the world, but it complicates life a lot I guess. Good Luck! And happy belated birthday to Vince.

  4. Hej,
    I think T. over at http://all4gals.blogspot.com/ has celiac, too… Maybe you want to contact her mom?

  5. not for me…. every time E gets an unexplained bruise, or petichiae, or heads down the road to awful illness…I panic.

    not so much about the celiac’s we only test annually for that, but the big L…it scares the h e double l out of me.

    happy birthday to Vincent!!!

  6. Som vanligt är väntan och oron nästa det värsta. Jag är övertygad om att Vince kommer klara även den här utmaningen galant. Styrkekramar!

  7. Hello. I’m a new visitor. My son has celiac. I figured out through a mix of experience, instinct, and a lot of sleepless nights. It makes sense since muscles are slow to grow, the intestine is slow to digest and those grains….they are tough. I HATE blood tests because it’s so hard to get the blood out of my litlte guy.

    Will check back!

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