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maxdad

Some "about To Have Blood Tests" Questions

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Hi:

My son was diagnosed last week based on blood tests. Upon reading about celiac, it hit me that I have many of the symptoms, part of a series of stomach problems over the past few years that are usually attributed to stress, IBS, gastroparysis, or some other thing. But celiac seems to fit. So, I have been gluten free for about 40 hours now, and I feel great. Shockingly great, actually. No more nausea, no more racing to the bathroom before I explode, no more gurgling stomach every time I eat, no more waves of tiredness. So I told my doctor, who ordered blood tests. Some questions:

1) Is it reasonable that I could feel so much better so quickly? A day and a half without gluten and I feel wonderful? Seems a bit too fast to draw any conclusion other than a coincidence.

2) Will the fact that I am going a few days gluten free screw up the blood test? I know not to do it before a biopsy, but what about blood work?

3) Is there one particular marker that is most revealing? That is, I know that they test for numerous antibodies but is there one in particular that is considered most important?

4) If it is positive, should I have the biopsy just to see how much damage has been done? Sort of a baseline, so I can look again in a few years and see if it is healed?

5) Most importantly, if I am positive, can I still drink Irish Whiskey, assuming it is the really good ones like Bushmills, which are triple distilled? Otherwise I have no real reason to live.

Thanks,

Mitch

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1) Is it reasonable that I could feel so much better so quickly? A day and a half without gluten and I feel wonderful? Seems a bit too fast to draw any conclusion other than a coincidence.

Oh Yeah! The last time I willingly ate gluten I spent a couple hours being violently ill, after which I felt wonderful!

2) Will the fact that I am going a few days gluten free screw up the blood test? I know not to do it before a biopsy, but what about blood work?

Nope, should be fine for a few weeks to a month.

3) Is there one particular marker that is most revealing? That is, I know that they test for numerous antibodies but is there one in particular that is considered most important?

Mmmm, I think that the anti-gliadin results are considered "less specific", but if you have a positive anti-gliadin and low positive anything else, that's pretty much positive.

4) If it is positive, should I have the biopsy just to see how much damage has been done? Sort of a baseline, so I can look again in a few years and see if it is healed?

If you're curious, why not?

5) Most importantly, if I am positive, can I still drink Irish Whiskey, assuming it is the really good ones like Bushmills, which are triple distilled? Otherwise I have no real reason to live.

I, too, am dying for the answer to this one.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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In general, distilled alcohols are safe (see link: https://www.celiac.com/st_prod.html?p_prodi...-23106011054.bc which discusses it). However, there are a select few that react, although it is unclear if it is a Celiac reaction or another mechanism. I drink distilled alcohols. If you find later on you do not do well on them, then you'll need to make another decision. But, I would say the vast majority of Celiacs do fine on them, and the research supports it (see above link).

Yes, it is possible to feel results quickly. Some people see slow improvements, some see fast improvements, some go on a roller coaster, etc etc. People get different symptoms at different times, too. Celiac is often called a "medical chameleon" because it has such various symptoms and recovery times. Just feeling better doesn't mean you are truly healed...that might still take some time (so if you feel bad tomorrow, for example, it doesn't mean its not working. its a process!)

I personally would continue eating gluten up until the bloodwork is done, especially since you are doing it soon, presumably. You want the most accurate results. Otherwise, if it is negative, you could potentially battle with doctors later on who say "you don't have celiac"----and they aren't going to want to hear that the tests weren't 100% accurate bc you weren't on gluten for an amount of time. (I know this because I speak from experience)

Here is the list of tests you want run: www.celiaccenter.org/faq/ (it is dr. fasano, a leading celiac expert's website) MAKE SURE your doc runs the full panel..they often do not.

biopsy is a personal decision. damage can heal quickly or over a period of time. if your bloodwork returns to normal, the leading celiac researchers say that you do NOT need follow up biopsies, UNLESS you are having troubles down the road. Depends on what you are looking for: Do you want a 100% diagnosis---a "gold standard" as they call it? Or are you going to go gluten free anyways? Do you want to keep eating gluten for another month (there is NO point to a biopsy if you are gluten free....once again, I learned....---I had a horribly misinformed doctor who has caused me much problems down the road because he knew nothing about Celiac). There are a lot of factors to consider....and depends on the type of doctor you have. Also, you might have positive bloodwork/negative biopsy (they might not biopsy the right places...celiac damage is PATCHY) and your doc might say, "you don't have it" --- which isn't necessarily true, at all!

Hope this helps. Let us know what else you need.

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Dear Maxdad,

I, too, started to feel amazingly better within 24 hours or so of cutting gluten from my diet. I was experiencing such bad bouts of nausea, vomiting, bloating, diarrhea, etc. almost daily and thought I was dying of something horrible and weird -- the doctors just hadn't told me what yet. But when I found Celiac info on the web, ON MY OWN, I immediately cut gluten and was amazed at the instantaneous relief! How in the world could something I had suffered with for so long, and so dramatically, be reversed so easily??! So the answer to your question, is YES, you can see results that quickly. But by the time I saw my doctor, several weeks later, and revealed my findings to him, he ordered blood work which I warned him would not be diagnostic since I had been gluten free for nearly a month. He was skeptical, so I did the blood work anyway, but sure enough, my levels were barely elevated. He suggested I go back on gluten for another test, and I left his office, never to return! Daily bouts of pain, vomiting and diarrhea weren't worth having a "confirmed" diagnosis. The Mayo Clinic website says that the absence of disease when on a gluten-free diet should be diagnostic of celiac disease in and of itself.

Good luck and let us know what your tests show.


Self-diagnosed and gluten free since August 2004 (having suffered debilitating bouts of nausea, vomiting, bloating, diarrhea and stomach pain for 6 years).

Met with Dr. A. Fasano in Baltimore (Dec 2006), who felt I didn't need to be tested based on my history and positive response to the gluten-free diet.

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Mitch,

It only took a day and a half for my symptoms to disappear. They have never come back. I don't know why you would want any more tests as you just passed what I consider the most important one. You have a positive diet response. If you don't want to believe it then you can go back to eating gluten and if you get sick enough you will probably get a positive result. I hope I never get another symptom the rest of my life. As far as the whiskey I cannot tell you whether or not it is alright. I have made it my mission in life to find and use only those things I know to be gluten free. Most of my alcohol has been gluten free spirits like rum or potato vodka or the gluten-free beers. I really only missed the beer and now I can enjoy it once again. I can appreciate your wanting to know for sure about whether or not you need to stay on the diet but I am pretty sure whatever you decide your body will let you know the result either way. Good luck.

Tom

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Mitch,

It only took a day and a half for my symptoms to disappear. They have never come back. I don't know why you would want any more tests as you just passed what I consider the most important one. You have a positive diet response. If you don't want to believe it then you can go back to eating gluten and if you get sick enough you will probably get a positive result. I hope I never get another symptom the rest of my life. As far as the whiskey I cannot tell you whether or not it is alright. I have made it my mission in life to find and use only those things I know to be gluten free. Most of my alcohol has been gluten free spirits like rum or potato vodka or the gluten-free beers. I really only missed the beer and now I can enjoy it once again. I can appreciate your wanting to know for sure about whether or not you need to stay on the diet but I am pretty sure whatever you decide your body will let you know the result either way. Good luck.

Tom

Thanks. I understand what you are saying about not needing a test beyond feeling better. But I think I would like something more "official," although I recognize that doesn't make much sense. And I had three Bushmill's Irish Whiskey (Black) tonight, and so far, no symptoms. Except for the spinning couch, I mean.

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maxdad,

on the contrary: to me and many others, it does make sense! it is easy to understand why you would want an official diagnosis!!!!!

whatever you do, we just want you to be better, whether it is gluten related or not!

Laura

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