Gluten-free Diet Effect Other Tests?

[sparrow]

I took some advice from "ravenwoodglass" and called the original dr. that ordered the original bloodwork with high ANAs...she immediately ordered the celiac panel. Had blood drawn Mon. and had results back Thursday -- negative. ?? So I still have an appt with the rheum. Do I make an appt also with a GI or just wait until I see the rheum.? That appt is on the 24th of Nov. unless they get a cancellation b/n now and then. Do I still need an endoscopy? Or is the neg. bloodwork where it ends? And btw, I had the nurse read me the results to see if I had anything borderline...nothing seemed borderline. All read clearly negative from what she said. She's mailing me copies of all the bloodwork so can have it and take it with me when I go to other drs. I can accept not being celiac, but am still not convinced that I'm not gluten intolerant.

If I am gluten intol, does that mean that this intolerance may cause other autoimmune diseases (say for instance they determine that I have lupus) couldn't the gluten intol. possibly be the root problem? I'm so tempted to try the gluten free diet but am afraid it may skew the other test results that the rheum. is most definately going to order. If I have an autoimmune disease or something, couldn't a gluten free diet help it, thus making it harder to pinpoint and diagnose? Can I try the diet b/n now and then (nov. 24th) and then switch back a week before appt? I am so tired of feeling this way....

Any thoughts?

[Wolicki]

blood tests are frequently false negative. If you choose to have an endoscopy, stay on gluten until then, otherwise the results get skewed. From what I've read, ANAs can be elevated when you have inflamation. It doens't necessartily mean a rheumatological problem. I was misdiagnosed wtih Lupus 10 years ago because of elevated ana's. It was Celiac all along.

[ravenwoodglass]

The only tests being gluten free effect are the ones for celiac. If you are not planning on the endo for diagnosis you don't have to wait to try the diet.

[sparrow]

Thanks for the thoughts... So, you don't think that going gluten free will effect those other tests/bloodwork even if gluten is the root problem? I'm wondering if I have another autoimmune disease because of gluten intolerance. ?? My friend who has already been thru this process thinks that maybe since my ana's were high (1:640), then going gluten free may not have such a dramatic effect on them in this short of time frame (4 weeks or less), therefore maybe not skewing the results...I just don't want to have more false negatives if something else is wrong...

I know I'm sort of asking the same thing again...just want to make sure I'm clear and making the right decision...

I'm also thinking of calling rheum.'s nurse, but doubt they'll be familiar with the whole gluten world....since that's not their specialty...

And, I also think I'll wait on the endoscopy....I don't want to wait that long to start this diet and I think that if my blood tests were clearly in the negative, then the biopsy is highly unlikely to come out positive, right?

Sorry for being all over the place with my thoughts....

[sparrow]

blood tests are frequently false negative. If you choose to have an endoscopy, stay on gluten until then, otherwise the results get skewed. From what I've read, ANAs can be elevated when you have inflamation. It doens't necessartily mean a rheumatological problem. I was misdiagnosed wtih Lupus 10 years ago because of elevated ana's. It was Celiac all along.

Were your ana's speckled, by chance? Mine were 1:640, speckled...

[ravenwoodglass]

Thanks for the thoughts... So, you don't think that going gluten free will effect those other tests/bloodwork even if gluten is the root problem? I'm wondering if I have another autoimmune disease because of gluten intolerance. ?? My friend who has already been thru this process thinks that maybe since my ana's were high (1:640), then going gluten free may not have such a dramatic effect on them in this short of time frame (4 weeks or less), therefore maybe not skewing the results...I just don't want to have more false negatives if something else is wrong...

I know I'm sort of asking the same thing again...just want to make sure I'm clear and making the right decision...

I'm also thinking of calling rheum.'s nurse, but doubt they'll be familiar with the whole gluten world....since that's not their specialty...

And, I also think I'll wait on the endoscopy....I don't want to wait that long to start this diet and I think that if my blood tests were clearly in the negative, then the biopsy is highly unlikely to come out positive, right?

Sorry for being all over the place with my thoughts....

The only tests being gluten free will effect is tests for celiac. IMHO if your ANA levels go down then celiac was causing the elevation to begin with. But if you do have another autoimmune issue going on that was not caused directly by celiac disease then being gluten free is not going to effect those test results. I would give the diet a shot. You may find, and I will keep my fingers crossed on this one, that many of your issues resolve or improve before you even make it to the rheumy next month. While you don't want to have an additonal issue missed you also don't want to have a diagnosis of another autoimmune issue based on symptoms that are in reality part of the celiac effects.

[sparrow]

The only tests being gluten free will effect is tests for celiac. IMHO if your ANA levels go down then celiac was causing the elevation to begin with. But if you do have another autoimmune issue going on that was not caused directly by celiac disease then being gluten free is not going to effect those test results. I would give the diet a shot. You may find, and I will keep my fingers crossed on this one, that many of your issues resolve or improve before you even make it to the rheumy next month. While you don't want to have an additonal issue missed you also don't want to have a diagnosis of another autoimmune issue based on symptoms that are in reality part of the celiac effects.

Thanks! Couple of questions...first, what is IMHO? I'm not so up to speed. Also, when you say "celiac disease/effects", is that interchangeable with "gluten intolerance, for practical purposes? For instance, I could possibly not have celiac's and only be gluten intolerant, but it's still just as bad except my sm. intestines may not be getting destroyed...yet?? So if the diet works, then I can assume that I am gluten intolerant and/or have celiac's or am on my way to having celiac's one day?....And therefore need to mentally be aware of that fact so that I have greater resolve? Right?

And if there is another autoimmune issue going on, then it's just another problem, thriving on it's own now?

Thanks so much for the help. I really appreciate you being patient with all my questions!

[ravenwoodglass]

Thanks! Couple of questions...first, what is IMHO? I'm not so up to speed. Also, when you say "celiac disease/effects", is that interchangeable with "gluten intolerance, for practical purposes? For instance, I could possibly not have celiac's and only be gluten intolerant, but it's still just as bad except my sm. intestines may not be getting destroyed...yet?? So if the diet works, then I can assume that I am gluten intolerant and/or have celiac's or am on my way to having celiac's one day?....And therefore need to mentally be aware of that fact so that I have greater resolve? Right?

And if there is another autoimmune issue going on, then it's just another problem, thriving on it's own now?

Thanks so much for the help. I really appreciate you being patient with all my questions!

IMHO translates to 'in my humble opinion'. I am one of those folks that feel that celiac and gluten intolerance are basically the same thing. At times the antibodies will choose to attack other organs before the gut. That can seem to apply to just about every organ. As far as other autoimmune issues go it does seem that having one autoimmune issue makes you prone to have others. You could have other autoimmune issues in additon to celiac. Or, as was the case with myself, you may see the other autoimmune stuff go into 'remission' once the celiac is diagnosed. In which case the question remains as to whether they were independant issues or just offshoot effects of the celiac. I personally consider them to be the later, at least as far as my personal experience is concerned.

[sparrow]

IMHO translates to 'in my humble opinion'. I am one of those folks that feel that celiac and gluten intolerance are basically the same thing. At times the antibodies will choose to attack other organs before the gut. That can seem to apply to just about every organ. As far as other autoimmune issues go it does seem that having one autoimmune issue makes you prone to have others. You could have other autoimmune issues in additon to celiac. Or, as was the case with myself, you may see the other autoimmune stuff go into 'remission' once the celiac is diagnosed. In which case the question remains as to whether they were independant issues or just offshoot effects of the celiac. I personally consider them to be the later, at least as far as my personal experience is concerned.

Thank you so much for your help!! You have been a great resource!! I'll be starting the diet soon and will post as to how it's going....