Is Anyone Here Really Knowledgeable In Interpreting Blood Test?

[JohnS]

Hi,

 

I think I have Celiac for a few years, though blood tests were back and forth.  I have cut out all gluten from my diet for several months and bloating still perisisted.  I have even tested myself by adding gluten back in for a while and there was never any difference, I felt the same, bloating was the same too.  But to be on the safe side I tended to be gluten free. 

 

Earlier this year I went on a pizza binge, have not had it in quite a while, must have eaten some a few times a week for a month.  Despite this I felt fine and my symptoms of bloating were same as always, never worse.  Bowel movements were acutally better because of the fiber I think.

 

Anyway, a month or two later I wake up one morning and both hands are kind of stiff, one much more than the other.  As usual I tend to ignore things that just start up and as always in the past they go away, but this one did not.  After a few weeks of this hand stiffness and swelling, which ended up being almost totally in one hand now, I go to my family doctor.  He runs these tests ESR, CRP, ANA and Lyme, all negative.  He said if I still had it to go to a rheumy.

 

A few weeks later, still the same I go to the Rheumy.  She runs a whole flock of tests, all neg, except ANA direct, that is positive, although the ANA where they dilute, was negative.  She says maybe I am coming down with something and gives me minocycline 100 mg, twice daily.   I start taking it and as I continue now I am getting worse, getting symptoms I did not have before, so thinking maybe drug is the problem go to another rheumy, she does the whole blood workup again and I have a number of issues now.   This one wants to put my on plaquenil.

 

I have some values that I need interpreted as whether they note that I have some rheumatic issue or whether they point to Celiac, since when I did a lookup on them Celiac shows up as a possibility too.  I do not want to be treated for a rheumatic illness when I shoud be treated for celiac instead.

 

 

Anyone think they can deciper the test results?  If so I will post.

 

John

[kareng]

Just a clarification - did you have the Celiac blood tests run? How long were you gluten free when they were run?

You need to be eating gluten for them to be positive ( simple explanation)

[JohnS]

Just a clarification - did you have the Celiac blood tests run? How long were you gluten free when they were run?

You need to be eating gluten for them to be positive ( simple explanation)

She ran a whole bunch of tests for immune issues, Celiac was part of them.  At the time I was not eating gluten, but had been earlier this year quite a bit.

[kareng]

If you want to put your Celiac panel results with reference ranges, we have many people who can help you. What did the doctor say? How long were you gluten free when they were run? They aren't valid if you haven't been eating gluten. That's not MY opinion, its a fact.

Open Original Shared Link

[JohnS]

If you want to put your Celiac panel results with reference ranges, we have many people who can help you. What did the doctor say? How long were you gluten free when they were run? They aren't valid if you haven't been eating gluten. That's not MY opinion, its a fact.

 

Open Original Shared Link

Maybe 2 months, cannot say 100% gluten free, may have been cross contamination, that is always a possibility.  I do not know what tests are specific to Celiac, they are lumped all together, just know when I checked one that was out of range, Transgultanase Ab  Iga =60.9, it referred to Celiac.  I have others too.

 

I do not want to be treated for a rheumatic disease when I do not have that, seems like the drug they gave me, ,minocycline is a problem drug from what I have read, it even causes Drug Induced Lupus.

[JohnS]

Here is another one, Saccharomyces cerevisiae Ab Iga = 50.4, anything over 20.1 is positive

[kareng]

Here is another one, Saccharomyces cerevisiae Ab Iga = 50.4, anything over 20.1 is positive

I'm back to what did your doctor say? Maybe you should see a GI doc? Isn't that test for Chron's? Maybe something else? Since you have a positive test for Chron's disease, you should talk to a GI. She didn't refer you to one?

Well...maybe someone has some knowledge of tests that don't relate to Celiac and can help you. Weekends can be a bit slow here.

[JohnS]

I'm back to what did your doctor say? Maybe you should see a GI doc? Isn't that test for Chron's? Maybe something else? Since you have a positive test for Chron's disease, you should talk to a GI. She didn't refer you to one?

Well...maybe someone has some knowledge of tests that don't relate to Celiac and can help you. Weekends can be a bit slow here.

She is a Rheumatologist, so naturally she looks at it from her speciality standpoint.  I just read something elsewhere where many people that are being treated for RA actually have Celiac and are being treated for the wrong disease.  This sounds like me, the antibiotic the other Rheumy gave me actually made my stomach worse and my symptoms and blood workup worse too.

 

Open Original Shared Link

[Lock]

I had mysterious swelling in my case it was usually my left leg. I also had joint pain and ANA that was positive, then later negative, then my rheumy said that may have been a false negative. He treated me with plaquenil among other things. I eventually stopped the plaquenil for fear it might damage my eyes. I was never officially diagnosed with a collagen vascular disorder but I had some signs. Morphea (scleroderma) changes in my skin, raynaud's (cold hands and feet that change colors) sjogren's (dry eyes and mouth) and other things that always came and went and never really showed up in blood tests as anything specific. If I understand correctly there is a statistical association between rheumatoid arthritis and celiac, or celiac and autoimmune disorders in general, such as autoimmune thyroid problems, diabetes type 1 which is an autoimmune attack on your pancreas, and so forth. They can coexist together. So, if you have celiac, that does not mean that you do not also have rheumatoid arthritis. However, like you, my feeling is that it is better to identify and treat the celiac than to just take symptom-controlling meds for the arthritis, and it is not at all clear you have RA. On the other hand, if you have joint swelling and inflammation, over time it can be very destructive to your joints. Treating RA is not just controlling pain, it is also about preventing severe joint damage. Yes, years of undiagnosed celiac may have caused the RA, but that doesn't mean the damage isn't real. If it were me however, I would not take plaquenil or methotrexate or prednisone or even NSAIDS unless you have x-ray evidence of your hands showing you are inclined to inflammatory damage (not just oestoarthitic changes.) Not to mention a positive serum rheumatoid factor. (I assume the first rheumy ran the RF and it was negative.) If you are celiac and have been for years, it is possible that you have many cross-reactivities to other foods in addition to gluten. It might be that even when you are off gluten, some other food, like dairy or soy, is causing your bloating. There are many things that could be going on, it is possible there is another digestive disorder instead of, or along with, celiac. The first rheumy did not do anything wrong, in fact, minocycline is a generally safe drug, but as you know there are risks, it is better not to stay on it indefinitely. Some rheumy's believe it has anti-inflammatory properties, but other controversial opinions are that inflammatory joints might have a microorganism as the cause. (There are many others besides the one that causes Lyme, and certainly some we've not identified yet.) But if it were me, instead of going to a second rheumy, I think it's time you saw a gastroenterologist. I think you are on the right track, it could be celiac at the root of this. If I understand what you posted, you had a high tissue transglutaminase? (could you post again with range?) That is suspicious for celiac disease and especially if you were restricting gluten. I assume your family doctor has not sent you to a gastro guy yet because you do not have marked improvement on a gluten free diet and not all your celiac panel was positive. But there are reasons you may not be improving on a gluten-free diet. First, there may be contamination issues and second, as I said above you may have cross sensitivities with other foods and then third, it might take a year or two to see improvement. I'm not a doctor and not very experienced with all of this yet, and still confused myself, but if you want to post all your blood test results, I could take a shot at them from what I'm learning these days?

[Lock]

 

I had mysterious swelling in my case it was usually my left leg. I also had joint pain and ANA that was positive, then later negative, then my rheumy said that may have been a false negative. He treated me with plaquenil among other things. I eventually stopped the plaquenil for fear it might damage my eyes. I was never officially diagnosed with a collagen vascular disorder but I had some signs. Morphea (scleroderma) changes in my skin, raynaud's (cold hands and feet that change colors) sjogren's (dry eyes and mouth) and other things that always came and went and never really showed up in blood tests as anything specific.If I understand correctly there is a statistical association between rheumatoid arthritis and celiac, or celiac and autoimmune disorders in general, such as autoimmune thyroid problems, diabetes type 1 which is an autoimmune attack on your pancreas, and so forth. They can coexist together.So, if you have celiac, that does not mean that you do not also have rheumatoid arthritis. However, like you, my feeling is that it is better to identify and treat the celiac than to just take symptom-controlling meds for the arthritis, and it is not at all clear you have RA. On the other hand, if you have joint swelling and inflammation, over time it can be very destructive to your joints. Treating RA is not just controlling pain, it is also about preventing severe joint damage. Yes, years of undiagnosed celiac may have caused the RA, but that doesn't mean the damage isn't real. If it were me however, I would not take plaquenil or methotrexate or prednisone or even NSAIDS unless you have x-ray evidence of your hands showing you are inclined to inflammatory damage (not just oestoarthitic changes.) Not to mention a positive serum rheumatoid factor. (I assume the first rheumy ran the RF and it was negative.)If you are celiac and have been for years, it is possible that you have many cross-reactivities to other foods in addition to gluten. It might be that even when you are off gluten, some other food, like dairy or soy, is causing your bloating. There are many things that could be going on, it is possible there is another digestive disorder instead of, or along with, celiac.The first rheumy did not do anything wrong, in fact, minocycline is a generally safe drug, but as you know there are risks, it is better not to stay on it indefinitely. Some rheumy's believe it has anti-inflammatory properties, but other controversial opinions are that inflammatory joints might have a microorganism as the cause. (There are many others besides the one that causes Lyme, and certainly some we've not identified yet.)But if it were me, instead of going to a second rheumy, I think it's time you saw a gastroenterologist. I think you are on the right track, it could be celiac at the root of this. If I understand what you posted, you had a high tissue transglutaminase? (could you post again with range?) That is suspicious for celiac disease and especially if you were restricting gluten. I assume your family doctor has not sent you to a gastro guy yet because you do not have marked improvement on a gluten free diet and not all your celiac panel was positive. But there are reasons you may not be improving on a gluten-free diet. First, there may be contamination issues and second, as I said above you may have cross sensitivities with other foods and then third, it might take a year or two to see improvement. I'm not a doctor and not very experienced with all of this yet, and still confused myself, but if you want to post all your blood test results, I could take a shot at them from what I'm learning these days?

 

Hmmm.... I had this all separated out in paragraphs. I must be doing something wrong with my settings.

[JohnS]

OK, thanks, I will get my blood tests together and post the relavent info.  Just to let you guys know, I have been to 4 GI docs since 2007 for my stomach issues.  I had the blood tests done and all have been borderline according to the docs, so I assumed it as a positive.  I had a biopsy done by one doc and he took over 11 samples and they did not find indication of that.  I am not loosing weight and my other blood values, including vitamins and mineral levels are all in good shape.  I tried gluten free for a year and felt no different.  I just don't know.  My rheumy took some blood tests and from what I can see, it indicates celiac but not any type of joint dieseases which is what she is treating me for, which is wrong.

 

PS.. I have an appt with Peter Green at Columbia, but the earliest I could get it was end of december, but I need a knowledgeable doctor now and all the ones I have seen know less   about Celiac than I do!  SO if anyone in the NYC area can recommend a good doc, please let me know since I need someone now, dont think I can wait until Dec.  THanks.

[JohnS]

OK, thanks, I will get my blood tests together and post the relavent info.  Just to let you guys know, I have been to 4 GI docs since 2007 for my stomach issues.  I had the blood tests done and all have been borderline according to the docs, so I assumed it as a positive.  I had a biopsy done by one doc and he took over 11 samples and they did not find indication of that.  I am not loosing weight and my other blood values, including vitamins and mineral levels are all in good shape.  I tried gluten free for a year and felt no different.  I just don't know.  My rheumy took some blood tests and from what I can see, it indicates celiac but not any type of joint dieseases which is what she is treating me for, which is wrong.

 

PS.. I have an appt with Peter Green at Columbia, but the earliest I could get it was end of december, but I need a knowledgeable doctor now and all the ones I have seen know less   about Celiac than I do!  SO if anyone in the NYC area can recommend a good doc, please let me know since I need someone now, dont think I can wait until Dec.  THanks.

 

If it were me however, I would not take plaquenil or methotrexate or prednisone or even NSAIDS unless you have x-ray evidence of your hands showing you are inclined to inflammatory damage (not just oestoarthitic changes.) Not to mention a positive serum rheumatoid factor. (I assume the first rheumy ran the RF and it was negative.

 

They did do x rays and no damage was found, also RH factor was 9, below 15 is OK.