Wwyd?

[NotMollyRingwald]

Good evening,

 

Last Friday, my PCP called to discuss the results of my blood work, indicating she wasn't 100% sure, but believes I "likely have Celiac."  I received a copy of the results today, and am not clear what they mean.  I've read a little on the internet, but the different types of tests have me confused...it looks like only two elements were checked, "deaminated gliadin transglutaminase IgA" and "deaminated gliadin IgA, Celiac."  The results were 8 and 451, respectively.  The chemistry panel returned normal results, with exception of the "Total protein" which was 7.6. 

 

When I was tested I had been avoiding gluten for 6 weeks already, and from what I have read, it's important to have gluten in the system for the tests to be accurate.  Is that right? 

 

My PCP referred me to a GI, who I will see in 4 more weeks (will be 12 weeks gluten-free by that time).  I'm assuming the GI will want to do a scope/biopsy to confirm damage to the intestine before rendering an official diagnosis.  Left up to choice, I guess I'd rather have it done than be left wondering. 

 

So the question then becomes, would you re-introduce gluten before the GI appt, or wait for the scope to be scheduled, or not do it at all?

 

Appreciate any perspective you are willing to provide.      

-Amy

[mushroom]

It would be helpful to have the ranges for the tests as well as the scores.  Did they do only two celiac tests or were only those two positive?

 

Yes, the GI will want to scope if you are positive, and yes, you really need to be eating gluten for all testing.  If the 451 score is for the DGP IgA (which it would appear) that is an awfully high score, reflecting potentially a lot of damage, so you could well test positive on biopsy even in the absence of gluten.  But since you seem to want certainty, and you have four weeks until your visit and possibly six weeks until your scope, if you do not suffer with it too much I would go back on the gluten.  Of course if you do suffer, you have your answer, whether celiac or not it won't matter much because you can't eat gluten.

[NotMollyRingwald]

It would be helpful to have the ranges for the tests as well as the scores.  Did they do only two celiac tests or were only those two positive?

 

Yes, the GI will want to scope if you are positive, and yes, you really need to be eating gluten for all testing.  If the 451 score is for the DGP IgA (which it would appear) that is an awfully high score, reflecting potentially a lot of damage, so you could well test positive on biopsy even in the absence of gluten.  But since you seem to want certainty, and you have four weeks until your visit and possibly six weeks until your scope, if you do not suffer with it too much I would go back on the gluten.  Of course if you do suffer, you have your answer, whether celiac or not it won't matter much because you can't eat gluten.

 

Thanks for the input.  I guess I didn't realize that there are different ranges for different tests...I'll call my PCP today and see if I can get the ranges, the document they faxed to me was rather unofficial (usually they send the results in letter format with the ranges and a note from the Dr.) so I assume the nurse only faxed the raw data. 

 

Additional question, does the higher than average protein cause significant concern?? I'm a fitness nut and have been doing a lot of heavy weight training for the past year, with a pretty strict diet focused on a 30% of my daily calories coming from protein.  Any connection?

[NotMollyRingwald]

It would be helpful to have the ranges for the tests as well as the scores.  Did they do only two celiac tests or were only those two positive?

 

The nurse called back and confirmed they only ran the two tests. The DGP IgA normal range is 70-400 (my reading was 451); the normal range for the DGP Transglutaminase IgA is 0-19 (my reading was 8).  The nurse further commented that the DGP IgA reading would decrease overtime as gluten is flushed from the system, so the fact that I was 6 weeks gluten-free makes her think my reading would have been much higher if we did the test 6 weeks ago. 

 

Now I'm REALLY wishing I would have insisted on the bloodwork before going gluten-free. 

[Gemini]

Thanks for the input.  I guess I didn't realize that there are different ranges for different tests...I'll call my PCP today and see if I can get the ranges, the document they faxed to me was rather unofficial (usually they send the results in letter format with the ranges and a note from the Dr.) so I assume the nurse only faxed the raw data. 

 

Additional question, does the higher than average protein cause significant concern?? I'm a fitness nut and have been doing a lot of heavy weight training for the past year, with a pretty strict diet focused on a 30% of my daily calories coming from protein.  Any connection?

Elevated protein counts can mean a number of things and have nothing to do with what you eat.  It can definitely mean the presence of an autoimmune condition and Celiac Disease

can raise blood protein levels.  Most doctors do not know this.  The reason I do know this is because mine were elevated from Celiac and having elevated protein levels will send a huge red flag up for doctors.  Now, please do not take this wrong but these results can indicate a blood cancer.  That does not mean you have blood cancer because I did not have blood cancer either and was sent to great hematologist who clarified a lot of this for me.  First time I had such an in depth and meaningful conversation with a doctor.  I even found written studies and evidence on the internet about elevated protein levels being caused by some autoimmune conditions, including celiac.

 

So, I had more blood testing done and she reassured me so nicely I had nothing to worry about.  Hematologist's offices are scary places because many patients do have blood cancers.

After she explained what the results meant, she said not to worry and that it should come back down to normal after awhile on the gluten-free diet.  I was 3 years post gluten-free by then and it still was a little elevated.  The window for normal is small for blood protein counts...it's usually like between 6-8 or 7-9.....only a couple of points.  It took another couple of years BUT it is in the normal range now.  I also have multiple autoimmune diseases so mine might have taken longer because of that.

 

This is all a long winded way of telling you that this might be an early indicator that you have something autoimmune going on.  Doctors only ever seem to look for cancer and scare the crap out of their patients and never look at the other conditions that might raise protein levels, so if they do this to you, remember what I've told you.  You must be having symptoms to suggest a gluten problem. Do you feel any better from your dietary trial?

 

Also, I am a little confused also on your testing.  Did they do a Total Iga?  If you do not make enough IgA, then you cannot be tested via blood work accurately.  This is an essential part of testing.  Some people are IgA deficient so blood work is out as a testing means.  It looks like your tTg Iga was 8, which most likely is normal and correlates to intestinal damage but you have a high number for your DGP IgA, which means you are reacting seriously to gluten in your blood stream.  So, if your total IgA is within normal range, meaning you make enough for testing, then these results, coupled with your elevated protein count points to a gluten problem.  What doesn't your doctor understand? 

 

I was screwed around for years by the AMA and I was a textbook Celiac.  I nearly died from it.  I educated myself on all this to a good degree because I don't want this to happen to others.

I am not an MD but know a lot about testing and related conditions.  Go see someone else but you need to be eating gluten for testing.  Even without positive biopsy, these blood results are very telling so don't let them blow you off.  If you have any more questions, I would be very happy to help if I can!

 

Keep up that weight training!  I also weight train and love it.  I am not doing it to bulk up but to gain muscle that I lost from celiac and to be fit.  I love it! 

[Gemini]

The nurse called back and confirmed they only ran the two tests. The DGP IgA normal range is 70-400 (my reading was 451); the normal range for the DGP Transglutaminase IgA is 0-19 (my reading was 8).  The nurse further commented that the DGP IgA reading would decrease overtime as gluten is flushed from the system, so the fact that I was 6 weeks gluten-free makes her think my reading would have been much higher if we did the test 6 weeks ago. 

 

Now I'm REALLY wishing I would have insisted on the bloodwork before going gluten-free. 

Ok...you posted before me!  If the DGP IgA is for total Iga, the nurse is correct.  My total Iga at diagnosis was just under 800 but has dropped significantly since going gluten-free.

[NotMollyRingwald]

Ok...you posted before me!  If the DGP IgA is for total Iga, the nurse is correct.  My total Iga at diagnosis was just under 800 but has dropped significantly since going gluten-free.

 

Gemini - thank you so much for all the info, especially the part about the potential "cancer" worries.  I'm a pretty even keel kinda person, but, absent this info, being blindsided by a cancer possibility, I might have freaked out.

 

I am also weight training for fitness and to replace the muscle I lost after years of not enough calories.  I love it!!

[NotMollyRingwald]

You must be having symptoms to suggest a gluten problem. Do you feel any better from your dietary trial?

 

Also, I am a little confused also on your testing.  Did they do a Total Iga?  If you do not make enough IgA, then you cannot be tested via blood work accurately.  This is an essential part of testing.  Some people are IgA deficient so blood work is out as a testing means.  It looks like your tTg Iga was 8, which most likely is normal and correlates to intestinal damage but you have a high number for your DGP IgA, which means you are reacting seriously to gluten in your blood stream.  So, if your total IgA is within normal range, meaning you make enough for testing, then these results, coupled with your elevated protein count points to a gluten problem.  What doesn't your doctor understand? 

 

Yes, I was having some symptoms that suggested trouble with gluten.  I was diagnosed with Fibromyalgia & IBS 10 years ago.  Managed all that with diet/exercise, until last Christmas, when my family caught an awful stomach virus...things went downhill from there.  Naivety (or good ole fashioned, unadulterated, denial) caused me to "just try taking gluten out for a couple weeks" (thinking I could just frg to see if it would help my bloating (most obvious, but not only, symptom).      LOL, anyway,  Finally sought the opinion of a Dr at week 6. 

[Gemini]

Just some added thoughts......Fibromyalgia and IBS are not a diagnosis.  These are a collection of symptoms that people get from underlying conditions, Celiac being one of them, so what doctors do today is put a label on a list of symptoms and then treat the symptoms...which does nothing for the underlying condition.

I firmly believe that all of this is caused by inflammation from eating gluten in many people.  If you have enough inflammation in your body, then you start to have symptoms that affect muscle, bone and other organs. It infuriates me that doctors do this because people never get better and end up on a boatload of meds. My other 3 autoimmune conditions are all a result of too much inflammation, caused by the root problem of Celiac.  My other conditions have all gotten much, much better just by going gluten-free.  I still have them but I manage them well 90% of the time.  I refuse to take meds.....not going down that road. I do have to take thyroid hormone for my Hashi's but that's it.  Just don't buy into what they tell you.  From what you posted here on this forum, I'd say you are a walking, talking case of Celiac.  Do whatever testing you feel necessary but make going strictly gluten-free a priority and be amazed at the results over time.  I have always bucked what the AMA does and have recovered well on my own.

 

I hate using the cancer word but you needed to know that Celiac can indeed raise blood protein levels.  That can be a red flag for Multiple Myeloma but I never for one minute believed I had that.  I just had this instinctual feeling that it was from Celiac and then did my research on it.  The info is out there if you look hard enough but doctors get all wiggy about elevated protein counts. Multiple Myeloma is one of the cancers that Celiacs can be prone to if you do not know you have Celiac and continue to eat gluten.  MM is an immune cancer so I hope that all makes sense to you.  They may do what's called an SPEP blood test.

Serum Protein Electrophoresis.  It looks for monoclonal cells, which would be cancer cells.  PLEASE do not worry because the odds are low that this is a problem.  Once you go strictly gluten-free, that protein level should resolve.  It did with me but it can take awhile.  These are all little clues that point to Celiac but doctors are trained to look for cancer.  Believe it or not, many do not know that Celiac can raise protein levels.

 

Good luck and please keep us updated.  I'd bet a week's pay you are Celiac so you are on the right road to finding out the trouble.

 

 

 

[NotMollyRingwald]

Just some added thoughts......Fibromyalgia and IBS are not a diagnosis.  These are a collection of symptoms that people get from underlying conditions, Celiac being one of them, so what doctors do today is put a label on a list of symptoms and then treat the symptoms...which does nothing for the underlying condition.

I firmly believe that all of this is caused by inflammation from eating gluten in many people.  If you have enough inflammation in your body, then you start to have symptoms that affect muscle, bone and other organs. It infuriates me that doctors do this because people never get better and end up on a boatload of meds. My other 3 autoimmune conditions are all a result of too much inflammation, caused by the root problem of Celiac.  My other conditions have all gotten much, much better just by going gluten-free.  I still have them but I manage them well 90% of the time.  I refuse to take meds.....not going down that road. I do have to take thyroid hormone for my Hashi's but that's it.  Just don't buy into what they tell you.  From what you posted here on this forum, I'd say you are a walking, talking case of Celiac.  Do whatever testing you feel necessary but make going strictly gluten-free a priority and be amazed at the results over time.  I have always bucked what the AMA does and have recovered well on my own.

 

I hate using the cancer word but you needed to know that Celiac can indeed raise blood protein levels.  That can be a red flag for Multiple Myeloma but I never for one minute believed I had that.  I just had this instinctual feeling that it was from Celiac and then did my research on it.  The info is out there if you look hard enough but doctors get all wiggy about elevated protein counts. Multiple Myeloma is one of the cancers that Celiacs can be prone to if you do not know you have Celiac and continue to eat gluten.  MM is an immune cancer so I hope that all makes sense to you.  They may do what's called an SPEP blood test.

Serum Protein Electrophoresis.  It looks for monoclonal cells, which would be cancer cells.  PLEASE do not worry because the odds are low that this is a problem.  Once you go strictly gluten-free, that protein level should resolve.  It did with me but it can take awhile.  These are all little clues that point to Celiac but doctors are trained to look for cancer.  Believe it or not, many do not know that Celiac can raise protein levels.

 

Good luck and please keep us updated.  I'd bet a week's pay you are Celiac so you are on the right road to finding out the trouble.

 Gemini - again, thank you for the valuable input!  Now that I've had about a week to digest (no pun intended, lol) all this, I would have to agree with you - Celiac is the root cause of so many of the random symptoms I have had for a long time (but never made the connection between).  I think it's time to just accept it and move on.     Hopefully, the healing has already begun, and I can get back to feeling "normal" again soon!

[Gemini]

Everyone always thinks that having to go gluten free means the end of good food or a really different diet.  Then, you start being gluten-free and can't imagine why you were so worried about it.  There are so many naturally gluten-free foods out there and they are the best way to eat anyway if you are working on fitness and weight training.  I don't need to tell you of the importance of eating more protein, you already know that, and protein can be prepared deliciously gluten-free.  Ditto for potatoes and rice, quinoa and a host of other good food.  Sauces can be made gluten-free quite easily, substituting rice flours for thickeners.  Desserts are easy also.  They even have gluten free Pop-Tarts that are very, very good. 

 

What you do lose is convenience.  You can no longer run out for Chinese food anywhere when there is no food in the house.  You can't get to the point where their is no food in the house, either.  But you will eat healthier and it will fuel your fitness goals.  You will feel better and, like myself, rarely get sick with all the other things that take out gluten eaters all the time.  I hardly ever get a cold anymore.  No aches and pains and I did have some doosies when I was sick.  Symptoms you had no idea were connected to gluten disappear over time and you just marvel in wonder that it affected you in so many ways.  If you do have cravings for something in particular, then let us know and we can help you find a great alternative or substitute.  I have been gluten-free for 8 years this month and cannot remember or have any desire to eat any other way, even if I had a choice.  And best of all, it keeps me out of the doctors office because I really don't like their methods.

 

You can also eat out at carefully selected restaurants and that number is growing every year.  So, really, don't sweat this.  It isn't that hard, once you get past the learning curve.