Questioning Diagnosis

[1SharpPencil]

Hi,

I was diagnosed last Friday with celiac.  Although I am relieved to have a possible anser to my symptoms, I am filled with anxiety and overwhelmed with the implications at the moment.  And afraid to eat.  I am not sure if I am questioning the diagnosis because I am in denial or if I have legitimate reasons and hoped more experienced people could help me either ask for additional tests or accept what I need to do.

 

My family practitioner referred me to a GI for what we thought was IBS after it had become steadily worse even though my stress level had been greatly reduced.  15 years ago I was diagnosed with Acid reflux after vomiting daily for two years (another story, but there were repeated pregnancy tests involved before I got a doctor who listened).  I have continued to have stomache pain and nausea but never heart burn.  Lately, bloating, terrible gas, frequent sticky stools, fatigue and general misery making eating a scary endeavor. 

 

THe GI doc screened for thyroid issues and celiac to rule them out, but the celiac panel all came back postive.  I have the resutls to share.  The complication was that my total IgA was high as well, and she said that might indicate an untreated allergy and might be artificially raising all the celiac specific numbers.  I do have enviromental allergies and receive weekly shots as well as anti-histamines, but no food allergies.  These are the results:

total IgA 682  range 81--463

Tissue Transglutaminase AB, IgA 34 u/ml   lab says >4 is antibody detected

Gliadin (deamidated) AB (IgA) 57 units  lab says >20 is antibody detected

 

So, we did a biopsy.  She took 4 samples from the deudendum (sorry if that is a misspelling) and the results came back with normal villi.  I asked if there were ever negative biopsis with celiac because I did not want to eat gluten if it is what is making me sick and she said we could run the IgG panel just in case the biopsies missed the damage or were not read well.  She expected them to come back in normal limits and that the earlier positive diagnosis was due to high total IgA inflating everything.  But, they ran the full panel with IgG (I do not know what this means except that there were 3 tests, so I assume same as above only IgG based?) and they indicated celiac as well. 

 

Doctor says we could do a gluten challenge and re-biopsy, but she sees no reason and says instead we can go gluten free and check blood to see if it improves.  She is also having my biopsies re-evalutated to see if they missed something. 

 

I am reading so much since the diagnosis and so much says a positive biopsy is necessary for diagnosis.  COuld this be something else? 

[Gemini]

Hi,

I was diagnosed last Friday with celiac.  Although I am relieved to have a possible anser to my symptoms, I am filled with anxiety and overwhelmed with the implications at the moment.  And afraid to eat.  I am not sure if I am questioning the diagnosis because I am in denial or if I have legitimate reasons and hoped more experienced people could help me either ask for additional tests or accept what I need to do.

 

My family practitioner referred me to a GI for what we thought was IBS after it had become steadily worse even though my stress level had been greatly reduced.  15 years ago I was diagnosed with Acid reflux after vomiting daily for two years (another story, but there were repeated pregnancy tests involved before I got a doctor who listened).  I have continued to have stomache pain and nausea but never heart burn.  Lately, bloating, terrible gas, frequent sticky stools, fatigue and general misery making eating a scary endeavor. 

 

THe GI doc screened for thyroid issues and celiac to rule them out, but the celiac panel all came back postive.  I have the resutls to share.  The complication was that my total IgA was high as well, and she said that might indicate an untreated allergy and might be artificially raising all the celiac specific numbers.  I do have enviromental allergies and receive weekly shots as well as anti-histamines, but no food allergies.  These are the results:

total IgA 682  range 81--463

Tissue Transglutaminase AB, IgA 34 u/ml   lab says >4 is antibody detected

Gliadin (deamidated) AB (IgA) 57 units  lab says >20 is antibody detected

 

So, we did a biopsy.  She took 4 samples from the deudendum (sorry if that is a misspelling) and the results came back with normal villi.  I asked if there were ever negative biopsis with celiac because I did not want to eat gluten if it is what is making me sick and she said we could run the IgG panel just in case the biopsies missed the damage or were not read well.  She expected them to come back in normal limits and that the earlier positive diagnosis was due to high total IgA inflating everything.  But, they ran the full panel with IgG (I do not know what this means except that there were 3 tests, so I assume same as above only IgG based?) and they indicated celiac as well. 

 

Doctor says we could do a gluten challenge and re-biopsy, but she sees no reason and says instead we can go gluten free and check blood to see if it improves.  She is also having my biopsies re-evalutated to see if they missed something. 

 

I am reading so much since the diagnosis and so much says a positive biopsy is necessary for diagnosis.  COuld this be something else? 

 

Welcome to the club!  Yeah, not the kind of welcome you want but this is good that you got some results that would explain your symptoms.  One small thing to clarify the blood work......IgA total will be very high with untreated Celiac.  It has nothing to do with other allergies so not sure what the doctor means by that.  IgA is produced in the intestinal tract, which is where 80% of immune function is.  So, if you are eating wheat and don't know you have Celiac, your numbers will continue to climb until diagnosis and following a gluten-free diet.

 

My total IgA at diagnosis was well over 800 but has dropped down significantly after following the gluten-free diet for awhile.  Some people do not produce enough IgA to do blood work for a screen so they are IgA deficient.  The fact that your biopsy was normal does not mean anything other than you don't have enough damage yet for them to find or damage is in another area not checked by the biopsy.  Happens all the time.  The small intestine has a huge amount of surface area and missing damage is common.   Be thankful that this was caught in time so your intestine was not seriously trashed.

 

The Gold Standard of having a biopsy for diagnosis is changing with more sensitive blood tests coming out all the time.  Doctors still like to do them because they make a lot of money doing them....big motivator.  They also do not want to be sued by anyone who might accuse them of wrongful diagnosis......which is kind of crazy because once you go gluten-free, you will know whether they got this right or not.  Either you improve dramatically over time or you do not.  With those blood results you have, I would have no trouble diagnosing you Celiac if I had an MD after my name. 

 

Do not be afraid to eat.  There is so much you can have and you will start to feel better once you eliminate gluten from your diet.  Please read the Newbie thread as it's packed full of good information on how to get started.

[1SharpPencil]

Welcome to the club!  Yeah, not the kind of welcome you want but this is good that you got some results that would explain your symptoms.  One small thing to clarify the blood work......IgA total will be very high with untreated Celiac.  It has nothing to do with other allergies so not sure what the doctor means by that.  IgA is produced in the intestinal tract, which is where 80% of immune function is.  So, if you are eating wheat and don't know you have Celiac, your numbers will continue to climb until diagnosis and following a gluten-free diet.

 

My total IgA at diagnosis was well over 800 but has dropped down significantly after following the gluten-free diet for awhile.  Some people do not produce enough IgA to do blood work for a screen so they are IgA deficient.  The fact that your biopsy was normal does not mean anything other than you don't have enough damage yet for them to find or damage is in another area not checked by the biopsy.  Happens all the time.  The small intestine has a huge amount of surface area and missing damage is common.   Be thankful that this was caught in time so your intestine was not seriously trashed.

 

The Gold Standard of having a biopsy for diagnosis is changing with more sensitive blood tests coming out all the time.  Doctors still like to do them because they make a lot of money doing them....big motivator.  They also do not want to be sued by anyone who might accuse them of wrongful diagnosis......which is kind of crazy because once you go gluten-free, you will know whether they got this right or not.  Either you improve dramatically over time or you do not.  With those blood results you have, I would have no trouble diagnosing you Celiac if I had an MD after my name. 

 

Do not be afraid to eat.  There is so much you can have and you will start to feel better once you eliminate gluten from your diet.  Please read the Newbie thread as it's packed full of good information on how to get started.

Thank you for the kind reply.  I will head to the newbie thread because I do have more questions than answers at this point.  I feel like I am going through the classic stages of grief, and am in denial!  I keep trying to find reasons for the gluten anti-bodies to be high other than celiac and I think part of that is afraid to get my hopes up that I will feel better soon in case this is not correct.  Thank you again.

[Takala]

You have a wise doctor.  If you go gluten free and your antibodies drop, then you have your answer before your intestinal villi got really flattened and you suffered even more bad effects from the auto immune reaction.  Anxiety is a sign of celiac, so after you have been on a gluten free diet for a while, you should feel more comfortable with eating in general, because you should feel better, and not worse, after eating.

[1SharpPencil]

Thank you for the kind reply.  I will head to the newbie thread because I do have more questions than answers at this point.  I feel like I am going through the classic stages of grief, and am in denial!  I keep trying to find reasons for the gluten anti-bodies to be high other than celiac and I think part of that is afraid to get my hopes up that I will feel better soon in case this is not correct.  Thank you again.

 

Welcome to the club!  Yeah, not the kind of welcome you want but this is good that you got some results that would explain your symptoms.  One small thing to clarify the blood work......IgA total will be very high with untreated Celiac.  It has nothing to do with other allergies so not sure what the doctor means by that.  IgA is produced in the intestinal tract, which is where 80% of immune function is.  So, if you are eating wheat and don't know you have Celiac, your numbers will continue to climb until diagnosis and following a gluten-free diet.

 

My total IgA at diagnosis was well over 800 but has dropped down significantly after following the gluten-free diet for awhile.  Some people do not produce enough IgA to do blood work for a screen so they are IgA deficient.  The fact that your biopsy was normal does not mean anything other than you don't have enough damage yet for them to find or damage is in another area not checked by the biopsy.  Happens all the time.  The small intestine has a huge amount of surface area and missing damage is common.   Be thankful that this was caught in time so your intestine was not seriously trashed.

 

The Gold Standard of having a biopsy for diagnosis is changing with more sensitive blood tests coming out all the time.  Doctors still like to do them because they make a lot of money doing them....big motivator.  They also do not want to be sued by anyone who might accuse them of wrongful diagnosis......which is kind of crazy because once you go gluten-free, you will know whether they got this right or not.  Either you improve dramatically over time or you do not.  With those blood results you have, I would have no trouble diagnosing you Celiac if I had an MD after my name. 

 

Do not be afraid to eat.  There is so much you can have and you will start to feel better once you eliminate gluten from your diet.  Please read the Newbie thread as it's packed full of good information on how to get started.

Umm, Newbie question, but where is the Newbie thread?

[1SharpPencil]

You have a wise doctor.  If you go gluten free and your antibodies drop, then you have your answer before your intestinal villi got really flattened and you suffered even more bad effects from the auto immune reaction.  Anxiety is a sign of celiac, so after you have been on a gluten free diet for a while, you should feel more comfortable with eating in general, because you should feel better, and not worse, after eating.

I am looking forward to the possibility of not associating food with pain.  Thanks!

[kareng]

Umm, Newbie question, but where is the Newbie thread?

Good question!

https://www.celiac.com/forums/topic/91878-newbie-info-101/page-2#entry851855