Diagnosis after gluten-free for one year

[penguin11]

I have been gluten-free for almost a year now, and feel much better. However, I have not been diagnosed, and my physician recommends this. It would be nice to know for sure if celiac disease was the source of many issues that bugged me for 2/3 of my life. Also, it would be nice to know how careful I have to be regarding cc etc. Are there any other reasons why I should get a diagnose? Have anyone went gluten-free and only afterwards started eating gluten for 6 weeks to activate the celiac disease? How did it go, and are you happy you made this decision? 

[knitty kitty]

@penguin11,

Having a genetic test for the most common genes that cause Celiac Disease would be what I would choose if in your place. 

Granted, not every gene for Celiac Disease is known and simply having a gene for Celiac Disease does not mean the gene has been turned on.  However, improved health on a gluten free diet and having one or more of the commonly known Celiac Disease genes would be enough for some doctors to make the diagnosis of Celiac.

Doing an endoscopy (the "gold standard" for Celiac Disease) and  blood testing for antibodies specific to Celiac Disease would require going back on a gluten diet for several weeks or months which would cause more inflammation, malabsorption and damage to one's overall health.  Some people with Celiac Disease suffer even more severe reactions when they resume consuming gluten in their diets for testing.  Some people with Celiac Disease are serionegative (they don't produce enough antibodies to measure in blood tests).  Also, the intestinal damage looked for in endoscopy can easily be missed because the damage is microscopic and can be patchy.  

However having a "gold standard" diagnosis might be helpful for future medical reference, although this may cause higher costs in health insurance coverage.  

These are things you need to discuss with your doctor.  

When I began to suspect Celiac Disease, I tested serionegative for antibodies because I had developed vitamin and mineral deficiencies which can affect white blood cell (antibody) production as well as red blood cell production in anemia.  And due to severe reactions to gluten, I was unable to complete a gluten challenge for endoscopy.  Decades previously when my blood work showed high white cell counts, my doctor had dismissed the result as seasonal allergies and smoking, and did not investigate further.  He merely gave prescription medications to hide the symptoms and treat the cascade of health problems associated with untreated Celiac Disease and the resulting malnutrition.  My gastroenterologist dismissed my request for Celiac biopsies being taken because I didn't fit the "classic Celiac profile" of wasting away, starving, skinny.  The Inflammatory type of Celiac Disease resulting in edema and obesity is better known today than when I was seeking a diagnosis decades ago.  But still, in which other disease does the doctor tell a person to purposely hurt themselves more before he will begin looking and testing for a diagnosis?   Yes, I am scarred by the experience.   A doctor who was kindly and patiently humoring me agreed to do the genetic test.  He was extremely surprised when the genetic test results came back positive for TWO genes for Celiac Disease.  

I'm not a doctor.  These are my experiences with the diagnostic process.  

Discuss with your doctor the diagnostic process that is best for you.

Hope this helps!  Keep us posted on your journey!  Best wishes!

 

[penguin11]

1 hour ago, knitty kitty said:

@penguin11,

Having a genetic test for the most common genes that cause Celiac Disease would be what I would choose if in your place. 

Granted, not every gene for Celiac Disease is known and simply having a gene for Celiac Disease does not mean the gene has been turned on.  However, improved health on a gluten free diet and having one or more of the commonly known Celiac Disease genes would be enough for some doctors to make the diagnosis of Celiac.

Doing an endoscopy (the "gold standard" for Celiac Disease) and  blood testing for antibodies specific to Celiac Disease would require going back on a gluten diet for several weeks or months which would cause more inflammation, malabsorption and damage to one's overall health.  Some people with Celiac Disease suffer even more severe reactions when they resume consuming gluten in their diets for testing.  Some people with Celiac Disease are serionegative (they don't produce enough antibodies to measure in blood tests).  Also, the intestinal damage looked for in endoscopy can easily be missed because the damage is microscopic and can be patchy.  

However having a "gold standard" diagnosis might be helpful for future medical reference, although this may cause higher costs in health insurance coverage.  

These are things you need to discuss with your doctor.  

When I began to suspect Celiac Disease, I tested serionegative for antibodies because I had developed vitamin and mineral deficiencies which can affect white blood cell (antibody) production as well as red blood cell production in anemia.  And due to severe reactions to gluten, I was unable to complete a gluten challenge for endoscopy.  Decades previously when my blood work showed high white cell counts, my doctor had dismissed the result as seasonal allergies and smoking, and did not investigate further.  He merely gave prescription medications to hide the symptoms and treat the cascade of health problems associated with untreated Celiac Disease and the resulting malnutrition.  My gastroenterologist dismissed my request for Celiac biopsies being taken because I didn't fit the "classic Celiac profile" of wasting away, starving, skinny.  The Inflammatory type of Celiac Disease resulting in edema and obesity is better known today than when I was seeking a diagnosis decades ago.  But still, in which other disease does the doctor tell a person to purposely hurt themselves more before he will begin looking and testing for a diagnosis?   Yes, I am scarred by the experience.   A doctor who was kindly and patiently humoring me agreed to do the genetic test.  He was extremely surprised when the genetic test results came back positive for TWO genes for Celiac Disease.  

I'm not a doctor.  These are my experiences with the diagnostic process.  

Discuss with your doctor the diagnostic process that is best for you.

Hope this helps!  Keep us posted on your journey!  Best wishes!

 

Very informative and helpful advices. Thank you! 

[deanna1ynne]

We recently had to do this with my 8 yo. She’s been mostly gluten free since age 3, of her own volition. Just started refusing to eat bread, pasta, pizza, etc. We didn’t find out it hurt her until she was 7, and we didn’t think to have her tested for celiac until she was 8. It has not been fun to make her eat bread again, and we ended up testing after just 3.5 weeks of eating gluten again- her labs were already more than ten times the upper limit of normal. We haven’t verified yet with a biopsy, but I’m glad to know for sure. Also, knowing she has it spurred us to test all first degree relatives, and we discover two more of our children with positive lab results (one 3X the upper limit, and one 7X the upper limit.) We had no reason to test the other two children, but I’m do glad we did.