Getting started

[ConnieSu]

Hello.  I have had nonstop diarrhea for four months, and suspects that based on my symptoms that I have celiac disease.  My primary doctor has thrown in the towel with this and referred me to a gastroenterologist, which I can’t get into see for two months.  I would like to try and determine if this is just a food intolerance or truly celiac disease.  Does anyone have a good way to go about doing this?  Are there any good DIY ways to do this?  I’ve tried doing this already, eliminating dairy and gluten, but not sure I gave it enough time to work, did I go about it correctly?  Any advice is welcome.

 

[trents]

Welcome to the forum, ConnieSu!

Normally, there are two stages in arriving at a celiac disease diagnosis.

The first stage is a blood test looking for antibodies produced by celiac disease. Celiac disease is an autoimmune reaction to gluten. When gluten is ingested, the immune system attacks the gluten as it is being absorbed by the villous lining of the small bowel. This is the portion of the digestive track where all of the nutrients from the food we eat is absorbed. This attack causes inflammation and damage to the lining of the small bowel. The attack produces certain antibodies that can be detected in the blood.

If the antibody testing is positive for celiac disease, the second stage of diagnosis is called for, namely, an endoscopy with a biopsy of the small bowel lining to look for the damage under a microscope. If the damage is bad enough, the GI doc doing the scoping can often spot it during the procedure.

Having explained that, what you need to know is that starting the gluten free diet ahead of the testing, either the blood test or the scoping/biopsy, will likely result in inaccurate testing, that is, false negatives because healing has begun to take place once gluten is withdrawn. Many people make this mistake but then can't go back on gluten because it makes them so ill. So, they find themselves in a Catch22 situation where they suspect they have celiac disease but the testing doesn't confirm it. So, if you have already begun eating gluten free you would need to go back to consuming significant amounts of it for a period of weeks. I think the most recent guidelines call for the daily consumption of three slices of wheat bread (or the equivalent, about 10gm of gluten) for at least two weeks leading up to the testing.

In addition to celiac disease there is also a gluten disorder known as NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity" for short. NCGS and celiac disease share many of the same symptoms. There is no test for NCGS. Celiac disease must first be ruled out. Both conditions call for lifelong elimination of gluten from the diet. NCGS is 10x more common than celiac disease. At the end of the day, the antidote for both conditions is the same: no more gluten!

[ConnieSu]

1 hour ago, trents said:

Welcome to the forum, ConnieSu!

Normally, there are two stages in arriving at a celiac disease diagnosis.

The first stage is a blood test looking for antibodies produced by celiac disease. Celiac disease is an autoimmune reaction to gluten. When gluten is ingested, the immune system attacks the gluten as it is being absorbed by the villous lining of the small bowel. This is the portion of the digestive track where all of the nutrients from the food we eat is absorbed. This attack causes inflammation and damage to the lining of the small bowel. The attack produces certain antibodies that can be detected in the blood.

If the antibody testing is positive for celiac disease, the second stage of diagnosis is called for, namely, an endoscopy with a biopsy of the small bowel lining to look for the damage under a microscope. If the damage is bad enough, the GI doc doing the scoping can often spot it during the procedure.

Having explained that, what you need to know is that starting the gluten free diet ahead of the testing, either the blood test or the scoping/biopsy, will likely result in inaccurate testing, that is, false negatives because healing has begun to take place once gluten is withdrawn. Many people make this mistake but then can't go back on gluten because it makes them so ill. So, they find themselves in a Catch22 situation where they suspect they have celiac disease but the testing doesn't confirm it. So, if you have already begun eating gluten free you would need to go back to consuming significant amounts of it for a period of weeks. I think the most recent guidelines call for the daily consumption of three slices of wheat bread (or the equivalent, about 10gm of gluten) for at least two weeks leading up to the testing.

In addition to celiac disease there is also a gluten disorder known as NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity" for short. NCGS and celiac disease share many of the same symptoms. There is no test for NCGS. Celiac disease must first be ruled out. Both conditions call for lifelong elimination of gluten from the diet. NCGS is 10x more common than celiac disease. At the end of the day, the antidote for both conditions is the same: no more gluten!

 

1 hour ago, trents said:

Welcome to the forum, ConnieSu!

Normally, there are two stages in arriving at a celiac disease diagnosis.

The first stage is a blood test looking for antibodies produced by celiac disease. Celiac disease is an autoimmune reaction to gluten. When gluten is ingested, the immune system attacks the gluten as it is being absorbed by the villous lining of the small bowel. This is the portion of the digestive track where all of the nutrients from the food we eat is absorbed. This attack causes inflammation and damage to the lining of the small bowel. The attack produces certain antibodies that can be detected in the blood.

If the antibody testing is positive for celiac disease, the second stage of diagnosis is called for, namely, an endoscopy with a biopsy of the small bowel lining to look for the damage under a microscope. If the damage is bad enough, the GI doc doing the scoping can often spot it during the procedure.

Having explained that, what you need to know is that starting the gluten free diet ahead of the testing, either the blood test or the scoping/biopsy, will likely result in inaccurate testing, that is, false negatives because healing has begun to take place once gluten is withdrawn. Many people make this mistake but then can't go back on gluten because it makes them so ill. So, they find themselves in a Catch22 situation where they suspect they have celiac disease but the testing doesn't confirm it. So, if you have already begun eating gluten free you would need to go back to consuming significant amounts of it for a period of weeks. I think the most recent guidelines call for the daily consumption of three slices of wheat bread (or the equivalent, about 10gm of gluten) for at least two weeks leading up to the testing.

In addition to celiac disease there is also a gluten disorder known as NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity" for short. NCGS and celiac disease share many of the same symptoms. There is no test for NCGS. Celiac disease must first be ruled out. Both conditions call for lifelong elimination of gluten from the diet. NCGS is 10x more common than celiac disease. At the end of the day, the antidote for both conditions is the same: no more gluten!

Thank you so much for the information.  I never thought about the fact that eliminating gluten would alter test results.  I’ll just have to be patient for appointment with gastroenterologist 

 

[trents]

16 minutes ago, ConnieSu said:

 

Thank you so much for the information.  I never thought about the fact that eliminating gluten would alter test results.  I’ll just have to be patient for appointment with gastroenterologist 

 

Not only do many potential celiacs not know that beginning gluten free eating ahead of testing can invalidate testing but many of their physicians do not know this or at least fail to warn their patients about it. Unfortunately, there is still a lot of ignorance within the medical community concerning gluten disorders.