Test results and question about gluten challenge

[cyclinglady]

I agree with Rancher’s wife.  It really sounds like your GI is not very celiac-savvy.  ☹️

[Keight]

On 9/30/2019 at 10:43 AM, Ranchers Wife said:

Maybe it's just me... but after all that you've been through, I would confirm that:

There were at least six biopsy samples from the duodenum sent to pathology

And

The biopsies shoe normal villous architecture according to the pathologist s magnified view

Before I would agree to more medical testing with this physician.

If it turns out that your doctor didn't take duodenal biopsy samples, don't go back! Is my advice. I'm not a doctor but if he's trying to diagnose or rule out Celiac by taking large intestine samples, he's not up on current Celiac diagnosis standards.

Agreed. All sounds rather confusing tbh. 

[chocolatesunrise]

I completely agree. It has been very confusing. I live in a pretty rural area so I don’t have many options as far as doctors. I could go to a larger city center but I checked and it will be months before I can be seen. I think my current doctor just isn’t well versed in celiac unfortunately. My daughter has a number of medical problems and I have had to take her out if area to find doctors that could diagnose and treat her. Even now, if she has a flare and we go to the ER locally I have to bring articles describing her problems and the doctors are always baffled. I’ve yet to find any around here that have even heard of her diagnosis!!  Crazy and super frustrating. This has been a very frustrating and futile few months. Not to mention expensive!  And I feel like I have no more answers now than before I started all this. 

[mYstummyHurt]

this is so disheartening and also my biggest fear of testing. ive been dismissed by doctors many times so i feel your pain. so sorry this is happening to you. im making a doctors appt today to begin testing for celiac disease but i already know im NOT eating gluten for 6 week, no friggin way. i just learned that gluten was causing these, what i call painful "trapped gas" attacks ive been getting, so theres no way in hell im eating more gluten for 6 weeks, just so they can tell me "never eat gluten again".

does anyone know if there are any other tests that dont include poisoning yourself for 6 weeks???

[cyclinglady]

2 hours ago, mYstummyHurt said:

this is so disheartening and also my biggest fear of testing. ive been dismissed by doctors many times so i feel your pain. so sorry this is happening to you. im making a doctors appt today to begin testing for celiac disease but i already know im NOT eating gluten for 6 week, no friggin way. i just learned that gluten was causing these, what i call painful "trapped gas" attacks ive been getting, so theres no way in hell im eating more gluten for 6 weeks, just so they can tell me "never eat gluten again".

does anyone know if there are any other tests that dont include poisoning yourself for 6 weeks???

Sorry, there are no tests for celiac disease that do not require you to be on a full gluten diet.  You can get genetic testing, but that just narrows down your odds since about 35% of population carries the genes that MIGHT develop into celiac disease.  That is a lot of people!  

While I am formally diagnosed with celiac disease (7 years), my hubby is not. He went gluten-free 18 years ago based (on what we know today) poor advice from my allergist and his GP.  The diet worked.  Does he have celiac disease for sure?  We will never know because, like you, he refuses to do the challenge.  Also, what nut would remain gluten free for almost 20 years if the diet did not work?

He will tell you that I get way more support from family, friends and medical staff.  My diagnosis makes it easy to get our kid periodically tested for celiac disease even though she is asymptomatic.  Having a diagnosis has made it easier for me.  My doctors do not hesitate to test for other autoimmune, and illnesses related to celiac disease like osteoporosis.  You also have to be dedicated to making the dietary changes.  It is hard.  Really hard, but doable.  

I hope this helps you make the right decision for you.  Research is your best defense.  

 

 

[mYstummyHurt]

51 minutes ago, cyclinglady said:

Sorry, there are no tests for celiac disease that do not require you to be on a full gluten diet.  You can get genetic testing, but that just narrows down your odds since about 35% of population carries the genes that MIGHT develop into celiac disease.  That is a lot of people!  

While I am formally diagnosed with celiac disease (7 years), my hubby is not. He went gluten-free 18 years ago based (on what we know today) poor advice from my allergist and his GP.  The diet worked.  Does he have celiac disease for sure?  We will never know because, like you, he refuses to do the challenge.  Also, what nut would remain gluten free for almost 20 years if the diet did not work?

He will tell you that I get way more support from family, friends and medical staff.  My diagnosis makes it easy to get our kid periodically tested for celiac disease even though she is asymptomatic.  Having a diagnosis has made it easier for me.  My doctors do not hesitate to test for other autoimmune, and illnesses related to celiac disease like osteoporosis.  You also have to be dedicated to making the dietary changes.  It is hard.  Really hard, but doable.  

I hope this helps you make the right decision for you.  Research is your best defense.  

 

 

that makes sense but also hard to swallow. ive only been gluten free for about 3 weeks but i did accidentally ingest gluten a couple times during this period. do you think they would still be able to do the blood test now without me having to get back on gluten??

OP, sorry for hijacking your thread.

[cyclinglady]

1 hour ago, mYstummyHurt said:

that makes sense but also hard to swallow. ive only been gluten free for about 3 weeks but i did accidentally ingest gluten a couple times during this period. do you think they would still be able to do the blood test now without me having to get back on gluten??

OP, sorry for hijacking your thread.

Yes....it is possible.  Just get back on gluten (eat something yummy!) and get the test.  You can even go to a walk in lab and make the request and pay cash/credit.   You probably would not need to do a 6 to 12 week gluten challenge since you were off for only three weeks.    Most celiacs take a long time to heal, but in theory some can heal in little as two weeks.  Rare, but possible.