Seeking Advice On Scope Test Upcoming

[Matty]

Hi all,

 

I will try to make this quick, but I could really use some advice from thos here about what I should do leading up to a scope test in a few weeks.

 

So long story short, I saw my family doctor oh about a month ago and told him about my (getting now) severe GI issues. The painful bloating, the frequent loose stools/diarrhea that was having me now run to the bathroom after almost every meal. The dehydration, almost complete health declince etc. You get the point...

 

Anyways he did a blood test for Celiac, referred me to a GI specialist (I live in Canada), and advised me to cut out gluten while I wait for that appt. Well that appt. (because our health system rocks!) was 8 months out. Hesitant to go gluten free, because I want a diagnosis!, I did knowing I couldn't wait 8 months.

 

Well its been a few weeks and the bloating has almost completely subsided, my bowel movements are a lot less frequent and "some" better as well. I still feel like I could die at any point (become that unhealthy) but I do feel like together with the gluten free, sublingual vitamin supplements and better sleeps might be finally starting me on the healing path. Don't feel that much better but enough to notice.

 

So here's my conondrum:

 

Yesterday the GI Specialist Office called and said we have an appt. for June 3rd for a scope.

 

Now dealing with various health issues for years, I feel like I need a diagnosis. To put some closure to this. I'm fairly confident NOW that i have it nailed down (despite negative Celiac tests genetic testing has shown I have HLA DQ1). But I want a doctor to see it for himself and tell me.

 

My concern is continuing to go gluten free will allow me to heal and the scope will be inconclusive, allowing more doubt to creep in.

 

So should I have gluten leading up to the test? What would you do in my situation?

 

Thanks all in advance.

[GottaSki]

Welcome Matty!

 

It is great that your appt moved up.  It does present a problem as you have already removed gluten.

 

Which Celiac Disease Antibody tests were run? 

 

Were any nutrient blood tests run?

 

Exactly how long have you been gluten-free and has it been strict?

 

Most major Celiac Centers recommend 1/2 - two slices of glutenous bread per day for 6-12 weeks -- 12 is better.  That being said -- if you can tolerate it -- perhaps eat a sandwich for a snack late in the day -- each day until you appt.  If you do this and become substantially sicker -- document it and talk to the GI about it.

 

Hang in there -- sounds like you are on the right path to improve your health

[Matty]

Welcome Matty!

 

It is great that your appt moved up.  It does present a problem as you have already removed gluten.

 

Which Celiac Disease Antibody tests were run? 

 

Were any nutrient blood tests run?

 

Exactly how long have you been gluten-free and has it been strict?

 

Most major Celiac Centers recommend 1/2 - two slices of glutenous bread per day for 6-12 weeks -- 12 is better.  That being said -- if you can tolerate it -- perhaps eat a sandwich for a snack late in the day -- each day until you appt.  If you do this and become substantially sicker -- document it and talk to the GI about it.

 

Hang in there -- sounds like you are on the right path to improve your health

 

Thanks for the reply Lisa I really appreciate it.

 

I'm sorry but I can't recall which tests were run, there were three of them though I believe.

 

Vitamin D tests have been very low and despite taking tabs has continued to be low its a real problem. Also B12 that he told me anyways...

 

I've been gluten free since April 16th to be exact. And I feel I've been very strict, a lot of raw foods, otherwise significant label checking. Haven't slipped once (that I know of anyways).

 

I am confident its removed my bloating (looked 9 months pregnant after any bread before), and my stools are far better (sometimes I even get constipated now!). My health however has only slightly improved if that, despite taking large doses sublingual vitamin D/B12, liposomal vitamin C and liosomal calmag together with cutting out gluten.

[Deaminated Marcus]

Hi Matt,

 

Some might not agree, but I think it's worth to suffer now by eating bread and to get your problem investigated properly by the GI.

 

You could also have another condition with or without Celiac that causes similar symptoms.

 

Will you be having a consultation with the GI doctor first or are you just gettting the endoscopy?

 

Is the GI doctor also doing a colonoscopy?

 

Was the blood test positive?

[GottaSki]

Thanks for the reply Lisa I really appreciate it.

 

I'm sorry but I can't recall which tests were run, there were three of them though I believe.

 

Vitamin D tests have been very low and despite taking tabs has continued to be low its a real problem. Also B12 that he told me anyways...

 

I've been gluten free since April 16th to be exact. And I feel I've been very strict, a lot of raw foods, otherwise significant label checking. Haven't slipped once (that I know of anyways).

 

I am confident its removed my bloating (looked 9 months pregnant after any bread before), and my stools are far better (sometimes I even get constipated now!). My health however has only slightly improved if that, despite taking large doses sublingual vitamin D/B12, liposomal vitamin C and liosomal calmag together with cutting out gluten.

 

So only three weeks -- I would eat at least one slice of glutenous bread per day -- maybe a grilled cheese every evening --- if you can have dairy

 

It is important to give all the tests their best chance for accuracy and unfortunately as barbaric as it sounds --- that means ingesting gluten right up until the endoscopic biopsies are taken.

 

Not all GIs are Celiac Disease Specialists so take a complete written list of your symptoms and what improved off gluten along with a list of all blood work needed:

 

Total Serum IgA

tTG - both IgA and IgG

EMA - IgA

DGP - both IgA and IgG

 

B1, B2, B6, B12, D, K, Iron, Ferritin, Copper, Zinc

 

CMP - Complete Metabolic Panel

 

CBC - Complete Blood Count

 

If you want a fast forward -- perhaps ask your primary to run all these so you have the results for your upcoming appointment with GI.