Jump to content
  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Seeking Advice On Scope Test Upcoming


Matty

Recommended Posts

Matty Rookie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GottaSki Mentor

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 Rookie

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 Apprentice

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 Mentor

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.

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,082
    • Most Online (within 30 mins)
      10,442

    Joe B
    Newest Member
    Joe B
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...