Jump to content

  • Welcome to Celiac.com!

    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):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Seeking Advice On Scope Test Upcoming

Matty

Recommended Posts

Matty Rookie
Matty
Posted

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
GottaSki
Posted

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
Matty
Posted
  • Author

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
Deaminated Marcus
Posted

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
GottaSki
Posted

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.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    2. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    3. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.