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

Mixed Information

Silliyak

Recommended Posts

Silliyak Newbie
Silliyak
Posted

Hi All

I'm getting blood work, an upper endoscopy and a colonoscopy on Thursday. My doctor told me to eat the equivilant of two slices of bread a day for a week. However, I've been doing some reading and it sounds more like you need to eat 4-6 slices a day... and for much longer than a week!

Has anyone else heard similar information from their doctor? I really don't want to go through all of the tests and have them turn out negative becase I didn't eat enough gluten prior to the tests.

BTW, before I began eating gluten for the test, I was about two weeks gluten free (with good results).

Thank you!!!

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

Celiac.com Sponsor (A8-M):


lovegrov Collaborator
lovegrov
Posted

Generally it should longer and it should be more than your doctor told you, but you also has been off gluten for just two weeks. If you have villi damage from celiac, I doubt it healed completely in that time.

richard

Silliyak Newbie
Silliyak
Posted
  • Author
Generally it should longer and it should be more than your doctor told you, but you also has been off gluten for just two weeks. If you have villi damage from celiac, I doubt it healed completely in that time.

richard

Thanks, Richard. We'll see how it goes! :unsure:

BostonCeliac Apprentice
BostonCeliac
Posted

Hey... just happened upong your thread & see you had this done last thursday! hope the procedures went OK!

When do you get results? or were they able to tell you anything then?

Silliyak Newbie
Silliyak
Posted
  • Author
Hey... just happened upong your thread & see you had this done last thursday! hope the procedures went OK!

When do you get results? or were they able to tell you anything then?

Yay!! Another Boston person! I really thought that being in Boston would give me some of the top doctors, but unfortunately I think I got a dud.

I ended up getting only the endoscopy because the doctor had a change in his schedule and couldn't do both. I don't remember a thing from the procedure, only waking up with a sheet of paper that said "gastritis" and that the biopsy results would be available in two weeks. Now, I was pretty out of it, but I don't remember a word being said to me regarding the procedure from the doctor or any nurses, which was disheartening.

I got some blood word done after the procedure (which makes me wonder if the sedative they put me on would affect the blood work) and took a reeeaaally long, wonderful nap when I got home.

I have never had heartburn, throughout this whole bout of intestinal distress, but the doc put me on prilosec.

Has anyone ever heard if gastritis (inflammation of the small intestine) can be a symptom of celiac?

BostonCeliac Apprentice
BostonCeliac
Posted
Yay!! Another Boston person! I really thought that being in Boston would give me some of the top doctors, but unfortunately I think I got a dud.

I ended up getting only the endoscopy because the doctor had a change in his schedule and couldn't do both. I don't remember a thing from the procedure, only waking up with a sheet of paper that said "gastritis" and that the biopsy results would be available in two weeks. Now, I was pretty out of it, but I don't remember a word being said to me regarding the procedure from the doctor or any nurses, which was disheartening.

Hey! YES -- I know what you're saying, I thought the same thing, since being in Boston we have all of these wonderful hospitals - I had a visit with my Gastro yesterday and posted about what happened in the Post Diagnosis Forum -- I don't think he even understands what celiac is!

FYI - I found out recently there is a Celiac Center at Beth Isreal...

Finally - I was totally out of it after my endo also - I kept asking the nurses the same questions (so they tell me after i was coming out of it) and ended up pretty loopy for the rest of the day.

And I found this comment in relation to your question:

"CONCLUSIONS: There is a high prevalence of lymphocytic gastritis in untreated celiac disease associated with elevated gastric permeability. Celiac disease seems to be a general disorder of the gastrointestinal tract associated with disturbed permeability."

Source: (Open Original Shared Link)

Someone else here might have a better answer for you though... good luck with the results!

Silliyak Newbie
Silliyak
Posted
  • Author
Hey! YES -- I know what you're saying, I thought the same thing, since being in Boston we have all of these wonderful hospitals - I had a visit with my Gastro yesterday and posted about what happened in the Post Diagnosis Forum -- I don't think he even understands what celiac is!

FYI - I found out recently there is a Celiac Center at Beth Isreal...

Finally - I was totally out of it after my endo also - I kept asking the nurses the same questions (so they tell me after i was coming out of it) and ended up pretty loopy for the rest of the day.

And I found this comment in relation to your question:

"CONCLUSIONS: There is a high prevalence of lymphocytic gastritis in untreated celiac disease associated with elevated gastric permeability. Celiac disease seems to be a general disorder of the gastrointestinal tract associated with disturbed permeability."

Source: (Open Original Shared Link)

Someone else here might have a better answer for you though... good luck with the results!

Thank you SO MUCH! One, for letting me know about Beth Israel. And two, for looking up the gastritis info. I attempted to search for gastristis info, but none of it was straight-forward. Knowing it can be linked is extremely helpful.

I'm going to go check out your post-diagnosis info. I'm sure it'll give me some insight on the whole process.

Oh, P.S. Your blog is awesome! I think you found a regular reader. :)

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

Celiac.com Sponsor (A8-M):


BostonCeliac Apprentice
BostonCeliac
Posted
Thank you SO MUCH! One, for letting me know about Beth Israel. And two, for looking up the gastritis info. I attempted to search for gastristis info, but none of it was straight-forward. Knowing it can be linked is extremely helpful.

Oh, P.S. Your blog is awesome! I think you found a regular reader. :)

haha - THANKS!! It's mainly a blog for Boston people & surrounding that are gluten free so I try to give good tips... I'll be switching it up a bit & giving it a new look soon!

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. knitty kitty
      - knitty kitty replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Dried Chickpeas

      Hello, @Aretaeus Cappadocia, My favorite source of B12 is liver. 😺 I react to nutritional yeast the same way as if I were glutened. Casein, a protein in dairy, and nutritional yeast have protein segments that match certain antigenic protein segments in gluten. The proteins in rice, corn (maize), and chicken meat have them as well. Some pe...
    2. trents
      - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people...
    3. ainsleydale1700
      - ainsleydale1700 replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

      Thank you, that is helpful!
    4. Scott Adams
      - Scott Adams replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its...
    5. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Dried Chickpeas

      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,434
    • Most Online (within 30 mins)
      7,748
    LexiBusch
    Newest Member
    LexiBusch
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Dried Chickpeas

      By knitty kitty · Posted

      Hello, @Aretaeus Cappadocia, My favorite source of B12 is liver.  😺 I react to nutritional yeast the same way as if I were glutened.  Casein, a protein in dairy, and nutritional yeast have protein segments that match certain antigenic protein segments in gluten.  The proteins in rice, corn (maize), and chicken meat have them as well.   Some people with Celiac might tolerate them without a problem, but I need to avoid them.  For those still having symptoms, cutting these out of our diet may improve symptoms. 
    • trents
      Confused about HLA-DQ Celiac gene test result

      By trents · Posted

      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
      Confused about HLA-DQ Celiac gene test result

      By ainsleydale1700 · Posted

      Thank you, that is helpful! 
    • Scott Adams
      Confused about HLA-DQ Celiac gene test result

      By Scott Adams · Posted

      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      Dried Chickpeas

      By Aretaeus Cappadocia · Posted

      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
×
×
  • 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.