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Silliyak

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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!!!

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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. :)

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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!

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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