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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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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
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    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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