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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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    • NanceK
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      By NanceK · Posted

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
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      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
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      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
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