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

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

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
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

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
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
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
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
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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748

    Patty6133
    Newest Member
    Patty6133
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.