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

Endoscopy, Biopsy

voyager

Recommended Posts

voyager Rookie
voyager
Posted

Hi guy, I was diognosed 3 years ago and doing great. I alway thought my 20 yr old daughter had it but could not convince her to be tested, (not enough suffering I guess). We she finally went to her family doc who sent her to a gastroentrnoligist. She had her endoscopy today and the doc immediatly said it looked good villa looked normal, showed her pictures. I thought they had to be sent to the lab? Am I right or not? Then said, she still might have it.

She knows gluten-free makes her feel better and the doc said stick with it if it helps and gave her a list Gluten Free foods to eat. On this list was kellogs corn pops, cocoa pebbles and fruity pebbles, quaker puffed rice.

I do not need to tell you guys that that list is a bunch of bull for celiacs. DOES IT SOUND LIKE THIS DOC KNOWS NOTHING OF THIS ILLNESS , or am I missing something?

Help! Please! I want to steer my daughter straight!

Craig in Deltona FL

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

Fruity and Cocoa Pebbles are fine, but Corn Pops have malt and Quaker products are contaminated with wheat.

The villi may have looked fine to the naked eye, but there is still a chance that there is damage they will see on the biopsies under closer inspection ... they did take biopsies, right?

Ursa Major Collaborator
Ursa Major
Posted

Hi Craig, and welcome to this board. You're right in suspecting that this doctor is absolutely clueless about celiac disease. I don't believe all of the cereals he listed as gluten-free, actually are. And if he took the biopsy, I wouldn't trust him to biopsy the right spots, either, and it might very well come back a false negative.

The good thing is, that he encouraged your daughter to try the gluten-free diet. But it would be a very good idea for you to get her a list of foods that truly are gluten-free!

Check out the 'newbie survival kit' on Open Original Shared Link. You scroll down to the bottom to find the links. It will give you invaluable information, that would be very helpful to your daughter, and will save you the trouble of finding those lists.

voyager Rookie
voyager
Posted
  • Author

Yes, they did do the biopsy and they did send it off. I had no idea about fruity pebbles.... YOU JUST MADE MY DAY! I thought I was up on that. I will confirm first though, thanks!

Craig in Deltona fl

CarlaB Enthusiast
CarlaB
Posted
Yes, they did do the biopsy and they did send it off. I had no idea about fruity pebbles.... YOU JUST MADE MY DAY! I thought I was up on that. I will confirm first though, thanks!

Craig in Deltona fl

It's always good to read the box ... recipes change all the time! Just a couple months ago, Cocoa Puffs were gluten-free, but now they're not. :angry: But for now, Cocoa and Fruity Pebbles are. So are Dora the Explorer (cinnamon stars).

jerseyangel Proficient
jerseyangel
Posted

The changes in the villi are microscopic. Sometimes the doctor can see other changes that they feel are consistant with Celiac damage, but you don't know until the biopsy is read.

Even then, the biopsy can miss damage, as it's patchy. Also, a lot depends on the skill and experience of the tech who reads the slides.

The biopsy can rule it in, but not out. :)

Guest nini
Guest nini
Posted

I think most of those cereals USED to be gluten-free, but over the past few years the companies have changed the ingredients and some are not gluten-free anymore. Fruity Pebbles and Cocoa Pebbles are safe however.

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

Celiac.com Sponsor (A8-M):


Raenan Newbie
Raenan
Posted

Hi folks.. I may be another newly diagnosed Celiac. Doc wasn't quite positive from the blood tests he had done on me. I am being sent to see another doc about endoscopic test. (biopsy)

From my research I was under the impression I should eat as I normally do until after the biopsy.. yet the first doc said I should start on a gluten free diet right away. The receptionist at the docs office I am being sent to thought it was wierd that I was told to start the gluten-free diet also but figured I should listen to the first doc. Needless to say I am totally confused.

On another note.. did all of you people run out and buy yourselves new toothbrushes once you heard you were Celiac?? I was wondering because I see so much about needing new pots and pans and toasters etc. Yet no one has mentioned getting a new toothbrush.. or at least I hadn't come across such a post yet. (I am still rifling through the many posts on this board)

Another thing I am confused about.... what exactly are the symptoms I am supposed to be having?? :huh: And would I notice a difference in whatever they are very soon after starting a gluten-free diet??

nikki-uk Enthusiast
nikki-uk
Posted
From my research I was under the impression I should eat as I normally do until after the biopsy.. yet the first doc said I should start on a gluten free diet right away. The receptionist at the docs office I am being sent to thought it was wierd that I was told to start the gluten-free diet also but figured I should listen to the first doc. Needless to say I am totally confused.

You were right!! You need to keep eating gluten until after your biopsies otherwise any damage in your bowel could heal and you will get a 'false negative' result.

On another note.. did all of you people run out and buy yourselves new toothbrushes once you heard you were Celiac?? I was wondering because I see so much about needing new pots and pans and toasters etc. Yet no one has mentioned getting a new toothbrush.. or at least I hadn't come across such a post yet. (I am still rifling through the many posts on this board)

Once you go gluten-free it might be a good idea (good question!)

Another thing I am confused about.... what exactly are the symptoms I am supposed to be having?? :huh: And would I notice a difference in whatever they are very soon after starting a gluten-free diet??

Some people feel better immediately after cutting out gluten - and for others it takes a while.Everyones different I suppose :)

Here's a link to a Celiac.com symptom list

https://www.celiac.com/st_prod.html?p_prodi...-11106424525.10

Raenan Newbie
Raenan
Posted

Thanks Nikki,

I checked on that list of symptoms and I do have some of them... (a lot I have always attributed to as being part of my Fibromyalgia)

What set the doctor on the path to seeing if I had Celiacs was that he had just read a list of anything and everything I was treated or hospitalized for since I was born. (My Mum has kept track for all of us kids over the years .. and she had just given me a copy of mine)

I phoned his office yesterday to try and get a firm answer about the gluten-free eating before the test or not but have not received a reply as of yet. :(

Thanks again

Raenan Newbie
Raenan
Posted

Received a phone call back and I am to eat as I used to until the test. Am seeing the doctor on dec. 04 but am unsure if it is just to speak with me or to actually get the biopsy done.

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. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    2. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    3. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
    4. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    5. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748
    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
×
×
  • 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.