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Endoscopy, Biopsy

voyager

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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

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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.

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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.

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