Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

She's Still Saying I Need A Colonoscopy!

TrillumHunter

By TrillumHunter
in Doctors

Recommended Posts

TrillumHunter Enthusiast
TrillumHunter
Posted

Okay, so second follow up with APN I originally convinced to test me for celiac disease. She is still saying I might need a colonoscopy despite me correcting her and giving her literature about it. I said today, "NO, I would need an endoscopy. They would need to biopsy the small intestine. Her answer--"Oh but an endoscopy only looks at the duodenum!" Well, duh!? Isn't that where many of us have damage! I've had pernicious anemia for 13 years!! I've been severely iron def for six! Anyone here think I might have some damage in my duodenum? GRRRR! She is just absolutely clueless--really! I am not having either test anyway as I am showing great improvement going gluten-free.

Thanks for listening! :rolleyes:

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

Celiac.com Sponsor (A8-M):


kbtoyssni Contributor
kbtoyssni
Posted

Add her to the list of doctors that don't have a clue! Luckily you've done your research so you don't trust your health to her and her limited knowledge of celiac.

Michi8 Contributor
Michi8
Posted

I'm surprised she's not suggesting both an colonoscopy and a gastroscopy (endo), because there is value in checking the colon too...especially if she's trying to rule out any other potential health issues related to the GI tract. But to not suggest gastroscopy at all makes no sense!

If you're having good sucess with the diet, then you're right that there is no reason to do either procedure.

Michelle

ravenwoodglass Mentor
ravenwoodglass
Posted
Okay, so second follow up with APN I originally convinced to test me for celiac disease. She is still saying I might need a colonoscopy despite me correcting her and giving her literature about it. I said today, "NO, I would need an endoscopy. They would need to biopsy the small intestine. Her answer--"Oh but an endoscopy only looks at the duodenum!" Well, duh!? Isn't that where many of us have damage! I've had pernicious anemia for 13 years!! I've been severely iron def for six! Anyone here think I might have some damage in my duodenum? GRRRR! She is just absolutely clueless--really! I am not having either test anyway as I am showing great improvement going gluten-free.

Thanks for listening! :rolleyes:

Short and sweet, you need another doctor as this one is clueless (I thought of many other words to use but they are not very nice). Glad to hear you are having good results from the diet that is the most important thing. I do hope you are taking some sublingual B12 on a daily basis that is going to be really important for your healing.

bakingbarb Enthusiast
bakingbarb
Posted

I have to ask, why is the endoscopy important?

Michi8 Contributor
Michi8
Posted
I have to ask, why is the endoscopy important?

It provides a visual check of how the small intestine looks, and biopsies can be taken to check for villous atrophy. A positive biopsy is considered the "gold standard" for diagnosing celiac disease. However a positive blood test should be enough for diagnosis, as should dietary response.

Michelle

Guest j_mommy
Guest j_mommy
Posted

I did the colonoscopy and endo at teh same time!!! Much easier!!!! WE have a history of pulps in my family so they wanted to do both and get a good look at it all!!!!

An endo is the gold standard for DX!!! But all you need is a positive blood test...I wanted to know for sure so I had the endo!

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

Celiac.com Sponsor (A8-M):


Phyllis28 Apprentice
Phyllis28
Posted

I wanted to make sure I did not get a clueless GI when I needed a routine screening colonscopy at 50. I contacted the local Celiac Support Group. They provided me with serveral names. I also, looked on the sites of the two university teaching hospitals within driving distance. The sites had a page for each doctor with their education, backround and interests.

I chose one of the GI's recommended by the local Celiac Support Group. He is on staff at the local University teaching hospital. He was very knoweglable about Celiac.

  • 2 weeks later...
miles2go Contributor
miles2go
Posted
Okay, so second follow up with APN I originally convinced to test me for celiac disease. She is still saying I might need a colonoscopy despite me correcting her and giving her literature about it. I said today, "NO, I would need an endoscopy. They would need to biopsy the small intestine. Her answer--"Oh but an endoscopy only looks at the duodenum!" Well, duh!? Isn't that where many of us have damage! I've had pernicious anemia for 13 years!! I've been severely iron def for six! Anyone here think I might have some damage in my duodenum? GRRRR! She is just absolutely clueless--really! I am not having either test anyway as I am showing great improvement going gluten-free.

Thanks for listening! :rolleyes:

Hi TrillumHunter,

I don't know your age or insurance status and like everyone else here, have been through the slew of doctors who don't know very much at all about celiac, but I've had a few who did. Celiacs are at a higher risk for lymphoma in the intestinal tract and for that reason alone, I wish you'd reconsider. Certainly an endoscopy is in order and I had both at the same time. My doc didn't have a clue, but I'm a comp-care insuree, so I can tell them what I want and they have to comply, much as they might not like to. Additionally, I've been to the doctors so much this year that it was a freebie for me, okay not really, but you know what I mean. ;) When my doctor ordered my colonoscopy, I asked for the endoscopy at the same time and gave her my reasoning for it, as I'm wondering if I have refractory sprue. She got this pinched look when I started explaining things, was going to send me to a general surgeon and then said that she'd refer me to a specialist instead. When I got the call for my appointment, I was told that no endoscopy had been ordered and after we got over that hurdle, things didn't get much better. My GI knows nothing about my diet, I woke up during the procedure in excrutiating pain for only about 20 seconds, until they gave me more anaesthesia and sure, it's no day at the beach. But, I now know what's going on in my insides - more when I get the biopsy test results, was a (very) little sore for a couple of days afterwards, know that some of my doctors are uneducated, but hey, I try to be and that's all that matters. My mom certainly has it right, you are your primary health-care provider and everyone else is secondary. For all the uneducated medical professionals out there, I find myself reminding myself that they are after all, just people too. We are the ones who know what's going on with us and it's our responsibility to maintain our health. So after all that soap-boxy stuff, if you don't think you need "the procedure", don't have it, but it sure is nice knowing. And the bit about "returning the air" is enough for a week's worth of comic relief, if nothing else. :)

Bestest,

Margaret

gfpaperdoll Rookie
gfpaperdoll
Posted

Trillium Hunter, good for you!!! With that anemia I would not be having a scope done period.

I also suggest you start taking the sublingual B12 right away.

Happy to hear you are improving on the gluten-free diet !!!

I had pernicious anemia which they thought was leukemia, not...

miles2go Contributor
miles2go
Posted

Why wouldn't you have a scope done?

  • 3 months later...
scotty Explorer
scotty
Posted

alright i will show my ignorance here too...why would you not want a colonoscopy? and what is the difference btween a endoscope and an gastroscope? i had an endoscopy and results were "fine" but celiac was never discussed in fact i was not aware of it yet, i'm wondering though should i have a gasrtoscopy now after 8 months, should i have a colonoscopy as well, will these tell me anything? i though they could get farther in the intestines from the other end....and was the better test for celiac---i was right about to call the GI spec. to set up my colonoscopy too...cuz i got to figure out if i am really fighting the gluten or what here

Michi8 Contributor
Michi8
Posted
alright i will show my ignorance here too...why would you not want a colonoscopy? and what is the difference btween a endoscope and an gastroscope? i had an endoscopy and results were "fine" but celiac was never discussed in fact i was not aware of it yet, i'm wondering though should i have a gasrtoscopy now after 8 months, should i have a colonoscopy as well, will these tell me anything? i though they could get farther in the intestines from the other end....and was the better test for celiac---i was right about to call the GI spec. to set up my colonoscopy too...cuz i got to figure out if i am really fighting the gluten or what here

I believe endoscopy and gastroscopy are virtually the same thing. They are both examining the upper portion of the intestinal tract (duodenum), which is where villous atrophy would be seen. During gastroscopy, the dr will be looking for health issues of the esophagus and stomach as well. Colonoscopy will look at the colon, and can be useful in detecting other potential health issues such as chron's, colitis, tumors, redundant colon, etc. Neither procedure gets too far into the intestines.

Michelle

scotty Explorer
scotty
Posted
I believe endoscopy and gastroscopy are virtually the same thing. They are both examining the upper portion of the intestinal tract (duodenum), which is where villous atrophy would be seen. During gastroscopy, the dr will be looking for health issues of the esophagus and stomach as well. Colonoscopy will look at the colon, and can be useful in detecting other potential health issues such as chron's, colitis, tumors, redundant colon, etc. Neither procedure gets too far into the intestines.

Michelle

ok. thanks. so........if i was to try and determine if conclusively i had Celiac, going up the rear is a waste of time energy pain and money....? my docs are trying to convince me i have IBS and want to do one now, but imagine they wont find anything, which seems pointless to me. why would they want to look if they are convinced they wont find anything. i told my doc a diet is working. he is not a believer in diets, but he isalso not a beliver that i have anything other than IBS. is it worng to try and get a doc to bring up Celiac, cuz in 5 years i have never got them to. should i go into my new doc when i find one that is, like i know what i am talking about. i guess it is a trust thing. i need someone that will work with me. i wish i could find one to say "i wont stop til i figure out how to make you feel 100%!!"

aprilh Apprentice
aprilh
Posted

I believe she would be doing the colonoscopy to check for internal bleeding since you are so iron deficient. My coworker is having that done due to a small iron deficiency.

Unfortunately, Iron deficiency can be due to so many other issues.

If it were me (and I am a big scaredy cat) I would follow the diet and see if my iron levels improved. If not, then maybe do the colonoscopy and endoscopy.

The problem is that many people can be gluten sensitive not necessarily celiac but still have the same result by going gluten free - by feeling better.

I was gluten intolerant from a whole different reason. I opted not to have the testing done because I responsed so well to the dietary changes.

IBS is just a term that covers up an "underlying issue". When a dr diagnoses someone with IBS I get so pissed! My question is whY! What is causing IBS. They just want to leave it at that. There are many reaons someone develops IBS symptoms and they can be dealt with and your gut healed.

Just my 2 cents!

mushroom Proficient
mushroom
Posted

IBS is just a term that covers up an "underlying issue". When a dr diagnoses someone with IBS I get so pissed! My question is whY! What is causing IBS. They just want to leave it at that. There are many reaons someone develops IBS symptoms and they can be dealt with and your gut healed.

Just my 2 cents!

ccrrgn Newbie
ccrrgn
Posted
Okay, so second follow up with APN I originally convinced to test me for celiac disease. She is still saying I might need a colonoscopy despite me correcting her and giving her literature about it. I said today, "NO, I would need an endoscopy. They would need to biopsy the small intestine. Her answer--"Oh but an endoscopy only looks at the duodenum!" Well, duh!? Isn't that where many of us have damage! I've had pernicious anemia for 13 years!! I've been severely iron def for six! Anyone here think I might have some damage in my duodenum? GRRRR! She is just absolutely clueless--really! I am not having either test anyway as I am showing great improvement going gluten-free.

Thanks for listening! :rolleyes:

Hi From an other Trillium

I would advise you that what you have done is your best test results.I to was annoyed when my Dr. would not do the tests for me, now I would have to go back to gluten to get an endoscopy that would tell the tale. I am not willing to compromize my health that way, and if I get proof will it effect my chances of getting travel ins. in the future.

Thank you

disneyfan Apprentice
disneyfan
Posted
Okay, so second follow up with APN I originally convinced to test me for celiac disease. She is still saying I might need a colonoscopy despite me correcting her and giving her literature about it. I said today, "NO, I would need an endoscopy. They would need to biopsy the small intestine. Her answer--"Oh but an endoscopy only looks at the duodenum!" Well, duh!? Isn't that where many of us have damage! I've had pernicious anemia for 13 years!! I've been severely iron def for six! Anyone here think I might have some damage in my duodenum? GRRRR! She is just absolutely clueless--really! I am not having either test anyway as I am showing great improvement going gluten-free.

Thanks for listening! :rolleyes:

I totally agree with the last post on this topic. If your iron levels are that low, the doctor may be looking for any sign of internal bleeding, not only from your monthly cycle. On the other hand, if you iron levels are that low right now, I'm not sure I would want anyone poking around inside where it could cause additional bleeding!

I have had low iron levels for years. I take Feosol which is sold over the counter. I had been taking 3 tablets a day for several years. Finally, after going gluten free, my hemoglobin levels are stable and normal. I did have heavy cycles and that has seemed to calm down as well. I would suggest if you are taking the iron tablets, try taking one with a glass of orange juice. The vit C will help your body absorb the iron. I also do not take iron on an empty stomach. I will usually take it with a meal.

The other thought is, are you taking an iron tablet that is gluten free? Nature Made makes an iron tablet that is gluten free. I think that your doctor is correct in having you take supplements right now because if you iron levels are that low, you could have additional problems.

I did not have the endoscope because the GI I saw told me it was in my head and go home and eat whatever I wanted. I tried it for about 3 days and could not take it anymore. I will never go back to him or the food!

Hope this helps!

disneyfan Apprentice
disneyfan
Posted
I totally agree with the last post on this topic. If your iron levels are that low, the doctor may be looking for any sign of internal bleeding, not only from your monthly cycle. On the other hand, if you iron levels are that low right now, I'm not sure I would want anyone poking around inside where it could cause additional bleeding!

I have had low iron levels for years. I take Feosol which is sold over the counter. I had been taking 3 tablets a day for several years. Finally, after going gluten free, my hemoglobin levels are stable and normal. I did have heavy cycles and that has seemed to calm down as well. I would suggest if you are taking the iron tablets, try taking one with a glass of orange juice. The vit C will help your body absorb the iron. I also do not take iron on an empty stomach. I will usually take it with a meal.

The other thought is, are you taking an iron tablet that is gluten free? Nature Made makes an iron tablet that is gluten free. I think that your doctor is correct in having you take supplements right now because if you iron levels are that low, you could have additional problems.

I did not have the endoscope because the GI I saw told me it was in my head and go home and eat whatever I wanted. I tried it for about 3 days and could not take it anymore. I will never go back to him or the food!

Hope this helps!

P.S. I was referring to the posting by aprilh...

gfcookie Newbie
gfcookie
Posted
Okay, so second follow up with APN I originally convinced to test me for celiac disease. She is still saying I might need a colonoscopy despite me correcting her and giving her literature about it. I said today, "NO, I would need an endoscopy. They would need to biopsy the small intestine. Her answer--"Oh but an endoscopy only looks at the duodenum!" Well, duh!? Isn't that where many of us have damage! I've had pernicious anemia for 13 years!! I've been severely iron def for six! Anyone here think I might have some damage in my duodenum? GRRRR! She is just absolutely clueless--really! I am not having either test anyway as I am showing great improvement going gluten-free.

Thanks for listening! :rolleyes:

doesn't sound like she's clueless to me. if you are having celiac like problems, any good doctor will do both an endo and colonoscopy bc celiac has symptoms in common with other IBD. I think the problem is, sometimes doctors tell us what we don't like to hear, even if it is the truth.

TrillumHunter Enthusiast
TrillumHunter
Posted
  • Author
doesn't sound like she's clueless to me. if you are having celiac like problems, any good doctor will do both an endo and colonoscopy bc celiac has symptoms in common with other IBD. I think the problem is, sometimes doctors tell us what we don't like to hear, even if it is the truth.

Maybe it wasn't clear in my post. She never recommended an endoscopy, only a colonoscopy. She never recommended the celiac panel either. I did. This was a six month follow up after positive blood work. I've been gluten free for almost a year now---and it resolved every medical issue I had. Strange as it may sound, I'm thrilled to have celiac because it means I WASN'T crazy all those years.

Yeah, she's clueless and happy to remain so.

Gemini Experienced
Gemini
Posted
Maybe it wasn't clear in my post. She never recommended an endoscopy, only a colonoscopy. She never recommended the celiac panel either. I did. This was a six month follow up after positive blood work. I've been gluten free for almost a year now---and it resolved every medical issue I had. Strange as it may sound, I'm thrilled to have celiac because it means I WASN'T crazy all those years.

Yeah, she's clueless and happy to remain so.

I would have to agree with you. If you have had excellent results with the diet and are having no problems, any invasive procedure would be not necessary. I certainly would not have them done unless I were having a problem that made it medically necessary. They are the test du jour today though, and doctors push them.

nikky Contributor
nikky
Posted

its suprising and sad how many doctors are practically completely clueless,

i was lucky enough to get a good GP and GI both of whom know what they are doing, i had a false negative biopsy but my consultant decided to ignore that and go with the blood results

keep going with the diet and dont worry about the doctor

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,357
    • Most Online (within 30 mins)
      7,748
    Rhondaponda
    Newest Member
    Rhondaponda
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.1k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      How to navigate living with dermatitis herpetiformis

      By Rogol72 · Posted

      We've got plenty Tiernan's over here across the Irish Sea! I think anything will irritate an open wound in the skin. My dermatologist suggested Aveno moisturiser and E45 Emollient shower cream when she thought it was Eczema. I'm sure they will help during a dermatitis herpetiformis outbreak, or be the least irritating. Rinsing off after exercise should give you some relief. Dapsone is an antibiotic and it does reduce the skin inflammation associated with dermatitis herpetiformis blisters as well as eliminating the itch. I don't think it affects the immune system like oral steroids though. My GP said it can affect the bone marrow ... I believe in terms of red blood cell production. It causes them to break apart prematurely. They measure the reticulocyte count (immature red blood cells) in your blood while on Dapsone to see it's effects. People with a G6PD deficiency are more susceptible to Dapsone side effects. Here's a leaflet from the British Association of Dermatologists explaining Dapsone in more detail ... https://www.skinhealthinfo.org.uk/condition/dapsone/ Your dermaotolgist would need to determine how long to be on Dapsone. I guess if the antibodies in the skin are reduced over time with a strict gluten-free diet, then the need for Dapsone is less likely when glutened. So, Knitty Kitty's advice on Niacin and all things dermatitis herpetiformis related is spot on.  Have you had the skin biopsy yet?
    • disneyfamilyfive
      Test result insight

      By disneyfamilyfive · Posted

      Good morning, I thought I’d quickly update this post.  A week or so after my test results were posted, my doctor’s nurse called to say 2 of 3 blood tests showed elevated numbers and referred to GI for further evaluation.  It took about 3 -4 weeks to get into a GI, it was over the holidays too, so I’m sure that pushed things out a bit.  Met with the GI who was great, really listened and said that even though the main celiac test was still in normal range, there are 2 tests that are not and in his experience not all 3 tests need to be positive to take the next steps.  He said after listening to all my symptoms, and looking through my recent medical history he felt that celiac was very likely.  5 days later I was in for an endoscopy (and colonoscopy just to cover all bases at once) and 6 days later the biopsy results came back as positive for celiac sprue.  GI of course said a strict gluten free diet, referred to GI registered Dietitian and come back in one year for a repeat endoscopy to determine healing. If symptoms don’t subside (or improve) after gluten free diet for a couple then return sooner. 
    • knitty kitty
      Can food allergies like milk and soy flatten villi?

      By knitty kitty · Posted

      @Matt13  I understand where you're coming from.  Seemed I was reacting to all sorts of foods there for a while, but a low histamine Paleo diet really helps.   We make histamine in our bodies as a useful  neurotransmitter (causing alertness), and also as a response in the immune system.  Histamine is made and released by Mast Cells.  Mast Cells can become hypersensitive to stimulus and release histamine easily, like having an itchy trigger finger.  Mast Cells need Thiamine Vitamin B 1 Benfotiamine in order to NOT release histamine.  Mast Cells that do not have sufficient Thiamine release histamine easily and at the slightest provocation.   Plants and other animals make histamine, too.  By removing high histamine foods from the diet, more histamine can be removed from the body.  We need Pyridoxine, Vitamin B 6, Vitamin C, Cobalamine, B12, and Thiamine B1 to make Diamine Oxidase, an enzyme that breaks down histamine.  If we don't make sufficient DAO ourselves, DAO supplements are available over-the-counter.   Removing Nightshades (tomatoes, potatoes, eggplant and peppers) was very helpful.  Nightshades contain alkaloids that cause Leaky Gut Syndrome wherein large molecules of food can pass through the walls of the intestines into the bloodstream, traveling to other organs and structures where they promote inflammation.   After a few days on the low histamine Paleo diet, the Autoimmune Protocol diet, I started feeling better.  My diet was really restricted, but I felt so much better, I stuck with it.  Eating foods that were easy to digest and low in histamine allowed time for healing.  After a few weeks, I was ready to add one food at a time (two week period) back into my diet.  I had setbacks when I ran into a food my body didn't like, and had to go back to the start, but it was worth doing.  Celiac is a marathon, not a sprint.   Blood tests are not accurate measurements for various B vitamin deficiencies.  Vitamin levels in the bloodstream are different from the amount stored inside cells inside organs where they are utilized.  You can have symptoms of a deficiency yet have "normal" blood levels.  The best way to test for a B vitamin deficiency is to take it and look for health improvement.  B vitamins are easily excreted because they are water soluble.  Malabsorption in Celiac can affect all the vitamins and minerals our bodies need, not just one.  Do talk to your doctor and nutritionist about supplementing while healing.  
    • Morgan Tiernan
      DH and swollen lymph nodes

      By Morgan Tiernan · Posted

      A little late to the party in terms of seeing this and responding to it, so apologies! But I wanted to responds as this sounds exactly like my experience. I had covid, followed by shingles, followed by strep… that unlucky bout of infections is what lead me here with dermatitis herpetiformis. I was also self diagnosed in the beginning and turns out I was absolutely right! Currently waiting for biopsy confirmation though. In terms of swollen lymph nodes, I get this when my rash is present. Mostly in my neck and they’re a lot more swollen if I’ve been cross-contaminated with gluten and when the rash is at its worst!   
    • knitty kitty
      Weak positive blood test and marsh type 1

      By knitty kitty · Posted

×
×
  • Create New...