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!

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.

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

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.

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

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!

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.

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

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...

Why wouldn't you have a scope done?

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

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%!!"

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!

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!
[/quote]


I could not agree more. IBS is a description of a symptom, not a diagnosis!

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

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...

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.

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.

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