When It's Not Celiac's

[123xyz]

I posted back in December that my SIL had been diagnosed with Celiac's disease after years of thyroid problems and vitamin deficiencies. When she got the diagnosis, it made perfect sense and fit in exactly with a variety of Celiac symptoms. Diagnosis was, to my understanding, based on symptoms and not bloodwork. But she was having a really hard time getting her head around all the dietary changes she would have to make, so she wanted to have the endoscopy to be sure that this was the correct diagnosis.

Well, it was not Celiac's disease. She had a TAPEWORM that the doctors estimated had been in her for ten years. As gross as that is, it was about a month ago, and her body is showing great signs of recovery.

Interestingly enough, my husband had bloodwork done to see if he had Celiac's because he's had alot of GI problems. He does not have the disease, but he has genetic markers, so it's something we'll watch for in the future.

I just wanted to share my SIL's story with this board, because we were all certain that she had Celiac's, the symptoms were just a perfect fit. But no, something else was depleting all the vitamins from her body. And I swear this is true! Perhaps her story will help someone else who's reading these boards and wondering about their diagnosis.

[sbj]

Perhaps her story will help someone else who's reading these boards and wondering about their diagnosis.

Wow! Good thing she had the endoscopy! On the other hand, I wonder how the tapeworm would have enjoyed the gluten free diet?

Just joking - I hope she feels well soon. And thanks for the update. This info might help someone.

[Tallforagirl]

I posted back in December that my SIL had been diagnosed with Celiac's disease after years of thyroid problems and vitamin deficiencies. When she got the diagnosis, it made perfect sense and fit in exactly with a variety of Celiac symptoms. Diagnosis was, to my understanding, based on symptoms and not bloodwork. But she was having a really hard time getting her head around all the dietary changes she would have to make, so she wanted to have the endoscopy to be sure that this was the correct diagnosis.

Well, it was not Celiac's disease. She had a TAPEWORM that the doctors estimated had been in her for ten years. As gross as that is, it was about a month ago, and her body is showing great signs of recovery.

This is a really good example of why an endoscopy is a good idea. Even with positive blood work, it's possible someone could have had celiac disease plus a tapeworm (or something else).

Hope your sister has a quick recovery:)

[Fiddle-Faddle]

Tapeworms are usually diagnosed by analyzing stool samples, not by endoscopy: Open Original Shared Link.

So this is actually NOT a good example of why an endoscopy is a good idea (which is not to say that endoscopies are never a good idea). In this case, the doctor obviously dropped the ball more than once. Non-invasive tests (like blood work and stool samples) should have been done BEFORE invasive tests (like endoscopies). If the doctor had run blood work and done stool samples in the first place, back in December, 123xyz's SIL may very well have not needed an endoscopy at all.

[sbj]

Bloodwork is not a non-invasive test. That word 'invasive' really seems to scare people. Drilling to fill a simple cavity is an invasive procedure. A pinprick is an invasive procedure.

[psawyer]

Perhaps she should have said "less invasive."

[Fiddle-Faddle]

Yes, I should have said, "less invasive" rather than "non-invasive." Sorry about that!

[Gemini]

I posted back in December that my SIL had been diagnosed with Celiac's disease after years of thyroid problems and vitamin deficiencies. When she got the diagnosis, it made perfect sense and fit in exactly with a variety of Celiac symptoms. Diagnosis was, to my understanding, based on symptoms and not bloodwork. But she was having a really hard time getting her head around all the dietary changes she would have to make, so she wanted to have the endoscopy to be sure that this was the correct diagnosis.

Well, it was not Celiac's disease. She had a TAPEWORM that the doctors estimated had been in her for ten years. As gross as that is, it was about a month ago, and her body is showing great signs of recovery.

Interestingly enough, my husband had bloodwork done to see if he had Celiac's because he's had alot of GI problems. He does not have the disease, but he has genetic markers, so it's something we'll watch for in the future.

I just wanted to share my SIL's story with this board, because we were all certain that she had Celiac's, the symptoms were just a perfect fit. But no, something else was depleting all the vitamins from her body. And I swear this is true! Perhaps her story will help someone else who's reading these boards and wondering about their diagnosis.

I think if your sis-in-law had gone on the gluten-free diet and her only problem was truly a tapeworm, she would not have improved on the diet at all. So, Celiac Disease could have been ruled out on that alone, unless there was strong suspicion of refractory sprue. I was going to say I couldn't believe it would take years to diagnose a tapeworm but, then again, I was the one who diagnosed myself and then requested their testing! What is up with these GI doctors?

Hope she feels 100% better soon and her symptoms go away completely!

[sbj]

Perhaps she should have said "less invasive."

'Minimally' invasive would have been the most accurate.

But really, my point is that the word 'invasive' seems to scare people into thinking that an endoscopy is some sort of risky procedure that should be avoided. Endoscopies are widely acknowledged to be relatively safe and are quite wisely used by doctors to aid in diagnosis, as this example clearly shows. 'Invasive' is a medical term that applies to a variety of very safe procedures and I think it is a pity that the word now seems to connote for many something that is dangerous and should be avoided. If folks want to avoid invasive procedures then they should avoid any sort of bloodwork, having cavities filled, etc. Please don't be scared by the word 'invasive.'

[Gemini]

'Minimally' invasive would have been the most accurate.

But really, my point is that the word 'invasive' seems to scare people into thinking that an endoscopy is some sort of risky procedure that should be avoided. Endoscopies are widely acknowledged to be relatively safe and are quite wisely used by doctors to aid in diagnosis, as this example clearly shows. 'Invasive' is a medical term that applies to a variety of very safe procedures and I think it is a pity that the word now seems to connote for many something that is dangerous and should be avoided. If folks want to avoid invasive procedures then they should avoid any sort of bloodwork, having cavities filled, etc. Please don't be scared by the word 'invasive.'

I understand your point and it's obvious you have had no bad experiences with invasive procedures like an endoscopy. However, there are those of us who doubt how safe it is and with good reason. I, personally, refused one because my blood work was so high, there was no mistaking what I had, along with symptoms at the time. I also had spent the past week vomiting my guts out and the thought of shoving a garden hose down my throat was the last thing I was going to do. It would have been a nightmare at that point.

Unfortunately, I have family in the medical profession and I hear the stories that many other people never hear about mistakes made by doctors doing procedures. Does it happen often? I doubt it but you would hate to be the one it does happen to. I won't even go into the endoscopy horror stories because there are people who will opt to have one and they do not need to hear them. I just believe that not everyone needs to be "scoped" in the process of living and that is what they are trying to sell today. The medical profession needs to revert back to good diagnostic work, common sense and the use of invasive testing like endoscopies and colonoscopies when warranted, not because you are human in the latter half of your life. I guess it may all be a moot point anyway because if the US adopts socialized medicine, the endoscopy wings will not be busy. I don't much agree with that either but there has to be a happy medium.

[sbj]

I also had spent the past week vomiting my guts out and the thought of shoving a garden hose down my throat was the last thing I was going to do. It would have been a nightmare at that point . . . The medical profession needs to revert back to good diagnostic work, common sense and the use of invasive testing like endoscopies and colonoscopies when warranted . . . I guess it may all be a moot point anyway because if the US adopts socialized medicine, the endoscopy wings will not be busy.

An endoscopy does not involve 'shoving a garden hose down' your throat. That is precisely what I meant by it being unfortunate that people are being scared away from 'invasive' procedures. I take no issue with anyone relating their own personal experiences, as I often do. I do take issue with those who would take an isolated or rare incident/statistical chance and then try to convince someone to not have a procedure performed because 'they might die.'

I think what we'll end up here is one or two of us trying to calm people's fears about the endoscopic procedure, and quite a few others warning of possible catastrophe. So long as both sides are presented and aren't 'shouted' down I can live with that.

OTOH, we have found something we agree on - we fear some aspects of socialized medicine.

[Jestgar]

I just believe that not everyone needs to be "scoped" in the process of living and that is what they are trying to sell today. The medical profession needs to revert back to good diagnostic work, common sense and the use of invasive testing like endoscopies and colonoscopies when warranted, not because you are human in the latter half of your life.

What Gem said.

[sbj]

What Gem said.

I'm sorry - did anyone here disagree with that? Did I miss it where someone wrote, "We must all be scoped."

Colon cancer and the like often presents without symptoms. By the time symptoms show up it is too late. That's why doctors recommend that men get a colonoscopy every ten years beginning at age 50. This qualifies as "because you are human in the latter part of your life." If you wait until you have symptoms then you might lose your colon or perhaps your life. Cancer screening and the like is simply a good idea when you are 'simply human' and in the latter half of your life. I'm sorry - you'll never convince me otherwise. Get those polyps removed before they become cancerous - if you won't do it for yourself then do it for those who love you. Please don't put off proper screening (even if you don't have symptoms) because you feel someone is trying to make a buck.

[rinne]

Open Original Shared Link

I am definitely one of those who does not think everyone should be scoped, I think there are risks and I choose not to take them.

I am confused though, did the doctor see the tape worm when he did the endoscopy?

Thanks for posting this.

[Rondar2001]

Thanks for sharing your story. I think this goes to show that a doctor may do an endoscopy to look for any other medical issues going on, even if they may not list everything they might possibly see to the patient. Personally, I would rather have things checked out as fully as possible instead of taking a chance that something may be missed. Of course, this is everyones right to choose.

Hope your SIL is feeling better now.

[Jestgar]

I'm sorry - did anyone here disagree with that? Did I miss it where someone wrote, "We must all be scoped."

:lol: I'm sure someone somewhere has!

I only meant to add that I, too, am a fan of less, rather than more, medical intervention. I think that you should question and consider every procedure (that's not for a life threatening issue) before deciding to proceed (as opposed to blindly following someone else's directive). If you have a medical practitioner you trust, you might put less effort into this and just go with the recommendations.

[Gemini]

An endoscopy does not involve 'shoving a garden hose down' your throat. That is precisely what I meant by it being unfortunate that people are being scared away from 'invasive' procedures.

Actually, it does, if you have Sjogren's Syndrome and an enlarged thyroid. Not everyone has these issues but, as I cannot swallow anything without cutting my food up into baby sized bites, the garden hose reference is very true for me and probably some other people.

As for cancer screenings, I find it sad that our society lives in such fear of getting cancer. That can be part of the problem.....if you fear something that strongly your whole life, it could contribute to poor health. I have never seen such fear in all my life and the medical profession is doing a good job of convincing people they need these tests. Not everyone is at high risk and testing should be reserved for those who are. Not getting screening tests on the AMA's time line will never cause cancer but they like to scare you into thinking so. I am not against screenings but I think for most people, they can come later in life than what is recommended. At no other time that I can recall has there been such a push to monitor the general population's health stat's and I find some of it rather intrusive. I also think that compliant and vigilant Celiacs are LESS likely to get colon cancer than the general population because we eat far better than most do. The American diet is the cause of many health problems today

so I find it kind of bizarre that many will eat a horrible diet and then run off for their scopings.

[Tallforagirl]

Actually, it does, if you have Sjogren's Syndrome and an enlarged thyroid. Not everyone has these issues but, as I cannot swallow anything without cutting my food up into baby sized bites, the garden hose reference is very true for me and probably some other people.

Your personal medical history and suitability to undergo the procedure is something you'd have to take into account and discuss with the doctor.

However, I would like to agree with sbj and reassert the fact that there is no garden hose involved. It's possible to imagine that the scope might be like one, but it's not. I can't say for sure what it looks and feels like, as I don't remember a thing, because of the sedative they give you.

[sbj]

I cannot swallow anything without cutting my food up into baby sized bites, the garden hose reference is very true for me . . . As for cancer screenings, I find it sad that our society lives in such fear of getting cancer . . . Not everyone is at high risk and testing should be reserved for those who are. Not getting screening tests on the AMA's time line will never cause cancer ... I am not against screenings but I think for most people, they can come later in life than what is recommended.

It is not 'fear' to take rational precautions! Testing should not be reserved only for those at high risk; screening is appropriate for those 50 and older at average risk. Screening helps prevent colon cancer. Colon cancer is the second leading cause of cancer deaths. Men have a 1 in 17 lifetime chance of getting colon cancer.

What do you base your opinion on? That is, you feel that we should be screened 'later' than is recommended. But why? Is that based on the totality of studies, or is that based on some obscure website about diet and health, or is that just your opinion based on the conspiracy theory that docs don't care about our health they just want to make money by prescribing unnecessary tests?

There are a variety of screening options - not all include scoping - discuss what's right for you with your doctor. No screening at all would be rather inane to my mind but that is an individual decision. With regards to colon cancer some facts are rather important:

"Colon cancer . . . is the second-leading cause of cancer death in the United States. . . . Regular testing for and removal of colon polyps . . . can prevent colon cancer . . . if you're at average or higher than average risk of colon cancer, some screening is better than no screening. Proper screening aids in early detection, which helps ensure timely treatment for this potentially fatal disease . . . If you're 50 or older and have no other risk factors, you're considered at average risk. Most people who get colon cancer

[ravenwoodglass]

It is important that people know that for some the procedure can have serious problems associated with it. People need to find a doctor they trust and that will give them the facts, the risks and assess the those risks in relation to them. I was not lucky enough to have that and did have serious issues with the test and prep. One other thing I would add is that the procedure should IMHO be done with an anesthesiologist present. The facility I had mine done in did not have one and my doctor took pride in how many procedures he could do in as little time as possible. Not a good selling point in retrospect.

[Fiddle-Faddle]

I can't say for sure what it looks and feels like, as I don't remember a thing, because of the sedative they give you.

I had 2 endoscopies, both without any sedation at all (at my request). I DO remember, and it did look exactly like a garden hose, only black.

[123xyz]

To clear up some things re: my SIL's diagnosis.

First, the bloodwork she had done showed that she had antibodies that indicated Celiac's. I know the blood tests are really complex, so I don't know what that means in technical terms, just how it was relayed to me. She did not have the genetic tests done. My husband's bloodwork indicates he has a genetic disposition to Celiac's.

And, yes, the endoscopy is how they found the tapeworm! Her doctor didn't order the stool sample because he didn't suspect it. My husband is still having GI problems. When he told his Dr. about his sister's actual problem, the Dr. said that the symptoms of a tapeworm can be similar to Celiac's, basically they both deplete the body of nutrients.

This experience just emphasizes that everyone needs to be really thorough in getting any and all tests that can help with a diagnosis. Don't just assume that the first diagnosis is correct--it may not be that simple. And, wow, reading this forum, I've learned so much about Celiac's and the different ways it affects those with the disease. This is a great resource, and thanks to everyone for sharing their experiences.

[Jestgar]

Open Original Shared Link

Again, I suggest only making informed decisions based on some sort of medical evidence.

Thanks for the link!

To clear up some things re: my SIL's diagnosis.

First, the bloodwork she had done showed that she had antibodies that indicated Celiac's. I know the blood tests are really complex, so I don't know what that means in technical terms, just how it was relayed to me. She did not have the genetic tests done. My husband's bloodwork indicates he has a genetic disposition to Celiac's.

Ya know....she might want to consider having the anitbody test redone after she's been on a regular diet (without a tapeworm) for a while....just in case....

[psawyer]

Well, as Jestgar said, it just could be that she is a celiac and she also had a tapeworm.

[nora-n]

And, about checking for all those other possible things, there is video capsule endoscopy too, and with that they can see every inch of all the intestine, and they can even see celiac that is patchy and other wise hard to biopsy beause it is so easily missed.

And other things they see too.

nora