Compelling reason for dx by biopsy?

[cshinaberry]

My gastro thinks it likely that I have celiac disease based on symptomology and the fact that I have CVID (apparently as many as 50% of celiac pateints have this dual diagnosis). But because of the CVID, Ig panels aren't very useful in diagnosis, and thus she's advocating biopsy. Not only is the thought of having that done (twice!) less than jolly, I also have Chronic Fatigue Syndrome. I'm pretty ill across the board, and I know from having suffered with CFS for years that the physiological stress of going through those procedures will really set me back. So what I'm wondering is why a functional diagnosis (i.e. you eat a gluten free diet, you get better, therefore you probably have celiac disease) isn't good enough? Most of what I've read online from the major celiac advocacy groups promotes biopsy diagnosis, but why? If the damage to the small intestine is reversible by diet, there are no other risks or considerations and dietary modification is the only treatment, then why should I have to go through the biopsy procedure? I'm already on a restricted diet (as is my husband) and we cook most of our food from scratch, so the thought of further restricting it isn't a big deal to me.

Any thoughts would be helpful.

(I should probably add that I had the standard blood workups for celiac a couple weeks ago although I don't yet know the results. My gastro wasn't anticipating them to tell us much b/c of the CVID.)

[aklap]

Hi,

Welcome to the board! Glad you stopped by.

You ask a very good question. It's a question that has plagued those of us needing it from the get go! It really boils down to a matter of personal choice and the type of person you are. If you are the type of person that will stay GF on the sole fact that you feel better - GREAT, go for it!! But if think you'll have doubts because you don't really know for sure what's going on...that's where a positive dx comes in handy. There are arguments on each side - each with their own valid points.

We have a recent thread surrounding this exact subject. Suspect CD, is dx worth it?. You might want to check it out if you haven't done so already.

I wish you well in your Knowledge Quest!! If CD or gluten sensitivity is what you have, I suspect you would see an improvement in your CFS once GF. CFS (fatigue) is very common in CD.

Let us know what you decide to do!!

I have not heard of CVID, so I took a look around.

Celiac & CVID:
http://www.clanthompson.com/exp_doctor_showqa.php3?question_id=157&category=CD%20and%20Other%20Issues&category_id=2

Here's some more research I placed in our Diagnostic Forum:

http://www.celiacforums.com/forums/viewtopic.php?t=2996

Definitely an interesting situation. In some of these reports, it appears that a GF diet might not help, but yet in some cases it does. Not sure what's going on. I think I would also get other vitamin & mineral levels checked too!

I wish you well and that you get the answers you are looking for.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Noatak]

Al pointed out some good reasons for both sides of the issue but speaking for myself, I did not have a diagnosis through biopsy and for me personally, it was not needed. Between the symptoms I was having (almost every one listed for classic, advanced CD, and my blood test results, it was extremely obvious what I had. Then came the unbelievable response to the GF diet....all symptoms went away eventually over a couple of months and I started to gain weight. That proved to me what I had and I am extremely comfortable on this diet. Why would anyone want to consume gluten if you know it makes you very sick? Even for those with gluten intolerance or a wheat allergy, it's a no brainer for me if you want to lead a healthy and doctor free (almost) lifestyle.

I know many people do not agree with this but you asked why doctors insist on a biopsy for official diagnosis? Probably liability issues have a role and the fact that they make alot of money from doing biopsies....if everyone just did antibody testing or gene testing, the labs would make the money, not the doctor. Like Al said, villi damage occurs at the end stage of this disease and if you aren't there yet, a doctor will tell you you don't have CD if he can't find damaged villi and we all know this is untrue.
Then people will continue to eat gluten and stay sick....not good!

[aklap]

[ostrich]

I agree with Al, if it hurts, don't do it. But has anybody had any positive (good) results when they got a definitive dx? As in, has any good come of it?
_________________
Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

[cshinaberry]

Thank you very much for the input, and especially to Al for digging up those articles on CVID. I had not seen a couple of them. At this point, the cost/benefit analysis is trending heavily towards no biopsy... What I would have to go through (knowing it will precipitate a CFS flare plus infection risks from an invasive procedure as a sufferer of CVID) to have it done is not worth it to me if all we're really talking about is peace of mind. Knowing for sure is not that important to me. Feeling better is.

[lspesard]

From my personal perspective, I doubt if I would have believed the diagnosis without biopsy results and blood tests. But I'm part of the hidden bottom of the iceberg, so to speak. No symptoms except anemia and upon further testing I was osteopenic.

If I was in your situation I think my biggest concern would be "What if it's not celiac disease, will I delay checking for something else? And how will I be sure?" If you get an immediate improvement on a gluten-free diet, that would be great. But I think that there's a lot of variation in how long it takes for things to improve. At what point do you give up and move on to trying other things? What if you do so and it was just a few weeks before you would have started improving?

Have you talked to your doctor about genetic testing? It won't prove that you have CD, but if it's negative it's almost 100% certain that you don't have it. That could save you having to worry about either the diet or a biopsy.

Just some thoughts. You're the only one who can decide what's best for you. Best wishes with whatever you decide.
_________________
Gene in Tucson, AZ
DX 11/2004

[cshinaberry]

[aklap]

Just wanted to link in another related thread

Biopsy...to do or not to do
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[aklap]

another bump for Anette
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Anette]

Thanks for the bumps Al.

My husband and I are still up in the air about whether to do anythign further medically or not but I am feeling so much better that I will stay GF.

[sarahceliac]

Hello, I too was diognosed by blood test only. I follow a gluten free diet and everything is great. I was never told to have the biopsy, my bloodwork proved that I have CD, and that was convincing enough for me. I would say to only have the biopsy if it is a comfort issue for you. If you will not believe you have it or not without it than go ahead and get it, but obviously that does not seem like the case.

Good luck,
_________________
Sarah

[cultureslayer]

I was not offered a biopsy. I would have declined if I was offered it (and could have gotten one if I wanted it). Given the amount of time it would have taken to get in for a biopsy, I knew much sooner with diet changes. In fact, I quit eating gluten as soon as I had the blood drawn, didn't wait for the results. I asked to be tested fro celiac and I was going to try GF anyway. I wouldn't have even had the bloodwork if my insurance didn't pay for it. I think a diet trial is the only way to know 100% if going GF will help you or not. Each test has false positives and negatives and it's very hard to calculate those percentages so I only use tests as a guideline for what my cause me to feel the way I do.
_________________
Lauren
Pain is inevitable; suffering is optional.

[aklap]

bump
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[aklap]

bump for newb
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa