Compelling Reasons For Dx Via Biopsy?

[cshinaberry19]

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.

[jams]

It depends if you really want a diagnosis or not. If the blood panel was inconclusive, you may want a biopsy to confirm. The thing to keep in mind is this... If you don't do the biopsy before going gluten free, you will have to eat gluten if you ever change your mind. I know this is a difficult decision, but you need to make it with your doctors advice. If you are comfortable saying you are gluten intollerant or that you might have celiac, then don't do it. If you really want to be able to say that you have celiac, then do the biopsy.

Just remember, if you feel better from going gluten-free, you are not going to want to go back to eating gluten for a biopsy. It is really a personal decision. If you are young, I would reccomend the biopsy so you know if it really needs to be a life altering diet. If you are okay with the diet for the rest of your life with no dx, then don't do the biopsy.

Again, talk with your doctor. They can give you the best advice if you should do it or not. I do hope you feel better soon!! Good luck with your decision!!

[Guest nini]

for years the biopsy has been the gold standard of dx, BUT the medical community was also under the mistaken impression that this is a RARE condition, which it is not. For the most part they are operating on outdated methodologies and outdated information. In a lot of cases biopsies miss damage because in the early stages of the disease the damage can be very sporadic or not as obvious, and I do not understand why they are reluctant to dx based on positive dietary response. According to many of the Celiac experts, positive dietary response is the most valid diagnostic tool, and they believe it will soon replace the biopsy as the gold standard. But for the time being, the majority of the medical community is still in the Celiac dark ages, and refuse to acknowledge any stage of the disease other than the full blown total villous atrophy.

I was not dx'ed with a biopsy. I did not have one. My dr. said because my bloodwork was so highly positive that the biopsy was uneccesary. My daughter didn't have the biopsy and her bloodwork was negative (although her Dr. didn't do the complete Celiac panel either). But she was dx'ed with gluten intolerance based on positive dietary response, but we KNOW it's celiac.

ultimately it's up to you. Do you take your health into your own hands and try the diet which does not require a Dr.s permission to be on, or do you put your faith in Dr.s who may or may not know what they are talking about? I say listen to your body, but if you are the type to depend on Dr.s to definitively dx, then you will need to stay on gluten and lots of it, and bear in mind that the testing is not always accurate. Meaning, you can have a false negative but you cannot ever have a false positive. The tests can only rule it in, not ever rule it out, and ultimately it's how your body responds to the diet that is the most telling.

[marciab]

Sorry to hear you have CFS, I have had CFIDS / FM for 16 years. So in my humble opinion, since you are not gluten-free yet, I would go have the biopsy done. That way you'll have it over with and will never regret not having it done. I regret not having it done, but it is too late for me. I have seen a positive response from the gluten-free diet and can't go back.

You can go on the gluten free diet right away and so your recovery hopefully will be balanced out by the fact that your diet is better.

I completely understand how you feel about not wanting to go through that again. I had an endoscopy and a colonoscopy not too long ago and they are grueling for CFIDS people. My veins roll which makes it extra special.

That's just me though. I am still looking for medical approval.

Good luck in whatever you decide ... marcia

[Becky6]

It is really up to you. I really did not care if I had the dx or not. I just wanted to feel better. My daughter was on the diet and doing much better so the likelyhood I would be the same was great. I was almost dx'd with ms and felt to sick to consider the biopsy. I have been gluten-free for 5 months now and feel great!

[Nancym]

The biopsy is really for you and your state of mind. If you can adhere to the diet without having confirmation of the current (lousy, IMHO) "gold standard" method of testing then why bother? In the end having a positive biopsy means nothing to anyone but you really.

[cshinaberry19]

Thanks for all the input... I really am leaning towards doing the diet and not worrying about the biopsy because there are too many risks and pitfalls for me with invasive procedures, especially unnecessary ones. If all it's really essential for is peace of mind, then I'm OK without that. I have been suffering a long time with other illnesses that there is no diagnostic test for, so I've had to learn to be OK with ambiguity. Feeling better is the primary concern, and if diet does it, I'm sold. My CFS/CFIDS, for example, is not something I can really do anything about in terms of treating it - being able to "fix" celiac disease sounds like a pretty good deal to me, even if it means a lifetime of change. Husband and I are already vegans, so we're used to reading labels, making our own foods, and making non-mainstream food choices, so we might have an easier time than some with the gluten-free diet (husband is going go gluten-free with me). ANY improvement I can get in my quality of life would make a big difference - I've been virtually bedridden for seven years now. I've been doing a lot of research in the past few weeks, and I still haven't found anything that constituted a unequivocal, compelling reason to do the biopsy. Thanks again for adding some additional insight to that.