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Is A Biopsy Always Needed?

sandy-sas

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sandy-sas Rookie
sandy-sas
Posted

Hi Everyone,

I am new here and my husband was just diagnosed with Celiac about a month ago. He has most of the symptoms including anemia. His doctor said from the blood work there is no doubt he has celiac. The results were as follows

Anti-transglutaminase IgA 28.0 U/mL " normal is below 7"

Anti-endomysial 3+ Can anyone tell me what this test indicates and is this number high or low?

I'm in Canada so I don't know if the lab testing is the same everywhere. My husband feels like crap and has pretty bad diarrhea most of the time. What is upsetting to me is that it's been over a month and he's still waiting to see a specialist to go for a biopsy. His doctor said they always do it to confirm and also rule out anything else I guess. I think they just do it automatically. The problem is it's going to be between 3-6 months before he can get in and the doctor said to stay ON gluten for now. That seems ridiculous to me. If he goes on the diet, gets better and the next set of blood work comes back normal, isn't that good enough? Do you HAVE to get the biopsy. What are the chances that's it's something else?

Thanks

Sandy

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mushroom Proficient
mushroom
Posted

Hi Sandy, and welcome.

The biopsy is done because it has traditionally been done :o Before the blood tests were developed it was the ONLY way to diagnose celiac, and it is still considered to be the "gold standard". Most doctors, however, will diagnose celiac on positive blood work and a positive response to the diet. I agree that it seems senseless to continue poisoning yourself for six months, doing untold additional damage, to wait for biopsy confirmation of the diagnosis, when you can confirm it by diet. The way I look at it, if there is something else other than diet, it is still going to be there when the biopsy is done whenever they can fit it into their overbooked, undersupplied schedule. That is, I would if it were me go ahead with the endoscopy, but I would also go gluten free right away before anything more insidious pops up (spoken as one with psoriasis and rheumatoid arthritis). There are others here who would probably disagree with me, but I'm not saying "forget the biopsy". It can be useful for diagnosing any additional conditions, but if he is certain your husband has celiac, there is no point getting biopsy confirmation of that in my book.

gfbatali Newbie
gfbatali
Posted

Hi dear

Blood tests are not always accurate because some times it becomese negative .But taking a biobsy is always the gold standerd to detect celiac disease.For example, iam A2YEARS CELIAC PATIENT and my gastro reapeats the endoscopy every year . B)

gaingus Rookie
gaingus
Posted

I suggest getting the scope and biopsy done. Unfotunately, it is the gold standard for diagnosis (and at least for American HMOs) the only true verification. Personnally, I believe that blood testing has gotten much better than what it was and should suffice for a diagnosis.

One thing I can agree to is at least getting the endoscopy done. It might show other underlying issues that you may not know are there. When I first was scoped, my GI (at that time), found a hyatal hernia (sp) and that I also had a H. pylori ulcer. He thinks the ulcer was possibly related to or caused by celiac.

Also, depending on how long he has had the symptoms, and how much damage was actually done, going gluten free should not alter the biopsy results right away. It can take many months to repair the damage. Unfortunately, all of my biopsies were inconclusive and negative, but the doctor could see the tell tale "scallop shaped" damage. Unfortunately, my insurance has to have the gold standard for a positive diagnosis.

ravenwoodglass Mentor
ravenwoodglass
Posted

How badly do you want an 'official' diagnosis? If your husbands recovering is more important than getting the 'OD' then go ahead and start the diet. I would keep the appointment for the biopsy if he is still having issues after that but if the diet takes care of the issues IMHO you have your 'official' diagnosis.

sandy-sas Rookie
sandy-sas
Posted
  • Author

How badly do you want an 'official' diagnosis? If your husbands recovering is more important than getting the 'OD' then go ahead and start the diet. I would keep the appointment for the biopsy if he is still having issues after that but if the diet takes care of the issues IMHO you have your 'official' diagnosis.

We don't care about the official diagnoses at all. My husband started the diet this morning. I'm with you on the fact that his health will be the one way to tell or not. If he feels better and his blood work improves why would you need to have the biopsy? That's what we thought too, but I just wanted to get others opinions as to whether there was some other reason that a biopsy "had" to be done. To me it makes more sense to rely on how you feel and monitoring the blood work to see if there is an improvement.

Thanks

Sandy

GFinDC Veteran
GFinDC
Posted

There may be a reason to do the biopsy if the Canadian Health system requires it for cost reimbursements. I don't know if they do but it might be worth checking into. I think in England they reimburse celiac patients for some food costs.

Does it do any good to call the health care system administrators and ask for an earlier appointment? There are lots of gastroenterologists around, so it seems like they might be able to get him into another one? 6 months is a long time to have to suffer just for one person's schedule to open up.

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sandsurfgirl Collaborator
sandsurfgirl
Posted

It takes you SIX MONTHS to see a specialist??? That's just horrible. Here in the U.S. it takes a couple of weeks, maybe a month if it's a doc who is in high demand, but even then they will get you in if you are sick.

My blood tests were abnormal and the doc wanted me to stay on gluten to get to a gastroenterologist and confirm with a biopsy. I said NO WAY. I was sick as a dog and I'm not willing to do more damage to my intestines so they can do that test and feel better.

I found a doc who thinks it's barbaric to do that and diagnosed me based on blood tests, symptoms and dietary response.

It's a gamble with the biopsy because the intestines are long and if they don't get damaged tissue it can be false negative. If the pathologist doesn't know how to read it you can get a false negative.

There is a withdrawal period once you start the diet and it also takes time to find out where the hidden gluten is. I've been on the gluten free diet for 3 weeks, but technically only one week because there were a few things I ate that I didn't know had gluten like fast food chicken breast and all my beauty products had gluten in them so I had a few setbacks.

That Gold Standard stuff is a bunch of baloney. It's a "Gold standard" alright. Gold in the doctor's pockets for doing surgeries instead of blood tests. The "gold" isn't golden for your health, it's golden for them. There are NO FALSE positives on the blood tests.Sorry, after 40 years of being misdiagnosed and sick, I'm a cynic about the docs.

muchmalignedminx Newbie
muchmalignedminx
Posted

Hi..This is my first post on here .. so 'ello all :-) In response. I had the blood work done but that came back negative so thought that was that but luckily I had a persistant doctor who said well somethings not quite right. I had all the usual unpleasent symptoms and was losing weight etc. I went on to have a gastroscopy and colonoscopy (not nice!) The gastroscopy biopsy showed I had damage ie partial villious atrophy etc. I had my final diagnosis friday 5th February just gone but the whole thing took from the beginning of december 2009.

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