Is skipping a biopsy a terrible idea?

[CaroCaroCaro 2]

As I understand the Biopsy is the diagnostic gold standard.  At the same time, it is not cheap and it is invasive.  I understand that Celiac manifests serologically in many ways (or not at all).  For seronegtive patients, it can be the only confirmation.

What I don't understand is the clinical necessity of the biopsy with positive serology on certain tests.  I understand that TTG can be elevated for causes other than celiac and that the tests vary in their specificity.  It seems like the EMA test is highly specific (cited in this study as 99%). In one of the studies cited in this lit review,  patients with positive EMA but negative biopsies, were re-biopsied 16 months later and had definite mucosal damage.

"One striking feature is the relatively few false positive EMA tests (51/4107). Furthermore, it could be that the false positive rate is even lower. In one of the studies, five of the 39 who had a positive EMA test and normal small bowel histology consented to rebiopsy within 16 months.21 All had a flat mucosa at second biopsy."

(Found here: http://pmj.bmj.com/content/76/898/466)

James, M. W., & Scott, B. B. (2000). Endomysial antibody in the diagnosis and management of coeliac disease. Postgraduate Medical Journal, 76(898), 466 LP  – 468. Retrieved from http://pmj.bmj.com/content/76/898/466.

Cataldo F, Ventura A, Lazzari R, et al. (1995) Antiendomysium antibodies and coeliac disease: solved and unsolved questions. An Italian multicentre study. Acta Paediatr 84:1125–1131

 

I have high EMA,  and I want to take care of my health and do testing that is medically necessary... but if I'm going to fork over several thousand dollars (my insurance will cover almost nothing) I want to fully understand the clinical value of the test.  So here's my question:  Why isn't serology enough to diagnose?  What can a biopsy tell that we don't already know. Is there a clinical need to know the extent of mucosal damage?  It seems like the treatment is the same either way (even if it were to be stage 1 damage and just be latent celiac). I want to understand why this is valuable and what would be the cost of not doing the biopsy.  Can anybody help?

 

 

 

 

[Jmg 299]

38 minutes ago, CaroCaroCaro said:

Why isn't serology enough to diagnose?

As you mentioned yourself serology can be high for reasons other than celiac.

38 minutes ago, CaroCaroCaro said:

 What can a biopsy tell that we don't already know

Existence, then severity of villous atrophy

38 minutes ago, CaroCaroCaro said:

Is there a clinical need to know the extent of mucosal damage

There's no treatment options other than the gluten-free diet so I'd say the primary goal is establishing damage rather than the extent.

38 minutes ago, CaroCaroCaro said:

I want to understand why this is valuable and what would be the cost of not doing the biopsy.  Can anybody help?

I'll split my answer between the medical profession and the patients themselves. Celiac can affect various systems of the body and for many the digestive aspects aren't the worst symptoms, but it's gastroenterologists who diagnose it and I think they're always going to opt in favour of taking a look and seeing exactly what's going on.

For patients I think it ultimately comes down to the individual. Some people want the reassurance of a definitive diagnosis to 'keep them honest' on the gluten-free diet. Maybe they want a baseline so they can track progress on the diet? Others need the confirmation from biopsy to justify embarking on a neccesarily complex and potentially isolating diet. Maybe they're worried about other damage that may have taken place. But others decline the test and are happy to go gluten-free without the procedure. It comes down to a personal choice. Do you need that certainty?

Where I'm from there was no charge. I'd already decided to go gluten free on the basis of my reaction to the gluten challenge so if there was a large fee I may not have gone ahead with the scope. I tested negative, which was frustrating and the procedure wasn't exactly pleasant (I chose no anaesthesia) but it did reveal a hiatus hernia which was useful info to have.  

Best of luck!

 

[Gemini 836]

Hi Caro!

I will answer from the perspective you are looking for.....the person who was diagnosed based on bloods and refused the biopsy.  It helped that I presented with classic Celiac so could have been a poster child for it. Small, thin female who, when I really hit the wall with it, was losing 1 pound per day.  I had no GI doctor at the time and still do not.  They failed me, big time, so I stopped going to them years before my diagnosis when I started to hear that it was all in my head and I should see a shrink.  I don't know what they failed to see because I was textbook, all the way.

The week everything exploded on me, literally, I researched various ailments, according to my symptoms and up popped Celiac. I had a fairly useless primary care who did not help me. I went to her that week and they just referred me to a gastro, even though I was really sick. When you are losing 1 pound per day, you are running out of time. During my research, I learned there was blood work for this but no one ever offered it to me.  I called my thyroid doc, who has always been very helpful, and told her it was an emergency and could she arrange the blood work for me? She had a kit drop shipped to her office in 1 day and the blood work was done. When the results came in, it was a Holy Shyte moment! 

I failed all of the tests on the panel, except 1........the tTg/IgG, which was very weird because the AGA/IgG was abnormal by 10 times the normal limit.  All other tests, including the EMA, were extremely positive. The AGA/IgG is the older version of the DGP test.  I kind of already knew it would be positive because of my amazing response to the gluten-free diet in just 3 days.  The most severe, acute symptoms subsided in just 3 days without using any meds so that is what really clinched it for me.  I also had 3 other AI diseases that are related to Celiac, had severe nutritional deficiencies and osteoporosis. My thyroid doc pretty much said I could go to a GI and get scoped but with my blood results and considering how sick I was at the time, it was not really needed for diagnosis.  I was losing weight so rapidly that it a no brainer that my gut was pretty much trashed.

This gives you an example of how different everyone presents and why each case should be taken individually.  I have never, ever doubted my diagnosis and become very messed up if I even am cc'd by gluten, never mind a full on direct hit.  No doctor I have seen in the past 12 years has ever doubted my diagnosis either, once they see my initial blood work and yes, I am still small. I have also had no reason to ever be scoped since because all is well with my gut now and has been once I healed.

Have you had an vitamin panels to see if you have vitamin deficiencies?  What will happen if you decide to continue eating gluten is you most likely will continue to suffer damage until such a time when it can be more easily found during a scope.  You could pay for one now but, considering the small intestine has the surface area of a tennis court if it were laid out flat, it may come back negative and then I think you will be more doubtful. On the other hand, they could find damage but if it's minor, they may not diagnose you with Celiac based on that. The one thing that comes to mind is you popped positive on one of the more important, harder to trip tests in the Celiac panel.  As I said before, no other disease will cause a positive on the EMA but Celiac.  You also have Hashi's thyroid disease?  That's a biggie with Celiac....they are like pals. Often seen together and when you have both, it can cause a lot of problems if you are still eating gluten.  Have you considered gene testing to see if you carry the main genes which can predispose you to trip for the disease?  That can be done without a doctor because all it takes is a cheek swab.  They send you a long Q-tip, you swab, and then send it back.  I was double positive on that one too......it's on both sides of my family. I wish I could be that lucky with the lottery!

To end this ramble, I have never had any trouble sticking strictly to this diet.  There are reasons for that, which include liking to cook so altering recipes was easy for me. I got my life back when I went gluten free and considering I weighed 94 pounds at diagnosis, I never want to be that sick again or be that dangerously thin. I am still thin but now have some muscle....something which was impossible before because I was burning muscle to stay alive by that time.  There is no reason for people to become that sick from Celiac anymore.  We know too much about it. The decision on whether you need a biopsy to cement your diagnosis is all up to you to make but I understand how hard this is for you.  I think you have it, based on what you have said, but I am not a doctor. I wish you the best of luck with your decision and please let us know what you decide.  We are here to support you no matter what you do! 

[ravenwoodglass 1,350]

Some doctors will give an 'official' diagnosis based on positive blood work  and symptoms if after rechecking the bloods after a few months gluten free they have decreased and symptoms have been or are resolving.  I was diagnosed without a biopsy because one doctor told me never to touch gluten again and the GI then demanded a challenge and my reaction was so severe that I had a GI bleed after just 3 days back on gluten.

 

[RMJ 96]

I could not have a biopsy when I first got my blood test results (due to an unrelated medical/doctor issue).  But I was high positive on EMA, TTG IgA and IgG and DGP IgA and IgG.   I am thin but did not have GI symptoms - I was tested due to migraines.  I was not diagnosed with celiac, the official diagnosis was abnormal celiac panel.  Doctors left it up to me to decide if I wanted to go gluten free or not.  I decided that I did not want high levels of anti-self antibodies so I went gluten free and the levels came way down. The change in levels with the change in gluten ingestion told me that my body did indeed respond adversely to gluten and that I am super sensitive,  After 3 years the DGP IgA was still elevated and I was due for a routine age 60 colonoscopy.  Because of the high DGP IgA (and a new doctor for the unrelated problem) my GI decided to do an endoscopy at the same time.  I have some blunted villi.  Now I have an official celiac diagnosis.

If you decide to skip the biopsy and go gluten free, an improved followup antibody test may confirm that your body reacts badly to gluten.

[CaroCaroCaro 2]

Wow! It's so interesting to hear everyone's different path and story!

This gives a lot to think about.

Personally,  I know I have high antibodies (EMA being one of them).  Because EMA specifically is high, from what I've researched, I think I will go gluten free regardless of the biopsy.  If I don't have damage I can't imagine that damage is far away.  I was tested about 18 months ago, the doctor ignored (and I didn't even see) the results,  my GP re-tested the blood work last week and 3 categories had higher scores than previously.  I have very mild GI symptoms (so mild I'm not sure whether they count) but I have two auto-immune diseases and I'm not interested in more.  

Being a person who appreciates research -  I'm kind of curious to know whether there's damage and the extent of the damage.  Being a person who doesn't like spending $3,000 or having tubes down my throat,  I'm rather less inclined. I've been referred to a Gastroenterologist that I will see at the end of the month.  I'm going to talk to the doctor about it, get his opinion, weigh it - and then make my own decision.  

Thank you all so much for your responses. It is interesting and so helpful to hear everyone's story!  

[AhhhNold 1]

I too am questioning whether mine is worth it or not. Was gluten free for over a month and finally feeling relief. Found out I had to consume gluten again for my biopsy to show up so that meant breaking my diet for 3 weeks. 4 days in and I am absolutely miserable. So much gas pressure and pain and belching, bad back pain. Abdomen feels like it's burning. And still have 2 and a half weeks left. Till what? To find out what I already know that this crap makes me feel awful and not to eat it again! So tempting to say screw it and keep the money and just stay back on the diet.

[cyclinglady 1,154]

Here is my two cents.....

My hubby went Gluten Free 16 years ago based on the poor advice of my allergist and his GP (PCP).  Well, it worked!  It took  a good year to master the gluten-free diet and to feel well.   Four years ago, I went for a routine colonoscopy.  During my GI consult, he recommended celiac testing.  I was shocked!  Okay, I am small and had anemia forever, but no big GI issues as long as I stayed away from garlic, nuts, dairy, and eggs (almost all resolved on a gluten-free diet).   I had one positive ONLY on the DGP IgA.  So, I scheduled my endoscopy seven weeks out due to work constraints.  I ate a loaf of sourdough bread a day....I kid you not!  By the end of seven weeks, I knew I had celiac disease.  I probably had it for years, but denial ....you know.  Biopsies revealed a Marsh Stage IIIB.  I knew what going gluten-free meant, so I am glad that I had definitive proof.

Hubby would be the first to tell you that I have had WAY more support from family, friends and medical.  So, it is possible to go gluten free and skip the biopsy.  It is a choice you need to make based on your own set of issues.  

I wish you well!