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Avalon451

Negative Biopsy, Against All Reason

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So my biopsy results came back today. My GI was sure I had it, because of my extensive symptoms: D for 7+ years, digestive issues ever since I can recall, achy bones, optical migraines, peripheral neuropathy, depression... and my daughter tested positive on blood, skin biopsy for DH, and endo biopsy. My other two daughters both have bloods indicative of celiac, though we're not getting them scoped.

When he did the biopsy, he took 20 samples, put them on two slides, and sent it off. The photos of my duodenum show extensive cobblestone appearance "suspicious for celiac" as his notes put it. The lab came back with a negative result, however! He said "I was very surprised, as I'm sure you are, that it came back negative. However with your normal biopsy and negative tissue transglutaminase antibody, it can be taken as very good evidence that celiac is NOT present. You may still be gluten intolerant or it may be that the long history of D and dyspepsia is all due to IBS."

My question: if my daughters have it, and I had one borderline bloodwork indication, and my husband tested negative... it's got to be from me that they got it, right? So am I "latent" or what?

Don't get me wrong, we're still all going gluten-free. It's just frustrating to wonder: do I really have it, will it trigger someday, what exactly is the deal?

One thing I noticed; on my daughter's endo, the lab (at Children's Hospital in Seattle; presumably a better lab than our local clinic) they tested for intra epithelial lymphocytes (if they're increased to >30/100 then that's a clear indication of celiac). I didn't see that they tested that for mine. Wonder if that's significant.

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The one thing you have to keep in mind is that your daughters may well have got it from you, that you all carry the same predisposing gene(s), but that yours hasn't fully triggered yet. (And may not ever as far as the testing is concerned :( ) So many people do have all the symptoms but still test negative. And it may be latent celiac or it may be NCGI. And as your realize, that does not mean you can merrily eat gluten.

AS far as the IEL's are concerned, they generally, I believe, only mention them if they are present, not if they are absent (i.e. positive vs. negative).

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The hands-down expert on celiac, Dr. Alessio Fasano, has written that he no longer believes that a biopsy is the "gold standard" anymore for diagnosing celiac disease. Apparently, there are many factors that can cause a person who truly has celiac to have a negative biopsy: for one thing, the damage to the villi can lie beyond the reach of the scope; for another, the skill of the pathologist may be questionable. In a recent study, the pathology reports were more accurate if they were issued from a teaching hospital than from a standard one.

Also, I have to tell you that I study the faces of celiacs at annual conferences to see if our bone structures are similar. There is a study from Italy that has shown that celiacs' facial bones are different that those of "normal" people, perhaps because our bones continue to grow into our 20s (we have trouble absorbing the hormone that stops our growth). What I've observed is that there appear to be very definite differences in the faces of celiacs, and when you've posted in the past, I couldn't tell if YOU were the celiac...or your husband. You both have what I refer to as "crescent" faces, which belong to people with celiac (based solely on my own observations). From what I've observed, many of us have facial bones that are prominent and somewhat curved--our cheekbones, jaws, and chins. When we turn our faces 3/4 and smile, we look like the caricature of a smiling crescent moon. Since other studies support that we tend to be attracted to people who mirror our own faces, it's not unusual that we should choose other celiacs as our mates. This would explain why so many couples discover later in life that they have, in fact, married another celiac. I only bring this up because I think that it's possible that you BOTH have celiac--the testing is not very reliable...and I think it's possible that your husband also has celiac. This is why so many of your children are so afflicted. Just my opinion...

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Avalon, Dr. Fasano has noted that biopsies are not entirely reliable. He is hoping to start a diagnosis procedure where to diagnose Celiac you have to have 4 out of 5 criteria: symptoms, genes, positive blood work, villous atrophy and positive result from the diet. You most likely will meet 4 of the 5 criteria. Maybe that will help your doctor. I would get gene tested. Ask him to do it through prometheus and hopefully insurance will cover it.

The other thing to remember is that you may not have developed full Celiac. You may be on your way. To wait until you are fully damaged to get a diagnosis is sort of crazy. I think if you may want to get that gene test (with three kids Celiac there is a good chance that both you and your husband are carriers of the gene). My neighbor is in that boat. All three of her kids carry the gene and one is Celiac and almost died at 18 months from malnutrition.

Here is the link to the article. It is a good one! Dr. Fasano

Edited by researchmomma

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That's good news that you don't have a lot of autoimmunity. :) Be happy! All your problems will still likely go away off gluten, it just may be that you have strong gluten intolerance. Maybe you're latent celiac, maybe not. I don't think there is a clear answer for your questins becasue the tests are too limited. Being gluten-free will ensure that if you are latent celiac, you never seroconvert to a strong positive and have villous atrophy. You may not also have the high risk of autoimmunity that a lot of us do.

I bet you feel much better after a few months on the diet.

Rosetapper, that's fascinating about celiac faces.

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When my son tested positive (blood) for celiac and I started learning about it, I quickly realized that I had all the symptoms of it and the things I had been to the MD for in the past 6 years could all be explained by celiac disease (dizzy spells, heart palps, GI issues, headaches, numb fingers and toes, etc. etc.) It was a relief to finally figure it out. My blood test came back positive. Then, strangely, my biopsy was perfectly normal and my GI said, "maybe your original blood test was wrong . . . maybe IBS, etc. etc."

By this time my son (6) had been diagnosed by biopsy so I knew he had it (no symptoms - weird) so we both went gluten-free. All my symptoms went away and I feel better than I have in years. When I recounted this story to my son's GI (a celiac disease specialist and researcher) she said that I totally have it (obviously!) and the biopsy could be correct (no damage) due to the fact that I just haven't had it long enough to cause damage. Or incorrect - human error - not enough samples taken, not read correctly, etc etc. My "official" diagnosis is "gluten intolerant" but she is convinced I have celiac disease too.

It makes no difference. If you go gluten-free and feel better, who cares what the doctor found.

Also, I am absolutely certain my mother-in-law has it, so I suspect it is on both sides of the family. Husband tested negative and has no symptoms, but it wouldn't surprise me if my kids got the gene from either one of us.

Cara

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