Blood Panel Positive But Biopsy Normal

[kikila44]

Hi there--new to forum and recently struggling with possible celiac diagnosis but still unsure. Bit of background--on and off symptoms for 5 years of waking up in morning with sudden onset on nausea/gutache, cannot eat-minor vomiting in morning, anxiety, depression, fatigue. This goes on for a couple of days, then wake up next morning and its gone. I am female age 38 now. Started at age 33ish but the strange thing is I suspected it was hormonal (and still do) because I chart my periods and a LOT of the time the symptoms are gone when I get my period.

Anyhow--move to present-last time this happened was this year in April-May-it went on for too long and I lost a lot of weight,etc. and for a whim my aunt said to get tested for Celiac (she's a nurse and said my great-great uncle had it). So I did. Here are the results:

reference for all was -<20

Gliadin Antibody, IgA H 134

Giladin Antibody, IgG H 20

Tissue Transgluataminase AB IgA H 50

Tissue Tansgluataminase AB IgG 19

This prompted the doctor to tell me to get a EGD and colonoscopy. Of course the results are "normal". The GI doctor wants me to go gluten-free anyhow.

What are your thoughts out there? I am still eating gluten now-have none of my symptoms at the current moment (like usual) and I can go months and months without feeling "bad". Do I go by the blood tests, get them retaken? Why would I feel just fine and have no celiac sprue indicators in my intestine?

Thank you for your time.

[GlutenFreeManna]

From what I have read, the blood tests often give false negatives, but very rarely give false positives. SO based on your blood tests you have celiac. The reasons why the biospy may have come up negative are many:

1. the damage can be patchy and they may have missed it

2. The damage may be in a part of your intestine that endo couldn't reach (I have read it only goes so far up or down, not the entire length of your intestines)

3. Perhaps you are in an early stage and don't have enough damage yet for it to show up on a biopsy. There's not enough research on how damage develops over time when celiac's continue to ingest gluten.

4. The biopsy test results can be mis-read by the doctor--have you gotten your results yourself to see what they say? Sometimes I read results here that say they have villi damage be the test is "inconclusive" so it gets reported to the doctor as normal. If you have any villi damage, that plus a positive blood test makes it very certain you have celiac.

5. doctors seem to be hesitant to diagnose celiac for a variety of reasons at least in the US (insurance, difficult of patients adhering to the diet, the need/desire for more testing, etc.). So you may have to push your doctor to give you a formal diagnosis if it is important to you to have that.

Bottom line though is that your doctor told you you should go gluten free, and you really should heed that advice regardless of the biopsy results. If you need motivation to stick to the diet, just read up on all the additional diseases/disorders that celiac's can develop: from skin rashes to other auto-immune diseases to cancer. Besides all this, you may find that other things you thought were "normal for you" go away once you become gluten free.

[Skylark]

Hi and welcome. There was a fairly large prospective study of people with positive blood tests and negative biopsies. Many in the arm of the study who continued to eat gluten went on to develop damage. Those in the gluten-free arm of the study had antibodies go away and felt so much better that they elected to stay on the diet. Basically, you're early or "latent" celiac and your doctor is right that you should probably not be eating gluten. You might be surprised at all the little, nagging health problems that disappear once you've been gluten-free for a few months.

[kikila44]

Hi and welcome. There was a fairly large prospective study of people with positive blood tests and negative biopsies. Many in the arm of the study who continued to eat gluten went on to develop damage. Those in the gluten-free arm of the study had antibodies go away and felt so much better that they elected to stay on the diet. Basically, you're early or "latent" celiac and your doctor is right that you should probably not be eating gluten. You might be surprised at all the little, nagging health problems that disappear once you've been gluten-free for a few months.

Thanks for the advice. I think I will go ahead and try it. I am scared as no one in my family or friend group even has to deal with this. I know a couple of people from my church who are celiac and willing to give me help and advice. I guess I just can't believe it-not when I read all the posts on how sick people are, etc and how I just basically stumbled upon this diagnosis by accident not really looking for it. I will be grateful if that is all I do have to worry about and not all the other difficult health issues people have out there. God Bless.

[Jestgar]

I had no idea how sick I was until I stopped eating gluten. Some things creep up so gradually they just get incorporated into your life.

[ravenwoodglass]

Thanks for the advice. I think I will go ahead and try it. I am scared as no one in my family or friend group even has to deal with this. I know a couple of people from my church who are celiac and willing to give me help and advice. I guess I just can't believe it-not when I read all the posts on how sick people are, etc and how I just basically stumbled upon this diagnosis by accident not really looking for it. I will be grateful if that is all I do have to worry about and not all the other difficult health issues people have out there. God Bless.

I am thankful for you that this was caught early on. For years my issues were thought to be hormone related because they were at their worst during and before my period. Then eventually they got worse and were a daily nightmare.

I am glad you can get on the diet and prevent the illness that destroyed so many of us before we finally got diagnosed. Every one of your first degree relatives now need to be tested. Many don't realize that you don't have to have constant D and weight loss to be celiac. It can effect any body system including the brain.