Dna Test Positive, Biopsy Negative

[confused mom]

My daughter tested positive for Celiac with a blood test, but her endoscopy biopsy was negative. The doctor said that she has "Latent Celiac" and that her severe stomach aches were not at all caused by Latent Celiac, but by IBS (irritable bowel syndrome). We had a DNA test done for her and it came back positive for the DQ2 gene, meaning she is highly likely to have Celiac at some point. If the Celiac is latent and hasn't "happened" yet, does she really need to be gluten-free for the rest of her life? I asked the doctor that question and he said that the jury is still out on that. No one knows if/when she will actually have full-fledged Celiac, so he wants her to be gluten-free just in case. I hate to have her deal with this life-changing diet if she does not need to. Has anyone else experience "Latent Celiac" and, if so, did you decide to go gluten-free? I'm having a hard time accepting this since the doctor said that her stomach aches weren't even caused by gluten. So why are we going gluten-free if it's not going to help her stomach? (She has been very constipated, so treatment for that has improved her stomach aches).

[ravenwoodglass]

If she had positive blood work she has celiac and the diet will relieve her symptoms. How many biopsies did the doctor take? What were the results of those biopsies? Some doctors won't diagnose until the villi are totally destroyed. In addition damage can be patchy and get missed. Going gluten free is what she needs to do and you are in the right place for info and support with that. Also everyone in your family should get the blood tests, not all celiac presents with GI problems and it is associated with many other issues also from mood issues to arthritis to skin problems and much more. Ask any questions you need to and I hope she is feeling better soon.

[confused mom]

If she had positive blood work she has celiac and the diet will relieve her symptoms. How many biopsies did the doctor take? What were the results of those biopsies? Some doctors won't diagnose until the villi are totally destroyed. In addition damage can be patchy and get missed. Going gluten free is what she needs to do and you are in the right place for info and support with that. Also everyone in your family should get the blood tests, not all celiac presents with GI problems and it is associated with many other issues also from mood issues to arthritis to skin problems and much more. Ask any questions you need to and I hope she is feeling better soon.

Her biopsy report states:"duodenal mucosa with mildly increased intraepithelial lymphocytes. Villous architecture is unremarkable. Plasma cells are present but there is no increase in lamina propria inflammation and no foamy macrophages. The findings can be seen in symptomatic, latent, or partially treated gluten sensitivity (celiac sprue)."

[ravenwoodglass]

The findings can be seen in symptomatic, latent, or partially treated gluten sensitivity (celiac sprue)."

I think your doctor may have put her in the 'latent' catagory because she has C and not D. She is symptomatic but unfortunately her doctor wants to label her with IBS. At least he did tell you she needs to be gluten free for life and that is what you need to concentrate on. Some doctors might have said to keep her on gluten and come back in a year to see if the villi are destroyed yet but that could do a lot of damage to other organs, some that would take years to repair if at all. I know that her needing to be gluten free is not likely to be what you want to hear but that is what needs to be done.

[Darn210]

I'm not a doctor . . .

Positive blood test = Celiac disease in my book. Furthermore, I would bet those stomach aches are from Celiac Disease. IBS is a catch-all for generic gastro stuff going on but the doc is not sure why. Being positive for the gene does not mean that you will develop Celiac Disease. About a third of the population has the gene but only about 1% develop the disease. (I believe Dr Green says that in his book "A Hidden Epidemic")

She needs to go gluten free.

By the way . . . I was in the same boat as you. Positive blood test, negative biopsy. However, I had asked for a lactose intolerance test and that showed not only was the lactase enzyme low, but all the other enzymes that are produced in the tips of the villi were low as well. My doc diagnosed celiac based on the positive blood test. I was going to prove him wrong by following the diet to a Tee and showing him that her symptoms (regurgitation and constipation) didn't go away (yep, I was in major denial). . . ummmm, well the symptoms DID go away. Then as luck would happen, she had something with wheat in it (not just cc, but actually listed as an ingredient) and had an immediate reaction. We never looked back. Try the diet.

[confused mom]

I have another question - her symptoms came on suddenly this past November. She never had stomach aches (except for the occasional constipation) prior to that. I've heard so many people say that their symptoms lasted for years before a diagnosis. I think that's why I'm in denial since this happened so suddenly. Is that strange??

[ravenwoodglass]

I have another question - her symptoms came on suddenly this past November. She never had stomach aches (except for the occasional constipation) prior to that. I've heard so many people say that their symptoms lasted for years before a diagnosis. I think that's why I'm in denial since this happened so suddenly. Is that strange??

No it's not strange. The reason why so many of us have symptoms that lasted for years is because most of us were misdiagnosed for years. For me it was over 40 years although I had celiac symptoms since childhood. Doctors are finally starting to test for celiac and starting to realize that false negatives are common with testing but not false positives. For some celiac has a definate trigger that we can identify, for women it is sometimes childbirth, for some it is an illness like a severe flu or mono for example, an injury or surgery or it can be stress that triggers it and some can't pinpoint the trigger. The occasional constipation may even have been a symptom for her as some of us have C for a while before we start having D.