Newbie Confused By Test Results

[Bruin10]

Hi All, this is my first post on this forum. I am a bit confused by my test results since the GI doctor I've seen doesn't feel they are conclusive enough to diagnose as celiac disease.

My test results are:

TTG IGG: normal

TTG IGA: 1.5 (0-0.9 normal)

Genetic Testing: I do not have the HLA DQ2/ DQ8 genes

Biopsy: Sections demonstrate partially fragmented small intestinal mucosa with a minor subset of partially blunted villi. There are focal intraepithelial lymphocytes noted, approximating 25 per 100 enterocytes, which falls below generally accepted diagnostic threshold critera. Further clinical correlation is required as to the significane of the findings.

My doctor said that neither my TTG IGA result or my biopsy results were strong enough to really point to celiac disease. She then had the genetic testing done as she thought if I had those genes it may make a stronger case for it. It turns out I don't have the common genes so she feels it is unlikely I have celiac but may just have gluten intolerance. The reason I am unsure if it's just gluten intolerance is that my symptoms seem very aligned with celiac (extreme nausea, digestive trouble, fatigue, canker sores, and I've lost 23 pounds since mid-May (when my symptoms started)). I know the weight loss could be partially due to the fact that I was eating much less when I felt the worst but I don't feel I was eating that much less to lose that much weight.

I had the biopsy done early July after having gone gluten free for 4 weeks (I now know I didn't do a great job of it) and then eating a gluten heavy diet for 6 days before (I know this isn't much time but frankly I didn't feel like I could have continued the gluten challenge for much longer). I feel my biopsy may not have shown horrible damage since I didn't eat much gluten before and if I have celiac I don't think it really started till this May.

Sorry for the very long post but if anyone has any advice on the diagnosis process that would be great. I think I am going to get a second opinion since my GI doctor said celiac is a autoimmune like disease not an autoimmune disease (and we know that isn't true).

[Bubba's Mom]

Hi All, this is my first post on this forum. I am a bit confused by my test results since the GI doctor I've seen doesn't feel they are conclusive enough to diagnose as celiac disease.

My test results are:

TTG IGG: normal

TTG IGA: 1.5 (0-0.9 normal)

Genetic Testing: I do not have the HLA DQ2/ DQ8 genes

Biopsy: Sections demonstrate partially fragmented small intestinal mucosa with a minor subset of partially blunted villi. There are focal intraepithelial lymphocytes noted, approximating 25 per 100 enterocytes, which falls below generally accepted diagnostic threshold critera. Further clinical correlation is required as to the significane of the findings.

My doctor said that neither my TTG IGA result or my biopsy results were strong enough to really point to celiac disease. She then had the genetic testing done as she thought if I had those genes it may make a stronger case for it. It turns out I don't have the common genes so she feels it is unlikely I have celiac but may just have gluten intolerance. The reason I am unsure if it's just gluten intolerance is that my symptoms seem very aligned with celiac (extreme nausea, digestive trouble, fatigue, canker sores, and I've lost 23 pounds since mid-May (when my symptoms started)). I know the weight loss could be partially due to the fact that I was eating much less when I felt the worst but I don't feel I was eating that much less to lose that much weight.

I had the biopsy done early July after having gone gluten free for 4 weeks (I now know I didn't do a great job of it) and then eating a gluten heavy diet for 6 days before (I know this isn't much time but frankly I didn't feel like I could have continued the gluten challenge for much longer). I feel my biopsy may not have shown horrible damage since I didn't eat much gluten before and if I have celiac I don't think it really started till this May.

Sorry for the very long post but if anyone has any advice on the diagnosis process that would be great. I think I am going to get a second opinion since my GI doctor said celiac is a autoimmune like disease not an autoimmune disease (and we know that isn't true).

Unfortunately the testing isn't 100% accurate. Even the genetic tests can be misleading. Most Dr.s only consider DQ2 and DQ8 as Celiac genes. As time and study goes on though, they're finding more genes are Celiac.

Your scope showed some damage. With your gluten restriction it's possible that you started healing enough to make the damage patchy/less severe? What does your Dr. say about the damage? Did you ask what it is if it's not Celiac?

In cases where the tests are inconclusive, I always think it's best to err on the side of caution. As a test go completly gluten-free for at least 3 months. Don't go gluten lite. Stop dairy too, because villi damage will make you lack the enzymes that digests lactose, and proteins from milk can pass through the intestine into the bloodstream causing symptoms. See how you feel? That may be your DX.

If you see another GI, I'm afraid you'll get the same tests repeated and get the same non-Dx.

It would be a good idea for you to take probiotics if you aren't currently taking them. They help balance the gut and aid in digestion.

Best wishes to you. I hope you can sort out the answers that put you on the road to good health.

[Bruin10]

Unfortunately the testing isn't 100% accurate. Even the genetic tests can be misleading. Most Dr.s only consider DQ2 and DQ8 as Celiac genes. As time and study goes on though, they're finding more genes are Celiac.

Your scope showed some damage. With your gluten restriction it's possible that you started healing enough to make the damage patchy/less severe? What does your Dr. say about the damage? Did you ask what it is if it's not Celiac?

In cases where the tests are inconclusive, I always think it's best to err on the side of caution. As a test go completly gluten-free for at least 3 months. Don't go gluten lite. Stop dairy too, because villi damage will make you lack the enzymes that digests lactose, and proteins from milk can pass through the intestine into the bloodstream causing symptoms. See how you feel? That may be your DX.

If you see another GI, I'm afraid you'll get the same tests repeated and get the same non-Dx.

It would be a good idea for you to take probiotics if you aren't currently taking them. They help balance the gut and aid in digestion.

Best wishes to you. I hope you can sort out the answers that put you on the road to good health.

Thanks for the advice. I feel it's possible that my test results weren't as bad because I wasn't eating gluten for very long and I only started feeling sick in mid-May but I'm not sure. I have gone gluten free since the endoscopy and feel I am getting somewhat better (I am eating a solid 3 meals a day unlike before but I still have some digestive issues). I've heard it can take a while to feel better but I'm also wondering if I'm still getting slightly glutened since I live in a house which is not primarily gluten free. I am laying off dairy and taking probiotics which I think has helped slightly.

If I see another GI doc I don't really have any interest in repeating tests which would require me to eat gluten again (was not fun the last time I did it) so I guess I'd just like to get someone else's thoughts on my symptoms. Should I consider other blood tests or are there are other genes they can look for?

[GFinDC]

Hi,

Jestgar posted this article reference a few days ago. It describes new research showing there is a condition that is not celiac but has celiac like in symptoms. The doctors are starting to catch up with us a little. You could look into Enterolabs testing also, but it is not considered diagnostic. If your symptoms from waiting gluten are bad, and you flunk the antibody tests, then you may be one of these non-celiac wheat sensitive people. Often the term NCGI, (non-celiac gluten sensitivity) is used for it. Since it hasn't been studied for long, not much is known about it except that it causes people symptoms when they eat gluten. So the answer ends up the same as for celiac, don't eat gluten!

Open Original Shared Link

Non-Celiac Wheat Sensitivity Diagnosed by Double-Blind Placebo-Controlled Challenge: Exploring a New Clinical Entity

Antonio Carroccio, Pasquale Mansueto, Giuseppe Iacono, Maurizio Soresi, Alberto D'Alcamo, Francesca Cavataio, Ignazio Brusca, Ada M Florena, Giuseppe Ambrosiano, Aurelio Seidita, Giuseppe Pirrone and Giovanni Battista Rini

[nora-n]

What genes do you actually have?

There have been several DQ2,2 celiacs here, and a few with half a DQ2,5 gene. Also, there were some DQ6 officially diagnosed celiacs.

Your biopsy report and blood test look very much like celiac, considering you went off gluten for four weeks prior to the testing. The one week back on gluten is not enough to bring back the heavy damage. Still, your villi were blunted and that is celiac too.

Here is more about the IEL