Prometheus Celiac Plus Test Results - Interpretation

[Ginger7]

I've posted my symptoms before, that have progressively gotten worse over the last several years, coinciding with pregnancies. New Year's eve, I had enough and went gluten free to the best of my ability. Five days into gluten free diet, I had the Prometheus Celiac Plus test done. I knew that being gluten free could impact the results, but figured 5 days would not make a huge difference. Here are my results.

Serology

Deamidated gliadin peptide antibody, IgG (DGP IgG) <0.4 EU/ml (<4.9EU/ml)

Deamidated gliadine peptide antibody, IgA (DGP IgA) 0.3 EU/ml (<6.1 EU/ml)

anti-human tissue transglutaminase IgA ESLISA (TTG IgA) 0.2U/ml (<10.3U/ml)

anti-endomysial IgA IFA (EMA IgA) Negative (Negative)

Total serum IgA by Nephelometry (TOTAL IgA) 123mg/dl (44-441mg/dl)

Conclusion - celiac disease unlikely if patient is on a gluten containing diet and is IgA sufficient.

Celiac Risk Genes Detected:

DQ2.2 (HLA DQA1*0201:DQB1*0202) and DQ2.5trans (HLA DQA1*05)

Category #7 DQ2/other high risk gene, increased risk 16X, relative risk VERY HIGH (range of 1 (extremely low) to 8 (extremely high))

Overall summary interpretation is celiac disease unlikely, does not preclude development of disease. BTW, other than understanding the genetics indicate a higher risk, I don't fully understand those exact genetic markers.

A few weeks into my gluten free diet, my life has changed. I no longer have D 5-10 times per day nor the labor like intensive abdominal pains when going to the bathroom (like passing out type pains). All of my vitamin levels were low (B12, vit D, hematocrit, hemoglobin, ferritin, iron, etc). I am on weekly B12 shots and seeing a hematologist this week for possible iron infusions to get my iron stores back up to more normal levels. I believe I had a significant malabsorption issue given my symptoms and blood test results.

I guess I am a bit upset about my serology, but I do understand these are not 100% accurate and the fact that I was gluten free for five days. I guess I wanted the label to go along with my horrendous symptoms...

I do have 3 children, would people agree that they should be tested? My kids are currently eating a gluten containing diet. I am the only one so far that has decided to go gluten free. I spoke to my PCP, she recommends sticking with gluten free diet.

[nora-n]

you probably have one DQ2,2 and one DQ7,5 and those make up a DQ2,5 in trans

at least 20% of celiacs with atrophy of the villi have negative blood tests so negative tests do not matter so much

[Skylark]

Five days wouldn't affect your tests. You're either a seronegative celiac or have a very strong non-celiac gluten intolerance. There is no way to tell without an endoscopy.

It makes sense to have your children tested. The good news is that since your high-risk gene is half on one chromosome and half on the other, your children will only get a high risk gene if your husband happens to have certain genetics.

[Ginger7]

Thanks everyone for your replies. I am not going back to eating gluten, stopping it was absolutely life changing. I guess I was just looking for, "see, I told you so" lab results.

[Skylark]

Thanks everyone for your replies. I am not going back to eating gluten, stopping it was absolutely life changing. I guess I was just looking for, "see, I told you so" lab results.

The positive lab results are surprisingly hard to come by.

[IrishHeart]

I am a serio-negative Celiac. I do not have a "see, I told you so!" lab result either

I only have the last year of slow recovery as evidence of reversing the damage done to my body and brain. And a New GI doc who says he never saw celiac manifest in anyone the way it did in me (with dozens of horrible symptoms) and he monitors me closely.

Had I kept going by the repeatedly negative celiac panels, and listening to medical professionals (who only went by the lab test) say "it's not Celiac, you can eat gluten", I'd either be in a wheelchair, mental health ward or dead by now.

It was that bad.

Your positive response to the gluten-free diet speaks volumes.

Glad you are feeling better!

Welcome to the board and enjoy your new healthy life.

Cheers,

IH

[Ginger7]

Thank you again,

I honestly thought I had cancer, that's how bad I felt before stopping gluten. While looking for the cause of my abdominal pain, I had a CT scan which revealed a large mass on my liver. It turns out to be a giant hemangioma which is not cancer but will likely require major surgery to come out due to size and position relative to my other organs/arteries. It's funny how things turn out.

I'm going to the Liver Center at Johns Hopkins next week for that.

It's been one heck of a few weeks!

[Ginger7]

Oh, I meant to add that while I do feel tremendously better, I do have many ongoing symptoms. I have had bad joint pain, especially lower back pain. I have been using a heating pad for awhile now and I rarely take Tylenol for headaches or anything like back pain. I've needed this more recently.

Hopefully these symptoms will resolve over time. I also had an endoscopy and colonoscopy last month. I don't think he took enough samples for the endo, four maybe and that did not show celiac. I have the brief report and am waiting for my full records to see if anything else is mentioned. My doctor told me before the scope that he didn't think it was celiac so i dont think he looked that hard for it. I'm actually really surprised he didn't suspect celiac from my symptom list and the fact that I was pregnant when I first saw him and lost 40 pounds within weeks of being postpartum. The symptoms got way worse after delivery. I was so dehydrated during pregnancy that I had iv fluids and only now, five months postpartum am I feeling better with regards to hydration now that my D is gone. I think my GI doctor was either a dud, or his speciality is something else, not celiac.

[nora-n]

Someone else mentioned hemangioma here recently, so I googled it, and there seems to be some connection to celiac and hemangioma.

In some other postings somewhere else on the net someone mentions the hemangioma disappeared on a gluten free diet. I do not know if yours will.

[IrishHeart]

I'm actually really surprised he didn't suspect celiac from my symptom list and the fact that I was pregnant when I first saw him and lost 40 pounds within weeks of being postpartum. The symptoms got way worse after delivery.

Since pregnancy often triggers celiac in those predisposed to it, this is not surprising to any of US on here. Can't speak for the doctors. Many of them still consider this a "rare childhood disease".

[AVR1962]

If your children are still taking in gluten, have them tested. I have 3 children and after I was diagnosed I had my youngest (15) tested. Test came back negative. I have had some concern as she deplays a bit of depression and she almost seems autistic in some ways. I spoke with the pediatrican who suggested that I not encourage the removal of gluten at this age because the diet for teens is bad already and if you take out even more options it could lead to malnutrition. My two older adults never had the tests done but they, and their kids, are all on gluten-free/dairy-free diets and all doing so much better than before.

[IrishHeart]

I spoke with the pediatrican who suggested that I not encourage the removal of gluten at this age because the diet for teens is bad already and if you take out even more options it could lead to malnutrition.

WTH???

With all due respect, how is a healthy balanced diet going to lead to malnutrition???? That makes no sense.

What " diet" for teens? Does he mean pizza and junk food? So if that is removed, by removing gluten, how is that BAD??? I am confused.

If your child feels better off gluten, how is that a bad thing?

I do not understand this thinking by the pediatrician at all.

IMHO

But then again, I stopped wondering WHY doctors say/do/think the things they do a long time ago.

[Ginger7]

Poof, be gone, giant hemangioma! That would be AWESOME, if resulted from gluten free diet! I will put that on my list of questions for my appt next week!!

[IrishHeart]

Poof, be gone, giant hemangioma! That would be AWESOME, if resulted from gluten free diet! I will put that on my list of questions for my appt next week!!

Do not be surprised if you get a giant from your doctor when you ask.

Keep us posted!

[Ginger7]

Went to John's Hopkins, good news is don't have to do anything but monitor. So I will get an MRI in six months.

Bad news-no fight club for me