Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Prometheus Celiac Plus Test Results - Interpretation

Ginger7

Recommended Posts

Ginger7 Rookie
Ginger7
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


nora-n Rookie
nora-n
Posted

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 Collaborator
Skylark
Posted

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 Rookie
Ginger7
Posted
  • Author

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 Collaborator
Skylark
Posted

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 Veteran
IrishHeart
Posted

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. :rolleyes:

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 Rookie
Ginger7
Posted
  • Author

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Ginger7 Rookie
Ginger7
Posted
  • Author

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 Rookie
nora-n
Posted

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 Veteran
IrishHeart
Posted

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". :rolleyes:

AVR1962 Collaborator
AVR1962
Posted

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 Veteran
IrishHeart
Posted

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. :rolleyes:

IMHO

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

Ginger7 Rookie
Ginger7
Posted
  • Author

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 Veteran
IrishHeart
Posted

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 :rolleyes: from your doctor when you ask.

Keep us posted!

  • 1 month later...
Ginger7 Rookie
Ginger7
Posted
  • Author

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 :P

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,554
    • Most Online (within 30 mins)
      7,748
    Becky 0163
    Newest Member
    Becky 0163
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.