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

Would You Consider This A Positive Celiac Result?


todzwife

Recommended Posts

todzwife Rookie

I didn't do the gene panel, but I am pretty sure I should have. Here is what we DID do...

Fecal Antigliadin IgA 59 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 36 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 1436 Units (Normal Range <300 Units)

I was really surprised how high the fecal fat score was (and more than a little worried)...

Should I take her for more testing?

FWIW, in December her RAST test showed an IGG of 112 for wheat (normal being under 15).


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Enterolab cannot and does not diagnose Celiac. It can only indicate gluten intolerance (although the person may have Celiac).

You may want to consider having the Celiac blood panel done, and the endoscopy (not only to look for Celiac, but for other disorders). Your doctor can also order the gene test.

Ursa Major Collaborator

Those results are high. How old is your daughter? If she is under six the chance of blood work and endoscopy being a false negative are high.

It doesn't really matter if it is officially celiac disease or gluten intolerance. Your daughter is obviously at least gluten intolerant, and has definitely quite severe malabsorption.

If it was my kid, I'd put her on the gluten-free diet immediately.

Rachel--24 Collaborator

I would request the Celiac panel, endoscopy and possibly genetic testing as well....as Happygirl mentioned.

If you're looking for an official diagnosis that would be the best way to go....however, there is always a possibility of false negatives...particularly with the biopsy.

Once you have these tests completed you can start her on the diet and see if there is improvement.

Many people choose to go ahead with the diet without any additional testing. If it were my daughter I'd have the testing done asap and then put her on the diet.

Once you start the diet the tests are not accurate...if you choose to have them done later she would have to get back on gluten for several weeks prior to testing.

I tested negative for Celiac and positive through Enterolab. I also had a high malabsorption score but no Celiac gene. The diet did not resolve my symptoms and I had to continue searching. For me it was helpful that I'd already had the bloodtests and endoscopy to rule out Celiac as well as other conditions.

I do have an intolerance to gluten as well as many other foods but I do not have Celiac Disease.

holiday16 Enthusiast

My son had a similar fecal fat score. His was 1254. I can tell you our experience with pursuing more testing. He has a heart defect so at his cardio. appt. I mentioned it to his ped. cardiologist and he was very concerned. We had been seeing a decline in his energy, but had assumed it was heart related. He had a stress test done and his heart was def. not the problem. My son had already had the blood test through my family Dr., but it was not the complete panel. What he did have done came back negative.

We saw a ped. GI who ordered several tests including a gene test. The gene test from prometheus came back showing he's 16X more likely than the general population to have celiac disease. Based on that he did a scope which showed severe damage from reflux. He took two samples in places that looked probably for celiac to have analyzed and I'm not sure what exactly the testing was they did, but we were told the GI Dr. ordered something more in depth to make sure there were no mistakes. I think he only took two samples because he was concerned about bleeding related to his med.

Both samples came back negative for celiac, but the GI Dr. has him on a 3 month gluten free trial to be followed by a gluten challenge. Two weeks on the diet we're already seeing improvement so it's pretty obvious he needs to be gluten-free. He has much more energy and many of the issues with fatigue that were concerning are improving.

Our family Dr. even suggested we try the diet and see if we noticed an improvement, but in his case with his heart defect I really wanted to push for more. I want to make sure he has all the followup bloodwork etc. that he needs. It's worked out well for us because I was able to find out from this Dr. more information about what tests the rest of us need being gluten-free and dh is going to have the blood test for celiac. So far he's the only holdout :o) My oldest was diagnosed by Enterolab, but negative bloodwork. Mine was Enterolab, but negative bloodwork and my youngest was diagnosed on response alone. Diet really is the best test even if everything else comes back negative.

todzwife Rookie

Thank you. She's only 2 and had some pretty severe allergies (including wheat, eggs, peanuts and soy) and although she was wheat free she didn't have complete relief from her symptoms. So I chose to do enterolab because of her age. She was 90% gluten free during about a 3 month time, but ended up eating some graham crackers and had a MASSIVE meltdown for a few days. I'm considering getting her tested for actual celiac but really the treatment is the same...

I'm just worried about the fecal fat score. It's SO high.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    2. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.