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

What Does This Mean?


jade08

Recommended Posts

jade08 Newbie

Hello,

I am a 35 year old mother of 3. The only symptom I have is consistant anemia. I take iron daily. My Family Doctor has tested me for all kinds of things that may cause my anemia. Everything has been negative until she decided to test me for celiac. I had never heard of it. She did the blood test Celiac Panel. She sent me a copy of the results with a letter stating concerns of celiac sprue disease with a referal and appt with a GI doctor in a week.

Could some on please tell me what these results mean? I have never felt sick and only slightly tired but I just chalked it up to chasing 3 kids around and low iron.

Any information will be helpful. I would also like to know what to expect when I see the GI doctor.

test results:

TTG Antibody,IgG 4

TTG Antibody,IgA >100

Endomysial Ab screen POSITIVE

Endomysial Ab Titer 1:40

Gliadin Antibody(IgA) >100

Gliadin Antibody(IgG) 21

Allergen (IgG) immunocap Gluten 8

I have no clue what any of these numbers mean.

Thank you for any and all help


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



Celiac.com Sponsor (A8-M):



*lee-lee* Enthusiast

From what i've learned in the past few months from this board, you don't have to have a ton of the "classic" Celiac symptoms to have the disease. Anemia and fatigue are 2 symptoms of Celiac though. i can't help with the test results but it means something if your doctor is referring you to a GI. that's exactly what my doc did.

my initial appointment with the GI was more of a consultation because i knew i needed to have an endoscopy. He asked me a bunch of questions about my symptoms and family history and we scheduled the biopsy.

the simple explanation for the endoscopy (in my non-medical opinion): they will sedate you with meds through an IV, insert a bite plate in your mouth, numb the back of your throat, stick a tube down there, check things out and take a few biopsys of your small intestine. you want them to take at least 4-6 samples for accuracy sake. i was super freaked out about the tube down my throat but i was asleep before they started. i woke up 30-40 min later in recovery and was a bit groggy for the rest of the day. my doctor notified me by mail of my negative result. i expect he would have called if he found anything.

despite the lack of official diagnosis, i've gone gluten-free as of July 1 and can definitely see a change in how i feel.

i'm sure there will be many more people to chime in with much more detailed info but i wanted to provide my basic explanation of what i experienced. good luck to you!

ShayFL Enthusiast

We need to see the "ranges" to help you interpret them. :)

jade08 Newbie
We need to see the "ranges" to help you interpret them. :)

That is one of my problems. The range field on all are blank. I called and questioned the nurse and my family doctor who both stated the GI consult will review the results with me. I can tell you that there are * by both >100 and the 21 and by the word POSITIVE. Which I was told means they are out of range, which range?? I have no idea since they seem to think I do not need that information.

I guess my only choice is to wait until I see the GI next week.

Thank you for taking time to try to help

aikiducky Apprentice

What Shay said, without the reference ranges we don't know which tests are above the reference ranges. But the Endomysial antibody was marked as positive and that is a very specific test for celiac (meaning there aren't really other things that could explain why it's positive).

The thing with anemia and celiac is that your intestine is probably damaged (hence the positive bloodtest). With a damaged intestine you're not absorbing nutrients properly, so you get anemic. Taking supplements wouldn't help because you won't absorb those well either. In time this could lead to very serious malnutrition, in other words, you'd slowly be starving. After you've had your biopsies, you might want to ask your doctor to also check your vitamin and nutrient levels, and also scan your bones for (beginning) osteoporosis, since that is also a concern when you're not absorbing everything well.

Pauliina

aikiducky Apprentice

We posted at the same time. :) I'm guessing out of range means they were so high positive they stopped counting. That happens sometime with some of these tests I've noticed from other people's posts.

I know it must be a shock right now and a lot to wrap your head around. keep reading here and asking questions and you'll get there eventually. :)

Pauliina

jade08 Newbie
We posted at the same time. :) I'm guessing out of range means they were so high positive they stopped counting. That happens sometime with some of these tests I've noticed from other people's posts.

I know it must be a shock right now and a lot to wrap your head around. keep reading here and asking questions and you'll get there eventually. :)

Pauliina

Thank-you for your help. My Dr. did test me for other deficiences Folate and B were in the normal low and calcium was good. I am a little low on Vit D, but living in Seattle that is kind of expected. I am now also taking a daily D suppplement per the Dr. I think the thing that scares me most is I have probably had this most of my life and all this time damage was done. I am really concerned about the long term effects. I had to have iron shots has an infant and all the doctors could tell my mom is it was due to me being premature. My iron was so low it shocked the doctors at the time now looking back she and I both think it is probably related to this.

With my iron low and always being low would they not recommend the shots again?

I am learning alot very fast.

Jade


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



Celiac.com Sponsor (A8-M):



ANDOBEAR Apprentice
Thank-you for your help. My Dr. did test me for other deficiences Folate and B were in the normal low and calcium was good. I am a little low on Vit D, but living in Seattle that is kind of expected. I am now also taking a daily D suppplement per the Dr. I think the thing that scares me most is I have probably had this most of my life and all this time damage was done. I am really concerned about the long term effects. I had to have iron shots has an infant and all the doctors could tell my mom is it was due to me being premature. My iron was so low it shocked the doctors at the time now looking back she and I both think it is probably related to this.

With my iron low and always being low would they not recommend the shots again?

I am learning alot very fast.

Jade

Are you actually anemic or are you iron deficient? I know they are used the same way but they are a bit different. Anemic is low hemoglobin while iron deficient is low iron/ferritin levels. I was iron deficient, with very low ferritin (iron stores) and low saturation. I had to go for weekly iron infusions for a month. The hematologist figures I will have to come in every so often for blood tests and probably more infusions for a while.

jade08 Newbie
Are you actually anemic or are you iron deficient? I know they are used the same way but they are a bit different. Anemic is low hemoglobin while iron deficient is low iron/ferritin levels. I was iron deficient, with very low ferritin (iron stores) and low saturation. I had to go for weekly iron infusions for a month. The hematologist figures I will have to come in every so often for blood tests and probably more infusions for a while.

My docotor states anemia my results were:

Iron was 23 (30-160) range

Saturation 4 (15 - 50 )%

Ferritin was 4.1 (12.0 -306.0)

I feel tired but I am on the go all the time, the Dr. has not mentioned any other treatment expcet I take slow FE Iron pills 3 a day since this last test.

Should I request a different method of treatment?

ANDOBEAR Apprentice
My docotor states anemia my results were:

Iron was 23 (30-160) range

Saturation 4 (15 - 50 )%

Ferritin was 4.1 (12.0 -306.0)

I feel tired but I am on the go all the time, the Dr. has not mentioned any other treatment expcet I take slow FE Iron pills 3 a day since this last test.

Should I request a different method of treatment?

Take the iron supplements for a while and see if you feel better. Get tested again in a month or two and see if it goes up. If things don't improve, request an infusion. I feel so much better. You may even want to schedule an appointment with a hematologist. You may get better advice there.

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. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    5. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

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

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748

    Atl222
    Newest Member
    Atl222
    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

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.