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What Does This Mean?


jade08

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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


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*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


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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.

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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
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    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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