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lao512

Not Sure What To Think - Just Got Blood Test Results

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Hi everyone,

 

I am totally new here and don't know much of anything about Celiac. I'm hoping those of you with more experience can shed some light for me. I was diagnosed with Hashimoto's (autoimmune hypothyroid) in 2009, and recently, in January 2013, I was diagnosed as B12 deficient and low Alkaline Phosphatase (a liver enzyme). I've been on B12 shots since January. My B12 and Alkaline Phosphatase tests were repeated a couple of week ago and both were still low. Knowing that I have an autoimmune thyroid disease and that both B12 deficiency and low Alkaline Phosphatase can be caused by malabsorption, my (thankfully thorough) doc ordered some blood tests for Celiac. Here are my results:

 

Gliadin Ab IgA - 6 (normal range <20)

TISSUE TRANSGLUTAM AB IGA - <1 (normal range <4)

GLIADIN IGG - 5 (normal range <20)

RETICULIN AB (IGA) SCREEN - negative

 

I have a couple of questions. First, from the limited material I've read, the Gliadin Ab IgA and GLIADIN IGG are no longer considered the best indicators and are being replaced more and more with Gliadin (Deamidated) tests. Is this true? Also, I haven't been able to find much of any info about the Reticulin AB (IGA) screen test. How good of an indicator is it? Also, it doesn't look like they tested my total IgA, which from what I've read would show if I'm IgA deficient or not.

 

I don't know if I have symptoms or not. I will occasionally (once a month or so) become very bloated, with pain if I press on my abdomen. I've tried bloat medicines (such as gas-x) which provide no relief. After a day or two, the bloat goes away on its own. Also, my bowel movements are not regular. Some days I will have very loose stools (sometimes with and sometimes without the urgency of diarrhea), and sometimes I will go several days without any bowel movement at all. Sometimes I will have very solid stool, but with a very sudden urge to go (I would compare it to the urgency of diarrhea, but with solid stool). I never thought much about all of this until the doc mentioned Celiacs.

 

I also have still had fatigue and brain fog (which I initially assumed were related to my thyroid) even though I'm on thyroid meds and my TSH is normal.

 

Basically, my major question is, should I be satisfied with the blood tests above and a negative Celiac diagnosis, or should I press for additional tests? I'm so confused by everything I've read online and want to be able to properly advocate for myself, but I just don't understand most of it.

 

Thanks for any insight you can provide!

 

 

 

 

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Hi everyone,

 

I am totally new here and don't know much of anything about Celiac. I'm hoping those of you with more experience can shed some light for me. I was diagnosed with Hashimoto's (autoimmune hypothyroid) in 2009, and recently, in January 2013, I was diagnosed as B12 deficient and low Alkaline Phosphatase (a liver enzyme). I've been on B12 shots since January. My B12 and Alkaline Phosphatase tests were repeated a couple of week ago and both were still low. Knowing that I have an autoimmune thyroid disease and that both B12 deficiency and low Alkaline Phosphatase can be caused by malabsorption, my (thankfully thorough) doc ordered some blood tests for Celiac. Here are my results:

 

Gliadin Ab IgA - 6 (normal range <20)

TISSUE TRANSGLUTAM AB IGA - <1 (normal range <4)

GLIADIN IGG - 5 (normal range <20)

RETICULIN AB (IGA) SCREEN - negative

 

I have a couple of questions. First, from the limited material I've read, the Gliadin Ab IgA and GLIADIN IGG are no longer considered the best indicators and are being replaced more and more with Gliadin (Deamidated) tests. Is this true? Also, I haven't been able to find much of any info about the Reticulin AB (IGA) screen test. How good of an indicator is it? Also, it doesn't look like they tested my total IgA, which from what I've read would show if I'm IgA deficient or not.

 

I don't know if I have symptoms or not. I will occasionally (once a month or so) become very bloated, with pain if I press on my abdomen. I've tried bloat medicines (such as gas-x) which provide no relief. After a day or two, the bloat goes away on its own. Also, my bowel movements are not regular. Some days I will have very loose stools (sometimes with and sometimes without the urgency of diarrhea), and sometimes I will go several days without any bowel movement at all. Sometimes I will have very solid stool, but with a very sudden urge to go (I would compare it to the urgency of diarrhea, but with solid stool). I never thought much about all of this until the doc mentioned Celiacs.

 

I also have still had fatigue and brain fog (which I initially assumed were related to my thyroid) even though I'm on thyroid meds and my TSH is normal.

 

Basically, my major question is, should I be satisfied with the blood tests above and a negative Celiac diagnosis, or should I press for additional tests? I'm so confused by everything I've read online and want to be able to properly advocate for myself, but I just don't understand most of it.

 

Thanks for any insight you can provide!

Are you still eating gluten? If you went gluten-free before the test it could be false negative.

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Are you still eating gluten? If you went gluten-free before the test it could be false negative.

 

I am still eating gluten, although I wouldn't say that my diet in general is high in gluten, as I try to eat mostly "whole" foods such as fruits, veggies, and unprocessed meat. My preferred "starch" side dishes are rice and quinoa. I love bread and pasta, but only eat those a few times a week. I try to stay away from processed foods, so I doubt I'm getting much gluten from additives.

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Gliadin Ab IgA - 6 (normal range <20)

TISSUE TRANSGLUTAM AB IGA - <1 (normal range <4)

GLIADIN IGG - 5 (normal range <20)

RETICULIN AB (IGA) SCREEN - negative

 

I have a couple of questions. First, from the limited material I've read, the Gliadin Ab IgA and GLIADIN IGG are no longer considered the best indicators and are being replaced more and more with Gliadin (Deamidated) tests. Is this true? Also, I haven't been able to find much of any info about the Reticulin AB (IGA) screen test. How good of an indicator is it? Also, it doesn't look like they tested my total IgA, which from what I've read would show if I'm IgA deficient or not.

 

....Basically, my major question is, should I be satisfied with the blood tests above and a negative Celiac diagnosis, or should I press for additional tests? I'm so confused by everything I've read online and want to be able to properly advocate for myself, but I just don't understand most of it.

 

Thanks for any insight you can provide!

Welcome to the board.  :)

 

You are right that the AGA tests (anti-gliadin antibodies) are not the best tests and are being phased out. DGP is a MUCH better test. The reticulin test is pretty old too. Very few labs use that anymore. I'm not that sure about it's reliability. On page 11-13 of this report, the various current blood tests for celiac disease are discussed. http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf  The only up to date test you had was the tTG IgA, and it only has a sensitivity of 75-95% meaning that it misses up to 25% of celiac cases. 

 

I agree that you should get your total IgA tested. Approximately 5% of celiacs are deficient in this... which is why they check it. 

 

With your symptoms and Hashimoto's (around 6% of Hashi's patients have celiac disease compared with less than 1% of the regular population), I think celiac disease could be involved, although it could be Non-Celiac Gluten Intolerance/Sensitivity (NCGI) as well. Unfortunately, with NCGI there are no blood tests; diagnosis is through a positive reaction to the gluten-free diet for a few months. Once you have exhausted your testing options, NCGI and the gluten-free diet would be something I would consider.

 

Are you sure your thyroid is adequately managed? I have been gluten-free for a year and I still have some thyroid symptoms like brain fog even though my thyroid labs were declared "normal" by my doctor. I am disregarding my doctor's statement that I am normal and pursuing a TSH closer to a 1, and a Free T4 and Free T3 in the 50-75% range of my lab's reference range. I have switched to desicated thyroid and am starting to feel some energy. :)

 

Good luck. I hope you find your answers.  Keep asking questions, there are a lot of knowledgable people around here.  :)

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here's a pubmed abstract relating to this, but I don't have the full text

 

http://www.ncbi.nlm.nih.gov/pubmed/23365209

 

http://www.celiac.com/articles/23250/1/Antireticulin-Antibodies-Obsolete-as-Test-for-Celiac-Disease/Page1.html

 

any chance you can get the DGP igg/iga combo tested?

 

 

 The reticulin test is pretty old too. Very few labs use that anymore. I'm not that sure about it's reliability.

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I emailed the doc to ask about the DGP igg/iga and total iga tests. I'm waiting to hear back and will post again when I hear from them.

As for my thyroid, my most recent TSH was 1.3. I've noticed great improvement in many other thyroid related symptoms (hair loss, dry skin, brittle nails, menstrual issues) since getting it down to that level. I'm slated for a TSH/Free t4/Free t3 test next month, so I'll be interested to see what that shows.

Thanks for all of the input. If anyone else has anything to add, I'd be happy to hear it!

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excellent!  i'm hopeful they'll say absolutely  :)

 

I emailed the doc to ask about the DGP igg/iga and total iga tests. I'm waiting to hear back and will post again when I hear from them.
 

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So, the doctor's office called me back on Friday to answer my questions. Regarding the Total Serum IgA, the nurse said the doctor never orders that test, because it's too specialized and only GIs should order it.

 

Regarding the AGA IgA/IgG vs the DGP IgA/IgG, she said they don't know anything about how sensitive the AGA tests are vs the DGP tests and that they would have to call the lab and ask them. Based on what the lab says, the doc will decide if she will order the DGP tests (but she will not order the Total Serum IgA).

 

I also asked what could be causing the B12 deficiency if it's not celiac (we know I'm eating enough of it and we've ruled out pernicious anemia). The nurse's response was "some people are just b12 deficient." That doesn't make sense to me. If I'm eating enough of it, and my levels are low, there must be a reason my body isn't absorbing it.

 

They haven't checked any of my other nutrient levels, such as iron, vitamin D, etc. I pointed that out to nurse and she said she would ask the doc about it.

 

So, I'm once again waiting for them to call me. In the mean time, I've started to keep a journal of what I eat and how I feel. I had some pretty bad GI issues over the weekend and spent most of yesterday laying on the couch not really feeling like doing anything. I don't know if this is all in my head, like confirmation bias - someone said the word "celiac" and now I'm viewing every little thing through that lense. Or if I really have been missing/writing off symptoms for a while and now I'm just more aware.

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here's a good Pub Med Abstract regarding AGA (they list it as antibodies against native gliadin) vs DGP:

http://www.ncbi.nlm.nih.gov/pubmed/20171961

 

that's frustrating that they won't test your total igA  <_< why don't doctors know if they use ttg iga they have to measure the total iga to make sure it's valid...argh

 

any chance that you take any type of PPI or acid suppressing drug?  they can lower B12.  however if you're getting enough of it, and you're still deficient in it, that indicates malabsorption.  the answer "some people are just B12 deficient," is a cop out IMO

 

the journal is a great idea  :)

 

keep us updated!

 

So, the doctor's office called me back on Friday to answer my questions. Regarding the Total Serum IgA, the nurse said the doctor never orders that test, because it's too specialized and only GIs should order it.

 

Regarding the AGA IgA/IgG vs the DGP IgA/IgG, she said they don't know anything about how sensitive the AGA tests are vs the DGP tests and that they would have to call the lab and ask them. Based on what the lab says, the doc will decide if she will order the DGP tests (but she will not order the Total Serum IgA).

 

I also asked what could be causing the B12 deficiency if it's not celiac (we know I'm eating enough of it and we've ruled out pernicious anemia). The nurse's response was "some people are just b12 deficient." That doesn't make sense to me. If I'm eating enough of it, and my levels are low, there must be a reason my body isn't absorbing it.

 

They haven't checked any of my other nutrient levels, such as iron, vitamin D, etc. I pointed that out to nurse and she said she would ask the doc about it.

 

So, I'm once again waiting for them to call me. In the mean time, I've started to keep a journal of what I eat and how I feel. I had some pretty bad GI issues over the weekend and spent most of yesterday laying on the couch not really feeling like doing anything. I don't know if this is all in my head, like confirmation bias - someone said the word "celiac" and now I'm viewing every little thing through that lense. Or if I really have been missing/writing off symptoms for a while and now I'm just more aware.

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I don't get the "it is to specialized" line, on the total IgA testing.  Makes.no.sense.   at.all.

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I don't get the "it is to specialized" line, on the total IgA testing. Makes.no.sense. at.all.

Agreed. There is no logic to that. Ttg IgA and aga IgA tests aren't specialized, but total IgA is? That's a BS line if I've ever heard one. Just how is one supposed to get referred to a GI if they have negative IgA results because they're IgA deficient but no one knows it?

I'd push for the total IgA test.

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I'm back! Finally heard back from the doctor's office today and I am infinitely frustrated. The nurse said she talked to the lab and they said that the panel that was done (TTG IgA, AGA IgA & IgG, and RETICULIN IgA) is entirely sufficient for diagnosing celiac, and that therefore the doctor will not order any additional tests (such as DGP IgA & IgG and total IgA).

 

Apparently the lab did suggest that they test me for food allergies (including wheat), but the doc doesn't want to do that either. The nurse asked if I'd had any changes in my bowel movements, and I said it's hard to say, because they've never been regular - sometimes I won't have one for days on end, and then other times I'll have D for several days in a row - she said "well, if it's always been like that, then there's no change." I can't help but think, though, that it shouldn't have "always been like that" in the first place - that's like saying the brakes on my car have never worked, so I'm not going to fix them now.

 

I asked again about the b12 deficiency and the nurse said to keep getting the monthly shots and have my levels tested again in 10 weeks. She then said that the doc did want me to get an EMG / nerve conduction test (because one of the b12 symptoms I'm having is peripheral neuropathy). I just had one in March (and it was normal)! I told the nurse that and all she could say was "oh, the doctor must not have seen that." That makes me wonder if she's even looking at my chart at all - it was just a few months ago, it's not like it would be buried somewhere from years ago!

 

any chance that you take any type of PPI or acid suppressing drug?  they can lower B12.  however if you're getting enough of it, and you're still deficient in it, that indicates malabsorption.  the answer "some people are just B12 deficient," is a cop out IMO

 

I am not taking any type of PPI or acid suppressing drug, so that can't be causing the b12 deficiency. Does anyone here with b12 deficiency have any advice? Would a gastro doc be able to help diagnose what's causing that? I'm thinking maybe I could kill two birds with one stone by seeing one - find out what's causing the b12 deficiency and get a better idea of whether or not celiac or NCGS is involved.

 

As I mentioned before, I started keeping a food/symptom journal last week. I also started to eat gluten more consistently - as I was not necessarily eating it every day. I don't know if it's just because I've been paying closer attention, but I feel like I have been more bloated, gassy, and had more urgent bowel movements in the past week and half that I've been eating gluten every day. It's not always consistent, though. Sometimes an hour or two will go by before I have symptoms, sometimes it won't be until the next morning, and sometimes it's right away. I had pasta and garlic bread for dinner one night last week and felt ok that evening and then the next morning I looked like I was 4 months pregnant. Then on Saturday morning I ate a bagel and immediately had D and felt sick to my stomach for most of the rest of the day. Is this inconsistency common with celiac or NCGS?

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Hmm, because the doctor did not order the "too specialized" total serum IgA, the AGA IgA, tTG IgA, and reticulin IgA could be invalid if you are IgA deficient; it's unlikely that you are one of the 1/20 celiacs who is deficient but it is possible. The AGA IgG has a really weak sensitivity of 17-100%, that means the test misses up to 83% of celiacs it tests for... not so good. The AGA test is not often used anymore (but you know that) and the reticulin test was used 20 years ago.... how old is your doctor??  LOL :blink:  That test is rarely rarely used anymore because superior tests have been introduced.

 

Could you go to another doctor or get into a gastro in a timely manner?  If not, you could try ordering a home Biocard test which tests for IgA and tTG IgA (in high levels). At least with the Biocard test you would know if your other IgA based tests are accurate.

 

I don't have a B12 deficiency but I know that the methylcobalamin sublingual B12 is better absorbed that a regular b vitamin that is digested in your small intestine.  Who knows, maybe the fact that I have good levels of B12 is because of that vitamin.

 

And yes, inconsistent BM's are common in both celiac disease and NCGS.

 

Geez, how frustrating for you... don't pull out all your hair yet.  ;)

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There are online labs where you can order complete celiac blood panels...and anything else you want. I'm in the US...don't know where you're at.

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Thanks for the input, everyone!

 

Could you go to another doctor or get into a gastro in a timely manner?  If not, you could try ordering a home Biocard test which tests for IgA and tTG IgA (in high levels). At least with the Biocard test you would know if your other IgA based tests are accurate.

 

I called this morning and scheduled an appointment with a gastro on July 29th - the earliest they could get me in. The practice was recommended to me by a friend who has celiac, so I'm hopeful that they will know what they're doing.

 

There are online labs where you can order complete celiac blood panels...and anything else you want. I'm in the US...don't know where you're at.

 

Thanks for the tip! I'm in the US, too, so I will definitely check that out. It might given me some extra info to share with the doc - and save time of him having to order it.

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    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
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    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023