Help W/blood Test Results

[lyzard77]

Hello! I am a 34-year old, female. I was recently tested for Celiac in addition to several other autoimmune diseases due to some problems I've been having. I was hoping you could help me interpret my "Celiac" results because I am not confident the doctor was correct in labeling me as only "possibly gluten sensitive." 

 

Gliadin Iga: H29 (abnormal)

Gliadin IgG: 2 (normal)

Transglutaminase Iga: <1 (normal)

Transglutaminase IgG: <1 (normal)

 

She stated that if the Transglutaminase vales were abnormal, she would probably label me as Celiac since the Gliadin Iga is also borderline abnormal. She said that I might be gluten sensitive and to try a gluten-free diet for about 3 weeks to see how I feel. I started this a couple days ago.

 

Symptoms: 

-  Intermittent stomach issues (sometimes diarrhea, sometimes constipation, oftentimes normal). This has been going on since probably my mid-twenties, but from my late teens to mid-twenties, I had more severe stomach issues (more frequent diarrhea). 

-  Memory issues. I feel like I can't remember what I was doing from one second to another. This is actually one of the items I have been the most concerned about (and why I was seeking testing). I used to have such a great memory.

- Attention/focus issues? - Sometimes I feel like my brain is spinning from so many different thoughts that I can't focus. Maybe I'm just addicted to the internet and Pinterest  

- Fatigue. This and many of my other symptoms might be related to other autoimmune disorders that I will give a little more detail on later.

- Somewhat low B12 (358, if that means anything to you)

- Slightly low WBC count (L3.77). This was also slightly low about 3 years ago, but they didn't think anything of it at the time. 

 

My iron levels are fine, as are my thyroid, potassium, and calcium. The doctor is going to check my folate, Vitamin D, and MMA.

 

Other Autoimmune issues: 

At the same time they ran my celiac blood test, they also did lots of other bloodwork on other autoimmune diseases. They found that I likely have Scleroderma. I am making an appt with a Rheumatologist to get a confirmed diagnosis. They suspect this because my ANA Titer came back Positive (1:160) with a Centromere pattern. My SSA AB also came back positive with H 8.0. I am also planning to ask the Rheumatologist about Sjogren's since I have had about 3 salivary gland stones per year for about 5 years now. Other than Raynaud's disease, fatigue, salivary gland stones, chapped lips, and heartburn, I luckily don't have any other symptoms of Scleroderma or Sjogren's. 

 

Anyway, the "other autoimmune" paragraph is really beside the point. I don't really expect anyone to try to interpret those numbers with the exception that I know that there is some preliminary research regarding undiagnosed Celiac and possibly even non-celiac gluten sensitivity being the culprit or environmental insult to cause other autoimmune disorders. 

Also mostly beside the point... but my 4-year old son has Autism. I have seen some recent research suggesting that any inflammation in the body during pregnancy (caused by any autoimmune disorder, including scleroderma and uncontrolled celiac) may cause Autism. Luckily, my 2-year old daughter hasn't been affected. My son has been gluten and dairy-free since January. On occasion he has had gluten accidentally and the only thing I have noticed is that he wakes in the middle of the night more often after consuming gluten. He is possibly more hyper too, but he is so up and down anyway that it's very difficult to interpret the behavior. 

 

Any thoughts on my Celiac panel numbers? She did not say anything about endoscopy nor did she refer me to anyone for the Gliadin IgA being "weak positive." She did refer me to someone for the other autoimmune issues. Do you know if the Rheumatologist would evaluate me further for celiac or is he going to concentrate on the Scleroderma only?

 

Thanks!

Elizabeth

[nvsmom]

Your doctor sounds really knowledgeable, a true keeper.    I agree with her (mostly). You positive test, the anti-gliadin antibodies immunoglobulin A (AGA IgA) does not test for villi damage like the other celiac tests do. It detects a sensitivity to gliadin (gluten) and current thinking has it that this test could be used for detecting bothe celiac disease and for non-celiac gluten intolerance (NCGI) but you have to make allowances for it's lack of reliability as it's sensitivity is not that high.

 

This report by the World Gastroenterology Organization discusses the tests form about pages 10-12: Open Original Shared Link

 

So, with a positive AGA IgA, it could be celiac disease or NCGI. Because you have other autoimmune diseases, I would tend to guess it is celiac disease. AI diseases tend to run in packs; I have three and many around here have two, three four of more, especially if their celiac disease was left untreated for a  long time.  Right now, I don't believe that NCGI is considered to be an autoimmune disease, but I wouldn't be surprised if it is found to be one in the the future. I am guessing it will be proven to be a catalyst for setting off other AI diseases because of all of the chronic inflammation it causes... but that is all just guessing on my part.

 

To find if it is celiac disease, you could request the deaminated gliadin peptide tests (DGP IgA and DGP IgG) which are newer and very reliable tests. There is also an EMA IgA test, but it is rarely positive if the tTG IgA was negative. You also might want to check  your total serum IgA levels because about 5% of celiacs are deficient in IgA and that will affect your celiac disease test results that use IgA based tests (possibly resulting in false negatives). The endoscopy is a great tool for diagnosing some people; you may as well look into it, and all your testing options, before going gluten-free.

 

I don't know you lab's normal reference ranges either, so I can't comment on how high your positive test is and how low the negatives are. Ranges can vary by a great deal between labs with the high end of the range being between 3 an 20 in most cases.

 

When your doctor checks your blood again, you might want to mention that the following are often low in celiacs: B12, B2, B6, D, A, iron, ferritin, magnesium, zinc, calcium, copper. Now a days, the doctors seem to just check B12, D and iron, but those others, while not low in all, can cause lots of problems. I don't know what MMA is...

 

Also, you may want to ensure your doctor checked your thyroid properly. Some just check TSH and if you are at all within range they declare you normal, but the problem with that is that almost half of all hypothyroid patients are IN the normal range. My doctor told me I was fine for well over a decade before I educated myself in that area and went after more tests and some meds. Anyways, TSH should usually be near a 1 for the patient to feel well, and the free T4 and free T3 should be in the 50-75% range of your labs normal reference range - those two are probably the most important tests. The TPO Ab can tell you if your thyroid is (likely to be) under and autoimmune attack.

 

As for gong gluten-free, 3 weeks is generally not a good length of time. While you MIGHT see some GI related improvements pretty early on, some people go through a gluten withdrawal and actually feel worse before they get better. Cognitive, neurological, and joint issues seem to be the slowest to improve - it can take months to years to see real improvement. A gluten-free trial or 3 months is a bare minimum in my eyes; 6 months is much better.  Keeping a symptom journal can help you keep track of how your health is changing too.

 

You might want to get your daughter tested for celiac disease as well as the disease has a genetic component (NCGI does too). The DGP tests are considered to be the best to use on children. You son has been gluten-free for so long, I doubt any tests would give an accurate result, and if he is gluten intolerant, having him consume gluten for two months in order to be tested would probably be a pretty miserable experience.

 

... And after all that, welcome to the board!  

[lyzard77]

Thank you so much for your valuable insight!

 

I was actually frustrated with my doctor for a few different reasons. First, she told me that she suspected I might be Non-celiac gluten sensitive because although the Gliadin IGA was 29 (high weak positive), the Transglutaminase Iga and Transglutaminase IgG were negative. I found this surprising since I have heard that oftentimes these values can be negative in celiacs, but she thought it wasn't celiac because of the other negative values. She also told me that she suspected my fatigue was not from the inflammation in my body or the autoimmune disorders, she thought I just wasn't sleeping well and should take a Melatonin. I understand that sometimes fatigue is caused by not sleeping well, but I sleep 8 hours at night usually without waking. Plus, one of the biggest symptoms of all autoimmune disorders is fatigue. I'm not sure why she wouldn't contribute the fatigue to any of my autoimmune issues. Also, as you mentioned, she suggested trying the diet for only 3 weeks, whereas my son's doctor suggested that you need at least 4-6 months to determine if it's helping. Moreover, she didn't suggest further testing for the Celiac. I guess I just should expect general practitioners to know a little bit about a lot of different things and look to the specialists for more detailed information on my specific issues.

 

Anyhoo, my TSH value was 1.14, which I guess it pretty good. I thought I had remembered seeing free T3 and T4 in my "lab order," but I didn't see them on the results printout they gave me. MMA is a different way of measuring B12. My understanding is that it is more sensitive than the standard B12 test. However, the MMA is sometimes overly sensitive and can sometimes show up even when there isn't a B12 deficiancy. 

 

Interestingly, I found an article last night stating that a low triglyceride level can sometimes be an early clue in celiac disease. Well, I remember about 6 years ago when I first started having ocular migraines, they tested triglycerides and were thrilled with how low they were. Argh. This was a different doctor, but as I look back I find more and more opportunities where doctors have missed the mark on this. As a side note, I was diagnosed with IBS in my early 20's and not once did they test for Celiac (I had never even heard of it back then).

 

Thanks again!

Elizabeth

[cyclinglady]

I had a weak positive on my blood test and seven weeks later, my biopsy showed a Stage IIIB (moderate to severe damage to my villi).  

 

My iron levels (e.g. saturation) were always good.  Only rarely, would they check my Ferritin levels and that's only when my hemoglobin dropped to a 7.  Did the iron tests check for Ferritin?  Low levels will cause fatigue.   Everyone also congratulated me on having extremely low cholesterol levels, too!  

 

Good luck!

[lyzard77]

I had a weak positive on my blood test and seven weeks later, my biopsy showed a Stage IIIB (moderate to severe damage to my villi).  

 

My iron levels (e.g. saturation) were always good.  Only rarely, would they check my Ferritin levels and that's only when my hemoglobin dropped to a 7.  Did the iron tests check for Ferritin?  Low levels will cause fatigue.   Everyone also congratulated me on having extremely low cholesterol levels, too!  

 

Good luck!

 

Thanks for the info on Ferritin! I don't think they checked the Ferritin; it's not on the sheet they gave me. I assume Hgb is Hemoglobin and that's 12.4.

[cyclinglady]

Your hemoglobin is good (not anemic).  It was my low ferritin levels (when they did measure it) and my Hashimoto's Thyroiditis (high antibodies) that caught my GI's eye when I went for a routine colonoscopy.   He recommended the celiac blood panel.  So, do a little research on ferritin levels especially if you're an athlete.  Low levels (even just within the "range") really impacted my performance.  As though you may not be an athlete, you are chasing two little ones!

 

As NVSMom said, you might consider a thyroid antibodies measurement to be proactive.  Years ago, mine were above way above normal but TSH etc. were perfectly in range.  I wasn't even displaying symptoms.  My doctor (he's retired  ) prescribed a tiny amount of thyroid replacement to slow down the damage to my thyroid.  Looking back, it was a great approach.  Too bad he didn't catch celiac disease though (he did test me for a wheat allergy and it was negative but he caught my other allergies which I still have to this day!)