Any More Blood Tests That Could Be Done?

[Kat L]

Below are the blood tests my primary care doctor ran for celiac, and the results. She also ran a number of vitamin levels as well. I know there's the HLA-DQ typing, but other than that are there any other blood tests for celiac that I should ask her about? Or is this pretty much it? I have a hard time translating between the various abbreviations/shorthands for the tests I've seen mentionedon the forum... Thanks for any help you can provide!

Component Your Value Standard Range Units

TTG Ab, IgA 1.3 <7.0 U/mL

Negative <7.0

Equivocal 7.0-10.0

Positive >10.0

Gliadin DGP Ab IgA 2.5 <7.0 U/mL

Negative <7.0

Equivocal 7.0-10.0

Positive >10.0

IgA 367 87 - 474 mg/dL

[GottaSki]

There are the same tests as you had, but IgG based rather than IgA.

What symptoms led you to Celiac testing?

Where any of your nutrients low?

Is this your primary or gastro ordering these tests?

Sorry for so many questions - just want to suggest the next best steps and its difficult without more info.

Edited: just re-read your post and saw it was primary - perhaps ask to be referred to GI?

[Kat L]

Lisa -

I've had a number of generalized symptoms for years (fatigue, joint pain, muscle pain, tingling/numbness in my arms and legs, gas, frequent urination, heartburn, brain fog, heat/cold intolerance, nausea, trouble sleeping, overweight and don't lose weight on a strict 1200-1400 calorie diet...sound familiar?). I've gone to the doc a few times and have had SO many tests done - lupus, polycystic ovary disease, diabetes, thyroid disease, parathyroid disease, rheumatoid arthritis, etc. etc. with everything coming back negative. The only thing that ever came back as a problem was last December, I was vitamin D deficient. I took supplements and got my vit D back up, and feel a good bit better, than I did last December, but certainly don't feel like I should for being only 30 y/o.

I'd come across celiac symptom lists before, and even though they fit pretty well I was definitely in denial. That is, until I had a bit of a gluten vacation. I was traveling and most of the meals I had were gluten free, or just had bread as an after-thought, so I half-purposefully/half-by-chance avoided gluten for a little over a week. Then...I went to Italy. My gastro-symptoms came back with a vengeance. I'd get these crazy muscle/nerve pains about an hour after I'd eat, which would gradually go away over the course of 4-5 hours. This kind hyper-sensitivity lasted for about 2.4 weeks until I got back to my normal malaise.

One other piece of info is that my mother died of stomach cancer when she was 45. It's possible that she had untreated celiac, but I was too young to notice any other symptoms she may have had.

I saw my primary after I'd been back on gluten for about 2 weeks. (My gluten-vacay had only been about 1 week, and I certainly was not strict about it). My primary agreed that it sure sounded like gluten sensitivity and ordered the celiac panel I listed above. After the negative results, she still thinks it's gluten-sensitivity and referred me to a gastro. The vitamins all came out within the normal range, though B12 was on the lower end of normal and I've always been on the lower end for iron. That was over a month ago, and I've been eating gluten the whole time, working through a bit of a bucket-list of my favorite gluteny foods.

I saw a gastro for the first time yesterday and when I asked her about additional blood tests she said that other than the HLA tests, those were all of the tests she knew about. She said we could do endoscopy, although she very much wants that to be my decision and was not pushy either way. I get the feeling that if I were to identify additional blood tests she wouldn't have a problem ordering them, as she said I could do the HLA typing if I wanted to. I didn't really want to do the endoscopy at first, but I am leaning the other way after she mentioned that given how young my mom was when she had stomach cancer that I should be doing some stomach cancer screening (be it endoscopy or the barium x-ray) every couple of years.

So, that's my story. At this point I'm pabout 98% convinced that I have a gluten-sensitivity, whether it's celiac or not. I will go gluten free as soon as I'm satisifited that I've done all the testing I should. (I am a scientist, so I like data...more data, is always better). I'll give gluten-free a chance for a few months in my normal setting (not traveling), and assuming I see the same changes, that'll be that. I just really want to the tests done, so I can start. Well, that is after I finish my bucket-list (still need a chocolate croissant and truffled mac and cheese).

[cassP]

the Endomysial antibodies were not tested on you. it's 100% specific to Celiac.

im also curious which vitamin levels were tested on you and what was low! there are certain ones and more that are so common in those with Celiac, Gluten intolerance, Thyroid Disease, or anyone with digestive issues and some autoimmune disease. ie: D3, iron & ferritin, B12, etc, etc,... Folate, Magnesium..

[GottaSki]

Thanks Kat and sorry you've had such a rough road to diagnosis - your story has some similarity to mine. One positive is your vacation from gluten certainly may be the most important indicator.

I do suggest you request the additional:

tTG IgG

DGP IgG

AGA both IgA & IgG

EMA IgA - my lab doesn't run it unless the tTG IgA is positive - but other labs may so do ask for it.

I'd also HIGHLY recommend you go forward with the endo. My antibodies were very weakly positive with total villous atrophy and others on this board have had severe intestinal damage with negative blood work. Given your symptoms and the stomach cancer of your Mom (very sorry for this loss - hugs) I'd say it very important to take a look at your digestive tract - as well as 6-8 samples of the small intestine for celiac biopsy.

Let us know if you have any more questions.

I hope you find clear answers very soon!

Edited to add: I'm firmly in the more data the better camp - to that end HLA DQ1, 2, 3 & 8 testing gives the most complete picture of a genetic link to gluten sensitivity - the last time I checked - you might want to check that this is accurate - many US docs still consider DQ2 & DQ8 to be the only genes of concern.

[Kat L]

CassP and Lisa, Thank you for the advice! I'll email my doc and ask about the additional tests and how many biopsies she'd do. I'll either be scheduling the endoscopy or finding another doc for a 2nd opinion.

Here are my recent vitamin results. After I get the low vit D result, I saw an endocrinologist who ruled out parathyroid disease.

Component Your Value Standard Range Units Date

Vitamin B12 297 211 - 911 pg/mL October 2012

Folate 13.7 >5.4 ng/mL October 2012

VitD,25-Hydroxy Tot 71 30 - 100 ng/mL May 2012, after supplements

VitD,25-Hydroxy Tot 12 30 - 100 ng/mL December 2011

Magnesium 2.0 1.8 - 2.4 mg/dL January 2012

I also have annual blood tests for work. I don't have those results handy, but I'm always on the low side for iron. I forget what if any of the other minerals skew low.

[Kat L]

I asked my doctor about the additional tests, and her response is basically that the tests I've already had have the highest specificity for celiac and therefore provide as much information as we're going to get. Her full response is below:

All these tests exist and could be run, but I am not sure they would add much to where we already are in your diagnostic work up.

You have had our standard celiac panel which includes the tissue transglutaminase iga and deaminated gliadin peptide antibody iga. In general, the iga is better than the igg. The igg tests are primarily used when an individual has low iga; low iga is a common variant in the population. Your total iga was already normal on the celiac panel so your iga tests are valid. In general, the deaminated gliadin peptide antibody is similar but better than the older aga.

Here are some numbers about how good the tests are. You are going to want the most sensitive test (this is the one most likely to be positive when disease is present):

IgA endomysial antibodies – sensitivity 85 to 98 percent; specificity 97 to 100 percent

IgA tissue transglutaminase antibodies – sensitivity 90 to 98 percent; specificity 95 to 97 percent

IgA antigliadin antibodies – sensitivity 80 to 90 percent; specificity 85 to 95 percent

IgG antigliadin antibodies – sensitivity 75 to 85 percent; specificity 75 to 90 percent

You can see the tissue transglutaminase is the most sensitive and you have had this one. You have also had the deaminated gliadin peptide antibody (better than the aga).

I would like to send you a standard diagnostic algorithm and potentially even the whole article from a trusted medical source - I use UpToDate, for instance, it is like a textbook that is updated every few months. The article is by a leader in the celiac field and was updated in October. Shall I mail this to you or do you have a fax you prefer?

Have other people experienced results where these less sensitive, less specific tests are positive but the three initial tests are negative?

Also, when I asked her how many biopsies she typically does to screen for celiac, she said from 2 to 12 depending on the visual condition of the intestine. If I ask her to take at least 6, regardless of the visual, I doubt she'd have any problem with that. So, I think I'll schedule the endoscopy with her soon.

[GottaSki]

Hi Kat-

What your doctor is saying is accurate. Given your strong normal Total IgA the IgA results should be reliable. Have others had positive IgG results while being IgA negative - yes. We are all different.

I do agree an endoscopy may provide far more important data for you.

It's up to you if you'd like to push this doctor for more blood tests. I can't recall if you mentioned whether she opposed to genetic testing or simply more antibody testing? I remain a proponent of obtaining all possible data, but your doctor does sound like she is up to date with regard to Celiac Disease - this is not true of all doctors.

[guest134]

the Endomysial antibodies were not tested on you. it's 100% specific to Celiac.

In certain screening populations it can reach a very high specificity to celiacs however it is never 100 percent as other more rare causes (that make up 2-4 percent of EMA positivity) such as intestinal lymphoma would need to be ruled out while celiac is confirmed through a biopsy. However in her specific case if it came up positive it would very well be close to 100 percent specific as the other causes are unlikely to lurk for years.

[cassP]

In certain screening populations it can reach a very high specificity to celiacs however it is never 100 percent as other more rare causes (that make up 2-4 percent of EMA positivity) such as intestinal lymphoma would need to be ruled out while celiac is confirmed through a biopsy. However in her specific case if it came up positive it would very well be close to 100 percent specific as the other causes are unlikely to lurk for years.

sorry, i hate to give bad info... it was only what i had read before while researching :/

but in original posters post of what doc wrote- the EMA DOES reach up to 100%, more than the others if im not mistaken

[cassP]

CassP and Lisa, Thank you for the advice! I'll email my doc and ask about the additional tests and how many biopsies she'd do. I'll either be scheduling the endoscopy or finding another doc for a 2nd opinion.

Here are my recent vitamin results. After I get the low vit D result, I saw an endocrinologist who ruled out parathyroid disease.

Component Your Value Standard Range Units Date

Vitamin B12 297 211 - 911 pg/mL October 2012

Folate 13.7 >5.4 ng/mL October 2012

VitD,25-Hydroxy Tot 71 30 - 100 ng/mL May 2012, after supplements

VitD,25-Hydroxy Tot 12 30 - 100 ng/mL December 2011

Magnesium 2.0 1.8 - 2.4 mg/dL January 2012

I also have annual blood tests for work. I don't have those results handy, but I'm always on the low side for iron. I forget what if any of the other minerals skew low.

hey that's so interesting that your doc was concerned about Parathyroid with low D, ihad never heard of that before.

what about a full thyroid check up? have u had that??? so many of us have both Celiac & thyroid disease, and many that are Gluten intolerant or gluten sensitive also have thyroid disease.

Thyroid disease ALSO screws up your digestion- cause you make less of everything-> including stomach acid, pancreatic enzymes, motility , etc

my opinion is that a Vitamin D deficiency often points to Autoimmune Activity... your immune system needs D3 to work properly-> and when you're autoimmune you use it all up.

also- your B12 is TOO LOW.. you should strive to get it above 500 or 600... alot of our "ranges" in the U.S. are way too big and are more interested in Disease Management instead of Healthcare

[Kat L]

hey that's so interesting that your doc was concerned about Parathyroid with low D, ihad never heard of that before.

what about a full thyroid check up? have u had that??? so many of us have both Celiac & thyroid disease, and many that are Gluten intolerant or gluten sensitive also have thyroid disease.

Thyroid disease ALSO screws up your digestion- cause you make less of everything-> including stomach acid, pancreatic enzymes, motility , etc

my opinion is that a Vitamin D deficiency often points to Autoimmune Activity... your immune system needs D3 to work properly-> and when you're autoimmune you use it all up.

also- your B12 is TOO LOW.. you should strive to get it above 500 or 600... alot of our "ranges" in the U.S. are way too big and are more interested in Disease Management instead of Healthcare

I hadn't realized that the B12 range was so much broader than it should be. I figured that it was likely, and really most vitamin results near the bottom of the "normal" ranges are generally suspect.

Re: thyroid disease, I've actually had my thyroid levels checked every year for the past 6 years (at my annual gyno exam and every time a doc tries to figure out what's wrong with me). This is because, as the story goes, my mom had a lump on her thyroid removed when she was in her 20s. According to my dad it was just a lump, found not to be malignant, and they didn't know what it was but they took it out along with half of her thyroid and then she took syn-thyroid for the rest of her life. So, with that in mind, my thyroid hormones are always and thus far have always been normal. My last TSH result from a little over a month ago was 2.50 uIU/mL.

Re: parathyroid, the parathyroid regulates calcium levels in the blood, and vit D aids in absorption of calcium by the intestines. So, if one's parathyroid is overactive (usually as a result of a tumor) then blood calcium levels in the blood are too high, being leached from the bones, and the body suppresses vitamin D production. So, after I had the vitamin D-deficient result, I went to an endocrinologist. Apparently, the parathyroid glands are still a bit of a mystery to many doctors (much like celiac) and in the early 1970s I'm sure doctors were even less knowledgeable. And like celiac, hyper-parathyroidism is also still an underdiagnosed disease. So, my working theory at the time was that perhaps the mystery lump on my mom's thyroid was actually a parathyroid tumor. (People typically have 4 glands, sometimes more, and their locations can vary quite a bit, including being inside the thyroid entirely). This was particularly concerning as thyroid tumors, which cause hyperactive thyroid but are not cancerous can be a result of multiple endocrine neoplasia, a disorder that also can cause stomach cancer. And...my mother died of stomach cancer when she was 45. So, I asked the endocrinologist to check my parathyroid hormone levels and she also did an ultrasound of my thyroid/parathyroid. All was normal.

I've had broad autoimmune-like symptoms for many years and at several times, doctors have strongly suspected that I had an autoimmune disease but were never able to diagnose it. None of them had ever suggested celiac to me. The first time I went through this I was in college. Repeated blood tests showed I had elevated sedimentation rates, despite being otherwise, outwardly not sick. After months of repeated elevated sed rates and no positive results for the standard autoimmune diseases, I gave up and stopped going back to the doctor. At that time, I actually had had a surgical steel screw in my foot, and since shortly after I had it put in I became allergic to all of my earings, I figured that I had developed a metal allergy of some sort. This is pretty consistent with the latex allergy I have, which is not an actual latex allergy but rather a sensitivity to the hardeners in latex products - common in people who have had surgery as a baby. I figure I'm just predisposed to developing sensitivities to foreign objects/chemicals in my body.

A few years ago, I had an orbital myositis in my right eye. Basically, one of the muscles that moves the eye swelled to 3-4 times the size it normally was and was INCREDIBLY painful. It took a few weeks to diagnose properly, but fortunately I was able to see a neuro-ophthalmologist, after having a complete meltdown on the phone with a nurse who squeezed me in right away instead of making me wait a month. According to the neuro-ophthamologist, orbital myositis can either be an autoimmune symptom or can be caused by a virus completely randomly setting up shop in a muscle. After 9 vials of blood being from my hand that day, because the lab couldn’t succeed in finding a vein in my harm….all those tests came back negative. About a month before the eye problem, I had a campylobacter infection (intestinal infection not dissimilar from salmonella – more common in Europe than the U.S. –WOO that was a fun vacation!). Wanting to make it back to the states by Christmas, I flew back home despite still having crippling intestinal umm…issues. Not exactly the smartest thing I’ve ever done, considering by the time I made it home I was so dehydrated I had chest pains. Also, in addition to the food poisoning, I picked up a nice plane-virus. When the autoimmune results came back negative, it was reasoned that the cold virus took up shop in my eyes, since I was probably pretty immune-compromised at the time.

MSG – 12 years? Do you know what the relationship between gluten and MSG-sensitivity is? Beginning about 12 years ago, I started developing weeping rashes on my face and forearms from MSG.

Sorry for rambling on about my various medical mysteries, but it's nice to type it all up in one place. Or - most if it in one place. I also have some physical birth defects that have their own set of doctor stories. One thing is for sure, I’ve seen A LOT of doctors over the years. Some of them very good and some of them quite terrible.