Joint pain, abnormal routine blood tests, & celiac?

[Sekhmet]

Hi everyone,

I have been suffering from chronic pain in both of my elbows (progressively down my forearms into my hands) for over 8 years.  It began when my daughter was 10 months old; she was a very large baby, and therefore awkward to handle, and in the beginning I was diagnosed & treated unsuccessfully for tennis elbow.  The pain is relatively mild - it has never been debilitating - but it is chronic, and over the years I have been to countless doctors, an orthopedist, a physical therapist, and a chiropractor, and have had various diagnoses but am yet to have a solid one.  Various treatments have been tried.  Many years ago, a nerve conduction study was done that showed slowing through both elbows, indicating radial tunnel syndrome; however, I have at least as many, if not more, symptoms of compression of the ulnar nerve instead.  Nothing was done then, because there was nothing to do but surgery and my symptoms weren’t bad enough to make that worthwhile.  (Also... radial and/or ulnar nerve compression could be caused by inflammation in the surrounding tissues that is caused by something else entirely - again making surgery unattractive.) That is probably more than enough on that for the moment since this isn’t an elbow forum.   Long story short, I have had chronic, erratic, and mystifying elbow/arm/hand pain.

In the last 1-2 years, the pain in my hands, in particular, has worsened and I have developed knee and foot pain on both sides.  The soles of my feet ache for no apparent reason, whether I am walking, sitting, lying down, or driving.  I do not work on my feet, nor do I wear heels much (never any more, due to this pain).  (Note that I am relatively fit, not overweight, and have no other symptoms and no blood tests that would indicate diabetes.). I also have a lot of neck, shoulder, and back pain that I tend to blow off as work-related, as I work on a computer.  Yet, it doesn’t really seem to get better when I am off work.

I am 41 now, but this all started when I was 33.  Now that I’m in my 40s it’s easier to blow things off as age-related… but I am not sure I should be.

So that sums up most of my symptoms… essentially just mild but chronic joint & muscle pain, particularly in my elbows and now feet but also other locations.

Also worth mentioning, last year I was found to have a Vit D deficiency (19 ng/mL) - I do realize this is very common.  Later in the year I did one of those mail-in blood tests to check my B12 and that was also “borderline low” at 298 pg/nL, which is not so common.

I had a routine physical last week, and my doctor ordered all of the usual blood tests I’ve had on past physicals.  Many of these are ordered just because my health insurance company puts money in my HSA as a reward for doing so.  However, I’m seeing a new doctor and have lately been motivated again to try to figure out what is going on with my joints, so after we discussed it she also ordered an ANA test as well as a Rheumatoid Factor test (the latter I had years ago & it was negative; it was negative this time, too).

For the first time on a physical, I had numerous abnormal blood test results… 

1. WBC (white blood cell) count: LOW (3.5 K/cumm).  Normal: 3.8 - 9.9 K/cumm.
2. MCHC (mean corpuscular hemoglobin concentration): LOW (32.0 g/dL). Normal: 32.3 - 35.7 g/dL
3. Alk Phos (alkaline phosphatase): LOW (34 Units/L).  Normal: 40 - 130 Units/L.
4. ALT (alanine aminotransferase): HIGH (54 Units/L). Normal: 7 - 45 Units/L
5. AST (aspartate aminotransferase): HIGH (100 Units/L). Normal: 10 - 45 Units/L.

In addition,

ANA (anti-nuclear antibodies): POSITIVE.  (1:40 dilution)

The combination of all of the results, and my obsessive googling while waiting to hear from my doctor (these were available to me online in my doctor’s web portal) are what led me to wonder about celiac disease.  For every one of these results, celiac comes up as a potential cause (whether direct or indirect - for example, by causing an iron deficiency which then causes low MCHC).

I realize that a positive ANA at that low level is not uncommon and could be nothing (and that positive ANA doesn’t indicate celiac); yet, I read that a false-positive ANA is sometimes seen in celiac patients.

TL;DR:  Have any of you arrived at a celiac diagnosis when your primary/only symptoms were chronic joint/muscle pain?  And, have others started out with a slew of weird routine blood test results, that led eventually to a celiac diagnosis?  I know some of these are only slightly out of range and might just be due to my body fighting off a virus or the like.

Edited February 20, 2019 by Sekhmet

[tessa25]

It can't hurt to do the full celiac blood test.

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You have to be eating gluten daily for 12 weeks before the blood test. A positive on any one blood test should lead to a gastroenterologist doing an endoscopy /biopsies to confirm a celiac diagnosis.

 

 

 

[GFinDC]

Hi,

I had joint paint but it didn't lead to celiac disease directly.  My joint pain was originally caused by nightshades and vitamin D deficiency.  Since i stopped eating nightshades years ago much of my joint pain went away.  However I still get it sometimes and it is probably related to D deficiency.  I've been low D for many years.  I do have a RX for Vitamin D now though and it is helping.  If you are low vitamin D it is supposed to be more effective to take a smaller dose daily than to take a large dose infrequently.  So 1000 IU daily is better than 50K IU weekly.  In theory.

The usual celiac testing process is to get a blood draw for antibody tests first, and then an endoscopy later to check for intestinal damage.

[Sekhmet]

Thank you, both!

GFinDC, that's helpful to know about Vit D.  At my previous physical (Jan 2018) was when I was found to have a D deficiency at 19 ng/ML, and my doctor prescribed a supplement. After some back & forth (she first prescribed D2, took some work to get her to instead prescribe D3), I ended up on a 50,000/week dose.  In August 2018 I did that mail-in test I mentioned to check my B12, and that test happened to also include D; at that time, my D was too high, at 83 ng/mL, so I messaged my doctor who instructed me to stop taking it. Now, since August, I'm all the way back down to 36. The nurse who discussed my test results with me this week said I should take 800 iu/day.  I have like 3 unused cartons of those Viactiv D+calcium chews so I plan to just use those for now (although I'm not a fan of the sugar/other crap in them).  

Long story short... I appreciate the tip about taking it daily versus weekly.  In what way is it "better" - just in terms of elevating your D level?  Or does it result in a more consistent level that's healthier for you?

Re: celiac testing, I posted separately about the test my doctor ordered when I requested to be tested for celiac (just humoring me??), here... 

 

 

Edited February 21, 2019 by Sekhmet

[GFinDC]

Hi Sekhmet,

Yes, taking the D daily is supposed to more effective for raising the vitamin D level.  I have RX for 50K IU of D also.  But am now taking 1000 IU daily as well.  I guess the 50K IU is not always fully absorbed.

[Posterboy]

GFinDC,

I don't think a 1000 IU a day is enough to get you in trouble....I have done the same thing.

My specialist is now retesting my Vitamin D  levels to see if it is back at normal levels. ...I am curious to see if it has done the trick.

But in higher IU amounts Vitamin D should be taken with either beta-carotene (which can help Iron absorption too) and/or Vitamin K to help avoid overdosing (though rare it is possible).

See this research article about it entitled "Vitamin D toxicity redefined: vitamin K and the molecular mechanism."

https://www.ncbi.nlm.nih.gov/pubmed/17145139

I came across doing some research on my own . .. and I don't think most people taking Vitamin D without Vitamin K to keep it in the right ratio is aware of it. 

I also found taking Vitamin K ... I think the K2 form is the one most often recommended... help me control my blood sugar better too!

There are actually some D2/K2 sublingual melts you can get to put under your tongue. . .but I don't remember the name brand right off. ..the tip of my tongue but you can gooogle for them.

I hope this is helpful but it is not medical advice.

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,