Should I Have More Tests?

[Merdie15]

I was diagnosed with a Vitamin D deficiency in September 2010, level was 10 (range 30-80, doctors wants me at a minimum of 35). For the most part, all of my bloodwork is normal. Organs all function normally, CBC is completely normal, Vitamin B-12 is normal, thyroid is functioning normally.

The only values that are elevated at all are autoimmune related, however nothing is significantly elevated.

TPO Ab (Thyroid) 109.6 Range 0-100

Rheumatoid Factor 22 Low<20

ESR 21 0-20

My main complaint is fatigue, the low vitamin D was an incidental finding when checking my thyroid. We are pursuing the low vitamin D because it came back that low after I had been training for 4 1/2 months during a typical hot, sunny, Texas summer for a half-marathon. I was outside for increasing amounts of time, maxing out at about 6-7 hours a week running outside. My internal medicine doctor is very concerned about the Vitamin D but my rheumatologist said he isn't that concerned and I should just stay on supplements for awhile longer. They both were in agreement that I should be tested for celiac since all other bloodwork was normal and the vitamin d was so low. If I skip a dose of vitamin d, my bones hurt within a couple of days.

Results I have are:

IgA 172 Range 68-378

tTG IgA 10 0-19

Gliad Pep A 3 0-19

Should I have testing done for the other antibodies? From what I have read the tTG IgA seems very specific but I guess there can be a few cases of false negatives??

I have occasional GI problems but not to the point I would say on a regular basis or following any pattern I can figure out, although they are occurring more often now. I have had a lot of joint problems and tendinitis while running which is why I went to the rheumatologist but he didn't find any signs of any inflammatory or degenerative diseases. He did a lot of questioning leaning toward Ankylosing spondylosis which I know has some relation to celiac but said at this time he doesn't want to pursue any other further testing with my joints since my physical signs were negative, my muscle strength is fine. I do have pitting enamel on my teeth now (29 yrs old) and also did as a child. I didn't have many cavities as a child at all but within the past two years I have had several cavities as well as a root canal after breaking a tooth and may need another one soon. From the ages of about 2-8 yrs I had terrible nose bleeds that the doctor linked to allergies. I do have pretty severe environmental allergies, I get allergy shots and take nasal sprays for those...no oral meds.

I am going in to have my vitamin D level rechecked within the next week and also likely check PTH, phosphorus, magnesium, and calcium.

Thanks in advance!

Amanda

[ravenwoodglass]

I would go ahead and ask for the other celiac tests. Do keep in mind that false negatives are not uncommon so after you are done with all testing you choose to do give the diet a good strict try for a few months to see if it helps.

It is quite possible to have GI symptoms that come and go. Mine did for years before they were an everyday occurance.

[cassP]

the Endomysial Antibody is only specific to Celiac. altho false negatives are common- and it is an easy test to mess up in the lab- but it was the only solid positive i had. my antigliadin was negative, and my ttg was very WEAK.

and im curious about your TPO antibodies... i wonder if it's a fluke- or if it's the beginning of Hashimoto's..??

[Merdie15]

My endocrinologist, internist and rheumatologist all agree the elevated TPO is likely a very early start of Hashimoto's but since my T4, T3 and TSH are all normal (checked twice in 3 months) no one wants to start treatment yet...I am ok with that. We will be checking my thyroid every 6 months for any changes, especially since there is a history of thyroid problems on both sides of my family. I found it funny that they all said there is nothing we can do to stop the Hashimotos from progressing yet I have read a couple articles about stopping progression, and even back to normal, by going gluten free.

My father died from non-Hodgkins lymphoma and from what I can remember had a history of on and off again GI problems. He was the type that rarely went to the doctor until the cancer so he very well could have had undiagnosed celiac. Due to that I am hoping my doctor will understand possibly doing a biopsy even if all my blood tests are normal. I would much rather do as much diagnostics as possible to avoid missing somyething.

I will definitely go gluten free after the testing regardless of the results. Just a shot at keeping me off thyroid medications for the rest of my life is worth it!

[cassP]

I found it funny that they all said there is nothing we can do to stop the Hashimotos from progressing yet I have read a couple articles about stopping progression, and even back to normal, by going gluten free.

YES!!!!! it is so ridiculous how our system has left Gluten Intolerance out of every medical article i see- everytime i read about various Autoimmune Diseases- like Hashimoto's or Alopecia, or whatever- the article always says that it's a complete mystery as to how almost all of these diseases get triggered...

and ive read a little on MS (as 2 of my good friends have it)- and the article will say that MS is a very complicated disease to diagnose- and that besides looking at certain criteria- the doctor will test for all the other autoimmune diseases to rule them out... and i think: there is no way in hell that they test for Celiac to rule that one out- better just leave it a mystery right- because the drug companies dont make any money off of diagnosing celiac.

[StacyA]

If I remember correctly, vitamin D is fat soluble, so you need to have enough fat in your diet and you need to have healthy intenstines. Active celiac contributes to malabsorption, so taking the supplement won't be enough if your body isn't absorbing it. If you go gluten-free, make sure you eat enough fat in your diet (obviously not too much, but a lot of our fat comes not just from meat, but from gluteny baked goods). There are versions of vitamin D that are water soluble for people with fat absorption problems.

You can also look into getting a full-spectrum light.