Thoughts After Recent Blood Test

[miobrien]

I have two younger sisters. The youngest was diagnosed with celiac disease a few weeks ago; the other does not, though she tested positive for DQ8.

I recently had several blood tests taken to see if I had celiac. Some of the results came back positive (see below), so my doctor has suggested I consult a gastroenterologist, and go from there.

Nonetheless, I've asked a couple of friends to take a look at my lab results. One is an endocrinologist; the other is an ER surgeon; and the other is a medical student at NYU. All of them reviewed the labs, and said that I shouldn't be worrying about celiac disease but a thyroid problem. This is because my lab results were mostly positive for thyroid issues.

So what do you all think?

I'm planning on sticking with the gastroenterologist for now, but it's confusing if the other people are telling me to see an endocrinologist.

Thyroid Panel:

Anti-Thyroglobulin = 86 (high); range 0-40

Anti-Thyroid Peroxidase AB = 78 (high); range 0-34

FREE T4 = 0.93; range 0.71-1.65

TSH = 1.95; range 0.49-4.70

Celiac Disease Panel:

IGA, SERUM = 221; range 70-400

t-Transglutaminase (tTG) IgA = 1; range 0-3

t-Transgluitaminase (tTG) IgG = 1; range 0-5

Endomysial Antibody IgA = Negative

Deamidated Gliadin Abs, IgA = 8; range 0-19

Deamidated Gliadin Abs, IgG = 4; range 0-19

HLA DQ2, DQ8

DQ2 = Negative

DQ8 = Positive

[GlutenFreeManna]

I'm not an expert at reading tests, but Thyroid conditions and Celiac are closely linked. I'm sure your friends meant well, but unless they are experts in celiac they may not have known that untreated celiac disease can lead to thyroid disease. Your should follow up with your doctor that ordered the tests and try the diet if all your celiac-related testing is done. You can still be tested/treated for a thyroid condition if you are gluten free. But if you plan to have further celiac tests (like an endoscopy with small intestine biospy) you need to keep eating gluten until that testing is done.

[Roda]

Well at least your doctor did all the right thyroid tests. IMHO, Yes you should consult an endocrinologist and the gastroenterologist too. Autoimmune diseases tend to run together. Alot of us on here have thyroid issues. I was diagnosed with hashimotos disease in 2000. I know I had it several years before this because a friend of mine who did an ultrasound on my thyroid (I was a guinea pig for a demo on a new machine) thought it looked like hashi's. I had tests done then, but not the antibody tests. In hindsight I think I had celiac then too and just didn't know it since what vague symptoms I had I just figured it was normal for me, related to the thyroid, or pregnancy (I was pregnant at the time). I was on thyroid replacement before my pregnancy with my first son, but didn't have the antibody tests until I was in my second trimester.

[sb2178]

The only positive test is the gene, which means you have the potential to develop celiac but may or may not currently have it. Standard blood work indicates not celiac currently. You have a couple of choices now. You can push for further testing (IgG and IgA Antigiadin antibodies or a biopsy) or test the diet. The AGAs are less specific, but may show up earlier in the disease or indicate a gluten intolerance. Some people believe that gluten intolerance will proceed to celiac in people vulnerable to autoimmune disease (you are, see thyroid).

A diet test works best if you also eliminate dairy and stick to it for at least 3 weeks, and even as long as 3 months. It's very important to also avoid contamination (no shared toasted, scratched non-stick pans, etc). You can challenge for gluten after you start to feel better if you aren't entirely sure that it makes a difference.

The one thing you should be absolutely aware of is that you may have celiac triggered at some point in the future. So, you need to either have semi-regular testing (3 years seems to be a common interval; or at any new health problem) or go ahead and go gluten free. Some people with the genes do feel better off gluten-- just be aware that your medications may need to be adjusted as your health may change.

[Skylark]

Based on the labs, you are starting into autoimmune thyroid disease, and you'll probably be diagnosed with Hashimoto's. You do need to be followed by an endocrinologist, and regular TSH testing.

With a first-degree relative who has celiac you have a 1 in 20 chance of developing it yourself irrespective of having DQ8. You don't have the celiac antibodies yet, which is good, but celiac can be triggered later in life and having one autoimmune disease makes it more likely that you will develop another. Do you have symptoms of celiac? (Diarrhea, constipation, bloating, cramping, reflux, stomachaches, ridges in your nails, thin tooth enamel, thin hair, low iron, low B vitamins, fatigue, anxiety, depression, canker sores in your mouth, or a blistered and itchy rash.) Do you notice any discomfort when you eat breads or pasta?

[miobrien]

Hey all,

Thanks for your replies. I appreciate your input and assistance.

Regarding symptoms, I've been thinking about them for the past week. Compared to my sister, my symptoms (if that's what the are) are subtler. She has more obvious ones like diarrhea, bloating, cramping, etc. I, on the other hand, have a bunch of things that have been affecting me for a long time.

thin hair = my parents claim it was long until puberty; I'm not bald, but I've lost thickness on the top of my scalp since 7th grade

migraines/headaches = these come and go, but I often get painful sensations behind my eyes and in my forehead

acid reflux = my doctor said to take prilosec, which worked for a while, but it has started to come back

More recently -- for about the past 8 months -- I've been suffering from the following:

anxiety = a doctor I saw in Boston diagnosed me with what he called "anxiety" after I described an "out of body" feeling to him that I'd been getting for two month. He prescribed me citalopram, which worked in the beginning but lately has not been helping. I would describe it as feeling high/stoned but very uncomfortable -- as if my body parts were disappearing and my mind was all that was left; I would almost describe it as an allergic reaction more than anxiety as I never get rushing thoughts or panic attacks or anything. My mind is very logic and lucid, but my body will all of the sudden just have these "fits" -- often later at night.

numbness in my extremities = this is a major symptom of the "anxiety"

restless legs = sometimes I have to get out of bed and sleep somewhere else

fatigue = lately just don't have as much energy as I used to (I think ... I hope I'm just not lazy!); I can sleep a lot once I fall asleep though falling asleep isn't the easiest

It's hard to tell about the breads and pasta as I've been eating them for my whole life (in pretty large quantities), and I've never really attributed a stomachache to eating them. I do remember getting stomachaches after eating Chinese food the last few times -- lo mein and General Gao's chicken specifically.

All in all, for me, the anxiety is the most "odd" symptom. I just don't think it's anxiety in the traditional sense, and I'm wondering if this is a reaction to gluten that my body has since I eat it so much...

[ravenwoodglass]

You should give the diet a shot even though your celiac panel was negative. False negatives are not uncommon. Also be sure to follow up on the thyroid issue.

[tarnalberry]

have you had your iron levels checked? fatigue and restless leg are both connected to low iron levels and iron stores.