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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How My Blood Tests After A Year gluten-free - Any Comments Welcome
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18 posts in this topic

I've been gluten-free for a year now, with just a few accidental slips. I recently went to a new orthomolecular doctor who ran a few (million) tests and I though I'd post some to compare how it changed over the year. It really wasn't by much.

 

tTG IgA - is 34.4,  was >200   (reference range 0-20)

EMA IgA - is negative,  was 1:40   (no ref. given)

 

Glucose fasting -  is 5.3,  was 4.9   (3.9-6.2)

Sodium -  is 136,  was 139   (133-145)

Potassium -  is 4.1,  was 4.3   (3.3-5.1)

Calcium  -  is 2.31,  was 2.40   (2.10-2.55)

Creatinine  -  is 54,  was 52   (35-100)

Ferritin -  is 94   (13-375) not previously tested

Iron -  is 22   (12-31)  not prev. tested

Magnesium -  is 0.82   (0.65-1.05)  not prev. tested

Phosphate -  is 0.98   (0.80-1.50)   not prev. tested

B12  -   is 694,  was 896  (155-700) 

D  -   is 116.0,  was 106.0   (80-200)

A  -  is 1.5   (1.5-3.5)   not prev. tested

Zinc -  is a bit low using a "taste test"

 

So nutrients are all good. I find it funny that my B12 went down into the normal range when most celiacs are low in B12 and theirs goes up on a gluten-free diet.  For my last D test I was taking 2000-4000 IU D per day whereas a year ago I just took 1000IU; my doc has now upped me to 10 000IU/day. He also has me on a mega dose of A - I guess I need to eat more carrots.  LOL

 

All hemoglobin, RBC, WBC, platelets are normal about about mid-range so I won't add them.

 

My cholesterol is still on the low range and barely moved, although it did all go up just a tad. I eat a diet heavy in red meats and eggs.

 

Cholesterol - is 4.00,  was 3.92   (3.80-5.20)

Triglycerides  -  is 0.53,  was 0.47   (0.60-2.30)

LDL Cholesterol  -  is 2.22, was 2.08   (2.00-3.40)

HDL Cholesterol  -  is 1.54,  was 1.63  (>= 0.91)

Lipoprotein (a)  -  is 0.37   (0-0.30)  not prev tested  -  don't like that...

 

I discovered hypothyroidism at about the same time as celiac disease. I'd had symptoms for 15+ years and kept getting it checked but my doctors said I was normal. I later found out that I was subclinical but they never mentioned it - I now ALWAYS get copies of my labs and don't trust doctors farther than I can throw them.

 

TSH  -  is 0.11,  was 14.27  (0.2-6.0) - don't worry, I have no hyper symptoms. It's low due to natural desicated thyroid

Free T3 -  is 6.8,  was 4.0 about 7 months ago  (3.5-6.5)

Thyroid Peroxidase Antibody  -  is 24.0,  was 33.8   (0-34.0) - went down so doc says I'm no longer hashi's- due to gluten-free?

 

Cortisol AM -  is 387   (200-690) not prev. tested   - my doctor prescribed cortisol to bring it up a bit

Testosterone  -  is 1.1    (0.5-3.0) not prev. tested  - doc wants this up a bit too

Insulin -  is 46.3   (<120) not prev. tested  -  my doc thinks this is high for me and closer to 35 is better(?)

Dehydrepiandrosterone Sulfate  -  is 2.3   (1.5-13.0) not prev. tested  -  doc wants higher to 9 and is giving me DHEA

Aldosterone -  is 206 (no range) not prev tested - doc wants closer to 770 because I have low salt diet

 

Based on the above tests, my doc says my adrenals are a bit slow and wants to get them going... I guess that's adrenal fatigue? It would make sense since I've had a few untreated AI diseases for a decades.

 

This test freaks me out a bit:

Insulin Like Growth Factor-1  -  is 401  (109-284) not previously tested

 

I know IGF-1 helps with growth an repair by making new cells, but it's also associated with higher cancer rates and Acromegaly. I have a few symptoms of that but I can explain them away (example: feet have widened to an E, but I've had 3 kids; or my barrel chest but big bones run in my family - my dad played pro football). 

 

ANA - is 1:80 speckeld,  was 1:80  speckled ( 1:80 and below is negative) - it was abnormal at 1:160 is past years, this is good

 

I also had urine tests done:

Urine Specific Gravity  -  is <1.005, was <1.005  (1.006-1.030) - this concerns my doc

 

And then I had a 24 urine test done:

 

Total volume -  is 2750 ml  (is a bit high)

Creatinine, 24H Urine  -  is 14.8   (6.2-14.1)

Sodium, 24H Urine  -  is 280   (43-217)

Potassium, 24H Urine -  is 96   (26-123)

 

So a few off ones there.

 

 

Overall my nutrients look good. B12 is a bit weird.  I'm a lucky celiac when it comes to nutrients. B)

My thyroid is at a happy place - main symptom left is fatigue but that could be due to adrenal fatigue, or high IGF-1.   :unsure:

My blood sugar and insulin aren't great but not bad. I'm cutting back on sugar. :(

Urine tests are a bit off but that could be related to adrenal issues.

 

Any comments? All ideas are welcome.   :)

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Hi nvsmom,

 

You are 1 year into GFD and still have elevated tTG IgA. It may be that this is the cause of your fatigue. Is it improving or is it getting worse? Your triglycerides levels may be indicating issues with your hypothyroidism. I think there are at least two possible causes for your fatigue as you have both hypothyroidism and celiac. I am no doctor but I think the tests speak for themselves.

 

What kind of doctor are you seeing? I guess you already know that "adrenal fatigue" and "DHEA" belong in the alternative sphere of medicine. I am no expert but it sounds kind of strange to prescribe cortisol when levels are normal. Didn't quite understand what you are doing with B12. Levels are normal, so now you are taking extra B12 supplements? Your doctor may be caught up in the wrong things.

 

I hope you´ll feel better soon.

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Hi Nicole!

 

I think overall this is great news....I understand the IGF-1 would be a bit scary, but try to put that one on the list to retest and wait and see -- this year has been a huge transition for your body -- removing gluten and then treating the thyroid.  Also keep in mind that as your body has time to heal your thyroid may improve more so make sure you adjust the thyroid hormones as needed.

 

I will tell you all of my hormones where a bit wonky for over three years after removing gluten -- now that I am finally doing a bit better my body seems to be making a few more of these items, but I do have to supplement progresterone (I think I'm about a decade plus older so age can play a part too).

 

Again...I think it is all great news -- especially your Thyroid Antibody :D -- I would monitor the other blips for now.

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Hi nvsmom,

 

You are 1 year into GFD and still have elevated tTG IgA. It may be that this is the cause of your fatigue. Is it improving or is it getting worse? Your triglycerides levels may be indicating issues with your hypothyroidism. I think there are at least two possible causes for your fatigue as you have both hypothyroidism and celiac. I am no doctor but I think the tests speak for themselves.

 

What kind of doctor are you seeing? I guess you already know that "adrenal fatigue" and "DHEA" belong in the alternative sphere of medicine. I am no expert but it sounds kind of strange to prescribe cortisol when levels are normal. Didn't quite understand what you are doing with B12. Levels are normal, so now you are taking extra B12 supplements? Your doctor may be caught up in the wrong things.

 

I hope you´ll feel better soon.

Thanks for the response, funkflex. :)

I agree that my positive tTG IgA could still be a factor of my fatigue. It can also be high due to hypothyroidism, so that could be part of it. My fatigue is a bit better than it was a year ago. It gets worse when I have an autoimmune flare-up of some sort, and I haven't had that for a few months.

I'm not too worried about my triglycerides. I don't think they indicate much. Celiacs often have low cholesterol levels thought to be due to malabsorption. Hypothyroid patients usually have high cholesterol so this is one area celiac disease has 'helped' me. ;)

I cut back on my B12 supplements when I was found to be high. I still take some, but not everyday, and my levels came down to a good spot.

My doctor is a regular doctor who later specialized in orthomolecular medicine which is treating patients through diet and supplements... It sounded pretty ideal to me. I'm aware it's not mainstream, but mainstream is failing me. Adrenal fatigue isn't widely accepted, but it may be one day. I'm willing to pursue that path for a while.

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Hi Nicole!

I think overall this is great news....I understand the IGF-1 would be a bit scary, but try to put that one on the list to retest and wait and see -- this year has been a huge transition for your body -- removing gluten and then treating the thyroid. Also keep in mind that as your body has time to heal your thyroid may improve more so make sure you adjust the thyroid hormones as needed.

I will tell you all of my hormones where a bit wonky for over three years after removing gluten -- now that I am finally doing a bit better my body seems to be making a few more of these items, but I do have to supplement progresterone (I think I'm about a decade plus older so age can play a part too).

Again...I think it is all great news -- especially your Thyroid Antibody :D -- I would monitor the other blips for now.

Thanks Lisa. :D. I think it looks pretty god overall too. I was pretty lucky to avoid the deficiencies that many celiacs get. I do have some blips in the tests but they'll even out eventually... Hopefully. Lol

That IGF-1 is worrisome but it isn't causing obvious problems (I think) so I have some time to sort that out. My fasting glucose is close to being high, so hopefully it is not linked to a blood sugar problem either....I'll figure it all out eventually.

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I have found that low IGF1 and growth hormone (GH) are found in some celiacs and will help cause short stature in children. It is not common but enough to be noted... I have the opposite problem of rather high IGF-1 (which is caused by high GH levels).

Interestingly, high IGF-1 often causes hypertension, but celiac can cause hypotension... Mine is borderline hypo, with postural hypotension, so celiac disease might have helped counter a high IGF-1 for me (if indeed it is a problem/pituitary tumour and not just a lab fluke).

Another oddity is that high IGF-1 is linked to hyperthyroidism because the pituitary releases too much TSH causing too many thyroid hormones to be released. I have hypothyroidism... The exact opposite!

I found high IGF-1 is linked to is type 2 diabetes and I am closer than i want to be in becoming prediabetic. My fasting blood glucose was 5.3 and prediabetes starts at 5.6. I'm taking that as a warning and have cut candy out of my life (I used to eat candy a couple times a week). That was my only source of sugars. I eat almost no other high GI foods except some syrup on my coconut/flax pancakes. I'm also losing weight (from no candy and a balanced thyroid?) so I'm helping it along by not eating in the evenings as well. I am about 10lbs overweight according to the BMI charts, so I will try to lose 20lbs.

With the floods in Calgary, and the Canada Day long weekend happening, I have been unable to reach my family doctor. I hope to have him look into it next week. I want more testing as the idea of a pituitary tumour that is affecting my brain has me nervous. I know that 25% of all people have a small pituitary tomour, but still... Freaking out a bit. It is hard not to obsess.

I keep having that Arnold line from Kindergarten Cop running through my head, "It's not a tumour!" LOL ;)

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I keep having that Arnold line from Kindergarten Cop running through my head, "It's not a tumour!" LOL ;)

 

Now that is running through my head too!

 

Hang in there -- I strongly agree to make docs run more tests...but do remember your body is a bit wonky (new medical term) from all the adjustments this year -- I'm one to talk -- been researching every minor blip in my blood tests for years now -- including pituitary / adrenal tumors as I had some indications along those lines pre-celiac dx.  Scary stuff!

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Wonky..... I think I've heard that medical term before!  :D

 

I know what you mean, Lisa. This is why doctors (or least a couple of mine) tell us that we read too much - we freak ourselves out. On the other hand, if it is something, then my orthomolecular doc who ordered that test didn't catch it so it could be good I'm looking into it.

Thanks for the support.  :) I'm not too stressed about it (well, a bit stressed). It's sort of like diagnosis of celiac disease: it is not usually a deadly thing but, if it is a problem, it isn't going to add extra sunshine and roses to my life either.  LOL ;)

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But never hurts to add a bit of sunshine whilst your are perusing the net...never give up looking for answers...just throw all the scenarios out here so we can assist with the grounding party....never...never give up the learning!!!!! :) 

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Mayo has an article in its Communique newsletter about high IGF-1. http://www.mayomedicallaboratories.com/media/articles/communique/mc2831-0306.pdf. On page 5 is a flow chart on how to diagnose acromegaly. My IGF is well over 25% higher than my age set reference range's upper limit - mine is closer to 50% higher...Arnold might have been right. Ugh! Why isn't my doctor open on the weekend?!

I'm not really too stressed about it. This is where I am doing all my venting so I don't worry family. Honest. :)

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I just wanted to say...just because antibodies go down doesn't mean the hashimotos is gone. It's an autoimmune disease like celiac. It doesn't disappear but it means you've slowed down the antibody attack.

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I just wanted to say...just because antibodies go down doesn't mean the hashimotos is gone. It's an autoimmune disease like celiac. It doesn't disappear but it means you've slowed down the antibody attack.

I know. :) I rolled my eyes behind his back. LOL ;)

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I hate my doctor.  :angry:  Dr R refused to look at the high IGF1 test that the other doctor (Dr J, who I went to for natural dessicated thyroid because dr R refused it to me) had found. He outright refused! I am making an attempt to get all of my records from him tomorrow and I will sever the relationship. I'm at the point where I would rather be without a family doctor than with him. It will probably take a few months to a year to get a new doctor unless I'm lucky, but I can't be put on waiting lists if I already have a doctor because of our doctor shortage.

 

Bah. He lectured me about the evils of the NDT for most of the appointment because I told him I had switched... I wanted my family doctor to know what i am up to. I made copies of every test the other doctor did so he would have all the info and know of any changes to my own treatment (since his wasn't working for me-not that I said that).  I showed him the high IGF and he refused to refer me to an endocrinologist. As he walked out the door, he said to let the other doctor do it because he wasn't touching it.  Jack a$$!

 

The other doctor (Dr J) was consulted, and I now have an appointment for next Thursday after I had to convince his office to see me.  They told me that I should see my own GP for a referral (Dr J is not a family doc) and wouldn't see me until I told them that my other doctor had refused. I really didn't want to talk to this doc (Dr J) about it since he missed the significance of the test in the first place even though he had ordered it!

 

I soooo wish doctors were not a necessary evil. They drive me batty! The only time they seem to help me is if I need antibiotics or I've already hit the "critical" stage of a disease (like my ITP).  I found my celiac and I found my hypothyroidism - they just confirmed it. Now I might have stumblde across acromegaly? If that is an issue for me, and I hadn't consulted Dr Google about the test that Dr J had oredered... well, the untreated survival rate past 50 isn't good for acro. I really really hope I am missing something about alternate causes of a high IGF-1, or my lab screwed up royally, but if I am right, I will now have seen two docs that missed it the significance of a high IGF1.

 

Ugh. If dr J won't refer me to an endocrinologist when I see him next week, I'll hit every walk-in clinic in town until someone retests me and refers me to an endo.

 

I don't get mad often but I am spitting mad today. Grrr. i need a wall to punch. ;)

 

Aaaaaaand, thank you for the vent. :unsure:

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:angry:  :angry:  :angry:  :angry:  :angry:  :angry:  :angry:  :angry:  :angry:  :angry:  :angry:  :angry:  :angry:  :angry:  :angry:  :angry:  :angry:  :angry:  :angry:

 

these dudes really need steam puff bubbles like the love smiley.

 

that would let the anger vent properly

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Oh how I feel your pain. Hang in there. I have yet to find a doc who actually figured anything out. Always had to figure out on my own...causing them to sometimes essentially go...oh, oops down the road.

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Steam puffs.... Excellent idea , Lisa. :). Thanks.

Seraphim, I hear you! I'm hoping not to prove them wrong (again) with this.... I think I don't mind doctors not knowing everything but what really bugs me is when they act like do. What I would give for a doctor who admitted their weaknesses,strived to improve themselves and was open to a patients assessments of themselves.

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I saw Dr J, the orthomolecular doctor, today. He was the one who ran the IGF-1 test but said nothing about it. I told him my concern and he seemed to not be worried but he did check symptoms. He blew it off a bit but he did order a retest, so I guess that is something. The problem with a retest is,if it comes back normal this time, which test is actually correct? KWIM?

He mentioned a patient witha much higher IGF that he had sent for a CAT scan and they found no pituitary adenoma. That was a bit reassuring, although if I was her I would be looking hard to find the cause of a high IGF-1 so I could head off cancer and heart problems...

So, I'll test soon and then see him in a late August. In the meantime I will try to forget about tumours, do just a bit more research to see if ican find anything substantial that could make my IGF-1 high.

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