Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

How My Blood Tests After A Year gluten-free - Any Comments Welcome
0

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.   :)

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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 ;)

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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 ;)

0

Share this post


Link to post
Share on other sites

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!!!!! :) 

0

Share this post


Link to post
Share on other sites

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. :)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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 ;)

1

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites

: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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,662
    • Total Posts
      918,516
  • Topics

  • Posts

    • Celiac - Not yet diagnosed but feel like I'm dying.
      Hi Dylan I just wanted to join SLLRunner in welcoming you to the forum and yes, do ask to be tested for Celiac and Chrons. My nutritionalist told me that celiac disease is a great mimicker of many illnesses which I think must make a doctor's job all the harder when it comes to diagnosis.  For many of us it took us  a long time to get a diagnosis - for about eight years before my own diagnosis I had ulcers,  odd migraines and hallucinations on waking, anxiety, elevated blood protein but no obvious cause for it, anemia, numb hands and arms in the mornings, and eventually the abdominal pain and severe diarrhea. It was all scary stuff but  it was only when I got the last two symptoms, for six weeks, that I was tested for celiac disease (for the protocol here in the UK is that if you have a new gastric symptom for more than six weeks you should have further investigations).  I still wonder if I hadn't had that gastric pain and diarrhea whether my doctors would have even thought it was celiac related? After all you have been through it is not surprising that you are feeling depressed.  A lot of people feel very depressed and anxious before their diagnosis.  You are doing the right thing seeing a new doctor, and hopefully you are just around the corner from getting some long awaited answers.   Keep us posted.  You will find  some great advice here and support during your journey.  All the very best.
    • Costco
      This forum post came up when I Google searched Kirkland Dish Soap. I called them today and they said there is no gluten in the dish soap. Janis 
    • Food tolerance issues post-diagnosis
      In light of the studies that found some probiotics that are labeled gluten-free yet tested over 20ppm I wouldn't touch them. Now those would be the powder or pill forms. Yogurt is not affected by that. Since you don't have a problem with dairy then I would say eat some yogurt every day. I like Chobani Greek because it has more kinds of cultures. Remember now that powder or pill forms of probiotics do not come under the gluten-free labeling law. The same for OTC & prescription meds. You need to check every single one of those. There are a few online sites where you can check things like that or ask here but as far as prescription meds -- call the manufacturer EVERY TIME. I also wanted to tell you in case you didn't already know that since celiac is genetic and can present at ANY age then all your first degree relatives need to be tested every 2 years in the absence of symptoms and immediately if symptoms present between the 2 year periods. As far as the digestive enzymes go, I tried Digest Gold for a short time & it really didn't seem to do anything for me however I will say I had a lot of issues going on at the time so I might not know if they helped or not. I decided to quit them in order to take that out of the equation so I could try to pin down what was causing me distress. The fewer things in the mix you know. I have heard people report the same as your consultant said. Some say they helped & some say they didn't. Remember Jammy, you're just in the beginning stages. I KNOW you want to heal & heal FAST. Been there, done that! It's like this: you didn't get sick overnight & you're not going to heal overnight. Patience is the watchword here. It's hard I know! You just want to get on with your life. We can all relate.  Again, I'm going to say to eat foods easy on your gut. WELL cooked foods. No raw carrots, coconut, nuts & stuff like that. Easier on your gut would be nut butters.... peanut butter, cashew butter, almond butter etc.... It's sort of like being a baby ---  soft, easy to digest foods. Bone broth is a great healer for you gut & extremely nutritious as well as being easy on the digestion. Here's just one recipe: http://wellnessmama.com/5888/how-to-make-bone-broth/
    • Food tolerance issues post-diagnosis
      Thanks for the tip! Will try that out in the next few days. By the way, has anyone had any joy with probiotics or digestive enzymes in terms of symptom relief/speeding up the healing process? I asked my consultant about this when I saw him last week and he said that some people find them beneficial while others don't, but obviously I'm keen to try anything that may help, with uncomfortable fullness/bloating/gas still being my main issue  - is it worth giving them a go?
    • Are The Following Gluten-free?
      I realize that this is an old thread but I would just like to say something about label reading. Just because a product says gluten free on the label doesn't mean that you don't have to read any further and can have complete trust in the product.  There are a lot of products that state that they are gluten free on the package and then you find out that they are processed in plants that also produce wheat products. If you are super sensitive, you need to know that information. I am afraid that there is no escaping reading labels in supermarkets unless you know that the company makes it's products in a truly gluten free environment (even then you should read labels because ingredients can and do change, even in products made in gluten free facilities), It's a pain to stand there and read labels but if you are super sensitive, you might just have to do that. For example, I am gluten and lactose intolerant but also sensitive to nuts and sesame. While it may be fine for other gluten intolerant people to eat something that's labeled gluten free which is produced in a gluten free facility that also processes nuts, for me it is not.. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,753
    • Most Online
      1,763

    Newest Member
    The sweet cheeks
    Joined