Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Test Results.....worrying?


ButtercupSarah

Recommended Posts

ButtercupSarah Rookie

Hi ya'll

 

I got some new blood work back yesterday and I am not comforted by the results, obviously something is wrong...and I'm not getting any answers.

I am Hypothyroid but non hashimotos and have been gluten free for almost a year

 

I have a couple of off the charts results in inflammation and cortisol:

 

Cortisol 36.4 ug/dl      Range: 2.3-19.4

hs-CRP 6.7                 Range: <1.0

 

Also my TSH is UP from my last bloodwork from 2.5 to 3.09 I finally convinced her to up my armor by 15mcg after she let me sit on the same dose for 9 months.

 

My coritsol is up from my last bloodwork from 34. Adrenal fatigue? My C reactive protein (inflammation) is silly high and I know this can be indicative of celiac. My body has been in so much pain lately that I worry about fibromyalgia. I should get the results of my testing for whether I have the Celiac gene soon. A little family history: Great grandmother, and grandmother diagnosed hypothyroid, uncle has MS, grandma is allergic to gluten (refuses to admit it, but does say she feels better when she doesn't eat bread) surprise surprise she is schizophrenic, manic depressive, and bipolar. Great grandmother also has stomach cancer and diverticulitis. I'm afraid they are all killing themselves with this protein!!!

 

Thank you for your insight! My Dr. (just found out she is an ARNP) has been of little assistance.

 

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

TSH is useless for thyroid diagnosis and treatment , apparently, in your case. You need free t3, free t4, reverse t3 labs. And run ALL thyroid antibodies, again.

How are your vitamin levels? If you are low in iron, b's, d3, selenium, chromium your thyroid may be underperforming because of deficiencies. Deficiencies go with celiac and thyroid....they say thyroid because hypo people produce less stomach acid so food doesn't break down well. I've never been able to understand if those people are also celiac....sigh.

ButtercupSarah Rookie

She refuses to run my antibodies again (because my insurace won't cover them), they haven't been tested in 9 months. I am going to a new Dr. on the 30th. I just want some answers...I'm sick of being told to take fish oil and sleep more.

 

My D3 is low and my tests basically indicate I'm at high risk for cardiac episodes, which makes zero sense...I am a 26 year old female fitness instructor who eats VERY well 90% of the time.

pricklypear1971 Community Regular

You can order tests online (they send you the order, you go to lab for draw)...same labs doctors use. You pay cash but it's an option.

Yeah. New doctor.

pricklypear1971 Community Regular

You can take liquid d3, which may be more easily absorbed if you have low stomach acid or celiac.

ravenwoodglass Mentor

Are you still eating gluten? Do start the diet trial as soon as all celiac related testing is finished. Do keep in mind that the gene test can be helpful but even if you are negative for the two most common genes you can still be celiac.

NoGlutenCooties Contributor

If I understand you correctly, you've been gluten-free for a year and your doctor refuses to retest your antibody levels?  Were they down when they tested you 9 months ago?  If so, there's no reason to test them again because the tests for antibodies is useless if you're not consuming gluten.

 

It is good to get all of the other testing done (thyroid, etc.) but I found I felt tremendously better by taking an adrenal support supplement along with a thyroid supplement.  These are the ones I use:

Adrenal support:  Open Original Shared Link

Thyroid support:  Open Original Shared Link


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ButtercupSarah Rookie

The last time my antibodies were tested I had been gluten free for almost 3 months, so, it seems as though they are useless. I will look into the adrenal support supplement, I did a spit test for adrenal function and should know the results of that very soon.

 

My only antibody test was 9 months ago: Gluten free for a little over 3 months at the time

 

Thyroglobulin abs <10 IU/ml  Range < 115 IU/ml

 

I am concerned about the level of inflammation on my current test...could that indicate fibromyalgia? I always thought my pain was due to my job as an aerialist. I also read it could be an indication of celiac.

hs-CRP 6.7                 Range: <1.0

 

Thank ya'll for helping me sort this craziness out!!

pricklypear1971 Community Regular

Did they test thyroglobulin or TPOAb?

Thyroglobulin is not used to dx Hashis.... Open Original Shared Link

The TPOab is used to dx Hashis Hypothyroidism. Open Original Shared Link

You need to understand if they ran the correct thyroid antibody test.

You can have inflammation from ANY autoimmune disease. Since you know you are hypothyroid, I'd pursue that AND your gluten intolerance....

You should probably read this about Fibro/thyroid: Open Original Shared Link

Your high cortisol may be the effect of poorly managed thyroid. You may need more, or different thyroid med. you really need free t3, free t4 and reverse t3 to see what your thyroid hormone levels are and if you are utilizing the meds properly. You may need an adrenal support supplement or lifestyle modification/change to help lower your cortisol.

And finally, if you haven't been gluten-free to Celiac standards:observing gluten-free to prevent cross contamination, etc., you could try cleaning up any remaining gluten to see if you feel better. I mention this because some people who are unsure of their status don't observe strict standards. I'm not saying you don't....

eers03 Explorer

I'm not sure so someone please chime in...  Cortisol levels can also be a metric for Addison's Disease, yes? If thyroid is checking out okay then it seems like that is what the cortisol would point to.  I'm on shaky ground here.  Not sure on this but it seems like when I was at Mayo they tested my cortisol to check for Addisons.  Mine checked out okay.

frieze Community Regular

make sure they are using the right range for the right time of day....

ButtercupSarah Rookie

make sure they are using the right range for the right time of day....

 

The peak range (morning) was Range: 2.3-19.4 and my result (taken around noon) was 36.4

nvsmom Community Regular

That reading for cortisol is super high, especially for being taken at noon - cortisol usually peaks in the morning.

 

As far as I know, high cortisol can be caused by stress (mental or physical) as well as glandular problems like Cushings (pituitary adenoma) or an adrenal adenoma. Cortisol is also a check for Addison's (when body attacks the adrenal gland), as previously mentioned, but in that case the cortisol would be too low, so it may not apply in your case. Adrenal insufficiency or fatigue probably isn't the case either because the cortisol levels would be (I believe) sub-clinically low - not almost double the normal limit as you have.

 

What did your doctor say was the cause of the high cortisol ?  Could cushings apply to you?

Open Original Shared Link

Gemini Experienced

The peak range (morning) was Range: 2.3-19.4 and my result (taken around noon) was 36.4

Sarah.....was this a blood test for cortisol or a saliva test?  Saliva testing is more accurate as they use 4 points of reference, pertaining to time of day, for measurement.  Early morning when you awaken, noon, late afternoon and late evening.  If these reference ranges were for morning, then taking your blood around noon would not be correct.  Sorry for the misunderstanding, I am just trying to figure out exactly what you mean. I also will have to look at my last test for the reference ranges because I can't remember what they are supposed to be.

 

As far as your CRP is concerned, if you have autoimmune disease, it can raise any inflammatory markers.  My ANA was off the charts with my 4 AI diseases but, over time, I have brought it down by following a strict gluten-free diet.  It is still not in the normal range but way better than it was 9 years ago.  It can be improved upon so don't let this number worry you too much, from a cardiac point of view.  Doctors are alarmists.

ButtercupSarah Rookie

Sarah.....was this a blood test for cortisol or a saliva test?  Saliva testing is more accurate as they use 4 points of reference, pertaining to time of day, for measurement.  Early morning when you awaken, noon, late afternoon and late evening.  If these reference ranges were for morning, then taking your blood around noon would not be correct.  Sorry for the misunderstanding, I am just trying to figure out exactly what you mean. I also will have to look at my last test for the reference ranges because I can't remember what they are supposed to be.

 

As far as your CRP is concerned, if you have autoimmune disease, it can raise any inflammatory markers.  My ANA was off the charts with my 4 AI diseases but, over time, I have brought it down by following a strict gluten-free diet.  It is still not in the normal range but way better than it was 9 years ago.  It can be improved upon so don't let this number worry you too much, from a cardiac point of view.  Doctors are alarmists.

 

I have been on a gluten free diet for a year now, and I my testing was all done POST gluten free diet. The original cortisol testing was done through blood.

 

I just received my spit test results back:

 

Gliadin was negative (obviously, I don't eat gluten)

 

My morning cortisol was depressed and the noon, afternnon and midnight were normal.

 

My total salivary SIgA was 6mg/dl - Normal 25-60mg/dl

 

My understanding is that total salivary SIgA has to do with your mucosal membranes, and is something that can be low in people with Celiac? Does anybody know more information on total salivary SIgA?

 

Update since my last post: My new Dr. has sent more for an MRI and evoked potentials test for Multiple Sclerosis. I have had numbness and tingling for years and have developed an obvious weakness in my left side.

Still waiting on the results of my Thyroid U/S

 

Thanks ya'll so much!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,609
    • Most Online (within 30 mins)
      7,748

    Gwen Gatzke
    Newest Member
    Gwen Gatzke
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.