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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Test Results.....worrying?
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15 posts in this topic

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.

 

 

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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.

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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.

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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.

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

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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.

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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:  http://www.vitaminshoppe.com/p/natural-sources-all-adrenal-165-mg-60-capsules/nz-1001

Thyroid support:  http://www.vitaminshoppe.com/p/gaia-herbs-thyroid-support-120-veggie-caps/gh-1153

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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!!

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Did they test thyroglobulin or TPOAb?

Thyroglobulin is not used to dx Hashis.... http://labtestsonline.org/understanding/analytes/thyroglobulin/tab/test/

The TPOab is used to dx Hashis Hypothyroidism. http://labtestsonline.org/understanding/analytes/thyroid-antibodies

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: http://c.washingtontimes.com/neighborhood/steps-authentic-happiness-positive-psychology/2013/nov/11/fibromyalgia-indisputable-proof-claims-uk-research/

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....

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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.

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

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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

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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?

http://www.nlm.nih.gov/medlineplus/ency/article/000348.htm

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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.

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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!

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