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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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ButtercupSarah

Test Results.....worrying?

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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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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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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
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    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
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