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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? - 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

Host Of Problems, Men's Health, Possibly Celiac?
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Like most of you here, I'm several years into this health discovery journey, trying to figure out just what's wrong with me, going down lots of different roads. My doctor wans to wait a few months to do the Celiac Panel tests on me (for reasons I'll explain in a minute), which will be rough because I'm anxious to start on a Gluten Free diet but know that I should wait until after getting tested. I tested positive for lots of food allergies years ago, including Wheat, but I know that doesn't necessarily mean anything in terms of a gluten intolerance. I've been on a low card diet a few times and generally felt much better, so I'm aware that I have an "addiction" to things like breads and pastas and feel better when not consuming them, but up until recently assumed that this was due to a carb intolerance. I'm only now starting to see the possible "Gluten" connectoin.

Here are my facts so far, all based on fairly recent lab tests:

Diagnosed as Hypothyroid 3-4 years ago, take Synthroid to keep the numbers in the normal range (although can't say I've physically felt any better).

Diagnosed with a B-12 Deficiency, now taking oral supplements daily and getting injections once a month.

Related to the B-12 Deficiency, tested positive for the Intrinsic Factor antibody which led to a diagnosis of Pernicious Anemia, Went to a specialist, and another test for the Intrinsic Factor antibody was negative. So not sure what's going on there.

Diagnosed with a Vitamin D deficiency. Now taking oral supplements daily.

Diagnosed with a Testosterone Deficiency (38 year old male with the T levels of an 80 year old). Get weekly Test. injections and the levels are slowly going up. Also tested low on LH and FSH hormones, which suggest that the cause of the Test. deficiency is pituary related, although an MRI didn't show anything and that angle isn't being explored by my doctor.

Elevated Liver Enzymes; AST & ALT have been mildly elevated off and on for the last couple of years, resulting in hepatitis testing (fine so far), lots of alcohol & acetominphen absitence for restestings. Most recently had an elevated Alk Phos result, so doctor wants me to get a liver ultrasound soon.

Several other abnormal test results that I can't remember right now but don't seem as important.

So I'm now taking an assortment of things-- thyroid and testosterone replacement, Vitamin D & B-12 supplements, now can't drink alcohol or take pain relievers because of abnormal liver tests, glucose levels seem to be slowly rising, and I'm sure there will be another surprise during my next round of lab tests. My doctor is very thorough and not opposed to testing me for things, which is good, but his approach seems to be to isolate each individual problem and treat it individually, rather than figure out what is connecting all these things. I suggested to him that perhaps there is an autoimimune explanation and he said he'd be willing to test for things like Celiac in a few months but first wants to monitor the Testosterone, B-12, and Vit D levels and get them stabilized.

In the meantime, I'm glad I've found this site and from the research I've done apparently all of my abnormal lab results/health issues can be attributed to Celiac. I know there are other possible causes but I'm really hoping this is the answer and I can treat the root problem, cut out Gluten, and most of the other issues will resolve so I don't have to pop pills and get injections for the rest of my life.

Anyone else out there have a similar set of problems? I can see how gluten related malabsorbtion can create the Vitamind D & B-12 deficiencies, and possibly cause liver problems, but I'm less clear on how Celiac can cause hormone imbalances.

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Welcome to the board, Michael, and congratulations on winning the connect-the-dots prize!! :D I am not sure why doctors are not very good at this game - maybe if they connect all the dots all at once they lose a patient and a source of income :rolleyes: I am also not sure how gluten affects the hormones, but we do know that it does, differently in both men and women.

Rather than following your deficiencies for years, it would seem more economical to cut straight to the chase, test for celiac and, even if it is negative, have you go gluten free and see what happens. Of course you will still need to supplement your deficiencies for a while (sometimes forever, unfortunately, for some things) but at least get you started back into making some of these things for yourself. Because if it is celiac you are having to take more supplements than otherwise because you are continuing the malabsorption of these nutrients rather than restoring absorption. Just tell him you want the celiac testing now, rather than later. Certainly you have enough celiac signs to warrant the testing. :)

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I think low testosterone can be found in men with hypothyroidism, too... (if you're still having hypo symptoms it could throw off the hormones, regardless of the meds). There is a very strong link between Hashimoto's hypothyroidism and celiac as well.

I agree with mushroom: I would encourage your doctor to run the tests now. You have enough symptoms that raise red flags for celiac. The commonly accepted full panel of celiac tests consists of:

EMA IGA

tTG IGA & tTG IGG

DGP IGA & DPG IGG

Total serum IGA

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........... glucose levels seem to be slowly rising, ........ monitor the Testosterone, ...

How high is it? The body uses testosterone to help break down glucose. A shortage can lead to diabetes. I'm 68/male and my last bloodwork (Nov,2012) resulted in a glucose level of 108 mg/dL( lab range:65-99). Very hard to lower it without a Rx. Went sugarless but my PCP won't authorize a Testosterone test unless I declare ED via a urologist.

Make progress, become well and stay well.

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Everyone gave you great advice, so I won't repeat it. ;)

I do want to add that you might consider getting your adrenal gland checked out. Untreated autoimmune disease (or undertreated Hashi's) can do a real number on your adrenal, which controls many of the hormones in your body (stress and sex hormones). You might want to have it checked.

Your hypothyroidism sounds like it's not being treated well. Many with Hashimoto's (most common cause of hypothyroidism) find they feel best when their:

TSH is close to a 1

Free T4 and Free T3 are in the 50-75% portion of the normal reference range for that lab

I have hypothyroidism too, and I can honestly say that if I allowed my doctor to declare me normal based solely on my TSH (as he seems to want to do), I would NEVER see my symptoms improve. You might want to have your thyroid rechecked to see if you need more T4 (to get TSH near a 1), and possibly add some T3 (cytomel or similar) if your FT3 stays too low.

Good luck.

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Hi Micheal,

I can't say I have a whole lot of knowledge in the area of celiac and men's hormones. I do believe it can be related though. There have been quite a few posts by females concerning problems with pregnancies and conception etc. So it seems reasonable to assume hormonal issues and celiac and men might have a connection. Ah heck, why not?

I agree, tell the doctor to do the celiac disease tests now or go to a different doctor who will do them. Your body is not a play thing for him to experiment on. :angry:

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I have a thought for you. My Hubs has low t and does testosterone injections but he also has Addison's Disease, which is an autoimmune adrenal deficiency. In his case his adrenals have almost died. He has to take steroids daily or he will go into adrenaline shock and could die without immediate attention, we carry an emergency injection kit always.

There are different levels of adrenal deficiencies and Doctors rarely do a blood test for it. You may want to ask your doctor about this. There is a blood test specifically for Addison's.

I hope you figure all this out and, as suggested, get those vitamin and mineral levels checked.

Colleen

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Thanks so much for the responses. I've just requested that my doc add the Celiac panel to some lab work I'm having done next week, hopefully he'll agree. I've been curious about Addison's as well, so I may ask to have some of the adrenal tests done soon.

As for Thyroid, my TSH level is good while I'm taking the medication (around 1.0), but haven't noticed much improvement in symptoms. So many symptoms overlap with other potential causes-- particularly my main complaints of fatigue, brain fog, poor memory, and soreness, each of which can be attributed to my thyroid, testosterone, Vit D, and VIT B-12 deficiencies. More importantly, after treatment for each of those things, my labs are supposedly normal now but I don't feel any better (except for improved libido, which really wasn't even one of my concerns).

At any rate, I will be going gluten free regardless after I get the Celiac panel done.

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Thanks so much for the responses. I've just requested that my doc add the Celiac panel to some lab work I'm having done next week, hopefully he'll agree. I've been curious about Addison's as well, so I may ask to have some of the adrenal tests done soon.

As for Thyroid, my TSH level is good while I'm taking the medication (around 1.0), but haven't noticed much improvement in symptoms. So many symptoms overlap with other potential causes-- particularly my main complaints of fatigue, brain fog, poor memory, and soreness, each of which can be attributed to my thyroid, testosterone, Vit D, and VIT B-12 deficiencies. More importantly, after treatment for each of those things, my labs are supposedly normal now but I don't feel any better (except for improved libido, which really wasn't even one of my concerns).

At any rate, I will be going gluten free regardless after I get the Celiac panel done.

Are you free T4s and Free T3s in the upper end of the normal reference range? I've heard it said many times that people don't feel right until their Free Ts are in the 50-75% range regardless of what the TSH says. Remember, your TSH is just what your pituitary thinks of the situation after being told what to do by another hormone (TSI ?) and another gland.

I would check your Free T's on your next visit to the doc to see if they are low.

I know many doctors claim that we don't need a T3 hormone supplement but in my opinion, if we don't need it, why does the bosy make it? KWIM? it could be something to consider.

Good luck with the gluten-free diet!

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And add a reverse t3 to that panel....

And find a doctor to work with you on making you FEEL better, not look good on a lab sheet. There's a definite difference when it comes to thyroid disease.

And must I state the obvious??? If you have Celiac it won't matter how many supplaments that doc tosses as you...you won't absorb them like you should. Heck, may take years even off gluten for a Celiac. Ugh, the stupidity of some MD's.

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Are you free T4s and Free T3s in the upper end of the normal reference range? I've heard it said many times that people don't feel right until their Free Ts are in the 50-75% range regardless of what the TSH says. Remember, your TSH is just what your pituitary thinks of the situation after being told what to do by another hormone (TSI ?) and another gland.

I would check your Free T's on your next visit to the doc to see if they are low.

I know many doctors claim that we don't need a T3 hormone supplement but in my opinion, if we don't need it, why does the bosy make it? KWIM? it could be something to consider.

Good luck with the gluten-free diet!

Here are my most recent TSH, T3 & T4 results:

TSH: 1.05 UIU/ML (0.35-4.94)

Free T3: 2.84 pg/mL (1.71-3.71)

Free T4: 1.14 ng/dL (0.70-1.48)

Seem like they're all right about where they should be?

Good news-- Doc agreed to add the Celiac panel to my labs this week, so I should have results early next week.

I do have a question-- assuming the tests show a strong possibility of Celiac, how necessary is it to go the next step and get the biopsy? Seems to be like if the tests show that Celiac is likely, why not just work under the assumption of a diagnosis and go Gluten free? Apart from giving close to 100% certainly, is there any other benefit of getting the biopsy?

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How high is it? The body uses testosterone to help break down glucose. A shortage can lead to diabetes. I'm 68/male and my last bloodwork (Nov,2012) resulted in a glucose level of 108 mg/dL( lab range:65-99). Very hard to lower it without a Rx. Went sugarless but my PCP won't authorize a Testosterone test unless I declare ED via a urologist.

I've had two blood Glucose leves over 105, the last one was 108 just like yours. Interesting to hear about the Test. connection. Apart from any connection with breaking down glucose, Testosterone is so vital to a man's health and sense of well being that I feel any man deserves to be tested if they have any of the symptoms of low testosterone. ED is just one, but it shouldn't be the determining factor to test for low test. as your doctor suggests. I never had any problems with ED despite having extremely low Test. (160 ; range 260 -1080ng/dl). I think some doctors shy away from treating it because they don't want to associated with all the "Men's Vitality" clinics that have popped up promising the fountain of youth with Testosterone replacement. There's some great (& reputable) information at the following link. I always find it helpful to talk to my doctor armed with medicial literature, publications from the CDC, etc. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2948422/

But I also suspect that any doctor who is apprehensive about doing basic hormonal testing on a 68 year old male who requests it probably won't be helpful or effective with treating any deficiencies that may be found. You may want to consider looking around for another doctor who take men's health concerns seriously.

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Hey, that's great that he's running the celiac panel for you.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

If he demurs at running all of them, at least insist on the last four :P

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Here are my most recent TSH, T3 & T4 results:

TSH: 1.05 UIU/ML (0.35-4.94)

Free T3: 2.84 pg/mL (1.71-3.71)

Free T4: 1.14 ng/dL (0.70-1.48)

Seem like they're all right about where they should be?

Good news-- Doc agreed to add the Celiac panel to my labs this week, so I should have results early next week.

I do have a question-- assuming the tests show a strong possibility of Celiac, how necessary is it to go the next step and get the biopsy? Seems to be like if the tests show that Celiac is likely, why not just work under the assumption of a diagnosis and go Gluten free? Apart from giving close to 100% certainly, is there any other benefit of getting the biopsy?

Your thyroid labs do look good... I wish mine looked that good. LOL

Good luck with the celiac tests. Keep eating gluten until you are done.

I just had the blood work (positive ttg IgA and EMA IgA) and chose not to do the biopsy. Two positive tests was clear enough for me. Many people like to have a biopsy to confirm "iffy" test results, to compare back to in the future, or to look for other suspected problems. Some doctors won't give you a celiac diagnosis without the "gold standard" biopsy, but in the end it really is up to you to decide what procedures you are comfortable with or feel are needed.

I also wanted to ask if you've had your adrenal checked out yet. If it's off kilter it can affect sex and stress hormones.

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.......... information at the following link. I always find it helpful to talk to my doctor armed with medicial literature, publications from the CDC, etc. http://www.ncbi.nlm....les/PMC2948422/

Thanks for the link, Mike. Good food (gluten free of course) for debate at my next appointment with PCP on Feb 28. He will be enlightened in the ways of a Celiac.

We're new to each other (since jan, 2012) and want to give him a chance.

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 Just got my results...Hopefully my copy & paste job below will be readable. I'd definitely appreciate any help with interpreting these. Looks like I have a STRONG POSITIVE on ANTIGLIADIN ABS, IGG but negative on everything else. The BOLDED results are my doing to make them stand out.

 

 

ANTIGLIADIN ABS, IGA         Moderate to Strong Positive >30 ()

ANTIGLIADIN ABS, IGA         Negative 0 - 19 ()

ANTIGLIADIN ABS, IGA         Weak Positive 20 - 30 ()

ANTIGLIADIN ABS, IGA         (NOTE) ()

ANTIGLIADIN ABS, IGA       3 units (0-19)

ANTIGLIADIN ABS, IGG         Moderate to Strong Positive >30 ()

ANTIGLIADIN ABS, IGG         Negative 0 - 19 ()

ANTIGLIADIN ABS, IGG         Weak Positive 20 - 30 ()

ANTIGLIADIN ABS, IGG         (NOTE) ()

ANTIGLIADIN ABS, IGG       31 units (0-19)

ENDOMYSIAL AB IGA          Negative ()

ENDOMYSIAL AB IGA           PERFORMED AT LABCORP BURLINGTON ()

ENDOMYSIAL AB IGA           Reference range: Negative ()

IGA QUANT                           172 mg/dL (91-414)

T-TRANSGLUT (TTG) IGG      Negative 0 - 5 ()

T-TRANSGLUT (TTG) IGG      Positive >9 ()

T-TRANSGLUT (TTG) IGG      Weak Positive 6 - 9 ()

T-TRANSGLUT (TTG) IGG      (NOTE) ()

T-TRANSGLUT (TTG) IGG     <2 U/mL (0-5)

T-TRANSGLUT(TTG) IGA       Negative 0 - 3 ()

T-TRANSGLUT(TTG) IGA       Positive >10 ()

T-TRANSGLUT(TTG) IGA       Weak Positive 4 - 10 ()

T-TRANSGLUT(TTG) IGA       (NOTE) ()

T-TRANSGLUT(TTG) IGA      <2 U/mL (0-3)

T-TRANSGLUT(TTG) IGA       as the endomysial antigen. Studies have demonstr- ()

T-TRANSGLUT(TTG) IGA       ated that endomysial IgA antibodies have over 99% ()

T-TRANSGLUT(TTG) IGA       specificity for gluten sensitive enteropathy. ()

T-TRANSGLUT(TTG) IGA       Tissue Transglutaminase (tTG) has been identified ()


 

 

 

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So from the research I've done, it seems as though my lab results suggest that Celiac isn't likely.  However, what do I make of the elevated ANTIGLIADIN ABS, IGG? Could that still suggest a Gluten sensitivity?  Any other autoimmune tests I should consider?

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