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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.

Low Testosterone, Hypothyroid And Adrenal Issues
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32 posts in this topic

I'm 26 and I've had problems with deoression, indigestion, low testosterone, hypothyroidism and poor functioning adrenals (although good enough to be considered "normal" by doctors) for about ten years. My brother has Celiac but I was told by doctors that eating gluten-free wouldn't help since I tested negative for Celiac several times. I was stupid enough to follow this advice for ten years, but about a month ago, I started eating gluten-free and recently noticed an improvement with digestion and energy levels. I'm no longer constipated, no excessive flatulence and my energy level has gone up. However, I still have low testosterone, low cortisol and hypothyroid symptoms (although I tested negative for Hashimoto's).

Now, here are a few things I've been thinking about:

1. Could non-Celiac gluten sensitivty be the cause of all of these problems?

2. If so, how much time should I give it to see if testosterone, thyroid and cortisol levels improve?

3. Assuming damage has been done to my body every single time I've eaten gluten for the last ten years, is there any chance at all my body will be able to heal?

I would really like to avoid having to go on any kind of medication for the rest of my life but the possibility is obviously there since it might be too late to reverse all this, owing to my own stupidity of listening to doctors and not trying out a gluten-free diet long enough to notice a difference. I did try it out for a couple of weeks now and then but when I didn't notice a difference immediately I figured my doctors were right. I feel so incredibly stupid...

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Some of us just don't show up in blood tests. If your tests were 10 years ago then they might be positive by now also. However you don't need a doctors permission to eat gluten free. There is a good chance that the problems you are experiencing, if they are related to undiagnosed celiac, will resolve on the diet. You have nothing to lose by going strictly gluten free for at least a few months to see if things improve. If you don't plan on getting retested do just give the diet a good strict try. If you want more testing then stay on gluten until your testing is finished and then go gluten free no matter what the results.

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Now, here are a few things I've been thinking about:

1. Could non-Celiac gluten sensitivty be the cause of all of these problems?

2. If so, how much time should I give it to see if testosterone, thyroid and cortisol levels improve?

3. Assuming damage has been done to my body every single time I've eaten gluten for the last ten years, is there any chance at all my body will be able to heal?

Welcome. No sense crying over spilled milk! You are not stupid; we are raised to listen to doctors.

1. Yes.

2. A few months of eating strictly gluten free.

3. Yes, you may very well heal. A lot of folks with thyroid problems improve off gluten and if one part of your endocrine system straightens itself out, sometimes the rest follows.

By the way, you're not on a cholesterol-lowering drug are you? Those can cause low testosterone.

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Some of us just don't show up in blood tests. If your tests were 10 years ago then they might be positive by now also. However you don't need a doctors permission to eat gluten free. There is a good chance that the problems you are experiencing, if they are related to undiagnosed celiac, will resolve on the diet. You have nothing to lose by going strictly gluten free for at least a few months to see if things improve. If you don't plan on getting retested do just give the diet a good strict try. If you want more testing then stay on gluten until your testing is finished and then go gluten free no matter what the results.

Ok, thanks for the info. I was a bit unclear by the way - I was tested ten years ago and also just recently and I was negative both times. Either way, I am definitely continuing the gluten-free diet even if my endocrine problems don't resolve, simply because of how much better digestion I get.

Welcome. No sense crying over spilled milk! You are not stupid; we are raised to listen to doctors.

1. Yes.

2. A few months of eating strictly gluten free.

3. Yes, you may very well heal. A lot of folks with thyroid problems improve off gluten and if one part of your endocrine system straightens itself out, sometimes the rest follows.

By the way, you're not on a cholesterol-lowering drug are you? Those can cause low testosterone.

Thanks for the encouragement! I'll give it a few months and see what happens. It's difficult though since I sometimes hear it might take up to a year before endocrine problems resolve, if ever... What's worse is that most doctors don't have a clue themselves. Either way, I'm sticking to gluten-free no matter what happens.

Nope, I'm not on any cholesterol-lowering drugs, thank god!

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Welcome to the forum of stupid people with gluten. Many, if not most, people have had false starts with gluten. It is complicated and hard for the combined efforts of docs and patients to unravel its confusing symptoms and all the associated disorders.

I am 53 yrs old and my testosterone and DHEA levels have probably dropped (having them tested now), demostrated by loss of libido and impotence. Aftr a few when I get my diet to work, its recovers. I have had health issues for around 20 years, and after dealing quite efectively with dust mite allergy, food issues became prominent around 4 years ago. I suspect my health issues of 20 years link back to gluten as the rot cause. Given your age you should recover faster and more completely that someone of my age.

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Welcome to the forum of stupid people with gluten. Many, if not most, people have had false starts with gluten. It is complicated and hard for the combined efforts of docs and patients to unravel its confusing symptoms and all the associated disorders.

I am 53 yrs old and my testosterone and DHEA levels have probably dropped (having them tested now), demostrated by loss of libido and impotence. Aftr a few when I get my diet to work, its recovers. I have had health issues for around 20 years, and after dealing quite efectively with dust mite allergy, food issues became prominent around 4 years ago. I suspect my health issues of 20 years link back to gluten as the rot cause. Given your age you should recover faster and more completely that someone of my age.

Sorry if I came across as insulting anyone else on this board by stating that I feel stupid for not trying out a gluten-free diet long enough. I really didn't mean that!

Anyway, chances of recovery do sound promising assuming they all stem from the gluten problem. I've decided to wait a full year to see if my endocrine issues resolve, before going on any kind of medication (I've been offered Levythyroxine now by my doc but I've declined so far). I'll obviously keep on investigating other areas as well in the meantime, but I think 12 months is a good cut-off point for when I should start seeing improvements in lab values if gluten actually is the root cause.

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My latest thing to help my thyroid is switching to bottled water. My water district fluoridates the water and apparently fluoride is bad for some people's thyroids and you can get enough to have trouble if you drink tap water. I've also learned that if you're hypothyroid your adrenals will not work well either.

This is an interesting read.

http://thyroid.about.com/od/drsrichkarileeshames/a/fluoridechange.htm

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My latest thing to help my thyroid is switching to bottled water. My water district fluoridates the water and apparently fluoride is bad for some people's thyroids and you can get enough to have trouble if you drink tap water. I've also learned that if you're hypothyroid your adrenals will not work well either.

This is an interesting read.

http://thyroid.about.com/od/drsrichkarileeshames/a/fluoridechange.htm

Thank you, I'll take a look at that.

Regarding my possible recovery: I think I will try to get a biopsy and ultrasound of my thyroid to see what kind of damage has been done. I did test negative for Hashimoto's but one never knows with lab errors etc and considering I've had this for over ten years, my thyroid gland could've been chewed away ages ago... If so, I would know for sure that there's no point waiting for a recovery just by going gluten-free.

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Here are some of the results from the latest blood test I had from the 16:th of June. I thought I'd post this as a starting point to compare with in a few months to see if there's any improvement from going gluten-free. I've been able to figure out that hormones are out of whack (low testosterone, low cortisol, low thyroid) and that blood is weak, albeit not terrible, but if anyone spots anything else I should investigate, please let me know!

TSH: 2.82 mU/L [0.2-4.00]

Hemoglobin: 141 g/L [134-170]

Thrombocyte count: 141 [145-348]

White blood cell count: 4.1 [3.5-8.8]

Bilirubin: 31 mcmol/L [<26]

AST: 0.76 [<0.76]

Iron: 13 mcmol/L [9-34]

TIBC: 59 mcmol/L [47-80]

Iron saturation: 0.22 [0.15-0.60]

Ferritin: 83 mcg/L [30-200]

Cortisol: 270 nmol/L

Testosterone: 9.2 nmol/L

fT4: 13 pmol/L [9-22]

fT3: 3.2 pmol/L [2.5-5.6]

TPO antibodies: <0.5 [<5.6]

TR antibodies: <0.9 [<1.0]

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Things aren't too bad!

You can't judge cortisol from a single blood test like you can thyroid or testosterone unless yours is very, very low. (You didn't post the reference range but it doesn't look too far out of whack to me.) That TSH of 2.8 could have you feeling pretty rotten, and if you're hypothyroid your adrenals won't work well either. It's nice that the Hashimoto's tests are negative. Low testosterone can definitely be caused by celaic - it's thought to be a result of poor nutrition from malabsorption.

Overall it looks like you're not absorbing nutrients. I would wonder about B12, D, and B6. Lack of iodine will slow down your thyroid, and it looks like you don't have a lot of iron around either. You could consider adding a multivitamin/mineral. I was was sick for many years with gluten intolerance or celiac (never tested) and I have to take a lot of supplements to feel well. You need a good supplement - One-A-Day or Centrum won't cut it for us because cheap forms of minerals are harder to absorb. Consider something like Solgar Omnium or VM2000, or Metagenics BX Essentials. BX Essentials looks really nice because it's supposed to be easy to absorb. Also take some good, mercury-free fish oil.

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Things aren't too bad!

You can't judge cortisol from a single blood test like you can thyroid or testosterone unless yours is very, very low. (You didn't post the reference range but it doesn't look too far out of whack to me.) That TSH of 2.8 could have you feeling pretty rotten, and if you're hypothyroid your adrenals won't work well either. It's nice that the Hashimoto's tests are negative. Low testosterone can definitely be caused by celaic - it's thought to be a result of poor nutrition from malabsorption.

Overall it looks like you're not absorbing nutrients. I would wonder about B12, D, and B6. Lack of iodine will slow down your thyroid, and it looks like you don't have a lot of iron around either. You could consider adding a multivitamin/mineral. I was was sick for many years with gluten intolerance or celiac (never tested) and I have to take a lot of supplements to feel well. You need a good supplement - One-A-Day or Centrum won't cut it for us because cheap forms of minerals are harder to absorb. Consider something like Solgar Omnium or VM2000, or Metagenics BX Essentials. BX Essentials looks really nice because it's supposed to be easy to absorb. Also take some good, mercury-free fish oil.

1. Reference ranges were missing on a couple of those tests and cortisol was one of them. A bit weird... A value of 270 nmol/L is just below 10 mcg/dL, which is very low I think. It seems to fit in with the theory that hypothyroidism causes low adrenal function (or the other way around).

2. TSH has risen a bit since I started iodine supplementation which is to be expected from what I've read.

3. I agree there's some kind of malabsorption issue going on. I was eating a lot of iron-rich foods for a couple of months before this blood test (but NOT gluten-free) and levels haven't changed at all... Let's just hope gluten is the culprit.

4. In March, B12 was 355 g/L [180-700] and Vit D was 20 ng/mL [20-72] but I've been able to increase them to optimal levels with supplements.

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I was going to suggest you make sure you are using iodized salt, but I see you are taking a supplement already. It is possible to get too much iodine so don't overdo it. Natural sea salt is not a good source of iodine, and neither is garlic salt.

Another thing you might find helpful is to research goitrogens, Goitrogens are foods that inhibit the thyroid's ability to use iodine and make thyroid hormones.

List of goitrogens on Wiki

There is quite a long list of foods to avoid, and a short list to add. Avocadoes are good for your thyroid. Soy is a goitrogen and should be avoided.

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I was going to suggest you make sure you are using iodized salt, but I see you are taking a supplement already. It is possible to get too much iodine so don't overdo it. Natural sea salt is not a good source of iodine, and neither is garlic salt.

Another thing you might find helpful is to research goitrogens, Goitrogens are foods that inhibit the thyroid's ability to use iodine and make thyroid hormones.

List of goitrogens on Wiki

There is quite a long list of foods to avoid, and a short list to add. Avocadoes are good for your thyroid. Soy is a goitrogen and should be avoided.

Ok, thanks for the info. What do you think about the possibility of gluten being the root cause of all this? For me it would be nice but it sounds almost too "good" to be true. On the other hand, I've had an MRI which showed no tumor, checked for intestinal pathogens and found nothing, chest X-ray was ok and thyroid antibodies are negative.

I've got three things left: thyroid biopsy, abdomen ultrasound (liver,m adrenals etc) and a sleep study. Provided there are no anomalies there, I'm completely out of ideas as far as root causes go besides gluten...

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Yes, it's possible gluten is the root cause, especially with celiac in your family. Malabsorption and autoimmunity can really make you sick. It takes some time for it to work, so give yourself a few months eating strictly gluten-free.

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Ok, let's hope so. In the meantime, I'll post the results from the biopsy, ultrasound etc as soon as I get them!

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I forgot to ask: have you ever heard of anyone having non-Hashimoto's thyroid problems which resolve on a gluten-free diet? The reason I'm asking is because Hashimoto's seems to be the case in the celiac thyroid connection but from the blood tests, it looks like I don't have Hashi's. The reason I'm having a biopsy is to find out whether or not I have some kind of inflammation of the thyroid. If that's the case, I'll have a bit more to work with and there'd be less speculation involved. However, whether it's Hashi's, non-Hashi's or something else, I guess I should still try going gluten-free, correct nutritional deficiencies and hope for the best, eh?

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I think gluten is your most likely culprit, since celiac runs in your family. People with celiac also tend to get other auto-immune diseases, especially if they don't follow the diet. It might eb interesting for you to make list of the other auto-immune diseases in your family. It might lead you to a guess about which side the celiac genes are on. If they aren't o both that is. If you search on "celiac associated condition" or "celiac related condition" you can find lists of the other auto-immune diseases that are more common in celiacs.

It sure sounds like celiac could be the problem to me.

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As I said, I hope gluten is the culprit as that would make it easy for me to fix everything, but my point was that there is no indication that my problems are auto-immune related, or is there? I mean, I tested negative for celiac, I have no thyroid antibodies (TPO, TR, TG) and diabetes test was negative. The only disease (of any kind) in the family I know of is one case of celiac which my brother has, but nothing else that I know of. Then again, celiac and thyroid problems are vastly underdiagnosed, so there might be hidden cases in my family...

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After reading on Wikipedia about Celiac disease I came across the miscellaneous section which covers certain related conditions. I think I have four of the six conditions listed:

IgA deficiency - 0.9 g/L [0,9-4,5] in one test and 0.83 g/L [0.88-4.5] in another

Infertility - semen analysis showed low motility and sperm count

Hyposplenism - unsure about this one, but my thrombocyte count is low

Abnormal liver function tests - bilirubin has always been high and AST has occasionally been elevated, haptoglobin was abnormal in one test as well, 1 mg/dL (2.4-19)

http://en.wikipedia.org/wiki/Celiac_disease#Miscellaneous

This is in addition to all the other symptoms I've mentioned in previous posts. Now, the big question is whether or not this would be applicable in my case...

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I had an abdomen ultrasound today and the preliminary results were ok - nothing out of the ordinary. I specifically asked them to image my adrenals to make sure they look ok which they apparently did. I hope ultrasound images are a lot easier for docs to interpret than blood tests as I've had my share of you're-in-range-there's-nothing-wrong-with-you-crap. Up next is another brain MRI (last one was done seven years ago) and thyroid ultrasound.

On a sidenote: how much of an issue would cross-contamination be for someone like me? I just read through the Gluten-For-Beginners-list and was shocked at how careful one needs to be. I've been using the same toaster, collander, frying pan, tupperware etc but I'm going to replace all that today. Assuming I've been cross-contaminated this whole time, I might as well call this day 1 of being gluten-free, not day 70. Damn it!

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Hi Landslide,

CC is a serious issue. Think about how your immune system reacts to germs. Once you become immune to something the germs get killed off by your immune cells. After you are all better your immune system relaxes. But if another germ of the same kind gets in your system the immune system perks up and starts fighting again. It doesn't matter if it is a tiny little microscopic germ, the immune system can't afford to let little things go. If it did we wouldn't last very long.

So, yeah, cc from a toaster or anything is bad news.

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I forgot to ask: have you ever heard of anyone having non-Hashimoto's thyroid problems which resolve on a gluten-free diet? The reason I'm asking is because Hashimoto's seems to be the case in the celiac thyroid connection but from the blood tests, it looks like I don't have Hashi's. The reason I'm having a biopsy is to find out whether or not I have some kind of inflammation of the thyroid. If that's the case, I'll have a bit more to work with and there'd be less speculation involved. However, whether it's Hashi's, non-Hashi's or something else, I guess I should still try going gluten-free, correct nutritional deficiencies and hope for the best, eh?

Sometimes I wonder about malabsorption of iodine or selenium in non-Hashi's hypothyroidism.

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Hi Landslide,

CC is a serious issue. Think about how your immune system reacts to germs. Once you become immune to something the germs get killed off by your immune cells. After you are all better your immune system relaxes. But if another germ of the same kind gets in your system the immune system perks up and starts fighting again. It doesn't matter if it is a tiny little microscopic germ, the immune system can't afford to let little things go. If it did we wouldn't last very long.

So, yeah, cc from a toaster or anything is bad news.

I see, I'm beginning to realise that my gluten-free trial is going to be a lot more difficult than I initally thought. The problem with cross-contamination for me is that I don't have full-blown celiac, so assuming I have gluten sensitivity (which I don't know for sure) and get cross-contaminatied, the symptoms might be very subtle or not noticeable at all except in the form of weak iron, hemoglobin, platelets in blood tests. Working with this amount of unknown factors i.e not knowing if I even have gluten sensitivity and not knowing if I'm being cross-contaminated is really going to be a challenge...

Anyway, I've gotten rid of my plastic colander, toaster, all pots, pans, tupperware and cutting boards. I'm curious about some things though:

1. It should be ok to keep a non-wired, steel colander, provided that I wash it carefully, right?

2. At work, I bring a lunch box and heat it up in the microwave, how can I avoid cross-contamination there? Maybe if I keep the lid on on the lunch box while it's being heated - would that do the trick?

Sometimes I wonder about malabsorption of iodine or selenium in non-Hashi's hypothyroidism.

I think you're on to something. Have you read this study? http://www.scielosp.org/scielo.php?script=sci_arttext&pid=S0021-25712010000400006&lng=en&nrm=iso&tlng=en

It refers to selenium malabsorption in celiac disease so I'm not sure if it would be applicable to non-celiacs, but interesting nonetheless. As far as my own thyroid status is concerned, I'll know more once I've had the ultrasound/biopsy - I believe Hashi's is possible without detectable antibodies in the blood, so we'll see.

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I think you're on to something. Have you read this study? http://www.scielosp.org/scielo.php?script=sci_arttext&pid=S0021-25712010000400006&lng=en&nrm=iso&tlng=en

It refers to selenium malabsorption in celiac disease so I'm not sure if it would be applicable to non-celiacs, but interesting nonetheless. As far as my own thyroid status is concerned, I'll know more once I've had the ultrasound/biopsy - I believe Hashi's is possible without detectable antibodies in the blood, so we'll see.

That is extremely relevant. Gliadin has been shown to trigger overproduction of IL-15 in people with non-celiac gluten intolerance as well as celiacs. It seems to be an innate effect on the immune system, requiring no antibodies at all. Overproduction of IL-15 is the first step in the development of celiac, but in some folks the extra IL-15 seems to be enough to cause malabsorption and some degree of inflammation on its own. If excess IL-15 can cause thyroid inflammation, that may be the link we've been looking for between gluten sensitivity and thyroid disease.

As far as the kitchen, I kept my old aluminum colander, just washing it very carefully. I don't worry about the microwave at work as long as my food is in a dish. I do not use the toaster oven. I'm not sure why you got rid of pots and pans. Were they scratched teflon? Otherwise they wash up fine. Tupperware without scratches is fine too. Agreed cutting boards should go as they're always scratched up. It's also really hard to de-gluten a toaster.

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That is extremely relevant. Gliadin has been shown to trigger overproduction of IL-15 in people with non-celiac gluten intolerance as well as celiacs. It seems to be an innate effect on the immune system, requiring no antibodies at all. Overproduction of IL-15 is the first step in the development of celiac, but in some folks the extra IL-15 seems to be enough to cause malabsorption and some degree of inflammation on its own. If excess IL-15 can cause thyroid inflammation, that may be the link we've been looking for between gluten sensitivity and thyroid disease.

I see, very interesting! The innate immunity you're referring to, I suppose it's the same as Dr Fasano mentions in the link below? "Their immune reactions were different, too [compared to Celiacs]. In the gluten-sensitive group, the response came from innate immunity, a primitive system with which the body sets up barriers to repel invaders."

http://online.wsj.com/article/SB10001424052748704893604576200393522456636.html

As far as the kitchen, I kept my old aluminum colander, just washing it very carefully. I don't worry about the microwave at work as long as my food is in a dish. I do not use the toaster oven. I'm not sure why you got rid of pots and pans. Were they scratched teflon? Otherwise they wash up fine. Tupperware without scratches is fine too. Agreed cutting boards should go as they're always scratched up. It's also really hard to de-gluten a toaster.

Thanks for the info. Yes, pots and pans were all scratched teflon so they had to go, same thing with my tupperware.

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