Celiac Disease And Addison's

Dizzysillyak · June 4, 2010

Hi there ...

Has anyone here looked at this ?

I hadn't looked at this yet and was surprised at how many of the symptoms and treatments for POTS / NMH / OI are the same as the treatments for Addison's disease. I appear to meet the diagnostic criteria for Addison's. I haven't been tested yet though. I know salt loading helps my OI and I need it to keep my bp up. And I know that my DHEA is low. And I have feelings of hypoglycemia every couple of hours at least, that respond to eating a healthy snack and/or sometimes a quick sugar fix.

My doc told me to try taking DHEA so I started taking 5 mg yesterday. So far all I noticed is that I still feel the need to lay down every few hours. But when I do, my body doesn't want to stay there ... lol ... Normally, I feel a huge sense of relief throughout my body when I lay down. GRANTED ... it is way too early to tell how this is going to work. The RDA from my doc was 25 - 50 mg a day too. I'm one of those who sometimes responds to tiny dosages of meds or supplements though ...

It's interesting and a little disappointing that the NIH considers digestive problems common for Addison's yet doesn't mention being tested for celiac disease. I wonder if I googled it, if I'd find a study by the NIH saying that Addison's and celiac disease are linked ...

For those who aren't up on gluten intolerance versus celiac disease, studies are showing that you don't have to have celiac disease to be gluten intolerant or suffer from the autoimmune problems that celiacs are known for ...

http://endocrine.niddk.nih.gov/pubs/addison/addison.htm

Quote:

What do adrenal hormones do?

Cortisol

Cortisol belongs to a class of hormones called glucocorticoids, which affect almost every organ and tissue in the body. Cortisol?s most important job is to help the body respond to stress. Among its many vital tasks, cortisol helps

?maintain blood pressure and cardiovascular function

?slow the immune system?s inflammatory response

?maintain levels of glucose?a form of sugar used for energy?in the blood

?regulate the metabolism of proteins, carbohydrates, and fats

The amount of cortisol produced by the adrenals is precisely balanced. Like many other hormones, cortisol is regulated by the brain?s hypothalamus and the pituitary gland. First, the hypothalamus releases a ?trigger? hormone called corticotropin-releasing hormone (CRH) that signals the pituitary gland. The pituitary responds by sending out ACTH, which in turn stimulates the adrenal glands. The adrenal glands respond by producing cortisol. Completing the cycle, cortisol then signals back to both the pituitary and hypothalamus to decrease these trigger hormones.

The hypothalamus sends CRH to the pituitary, which responds by sending out ACTH. ACTH then causes the adrenals to release cortisol into the bloodstream.

Aldosterone

Aldosterone belongs to a class of hormones called mineralocorticoids, also produced by the adrenal glands. Aldosterone helps maintain blood pressure and water and salt balance in the body by helping the kidneys retain sodium and excrete potassium. When aldosterone production falls too low, the kidneys are not able to regulate water and salt balance, leading to a drop in both blood volume and blood pressure.

From the same article ...

How is adrenal insufficiency treated?
Treatment of adrenal insufficiency involves replacing, or substituting, the hormones that the adrenal glands are not making. Cortisol is replaced with a synthetic glucocorticoid such as hydrocortisone, prednisone, or dexamethasone, taken orally once to three times each day, depending on which medication is chosen. If aldosterone is also deficient, it is replaced with oral doses of a mineralocorticoid, called fludrocortisone acetate (Florinef), taken once or twice a day. Doctors usually advise patients receiving aldosterone replacement therapy to increase their salt intake. Because people with secondary adrenal insufficiency normally maintain aldosterone production, they do not require aldosterone replacement therapy. The doses of each medication are adjusted to meet the needs of the individual.
During an Addisonian crisis, low blood pressure, low blood glucose, and high levels of potassium can be life threatening. Standard therapy involves intravenous injections of glucocorticoids and large volumes of intravenous saline solution with dextrose, a type of sugar. This treatment usually brings rapid improvement. When the patient can take fluids and medications by mouth, the amount of glucocorticoids is decreased until a maintenance dose is reached. If aldosterone is deficient, maintenance therapy also includes oral doses of fludrocortisone acetate.

Article that shows link between celiac disease and Addison's ...

http://jcem.endojournals.org/cgi/content/s.../jc.2007-0960v1

This version published online on June 26, 2007
Journal of Clinical Endocrinology & Metabolism , doi:10.1210/jc.2007-0960
Submitted on April 30, 2007
Accepted on June 18, 2007
Risk of primary adrenal insufficiency in patients with celiac disease
Peter Elfstr?m*, Scott M. Montgomery, Olle K?mpe, Anders Ekbom, and Jonas F. Ludvigsson
Department of Pediatrics, ?rebro University Hospital, Sweden; Clinical Epidemiology Unit, Department of Medicine, Karolinska Institutet, Sweden; Clinical Research Centre, ?rebro University Hospital, Sweden; Department of Medical Sciences, Uppsala University, University Hospital, Uppsala, Sweden; and Harvard School of Public Health, Boston, Massachusetts, United States
* To whom correspondence should be addressed. E-mail: peter.elfstrom@orebroll.se.
Objectives: Earlier research has suggested a positive association between Addison's disease (AD) and celiac disease (CD). We have here investigated the risk of AD in individuals with CD from a general population cohort.
Methods: Through the Swedish national registers we identified 14,366 individuals with a diagnosis of CD (1964-2003) and 70,095 reference individuals matched for age, sex, calendar year and county of residence. We used Cox regression to estimate hazard ratios (HRs) for subsequent AD. Analyses were restricted to individuals with more than one year of follow-up and without AD prior to study entry or within one year after study entry. Conditional logistic regression estimated the odds ratio (OR) for CD in individuals with prior AD.
Results: There was a statistically significantly positive association between CD and subsequent AD (HR = 11.4; 95% CI = 4.4-29.6). This risk increase was seen in both children and adults, and did not change with adjustment for diabetes mellitus or socioeconomic status. When we restricted reference individuals to inpatients, the adjusted HR for AD was 4.6 (95% CI = 1.9-11.4). Individuals with prior AD were at increased risk of CD (OR = 8.6; 95% CI = 3.4-21.8).
Conclusions: This study found a highly increased risk of AD in individuals with CD. This relationship was independent of temporal sequence. We therefore recommend that individuals with AD should be screened for CD. We also suggest an increased awareness of AD in individuals with CD.

Birdlady · June 4, 2010

Hello,

I have adrenal insufficiency, gluten intolerance and POTS. I will go out here on a limb and say that there's probably a good number of people on this forum with what I call "gray area" Addison's disease or adrenal insufficiency. Doctors won't diagnose you with Addison's disease unless you fail a stim test and the problem with that is "failing" a stim test is different depending up which endo you see.

Some endos say that as long as you double or reach a 20 (no matter what baseline you start at ) that you are normal, but that is not true. Not everyone has primary adrenal insufficiency. In secondary AI, your pituitary does not signal enough ACTH to stimulate the adrenals. Therefore during a stim test, you'd have a low cortisol baseline that increases 3X+ at the 60 minute mark. This shows your adrenals were finally given the appropriate amount of ACTH and can produce the appropriate amount of cortisol. Secondary AI needs treated as much as primary AI.

Basically it comes down to the fact that most endos don't even know how to interpret their own tests. If you do go down this route, make sure you get copies of your stim test. They say nearly everyone is normal unless your stim results are really obvious like a 5 to an 8 in 60 minutes and you have a very high ACTH level or tanning on your skin. Here's a great Addison's forum, you can post your results and questions.

I'm not sure if you are a male or female, but I can't take more than 12.5mg of DHEA without getting facial hair, acne etc. 25-50mg would be a large dose for a woman.

Now with all of that said, my POTS has not be cured with hydrocortisone and florinef. The fatigue is better. I can withstand a lot more stress and I am not wiped out for days after a little exercise or a tilt test. My heart rates are still crazy (~160) when I stand up though.

Good luck to you. Some people on that forum I linked were actually misdiagnosed with POTS and were completely cured after treatment! I was not one of those lucky people.

issie · June 5, 2010

Who did you get to help you with you adrenal weakness? Do you take cortisol for it? I've known for years that my adrenals weren't working properly but the regular test, as you said, showed them okay. One doctor did a saliva test years ago and had me do cortisol for awhile. I have to have it before every surgery too. I feel like this would benefit me at the present time too. I have recently realized that I'm having a gluten intolerance. I've started back on the diet. Hoping to feel better soon.

sue1234 · June 5, 2010

I have been reading alot on celiac disease and gluten intolerance. From what I gather, alot of people with celiac disease also have one or more autoimmune diseases, or are prone to getting one. I know that they are really making the connection to type 1 diabetes and celiac.

Being tested for Addison's was one of the first thing one of my endos did when I started with POTS symptoms. My symptoms fit, but I really look more like a person with too much cortisol! I was about 40 lbs. overweight, facial hair increasing and highish b/p. It just seems that there is somewhat of an "Addison aspect" to POTS, as when I get stressed, I feel like fainting(even though I don't). I don't understand that part of POTS except a large drop in cortisol would definitely explain it!

I am one with high gliadin antibodies, but negative biopsy, so thinking maybe i am gluten intolerant.

Dizzysillyak · June 5, 2010

Hello,
I have adrenal insufficiency, gluten intolerance and POTS. I will go out here on a limb and say that there's probably a good number of people on this forum with what I call "gray area" Addison's disease or adrenal insufficiency. Doctors won't diagnose you with Addison's disease unless you fail a stim test and the problem with that is "failing" a stim test is different depending up which endo you see.
Some endos say that as long as you double or reach a 20 (no matter what baseline you start at ) that you are normal, but that is not true. Not everyone has primary adrenal insufficiency. In secondary AI, your pituitary does not signal enough ACTH to stimulate the adrenals. Therefore during a stim test, you'd have a low cortisol baseline that increases 3X+ at the 60 minute mark. This shows your adrenals were finally given the appropriate amount of ACTH and can produce the appropriate amount of cortisol. Secondary AI needs treated as much as primary AI.
Basically it comes down to the fact that most endos don't even know how to interpret their own tests. If you do go down this route, make sure you get copies of your stim test. They say nearly everyone is normal unless your stim results are really obvious like a 5 to an 8 in 60 minutes and you have a very high ACTH level or tanning on your skin. Here's a great Addison's forum, you can post your results and questions.
I'm not sure if you are a male or female, but I can't take more than 12.5mg of DHEA without getting facial hair, acne etc. 25-50mg would be a large dose for a woman.
Now with all of that said, my POTS has not be cured with hydrocortisone and florinef. The fatigue is better. I can withstand a lot more stress and I am not wiped out for days after a little exercise or a tilt test. My heart rates are still crazy (~160) when I stand up though.
Good luck to you. Some people on that forum I linked were actually misdiagnosed with POTS and were completely cured after treatment! I was not one of those lucky people.

Wow ... thanks for the great info .. I'm so excited that I may have stumbled onto something that will help. Sorry to hear that the meds didn't work for you. When I first started looking at adrenal treatments I found articles (Dr. Lam ... I think) that mentioned taking aminos for our adrenals. I was having an adrenal crisis from eating Chex Rice cereal and he / she recommended drinking beef stock because of the aminos in it. Since that worked so well I started taking essential aminos. I've been on Solgar essential aminos for almost a year now. These have stopped my heart from pounding when I lay down so maybe these would help you too.

Also, have you heard of or are you on the Paleo diet ? I just find that I feel better if I stick to whole foods and low carb. A lot of us who are gluten intolerant find that we feel better this way. Otherwise, my glucose levels feel off and I feel shakey. In fact, I found the info on Addison's while looking at hypoglycemia. And the reason I started looking at hypoglycemia again is that lately if I eat a whole apple as opposed to a 1/2 of an apple, I feel shakey.

I've just started to take a look at this so the lingo is still new. I'm seeing my doc on Tuesday and will ask her about all of this. She's an integrative doc so I'm hoping she's up on this. I've got some studying to do myself ... thanks again .. Please keep in touch ... Marcia

PS ... Thanks for the tip on DHEA too. I'll be careful with this. I wouldn't look good with a beard ... lol ...

Birdlady · June 5, 2010

I couldn't handle the treatment I was getting by regular docs, so I went to a hormone replacement doctor. I feel pretty strongly that I would have failed a stim test though. I had some dark pigmentation on my skin and my ACTH was above range too. Yes I am on hydrocortisone and florinef. Currently i am taking 20mg of HC daily split into 3 doses (10, 5, 5) and 1/2 tab of florineff (0.05mg).

If any of you have had stim tests done and were told you were "normal", get a copy of them and look at them yourself!

Dizzysillyak · June 5, 2010

Who did you get to help you with you adrenal weakness? Do you take cortisol for it? I've known for years that my adrenals weren't working properly but the regular test, as you said, showed them okay. One doctor did a saliva test years ago and had me do cortisol for awhile. I have to have it before every surgery too. I feel like this would benefit me at the present time too. I have recently realized that I'm having a gluten intolerance. I've started back on the diet. Hoping to feel better soon.

Hi Issie,

thanks for the info on the regular test ... I see an integrative doc and may end up doing the saliva test too.

Can you believe gluten strikes again ? I can't believe how prevalent this is nowadays. I found out the hard way that foods other than gluten were making my adrenals go wacky too. HFCS is terrible for me. And for some reason, the last time I tried to eat some Rice Chex, my heart was pounding so bad I thought I was going to have to call 911. I guess I just can't handle all the additives anymore ... I feel best on a Paleo / low carb diet.

TC ... Marcia

Dizzysillyak · June 5, 2010

I couldn't handle the treatment I was getting by regular docs, so I went to a hormone replacement doctor. I feel pretty strongly that I would have failed a stim test though. I had some dark pigmentation on my skin and my ACTH was above range too. Yes I am on hydrocortisone and florinef. Currently i am taking 20mg of HC daily split into 3 doses (10, 5, 5) and 1/2 tab of florineff (0.05mg).
If any of you have had stim tests done and were told you were "normal", get a copy of them and look at them yourself!

Hi again ...

When you say that you had some dark pigmentation on your skin, does it matter where it's at ? I have a dark spot on my chest that my dermatologist has biopsied several times and says it's nothing to worry about on his end. It's a little bigger than a quarter. Oh and I've had a few of these on my face ... I was told that the ones on my face were from taking Birth control pills when I was younger.

Dizzysillyak · June 5, 2010

I have been reading alot on celiac disease and gluten intolerance. From what I gather, alot of people with celiac disease also have one or more autoimmune diseases, or are prone to getting one. I know that they are really making the connection to type 1 diabetes and celiac.
Being tested for Addison's was one of the first thing one of my endos did when I started with POTS symptoms. My symptoms fit, but I really look more like a person with too much cortisol! I was about 40 lbs. overweight, facial hair increasing and highish b/p. It just seems that there is somewhat of an "Addison aspect" to POTS, as when I get stressed, I feel like fainting(even though I don't). I don't understand that part of POTS except a large drop in cortisol would definitely explain it!
I am one with high gliadin antibodies, but negative biopsy, so thinking maybe i am gluten intolerant.

Hi Sue,

I think I have a number of autoimmune diseases. I'm know already that I'm positive Thyroid antibodies ...

I wonder if the adrenals can over produce with Addison's as well as under produce. I'm not sure if you know this but a lot of celiacs are overweight. I really don't understand all this yet either though ...

In my celiac support group, we have several members who have high antibodies and a negative biopsy. Their gastroenterologists diagnosed them as celiacs. I've read that the biopsies can miss celiac disease. In fact, mine was negative but my villi were flat and looked like a 4 or 5 on the Marsh scale (scale for villi damage). My biopsy wasn't taken until 17 months post GF though ...

Have you ever looked at www.glutenfreeandbeyond.org ? They have a newbie section and I'm sure that they can explain all this better than I can ...

TC ... Marcia

What a big help you all are ... thanks ...

Birdlady · June 5, 2010

Hi again ...
When you say that you had some dark pigmentation on your skin, does it matter where it's at ? I have a dark spot on my chest that my dermatologist has biopsied several times and says it's nothing to worry about on his end. It's a little bigger than a quarter. Oh and I've had a few of these on my face ... I was told that the ones on my face were from taking Birth control pills when I was younger.

Textbook Addison's makes people develop a very dark tan all over their body as if they were going to a tanning salon every single day. I've heard of some people getting some blotchiness on their face. I personally had pigmentation in my joints. I assume it was from my adrenals, but I really have no way of knowing. The reason you get pigmentation is from an elevated ACTH level which stimulates MSH.

Dizzysillyak · June 5, 2010

Hi again ...
When you say that you had some dark pigmentation on your skin, does it matter where it's at ? I have a dark spot on my chest that my dermatologist has biopsied several times and says it's nothing to worry about on his end. It's a little bigger than a quarter. Oh and I've had a few of these on my face ... I was told that the ones on my face were from taking Birth control pills when I was younger.
Textbook Addison's makes people develop a very dark tan all over their body as if they were going to a tanning salon every single day. I've heard of some people getting some blotchiness on their face. I personally had pigmentation in my joints. I assume it was from my adrenals, but I really have no way of knowing. The reason you get pigmentation is from an elevated ACTH level which stimulates MSH.

Thanks ... I have been laying out in the sun this year and have a pretty good tan. This is my first tan in years because I couldn't handle the sun before. My knees look a little darker than the rest of my body but not by much. I looked closely at my face last night and I have quite a few blotches. These have been there for several years though so they were there before going out in the sun ...

I know I have adrenal problems. I'm one of those who can't even watch scary commercials even without feeling panicky. And anytime I'm in a car accident or something really traumatic like that happens, I automatically get too shakey to function ...

I wonder if there's a link between Addison's and kidney stones. (Brain overload here - lol ) ... I already saw how it could affect the kidneys but I didn't a kidney stone / oxalate connection.

I'm not sure what to make of the reaction I'm getting from the DHEA I started taking. It's making me feel very alert and making me feel like remaining upright .... both unusual for me. I'm not as clear headed as I'd like to be though ... I still managed to fall asleep quickly last night. I was wide awake at sunrise though and I'm not sure if this is from the DHEA or what. I'm going to take another one in a minute and see how I do.

Thanks again ... Marcia

Dizzysillyak · June 5, 2010

BTW. I hope I don't sound like I'm pushing the Paleo diet on anyone. I'm just not a pushy person at all ... It's just that this diet has helped me quite a bit with my everyday symptoms. Trust me, if I could eat breads, pasta and carbs and not feel like my glucose was wacked, I would ...

Maybe if we get this problem fixed I'll be able to handle them better. I see that Addison's / cortisol affects how we process our food ...

TC ... Marcia

sue1234 · June 5, 2010

I've been on Addison's forums and Cushing's forums for roughly four years. I have seen many times that before people were diagnosed, they went through a period where they had bad symptoms but no doctor could figure it out. I even asked some Addison's people what their lives were like before diagnosis. Some of them went downhill in a matter of weeks, but some had symptoms for years until it came to a crisis.

I guess my point is is that maybe cortisol/aldosterone could be playing a role in all this, or just not working correctly when we need it to. Or maybe working too well when we don't need it to!

I avoid the sun/heat, as it makes me feel overly hot and faintish--yet my arms and face look like I've gotten a tan! I have been meaning to ask my endo to check my ACTH.

Dizzysillyak--you said you've been out tanning, but used to not be able to tolerate it. What made you now be able to go out in the sun? I would love to get over this heat intolerance.

I am getting ready to go full gluten-free. From what I read in a doctor's book last night on how bad wheat is for us, a positive gliadin equals gluten intolerance, which brings on the same symptoms as celiac. I can't wait to see what changes happen.

By the way, I had Hashimoto's(thyroid removed) and almost positive Grave's disease, and I take B-12 shots. I started going gray in my 20s, which I've read many times is related to autoimmune. And, I've had high enough ANA that they checked me for MS(negative). So, my body is on high alert all the time, and I can now see that it is probably from gluten.

I was reading on the glutenfreeandbeyond.com that some people are getting relief from their "small fiber neuropathy", something that alot of POTS people are getting diagnosed with here.

Please remember to let me know how you became tolerant of the sun/heat!

sue1234 · June 5, 2010