Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Concerns About Addison's

Silliest of Yaks

Recommended Posts

Silliest of Yaks Rookie
Silliest of Yaks
Posted

Anyone else been worried about Addison's? I'm not looking for formal medical advice, more trying to figure out how my experience matches others Celiacs'...

I just learned I have a family history of Addison's Disease in a probably-celiac relative. I read some basic info online, and see myself in the symptoms. I can't help but feel that something is still off-base, but that could be anything, and I am wary of self-diagnosing or letting my imagination run wild. I have so many health "quirks" it's hard to know what to make of them...

My basis of concern:

1) Family history - it's only a great-grandparent, but the same one who probably gave me Celiac Disease. I know there's a poorly understood connection between the two at this point.

2) I can't stand up too quickly without falling right back down - and getting lightheaded, seeing stars, sometimes even an odd "taste" in my mouth (but only for seconds). This started when I was about 13. I'm 25 now.

3) I crave salt. When I eat salty foods, I can't get enough or them. I know I have more of it than is recommended on nutrition labels, but my blood test still showed my sodium levels to be slightly low, and my blood pressure runs low anyway. But I'm sure plenty of healthy people are the same way.

4) Hyperpigmentation - my scars don't heal like they used to. They tend to stay dark and bruise-colored. Little injuries (scratches and scrapes) leave lasting marks. This started in early adulthood, but has been especially pronounced the past 2 years. I also have noticed pigmentation changes on my face (the skin around the sides of my nose and upper lip are a little bit darker and reddish/orangish - it's not really obvious to anyone else, but it bugs me. I don't look very youthful for a 25-year-old.) Then again, my dad gets dark scars; he's not from the Addison's side of the family but is diabetic. Don't know what to make of that...

5) I can be pretty low energy and irritable, even 8 months after the diet change. I can be animated at certain times, but stress wears me down like nobody's business. I know this could be attributed to Celiac disease, and I do have ADHD and recurrent depression which complicates the emotional symptoms.

6) I am very prone to fungal infections of the skin and nails (and mouth). I read about a connection between this and a form of Addison's, but it seems like many Celiacs on the board have this problem anyway.

I want to bring it up with my doctor, but I feel like I've been a very obnoxious patient and I'm worried about my credibility. I've had MRIs, EEGs, bone density scans, and god knows how much bloodwork since my Celiac diagnosis last spring, with nothing unusual turning up. I've come in with lists of health problems, quirks, and changes when I was having so many neurological problems I had to go on disability. I used the after-hours hotline 3 times in a 3-month period (though for very good reason each time). I'm just worried that I am coming off as a hypochondriac, and/or downright acting like one... can someone please offer me a reality check? Should I give it some time before bringing it up with my doctor? I plan to at least let her know about the family history at my upcoming physical, but I feel like I don't know what's off-base anymore. Years of being sick without diagnosis has left me a bit distrustful of modern medicine and the diagnostic process... I'm sure a lot of you know how I feel!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


linuxprincess Rookie
linuxprincess
Posted

Hey!

Welcome firstly.

Secondly - Yes Addison's can be a result of untreated Celiac's. Doctors do not know a lot about either disease and are slow to test everything out that can determine the issues.

I've got the same scarring/low sodium blood/ high sodium intake issues as you.

I'll respond to your numbers as that's an easy way to do it for me:

1- my father's had undiagnosed celiac's, but diagnosed addison's. I begged and begged for him to either be tested for celiac's or be put on a gluten free diet, but no one listened. They are related.

2 - This can be casued from lack of nutrition from your small intestine not absorbing nutrients properly. Your villi lay down and are unable to absorb nutrients when you are a Celiac that eats gluten. I used to pass out on an almost daily basis no matter how much I ate. I was always so skinny and people would think I had an eating disorder because of the issues. I passed out in public once and when I got to the hospital, the nurses and doctors kept asking if I had eating "issues".

4 - I've got the same hyperpigmentation of scars, but not of anything else. Doc says it's from lack of hydration which can be a result of the damaged small intestine having trouble absorbing all the water.

As for some of the other symptoms you're experiencing, depression, irritabliity, fungal infections, the like - I would advise a huge change in diet. Get back to whole foods - brown rice over bleached white rice. Frozen fruits and veggies. Try to eat as little from a box as possible. Avoid as many processed foods as possible. Try a lifestyle change and see if that helps clear your mind and body out a bit before you go back to the doctor. I used to feel the same way about my symptoms that I just quit bringing them up.

Maybe try visiting a nutritionist to get a better scope on how to change up your diet. I was on some pretty serious depression meds and had numerous other issues before I went gluten free. Now that I realize that dairy and iodine are also affecting me, I changed my diet to eat as low off the food chain as possible and have never felt better. Lots of veggies, fruits, eggs, raw nuts and nut butters, beans, lentils, rice and the like and I've seen such a huge change in not only the way I feel, but my personality as well. I'm off the meds, I hardly get PMS anymore, headaches that I would get daily have disappeared, the list goes on.

I really wish you luck in this! I know it can be hard.

Hope this helped a little.

-Patricia

Jestgar Rising Star
Jestgar
Posted
As for some of the other symptoms you're experiencing, depression, irritabliity, fungal infections, the like - I would advise a huge change in diet. Get back to whole foods - brown rice over bleached white rice. Frozen fruits and veggies. Try to eat as little from a box as possible. Avoid as many processed foods as possible. Try a lifestyle change and see if that helps clear your mind and body out a bit before you go back to the doctor.

I agree with this. It also gives you ammo for the doc in case it doesn't help: "I completely changed my diet to all this healthy food and it hasn't changed these symptoms. Would do you think I should do?"

Silliest of Yaks Rookie
Silliest of Yaks
Posted
  • Author

Thank you for helping me balance my perspective a little. There are a lot of other reasons for me to have those trademark symptoms of course, but due to the celiac connection and family history, it's probably smart to bring it up with my doctor at the right time.

I eat pretty healthfully in general, and didn't have the usual nutritional deficiencies post-diagnosis, but nutrition is a good point. I'm a bit of a foodie and don't like things with ingredients I can't pronounce, but minimally processed doesn't always mean "healthy and balanced" - I could be better about getting my 5-a-day. Sometimes I probably get frustrated without some of my old fall-back foods (I'm having trouble with soy and dairy of top of gluten) and go after other cravings to fill in the gaps for food I miss.

This is a big and ongoing adjustment, isn't it?

georgie Enthusiast
georgie
Posted

I have Addisons - took me over 20 years to be diagnosed as my adrenal failure was gradual and confusing. Can you ask your Endo for some more tests - like the ACTH Stim Test , and blood tests for the Addisons antibodies ? AD is very rare - but more common than the stats say. I believe there are many borderline Addisonians walking around that don't even know they have it yet.

This Assoc has great info online. Open Original Shared Link

Unfortunately, the slowly progressive chronic symptoms are usually missed or ignored until a sudden event like a flu virus, an accident, or the need for surgery suddenly precipitates a dramatic change for the worse because of the deficient response from the adrenals to one of these stresses. This is referred to as an Addisonian crisis and is a medical emergency.

Considering your history and symptoms it may be a good idea to check this out a bit more.

byebyegluten Newbie
byebyegluten
Posted

i was tested for addison's this summer following what my doctor thought was an addisonion crisis, and the testing seemed to be quite simple. i know it's difficult to continuously go in complaining, but from what i understood it was mostly a blood test that could help diagnose it, so that shouldn't be a major concern for your doctor to do. if it helps, i went straight to an endocrinologist, as that is their specialty- you could always go see one instead of your gp, making it a little easier. good luck!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.