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

Addison's

beth01

By beth01
in Related Issues & Disorders

Recommended Posts

beth01 Enthusiast
beth01
Posted

I was wondering if there is anyone on here who has Addison's along with Celiac? I have been having a very bad week and Addison's was brought up and I am being sent to see an endo to be tested for it. I have every symptom but the hyperpigmentation. I don't know much about the disease except for what I have read the last day, so I am interested to see if anyone else has more information or experience. Thanks.

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

Celiac.com Sponsor (A8-M):


icelandgirl Proficient
icelandgirl
Posted

I don't know much about it but wanted to send you (((hugs))) and positive thoughts. I hope that you get some answers and that you feel better soon.

nvsmom Community Regular
nvsmom
Posted

I had one doctor who suspected low adrenal function and started treating my for it before testing me for Addison's (dummy).  He started me on fludricortisone for the postural hypotension, and hydrocortisone since I was on the low side of normal and my testosterone was a bit low too.  I sort of wish he hadn't treated me at all because it is really tough to get off steroids and I did not like the side effects, like pre-diabetes.  

 

Do the testing before treating would be my advice.  Steroids are not something to be used lightly.

 

Good luck.  I hope it turns out okay for you.

beth01 Enthusiast
beth01
Posted
  • Author

Thanks you guys. I know Addison's is very rare and I probably don't have it and I'm trying not to freak out but it's hard. I know it's a very manageable disease but a potentially very scary one. My cortisol is a little on the low side of normal but still normal. The soonest they can get me in is December 23rd so my doctor is seeing if she can get me fast tracked in. I am so glad I have her. She openly admitted to me that with the Grave's and Celiac, what's going on now is out of her spectrum. My old doctor probably would have tried to figure it out himself and I would suffer even more. All of my symptoms can either be attributed to either Celiac or Grave's. My TSH is 16, but it was 32 months ago and I didn't feel like this. I have been getting full body muscle spasm/cramps for 4 days now. My shoulder muscles are staying contracted which is causing a horrendous amount of pain. They have me on muscle relaxers, valium, and vicodin and it isn't doing s$#&. I haven't had any stomach involvement except for some nausea so I don't think I got glutened. I'm usually hanging my head in a bucket when I get glutened. I haven't changed any foods or meds, haven't been any where out of my home to eat. My blood pressure has been pretty low lately, generally about 80/50 and that was before all the meds. We are keeping a pretty close eye on it. The only place I have hyperpigmentation is on my scars, but I also don't get a lot of sun, I get nasty rashes if I'm in the sun so I avoid it like the plague. The one symptom that gets me, is the salt craving. My go to foods when I don't feel well has always been salty foods, but lately I am compelled to eat salty foods, almost like an addiction. My sodium is on the low side but they didn't do a urine sodium so they can't correlate the two. They said wait until I see the Endo. I sure hope they can get me in sooner, I can't feel like this much longer. You would think I would be tired from all the meds, but I can't sleep from the pain. No where is comfortable, I spend most of the day pacing. Sorry, I'm whining. And it's funny because I just posted a week ago how much better I was feeling. I jinxed it.

icelandgirl Proficient
icelandgirl
Posted

That sounds bad Beth. I'm so sorry you are going through this. One thing I've done to speed up my appointments is calling regularly to see if they've had any cancelations. I recently had an appointment that was 6 weeks out but got it moved up 3 weeks with calling. Maybe try that?

And what were you thinking sharing your good news! I feel the same. I'd been having a good run recently...told 2 people...wanted to share good...and then have had a rough past week. What's up with that? We should be able to enjoy and share our successes without something bad coming along and slapping us in the face!

Hang in there...I will be thinking of you, hoping you get some help quickly.

cyclinglady Grand Master
cyclinglady
Posted

Your TSH is 16? I assume that if this was not a typo, that you got an increase in thyroid replacement?

nvsmom Community Regular
nvsmom
Posted

I was quite nervous about the addison's too. It's a bit of a scary one.  Your symptoms do sound a LOT like mine did.  I too have celiac and Hashis (I've never swung hyper) as well as one other AI disease. I get muscle cramps (legs) but I also get back spasms that get so tight that I am completely crooked to the side and forward no matter what drugs I tried (accupuncture sometimes helped). Could yours be a back thing?

 

I also had low BP but mine was a bit higher at 90/50.  I never have salt cravings but my urine sodium is high (above normal range) and my serum sodium is at the very low end of normal.

 

I just mention this because I was a similar case and it turned out okay - no addison's.  Try not to worry... I know it is much easier said than done!  LOL In the meantime, document your worries and make sure you know what tests should be done for addison's so you are well educated on the topic when you see the endo.

 

And ditto Cyclinglady, I hope your low thyroid function is being treated. Best wishes.

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

Celiac.com Sponsor (A8-M):


GF Lover Rising Star
GF Lover
Posted

Hi Beth,  Try not to worry about Addison's unless you get a diagnosis.  You may be low in potassium/sodium which will effect your muscles.  If you crave salt, eat it and lots of water to help your muscles.  You will most likely get a blood test for ACTH, potassium/sodium levels and cortisol level.  These tests will determine whether the pituitary is involved along with the adrenal glands.  

 

My husband has had Addison's for over 30 years and it is managed with lifelong medications and is monitored much like the thyroid with regluar blood work to check levels.  There are added concerns with Addison's but can still be managed to some degree.  

 

Let us know how the tests turn out.  If I can answer any other questions you might have, just ask away.

 

Colleen

beth01 Enthusiast
beth01
Posted
  • Author

Yes, I'm being treated for the high TSH. My levels have been all over the place the last year it seems. I think this last blimp is due to the fact that my previous doctor messed with my dosage when he shouldn't have. I took in a list of concerns when I went to the doctor on Monday, even a list of my blood pressures from the last week or so. When I go to the doctor my BP is through the roof, I almost had a panic attack on Monday and would have had I not been on Valium already. I haven't been able to take all the pills they gave me since my BP were dropping a little lower than I am comfortable with at home, and I haven't found the right blend that actually keeps me either comfortable or tolerable to the pain. My doctor messaged me last night to let me know that she spoke with the Endo and based on my chart she feels I can wait until December to be seen but she suggested testing in the mean time. I'm not sure just what or when but I pretty sure she will get back to me today. She has already called me twice this week and messaged three times. Either she's a really awesome doctor and cares for her patients of the hospital is scared lol. Quite the change from the last doctor.

beth01 Enthusiast
beth01
Posted
  • Author

I received a call from Mayo in Rochester today and I'm going to be seen there next Tuesday. I wasn't going to make an appointment there but I got to thinking it might be nice to be seen by someone with a fresh perspective that doesn't personally know my previous doctor and see him on a daily basis. Just have to take it one day at a time. I had to quit with the pain killers, they are making me too constipated and that is one road I don't feel like journeying right now. Stinks when you would rather be in pain than constipated.

GottaSki Mentor
GottaSki
Posted

Good Luck Beth. Make sure to ask..if not addisons or other things discussed...What could it be? Always ask questions that make them think.

Hang in there and if addisons stays in the mix...Colleen is your advocate.

icelandgirl Proficient
icelandgirl
Posted

I'm so happy for you that you will get seen next week!  Best wishes and please update us when you know something!!

SMRI Collaborator
SMRI
Posted

I received a call from Mayo in Rochester today and I'm going to be seen there next Tuesday. I wasn't going to make an appointment there but I got to thinking it might be nice to be seen by someone with a fresh perspective that doesn't personally know my previous doctor and see him on a daily basis. Just have to take it one day at a time. I had to quit with the pain killers, they are making me too constipated and that is one road I don't feel like journeying right now. Stinks when you would rather be in pain than constipated.

That is probably a good plan.  The coordination of care there is just outstanding so they will look at the whole picture vs just a symptom here and there.  Our last visit we stayed at the Brentwood Inn.  It's connected to Mayo by their underground tunnel system. Very easy and handy!!

beth01 Enthusiast
beth01
Posted
  • Author

That is probably a good plan.  The coordination of care there is just outstanding so they will look at the whole picture vs just a symptom here and there.  Our last visit we stayed at the Brentwood Inn.  It's connected to Mayo by their underground tunnel system. Very easy and handy!!

Thanks, we are only an hour and a half away so we are going to drive up and come back. Unless they want me there for more than one day, then my boyfriend's cousin lives in town. I have been there before, I had a mass wrapped around my around my aorta that I had removed at St. Mary's about 4 years ago. Luckily, I am seen by a branch of Mayo here in town so I don't have to have all my medical records with me, they are all on their computers.

icelandgirl Proficient
icelandgirl
Posted

Hey Beth...wondering how things went at Mayo. I hope you got some answers and are feeling better.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,545
    • Most Online (within 30 mins)
      7,748
    WAY
    Newest Member
    WAY
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.