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
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • 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.
×
×
  • 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.