Addison's Disease?

[russtay1]

I just got out of a week in the hospital, was diagnosed with Addison's disease. I am beginning to think there is a definite link to the gluten allergy and Addison's.

A little history..

1) Off and on for past 15-20 years I have had long episodes of weakness.

2) In recent years have tried gluten-free diet twice.

2a) First time, I felt better... energy returned.

2b) After lapsing back into regular diet, weakness returned. This was several years later. I went to my doctor and had the gluten allergy test while still eating wheat. It was negative. I gave up wheat anyway... and felt better.

3) SO...after lapsing into a gluten free diet AGAIN.... last few months, extremely tired and weak, memory problems... and a whole list of symptoms. Last week, into hospital with severe leg cramps and weakness. Low, low blood pressure (88/50 is a number I remember). Extremely poor memory.

4) I was admitted with a sodium count at 110... should be at least 135. They finally let me out today with a count of 129 and a supply of hydrocortisone and declomycin and a 1000 ml per day liquid restriction. I think I will be in for daily bloodtests..first one is Sunday morning at the hospital.

I now have an endocrinologist.

I was just laying on the couch and thought "GLUTEN!!" I scooted into the computer and googled the two together and ended up very interested.

Anyone here have Addison's and find that the gluten free diet helps?

Anyone here considered getting a workup at an endocrinologist? It might be worth your time.

Feeling normal for the first time in a very long time....

OK, back to couch..thinking tomorrow will be gluten free and will ask the doc if he thinks my theory of a connection is valid.

Interesting research: Open Original Shared Link In the article:

"In conclusion, we found a highly increased risk

of AD in individuals with celiac disease. This

relationship was independent of temporal

sequence. Methods for autoantibody testing of

AD and celiac disease has improved recently with better

sensitivity and specificity using 21-

hydroxylase (2) and transglutaminase (16)

autoantibody testing for AD and celiac disease

respectively. We therefore recommend that

individuals with AD should be screened for

celiac disease. We also suggest an increased awareness

of AD in individuals with celiac disease."

AD=Addison's disease

OK, NOW back to the couch!

[georgie]

Yes - they could be associated. Both Celiac and Primary Addisons are autoimmune diseases. Once you have one autoimmune disease you are at risk of having others. Its always a good idea to check for sodium/ potassium imbalance ( warning sign for AD), and low BP. Sorry to hear about your diagnosis. Has the Endo discussed emergency home injection kits for you , and what to do in ER ? This link has lots of useful info and also Forums. Open Original Shared Link

[Ursa Major]

Has your aldosterone level been tested? Low aldosterone will cause extremely low blood pressure. Aldosterone also regulates your body's sodium and calcium levels (amongst other things). It sounds like you should be on fludrocortisone in addition to the hydrocortisone (I am, and with taking the FC my blood pressure has gone back up to normal).

[russtay1]

Thanks all. I am new to all this and will meet with doctor in office for first time since hospital stay. My BP, sodium were both low. And blood sugar. And my brain was not working. I am sure he is testing all the stuff. Of course I have been googling like crazy and learning all about the problems of cortisol, aldosterone and ACTH.

I am gluten free again since yesterday afternoon. If it has helped my brain fog in the past that means it must help the Addison's. Because that is a symptom of Addison's.

I really do think there is a connection and it might benefit people here to know that they should see an endocrinologist if the believe they have a gluten allergy. I wish I had thought of it much sooner.

Anne.

[jmj0803]

  russtay1 said:

Thanks all. I am new to all this and will meet with doctor in office for first time since hospital stay. My BP, sodium were both low. And blood sugar. And my brain was not working. I am sure he is testing all the stuff. Of course I have been googling like crazy and learning all about the problems of cortisol, aldosterone and ACTH.

I am gluten free again since yesterday afternoon. If it has helped my brain fog in the past that means it must help the Addison's. Because that is a symptom of Addison's.

I really do think there is a connection and it might benefit people here to know that they should see an endocrinologist if the believe they have a gluten allergy. I wish I had thought of it much sooner.

Anne.

Anne-

My daughter has the Addison's, Celiac and Hypothyroid just wanted to make sure you are aware that thyroid disease is also one of the autoimmune diseases linked to addison's and celiac. If your Endocrine is a good one they will now this already. FYI Diabetes is another common one.

The initial diagnosis of Addison's disease was extremely frightening to me. After two years I have realized that my daughter can live a pretty normal life as long as she takes care of herself. Always stay hydrated, this is EXTREMELY important. We went to a fair, it was very hot and humid, my daughter had a small crisis from dehydration. As long as you take your maintenance dose every day and stress dose as needed it works! Hope this helps! If you have any questions about Addison's let me know. It was a little confusing to me at first.

Jessica