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Concern From A Call From The Doctor

bonnie blue

By bonnie blue
in Coping with Celiac Disease

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bonnie blue Explorer
bonnie blue
Posted

Hi friends,

Let me start at the beginning, I was diagnosed with Celiac in September of 2010, felt pretty darn good, but then at the beginning of December started feeling bad again, the D was back with a vengeance, pain, dizziness, more weight loss. I ended up in hospital after my husband came home from work and found me on the floor passed out. I was in the hospital for three days, my blood pressure and heart rate were very low, they ran many blood tests and all they could find was that my potassium was low. So they decided another endoscopy and to add to the fun a colonoscopy. The good news is that they did find I am responding to the gluten-free diet, however I still have the D, pain, exhaustion, dizziness, and horrible depression. The doctor did call today and they want me to see an endocrinologist, you see my Grandmother died from Addison's diseases, and there is a concern for this. I must admit I am a little concerned and just need someone to tell me it will be ok. Please understand I have an amazing family and a strong support system, but sometimes you just want to talk to someone who is going through the same thing you are. :unsure:

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Loey Rising Star
Loey
Posted

Hi friends,

Let me start at the beginning, I was diagnosed with Celiac in September of 2010, felt pretty darn good, but then at the beginning of December started feeling bad again, the D was back with a vengeance, pain, dizziness, more weight loss. I ended up in hospital after my husband came home from work and found me on the floor passed out. I was in the hospital for three days, my blood pressure and heart rate were very low, they ran many blood tests and all they could find was that my potassium was low. So they decided another endoscopy and to add to the fun a colonoscopy. The good news is that they did find I am responding to the gluten-free diet, however I still have the D, pain, exhaustion, dizziness, and horrible depression. The doctor did call today and they want me to see an endocrinologist, you see my Grandmother died from Addison's diseases, and there is a concern for this. I must admit I am a little concerned and just need someone to tell me it will be ok. Please understand I have an amazing family and a strong support system, but sometimes you just want to talk to someone who is going through the same thing you are. :unsure:

I used to see an endocrinologist for problems in my family history so please know that you don't automatically have that ailment. Also know that you are not alone. I'm fairly new to this forum and don't know what I would do without it. They are the most supportive, knowledgeable and caring people I've ever met. I was only diagnosed last June and then moved to a new state the next day. I still have D and severe pain but being able to connect with all of the wonderful people here has given me the strength and belief that we'll all get through this. If you need to vent or want to just let go one on one with someone please feel free to PM me. As I mentioned I'm not the most experienced person here but I'm an avid researcher and would be happy to look up Addison's tomorrow if you'd like. I just wanted you to know you're not alone.

Sending positive energy and healing hugs,

Loey

Rachel W Apprentice
Rachel W
Posted

It will be ok :) Think of all the positive you have going for you-- Some ppl have scopes 1 YEAR post Dx/gluten-free diet, and do not show improvement and YOU have--YAYY!!!

And it's wonderful that you have a DR that pays enough attention to your symptoms to send you to an endocrinologist,, you can tell from enough posts on this site that ppl with celiac tend to have dr's that seem to turn a deaf ear :(..And you are very blessed to have a amazing famiily , and if there was ever a time to have Celiac or Addisons, it's now.. I often think of all the ppl years ago that suffered with unknown Celiac and other diseases.. no treatments,med's etc like we have now.. And you have this site :) and a wonderful supportive group of us that are walking in the same shoes ;) Thoughts and prayers with you :)..let us know when you go !!!

India Contributor
India
Posted

Hi Bonnie Blue,

You poor thing - it's so difficult not to know what's wrong with you, especially after going through it all once already with coeliac.

Right now, I'm going through something pretty similar with my husband. He has various health problems but the diagnoses and treatments haven't been enough to make him better. We have an appointment with an endocrinologist in March and I'm almost hoping for a diagnosis of Addison's just to know what's wrong. The point I want to make is that, from my reading, Addison's seems to be a little like coeliac in that it can do terrible things if left untreated BUT can be managed pretty well if it's diagnosed. JFK had it, in fact, and he coped pretty well. So - please try not to worry.

Hoping for the best for you. Keep on at those doctors until they figure things out!

India

Gemini Experienced
Gemini
Posted

Hi friends,

Let me start at the beginning, I was diagnosed with Celiac in September of 2010, felt pretty darn good, but then at the beginning of December started feeling bad again, the D was back with a vengeance, pain, dizziness, more weight loss. I ended up in hospital after my husband came home from work and found me on the floor passed out. I was in the hospital for three days, my blood pressure and heart rate were very low, they ran many blood tests and all they could find was that my potassium was low. So they decided another endoscopy and to add to the fun a colonoscopy. The good news is that they did find I am responding to the gluten-free diet, however I still have the D, pain, exhaustion, dizziness, and horrible depression. The doctor did call today and they want me to see an endocrinologist, you see my Grandmother died from Addison's diseases, and there is a concern for this. I must admit I am a little concerned and just need someone to tell me it will be ok. Please understand I have an amazing family and a strong support system, but sometimes you just want to talk to someone who is going through the same thing you are. :unsure:

Bonnie Blue....from Gone with the Wind! You will be fine because you are doing everything you need to get better. Addison's is one of those diseases that is linked somewhat to Celiac. It's an endocrine system disease and they are common with Celiac, like thyroid disease. The thyroid and the adrenals work together for good health. Addison's results from a lack of cortisol, I believe, which is produced by the adrenals. If you have this, I think the treatment is cortisol supplement, like thyroid hormone.

All Celiacs have additional troubles and once they are worked out and treated, life can be good again. You will get there so relax and do what you need to do to get better. It does take time.

I wish you luck and good health!

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