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Newly diagnosed and feeling hopeless

Platinum

By Platinum
in Coping with Celiac Disease

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Platinum Rookie
Platinum
Posted

I was hospitalized back in November for alot of different things. While I was there they did a endoscopy, colonoscopy, blood tests, biopsies, blood transfusions, iron infusion , and then basically told me that I was making most of my symptoms up and there was nothing they could do. My biological father finally got in contact with me after talking to my brother about what was going on and he informed me that he has Celiac's disease and that i might want to get tested. I finally got my blood work done about three weeks ago after talking to my primary doctor. He reviewed my biopsy from my hospital visit as well and he said I was definitely right about the Celiac's and was upset that no one said a thing from November. Since being hospitalized I lost my job, my house, and my symptoms seem to never get any better. I've been gluten free since before the blood work got ordered. I'm just scared to think that I will never be able to function again. Im a mom of three beautiful boys and now I can't seem to support them or myself. I can't think straight. I feel awful all the time and now I don't think I can get the treatment I will need to help...

 

Sorry for the long post. I'm just scared and need to vent. 

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cyclinglady Grand Master
cyclinglady
Posted
4 hours ago, Platinum said:

I was hospitalized back in November for alot of different things. While I was there they did a endoscopy, colonoscopy, blood tests, biopsies, blood transfusions, iron infusion , and then basically told me that I was making most of my symptoms up and there was nothing they could do. My biological father finally got in contact with me after talking to my brother about what was going on and he informed me that he has Celiac's disease and that i might want to get tested. I finally got my blood work done about three weeks ago after talking to my primary doctor. He reviewed my biopsy from my hospital visit as well and he said I was definitely right about the Celiac's and was upset that no one said a thing from November. Since being hospitalized I lost my job, my house, and my symptoms seem to never get any better. I've been gluten free since before the blood work got ordered. I'm just scared to think that I will never be able to function again. Im a mom of three beautiful boys and now I can't seem to support them or myself. I can't think straight. I feel awful all the time and now I don't think I can get the treatment I will need to help...

 

Sorry for the long post. I'm just scared and need to vent. 

I am confused.  How long were you gluten free before your celiac testing?   Were you diagnosed by your primary?  If a celiac blood test is positive, usually you are referred to a Gastroenterologist for an endoscopy to obtain intestinal biopsies.  

I am sorry that you are sick and struggling.  ?

 

Platinum Rookie
Platinum
Posted
  • Author

I had the endoscopy in November and was on the brat diet until the beginning of January where I stopped eating gluten and dairy. My primary doctor was the one who ordered blood work after I asked for more information about it. After the blood work came back he took a second look at my endoscopy results and he said there were definitely signs and my GI doctor completely ignored it. 

cyclinglady Grand Master
cyclinglady
Posted

That is horrible!  The GI should have caught it.  But I get it.  Two months after my celiac disease diagnosis, I got sick, passed out and the paramedics and doctors thought I was having a heart attack.  I could not get off the floor because my back hurt.    I was admitted and they found nothing.  My primary reviewed the hospital records and found two fractures in my vertebrae.  No one read the X-rays as their focu was cardio.  No wonder my back was killing me.  The good news is that my heart is in awesome shape, but what a way to find out.  

Know that it takes most celiacs a year or longer to recover from celiac disease.  Why?  Most of us have system or collateral damage.  The gluten free diet has a steep learning curve.  So, consider reading our Newbie 101 thread found under the “Coping” section of the forum.  Read and learn all you can about celiac disease and tips for keeping you safe.  

Have you had your children tested?  

Soon, you will feel better.  It just takes time.  If you have questions, just ask.    When you are sick it is hard to research on your own.  

Hugs!  

Platinum Rookie
Platinum
Posted
  • Author

I'm trying to get on a different insurance so I can continue to see my oncologist and find a new GI doctor. Getting my kids checked is next on the list. I'm starting to think my oldest has it as well. I've been trying to to research more but I feel more lost. I will definitely check into that. Thank you for the help.

notme Experienced
notme
Posted

deep breaths!  every one of us has been where you are.  this is a good place to vent and ask questions :) once you have been gluten free for awhile, you should see other symptoms (seemingly unrelated) go away.  this disease is a chameleon - i personally had migraines/ headaches/ joint pain/  fatigue/ dh skin rash etc along with the lovely big D and all the other g.i. issues.   so, good news, you should feel better moving forward!  you can get another job, you can get another house, you can't get another you!  so, time to take care of you.  indeed, read the newbie 101 thread -- lots of good info there.

also, don't take any kids off  gluten before testing is complete.  maybe keep a food journal to see if any other foods are aggravating your gut.  almost every thing you ate before can be duplicated to be gluten free.  lots of new/good products out there lately, even flour tortillas!

hang in there.  you can do this!  welcome to the forum :)

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      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
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      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
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