Help for long term celiac sufferer who is now very poorly

[Tennallis]

Dear All,

I am writing this post on behalf of my father, who at the age of 67 has been a diagnosed celiac for the last 37 years. 

He has a complete intollerance of gluten and has managed his disease extremely well over the last 37 years. However, starting approximately 12 months ago he started to lose weight, and started to suffer from low blood pressure and terrible headaches at the same time.  He has terrible edema and fluids leak from his swellings.

He has had several CT scans, endoscopies and blood tests. 

So far we know the following : he is currently in hospital in a bad way after being admitted 2 days ago.

He has an albumin level of 14 when it should be around 60.  He has little or no iron in his blood.  His blood pressure when sitting was 70/55 and drops when he stands, so much so that the nurses are struggling to get a reading. he has terrible swellings in his legs and arms and stomach region.  Fluid is leaking from the swellings.

He has had a chest xray today and he has fluid in his lungs and his heart now looks enlarged.  He is going for a heart scan this afternoon

Please can anyone help us, or point us in the direction of a fix for this?  the doctors have admitted that they have no idea how to even start fixing it - at the moment all they are doing are giving him a duretic via a port in his arm.

lastly he has lost around 6 stone in the last 12 months.  Its taken forever to get anything looked into and for a while they were looking into his heart as they had seen some markers in some blood tests and thought he was in heart failure...this has since been dismissed as incorrect.

Thank you in advance for any help of advice you can possibly give.

Rachel

[cyclinglady]

 

Dear All,

I am writing this post on behalf of my father, who at the age of 67 has been a diagnosed celiac for the last 37 years. 

He has a complete intollerance of gluten and has managed his disease extremely well over the last 37 years. However, starting approximately 12 months ago he started to lose weight, and started to suffer from low blood pressure and terrible headaches at the same time.  He has terrible edema and fluids leak from his swellings.

He has had several CT scans, endoscopies and blood tests. 

So far we know the following : he is currently in hospital in a bad way after being admitted 2 days ago.

He has an albumin level of 14 when it should be around 60.  He has little or no iron in his blood.  His blood pressure when sitting was 70/55 and drops when he stands, so much so that the nurses are struggling to get a reading. he has terrible swellings in his legs and arms and stomach region.  Fluid is leaking from the swellings.

He has had a chest xray today and he has fluid in his lungs and his heart now looks enlarged.  He is going for a heart scan this afternoon

Please can anyone help us, or point us in the direction of a fix for this?  the doctors have admitted that they have no idea how to even start fixing it - at the moment all they are doing are giving him a duretic via a port in his arm.

lastly he has lost around 6 stone in the last 12 months.  Its taken forever to get anything looked into and for a while they were looking into his heart as they had seen some markers in some blood tests and thought he was in heart failure...this has since been dismissed as incorrect.

Thank you in advance for any help of advice you can possibly give.

Rachel

Rachel,

I am so sorry that your father  is ill.  Did the doctors run a celiac panel to determine if his celiac disease is active (getting trace amounts of gluten into his diet)?  What he is experiencing might not be related to celiac disease, but testing will help rule it out.   I understand that he had endoscopies recently.  Were those all negative?  How many biopsies?  It is easy to miss damage as the small intestine is about the size of a tennis courts.  

 

 

[Gluten-free-01]

Severe complications of undiagnosed/untreated diabetes maybe?

It is hard to say. I'm not a doctor. I hope they have ruled this out.. it is one of the most common blood tests.. but you never know.

Rachel, I hope your father gets well soon.

[Tennallis]

Thank you for both of your responses.  Will definately mention the panel to the docs when I go to see him tonight.  As for the diabetes he has had several bloodtests and they have come back clear.  The main issue is that he is malnourished and the low level of Albumin in his blood is what appears to be causing him to lose weight and appears to be causing the edema and subsequently the low blood pressure.

He has another CT scan today on his bowel, so will see how that goes. 

Thank you again - hopefully they can get to the bottom of this for him x

[trents]

I wonder if he has refractory celiac disease.

Also, has he been checked for pernicious anemia?

Are they giving him diuretics to remove the water?

[TexasJen]

I think the heart scan will be very telling.  A lot of it (lung fluid, swollen feet) could be his heart but I agree with the other posters that it sounds like he is malnourished too.  What was his diet like before he got sick?  Does he have any dementia or Parkinson's?  Was he an active healthy guy up until a year or two ago? Does he stick to a gluten free diet?

[trents]

I find it interesting that the doctors have ruled out congestive heart failure because most or all of the symptoms your pop is having would seem to fit with CHF. When there is fluid buildup in the body like that the serum protein levels become diluted and those numbers will be low. 

[ravenwoodglass]

This must be such a scarey time for your family. Have they ruled out kidney or liver failure or a pnacreatic issue?  Those are the only things that I can think of that hasn't already been mentioned.  I hope they get this figured out soon and he recovers quickly.

[trents]

Yes, Rachel. Our thoughts and prayers are with you. Please keep us posted.

[knitty kitty]

16 hours ago, Tennallis said:

Dear All,

I am writing this post on behalf of my father, who at the age of 67 has been a diagnosed celiac for the last 37 years. 

He has a complete intollerance of gluten and has managed his disease extremely well over the last 37 years. However, starting approximately 12 months ago he started to lose weight, and started to suffer from low blood pressure and terrible headaches at the same time.  He has terrible edema and fluids leak from his swellings.

He has had several CT scans, endoscopies and blood tests. 

So far we know the following : he is currently in hospital in a bad way after being admitted 2 days ago.

He has an albumin level of 14 when it should be around 60.  He has little or no iron in his blood.  His blood pressure when sitting was 70/55 and drops when he stands, so much so that the nurses are struggling to get a reading. he has terrible swellings in his legs and arms and stomach region.  Fluid is leaking from the swellings.

He has had a chest xray today and he has fluid in his lungs and his heart now looks enlarged.  He is going for a heart scan this afternoon

Please can anyone help us, or point us in the direction of a fix for this?  the doctors have admitted that they have no idea how to even start fixing it - at the moment all they are doing are giving him a duretic via a port in his arm.

lastly he has lost around 6 stone in the last 12 months.  Its taken forever to get anything looked into and for a while they were looking into his heart as they had seen some markers in some blood tests and thought he was in heart failure...this has since been dismissed as incorrect.

Thank you in advance for any help of advice you can possibly give.

Rachel

Sorry your dad is so sick.  My heart goes out to you both.  

I believe the problem is malnutrition.  Sometimes Celiacs have trouble absorbing all the nutrients that they need from a gluten free diet.  As people age, intestinal absorption decreases, too.

B12 deficiency will cause low blood pressure and headaches.  Vitamin D deficiency is linked to congestive heart failure.  Not enough protein can cause low albumin.  Deficiencies of B vitamins, especially B 1 (thiamine), B5 (pantothetic acid) and B6 (pyroxidone) can cause edema.  

Many doctors today don't recognize nutritional deficiencies.

I would suggest having your father checked for vitamin and mineral deficiencies.  

I hope this helps. 

Kitty

 

[Geliza]

Could your father  have hypothyroidism as this can cause low blood pressure and bloating, and swelling, I also go with the possibility of lack of vitamins especially B1,B12, and D3 as Kitty mentioned. I'm not a doctor but have autoimmune hypothyroidism and celiac disease and have had similar though much less serious symptoms, and now must take vitamins as I don't absorb them properly from food.