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

Help for long term celiac sufferer who is now very poorly

Tennallis

By Tennallis
in Related Issues & Disorders

Recommended Posts

Tennallis Newbie
Tennallis
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted
 

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 Enthusiast
Gluten-free-01
Posted

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 Newbie
Tennallis
Posted
  • Author

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 Grand Master
trents
Posted

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 Collaborator
TexasJen
Posted

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 Grand Master
trents
Posted

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. 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

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 Grand Master
trents
Posted

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

knitty kitty Grand Master
knitty kitty
Posted
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 Newbie
Geliza
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    3. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
    4. trents
      - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

      What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
    5. knitty kitty
      - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

      @EndlessSummer, You said you had an allergy to trees. People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits. Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease. Switching to a low histamine diet for a while can give your body time to rid itself of...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,692
    • Most Online (within 30 mins)
      7,748
    Ali Zaib
    Newest Member
    Ali Zaib
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Dizziness after eating green beans?

      By trents · Posted

      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
×
×
  • 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.