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. knitty kitty
      - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

      @Charlie1946, Sorry I sidetracked your thread a bit. Apologies. Proton pump inhibitors, like Omeprazole, change the pH in our gastrointestinal systems which allows opportunistic microbes to move in and take over. Have you been checked for SIBO? There's a significant link between length of Omeprazole use and SIBO. I had SIBO, thrush (Candida...
    2. Lkg5
      - Lkg5 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    3. Lkg5
      - Lkg5 commented on Scott Adams's article in Diagnosis, Testing & Treatment
      1

      Rapid Diagnosis of Celiac Disease Using Blood-Based Infrared Spectroscopy and Deep Learning

      Wow!!! 😂
    4. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor. I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle
    5. Aretaeus Cappadocia
      - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods re...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,098
    • Most Online (within 30 mins)
      7,748
    BothySmithy
    Newest Member
    BothySmithy
    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
      Severe severe mouth pain

      By knitty kitty · Posted

      @Charlie1946,  Sorry I sidetracked your thread a bit.  Apologies. Proton pump inhibitors, like Omeprazole, change the pH in our gastrointestinal systems which allows opportunistic microbes to move in and take over.  Have you been checked for SIBO?  There's a significant link between length of Omeprazole use and SIBO.  I had SIBO, thrush (Candida) and lichen planus and other problems while I was on Omeprazole.  I had to stop taking it.  It was a horrible time, so I understand how painful and frustrating it is.   You change your microbiome (the bacteria and microbes living inside you) by changing what you eat.  They eat what you eat.  Change the menu and you get different customers.   I changed my diet.  I cut out dairy because I was reacting to the casein and lactose.  I cut out all processed foods and most carbohydrates. I ate meat and veggies mostly, some fruit like apples and mandarin oranges.  By cutting out all the excess carbohydrates, lactose, and empty carbs in processed gluten-free foods, the opportunistic microbes get starved out.  SIBO bacteria send chemical messages to our brains demanding more carbs, so be prepared for carb cravings, but don't let the microbiome control you!   The skin and digestive system is continuous.  The health of our outside skin reflects the health of our gastrointestinal system.  Essential B vitamins, like Thiamine B 1 and especially Niacin B 3, are needed to repair intestinal damage and keep bad bacteria in check.  Niacin helps improve not only the intestinal tract, but also the skin.  Sebaceous Hyperplasia is linked to being low in Niacin B 3.  Lichen Planus is treated with Niacinamide, a form of Niacin B 3.   Vitamins are chemical compounds that our bodies cannot make.  We must get them from our food.  If our food isn't digested well (low stomach acid from Omeprazole causes poor digestion), then vitamins aren't released well.  Plus there's a layer of SIBO bacteria absorbing our vitamins first between the food we've eaten and our inflamed and damaged villi that may have difficulty absorbing the vitamins.  So, taking vitamin supplements is a way to boost absorption of essential nutrients that will allow the body to fight off the microbes, repair and heal.   Doctors are taught in medical learning institutions funded by pharmaceutical companies.  The importance of nutrition is downplayed and called old fashioned.  Doctors are taught we have plenty to eat, so no one gets nutritional deficiency diseases anymore.  But we do, as people with Celiac disease, with impaired absorption.  Nutritional needs need to be addressed first with us.  Vitamins cannot be patented because they are natural substances.  But pharmaceutical drugs can be.  There's more money to be made selling pharmaceutical drugs than vitamins.   Makes me wonder how much illness could be prevented if people were screened for Celiac disease much earlier in life, instead of after they've been ill and medicated for years.   Talk to your doctor and dietician about supplementing essential vitamins and minerals.   Interesting Reading: The Duration of Proton Pump Inhibitor Therapy and the Risk of Small Intestinal Bacterial Overgrowth: A Systematic Review and Meta-Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC12250812/#:~:text=The long-term use of,overgrowth dynamics is less clear. Lichenoid drug eruption with proton pump inhibitors https://pmc.ncbi.nlm.nih.gov/articles/PMC27275/ Nicotinamide: A Multifaceted Molecule in Skin Health and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC11857428/
    • Lkg5
      Severe severe mouth pain

      By Lkg5 · Posted

      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor.  I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle 
    • Aretaeus Cappadocia
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Aretaeus Cappadocia · Posted

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      heaps of hope!

      By Scott Adams · Posted

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
×
×
  • 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.