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

Husband's celiac getting worse!!

mom0511x2

Recommended Posts

mom0511x2 Newbie
mom0511x2
Posted

My husband (59) was diagnosed with moderate to severe celiac about 2 years ago after years of stomach issues, diagnosed both by blood as well as biopsy.  He is completely adherent with his diet, although there have been a few minor exposures while we were learning!  But now, after these past few years he has started to feel worse, his panel for celiac is again, high, high, high, in addition to now having a high HGB A1c and TSH.   I am at a total loss as to how to help him beyond the diet he has been on for two years. We are waiting to get an appt with a nutritionist since his dietary issues are becoming very complicated!   If anyone has any suggestions I would be very appreciative!!!

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

There is a thing called refractory Celiac.  But it seems to be very rare.  Before they diagnose with that, they do an extremely strict gluten-free diet.  Often that takes care of the issue and the person will heal enough to go back to a "normal gluten-free diet".  Have they re-biopsied to see if he actually has damage?

Here is a good explanation:

Open Original Shared Link

ravenwoodglass Mentor
ravenwoodglass
Posted

Sorry you folks are going through this. Do read the Newbie 101 thread at the top of the Coping section to make sure you are not missing anything that needs to be done to keep him safe. Unfortunately being gluten free involves much more than just picking gluten free foodss. We have to be careful of how food is prepared, have our loved ones brush their teeth before kissing if they eat gluten, check all meds and supplements to be sure they are gluten free and make sure we have our own toasters as just a few examples.

I am going to keep my fingers crossed for you both that gluten is simply sneaking in somewhere and that it is not refractory.

Welcome and I hope he is feeing much better soon.

etbtbfs Rookie
etbtbfs
Posted

You should avoid all highly-processed foods, as well as foods beside gluten that commonly provoke allergy (dairy, soy, possibly shellfish, there are others).   Once you are sure he is gluten-free, then: support his thyroid.  It is essential that he get enough T3+T4 because thyroid hormone is essential for digestion.  Put him on a comprehensive supplement program that includes probiotics.  Give him a good digestion support formula, such as "Complete Digestion".  Check all nutrition levels, esp. items like B12 and ferritin.  Make sure his total blood protein is checked, and if it is low, put him on free essential amino acids.

cyclinglady Grand Master
cyclinglady
Posted

Here is an interesting study.  It supports what Karen mentioned about hidden gluten:

Open Original Shared Link

Please make sure all supplements, including probiotics are gluten free.  I would choose only gluten-free certified versions until he has improved.  

 

 

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 JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Seeking advice on potential gluten challenge

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced. Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well. Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside...
    2. Wheatwacked
      - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Have I got coeliac disease

      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins...
    3. Jmartes71
      - Jmartes71 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Gluten tester

      I saw the thing for testing for gluten when at public places.I absolutely love but I wonder if they would come up with a bracelet or necklace that can detect gluten in the air.I would LOVE that, i know i get debilitating migraine from smelling gluten wheat what have you, all I know is when I go into places like Chevron- gluten Subway, migraine, Costco that...
    4. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Seeking advice on potential gluten challenge

      Oops! @Staticgypsy, I’ll get the book! Thank you!
    5. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Seeking advice on potential gluten challenge

      Thank you so much for your help, @trents and @Staticgypsy! I so appreciate your thoughts. My diet is high in foods with oxalates and I don’t notice any issues there. If eliminating gluten from my diet had changed anything I’d be happy to just keep on the gluten-free diet, but with eating gluten several times with no rash, and having a rash when I was man...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,150
    • Most Online (within 30 mins)
      7,748
    gingerc
    Newest Member
    gingerc
    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
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
    • Wheatwacked
      Have I got coeliac disease

      By Wheatwacked · Posted

      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins and minerals.  Low or deficient  Vitamin D is almost always found in undiagnosed Celiac Disease. "Over 900 genes have been reported as regulated by vitamin D"  Possible Role of Vitamin D in Celiac Disease Onset  "The overall prevalence rate of vitamin D deficiency was 41.6%, with the highest rate seen in blacks (82.1%), followed by Hispanics (69.2%)."    Prevalence and correlates of vitamin D deficiency in US adults
    • Jmartes71
      Gluten tester

      By Jmartes71 · Posted

      I saw the thing for testing for gluten when at public places.I absolutely love but I wonder if they would come up with a bracelet or necklace that can detect gluten in the air.I would LOVE that, i know i get debilitating migraine from smelling gluten wheat what have you, all I know is when I go into places like Chevron- gluten Subway, migraine, Costco that food smell of nasty gluten- migraine and same with Walmart subway.I absolutely HATE im that sensitive, my body reacts.Sadly medical hasn't taken core issue of celiac being an issue considering glutenfree ever since 1994 and in their eyes not because they didn't diagnose me. I am and wish I wasn't. If there was a detector of gluten in the air it would make a world of difference. 
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Oops! @Staticgypsy, I’ll get the book! Thank you! 
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for your help, @trents and @Staticgypsy! I so appreciate your thoughts. My diet is high in foods with oxalates and I don’t notice any issues there. If eliminating gluten from my diet had changed anything I’d be happy to just keep on the gluten-free diet, but with eating gluten several times with no rash, and having a rash when I was many years into gluten-free eating (and was much more careful at that point), I’m just baffled. Many, many thanks to you both. 
×
×
  • 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.