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

Father With Celiac And Parkinson's Disease


wowpookie

Recommended Posts

wowpookie Newbie

Hello! I have had a gluten sensitivity for the last few years and possibly Celiac Disease. My blood work came back negative, but I hadn't been eating much gluten before the test, which I know can sway the results. I have been gluten free on and of for the past few years and after talking to a Celiac friend of mine learned that my father with Parkinson's Disease still has Celiac. He told me that he once had it as a child, but outgrew it. After researching that, and talking to my friend that that was the old belief but Dr's now know that a person can not "outgrow" Celiac Disease.I have also done some research on the connection between Parkinson's Disease and Celiac and it seems that the symptoms of Celiac Ataxia and Parkinson's are very similar. When I told my father this he was very emotional and agreed to try a gluten free diet. It has been a few weeks and his Parkinson's symptoms have ALREADY lessened! His throat was contracting during meals causing food to get stuck in his throat...this has stopped happening. His weight was dipping daily.. and it has remained at 156 lbs for the last week. His life long stomach pains have stopped. He was losing his ability to taste food.. this hasn't happened in 2 weeks. He is able to speak more clearly, although he still has a period in the day when he still stammers. He is less fatigued, has less anxiety and is less "foggy". He is also snacking less...(he has been a compulsive snacker his whole life..haha) Amazing right? I'm so amazed and so is he!! Has anyone else had Parkinson's like symptoms? Do you think there is a chance more of his symptoms will be relieved? We are really excited. Thank you for reading! :)


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



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

Hello! I have had a gluten sensitivity for the last few years and possibly Celiac Disease. My blood work came back negative, but I hadn't been eating much gluten before the test, which I know can sway the results. I have been gluten free on and of for the past few years and after talking to a Celiac friend of mine learned that my father with Parkinson's Disease still has Celiac. He told me that he once had it as a child, but outgrew it. After researching that, and talking to my friend that that was the old belief but Dr's now know that a person can not "outgrow" Celiac Disease.I have also done some research on the connection between Parkinson's Disease and Celiac and it seems that the symptoms of Celiac Ataxia and Parkinson's are very similar. When I told my father this he was very emotional and agreed to try a gluten free diet. It has been a few weeks and his Parkinson's symptoms have ALREADY lessened! His throat was contracting during meals causing food to get stuck in his throat...this has stopped happening. His weight was dipping daily.. and it has remained at 156 lbs for the last week. His life long stomach pains have stopped. He was losing his ability to taste food.. this hasn't happened in 2 weeks. He is able to speak more clearly, although he still has a period in the day when he still stammers. He is less fatigued, has less anxiety and is less "foggy". He is also snacking less...(he has been a compulsive snacker his whole life..haha) Amazing right? I'm so amazed and so is he!! Has anyone else had Parkinson's like symptoms? Do you think there is a chance more of his symptoms will be relieved? We are really excited. Thank you for reading! :)

That is awesome news and I am glad your dad agreed to go off gluten. My grandfather, I am positive, would have improved had he gone off too. He was dizzy the last several years of his life, had lost taste, lost his appetite, had terrible stomach issues. In the end he had colon cancer that eventually went to his bones. Shortly after he passed this past Jan, I was in the hospital with the same symptoms and I was diagnosed with celiac 7 months later. There is no way to go back in time and make a difference for those we have lost to this silent killer. It is really great you were able to save your dad!

Bubba's Mom Enthusiast

I'm thrilled for your Father's gluten-free response! Gluten affects so many things it's scary.

I hope he continues to see improvement.

It must feel great to have connected the dots for him? :D

wowpookie Newbie

[Thank you both so much. I am thrilled to be able to help my dad in this way! I am really excited about his future. :)

Archived

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

  • 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 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,333
    • Most Online (within 30 mins)
      7,748

    Donna Chem
    Newest Member
    Donna Chem
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.