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

Unbelievable!

bartfull

By bartfull
in Related Issues & Disorders

Recommended Posts

bartfull Rising Star
bartfull
Posted

As most of you know I was diagnosed with lupus a couple of weeks ago. My biggest complaint was the arthritis in my wrists and fingers. This has been going on since last winter and getting much worse.

 

Yesterday was one of my worst days yet. Not only could I barely turn the steering wheel on my car, but even turning the key to start it made me flinch. Couldn't turn the faucet, couldn't lift my coffee cup, and even giving change out of the register made me flinch.

 

This morning (and mornings are always worse), I woke up pain-free! It's really hot and humid today too and of course humidity always makes it worse. Could it be that the gin-soaked raisins have finally kicked in?

 

It has been almost six weeks since I started taking them. I truly believed it wouldn't work. Maybe it's just a fluke and tomorrow will be bad again but honestly, there is NO pain at all today. None. I've had good days and bad days since all this started but even the good days were pretty bad. Today I drank my coffee like a normal person, I cut my toenails, I took out some very heavy things I wanted to throw away, turned the faucets with one hand, Started the car and turned many corners on the way down here, and did it all with absolutely no pain whatsoever.

 

I was at the point where I was seriously considering selling all of my guitars and turning all of my lessons over to another teacher. I was thinking it wouldn't be long before I'd have to sell the store because I couldn't even do a string change or turn the tuning keys on a guitar, let alone open boxes of new stock.

 

Maybe it'll all come back tomorrow. Maybe this IS just a fluke. But I have hope for the first time in a long time. If any of you have tried the gin-soaked raisins and gave up after a month (the way my friend Bonnie did), please, give it time. They say it can take up to eight weeks before it kicks in. I'll keep you all informed of how it goes in the future, and if you missed my post about this six weeks ago, here is the recipe: Open Original Shared Link

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

Celiac.com Sponsor (A8-M):


notme Experienced
notme
Posted

i'm so glad you are having a pain-free day, barty!  what time of day do you take these raisins?  if i do a few 'moonshine maracshinos' (<sp) i am generally in no pain, lolz, but the next day is a b!+ch :D  j/k :)  i don't have arthritis........    <_<  yet   :ph34r:

bartfull Rising Star
bartfull
Posted
  • Author

:lol:

 

I wish I could do tequila soaked blueberries. I would have the same problem the next morning though.

 

But for those who are wondering, you can take them any time of day, but take them all at once. I do them at six in the evening when I get home from work. That way there is no gin on my breath when I get to the shop. :P

nvsmom Community Regular
nvsmom
Posted

Yeah!  :D

cyclinglady Grand Master
cyclinglady
Posted

So glad that you are feeling better!

ravenwoodglass Mentor
ravenwoodglass
Posted

That is really great news! I may have to give that a try myself even though I really can't stand gin. Would rum work?

mamaw Community Regular
mamaw
Posted

bartfull....... it  is so  great  to hear  your news & wonderful  that  you are having  a  well deserved  respite  form  pain...My  hubby  did  this years  ago  & worked well for  a  period  of  time but  as he  said "  any time  minutes, hours  , days   or  month's  is  worth  it  ,not being  in  unbearable  pain.... I  pray  it  lasts  & lasts  for  you....

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

Celiac.com Sponsor (A8-M):


bartfull Rising Star
bartfull
Posted
  • Author

Thanks everybody! Have I mentioned before that I love you all? :wub:

 

Raven, I think it has to be gin. Something about the juniper berries and the sulfites in the golden raisins reacting with each other. That's why you can't use cheap gin - it is only juniper FLAVORED. And honestly, I don't like gin and I don't like raisins but after a while they blend so much it doesn't taste like either. As a matter of fact when it got down to the end of the first batch I made it was syrupy and sweet and not bad at all. Besides, you only eat nine a day and you can wash 'em down with something you do like to get rid of the taste. I told someone this morning that I would eat milk soaked green beans (my two least favorite things) if it helped. I said I'd eat them with relish and laughed because I don't like relish either. :lol:

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks for the info. I am assuming you just need enough gin to cover. Is that right? Well worth a try as it would make my hours after work easier and in the morning the stiffness is awful so maybe it would help with that also. It would be nice not to have to get up at least four hours before work so I can move. I could sleep past 4am if that happened.

bartfull Rising Star
bartfull
Posted
  • Author

Yes, just enough to cover. If you click on the link I posted in the first posting here there is even a video showing how to make them. Please, just make sure you don't quit after a few weeks. Give it at least eight weeks.

icelandgirl Proficient
icelandgirl
Posted

Wow! Cool! So excited for you Bartie!

LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted

:D Awesome news and thank you for sharing the recipe with us (plus clarifying gluten-free brands for me). 

squirmingitch Veteran
squirmingitch
Posted

Yaaaaaaaaaaaaaaaaaaaaaaayyyyyyyyyyyyyyyy Barty!!!!I am so hoping this is no fluke of any kind and that you go on feeling no pain forever! Heaven knows there are enough people out there who say they've tried this & it works like a charm so I'm going to believe it will for you too. Positive thoughts can't hurt right?

bartfull Rising Star
bartfull
Posted
  • Author

I just played for over two hours! I started on my classical guitar because I have no callouses left and they nylon strings are easier on the fingers. Then I played a few on the banjo but it tore up my fingers. So I finally switched to ukulele. Now I'm done. My fingers are all torn up. A lot of it is from no callouses but a lot is from the psoriasis too. But it felt so good to play it's a GOOD kind of pain. I think I'll take the uke home tonight to work on my callouses some more. I wonder if Patches will like it. Grommit hated it when I played because I wasn't paying attention to her. Maybe Patches will sit and listen.

 

And speaking of music and animals, one of my students has a cat who comes and lies at his feet whenever he plays "Free Bird". That's the only song the cat pays attention to. Well last week he was playing plugged in on the porch and when he started on "Free Bird" all of the cattle came over and stood in a line at the fence and listened. As soon as he started the next song they all drifted away. True story! So if your cat or your cow ever wander off and get lost just play them that song and they'll come home. :lol:

LauraTX Rising Star
LauraTX
Posted

I have lupus with my main symptom being arthritis as well.  Lupus is a disease you have to kind of get to know with your personal circumstance.  It is a really up and down thing- some days you feel like death, and others you feel just fine.  On the days you feel great, you have to be mindful to not overdo it and pay for it the next few days.  It is all about managing those waves of inflammation.  Methotrexate is what helped me with my joints the most.  As for the Gin and raisins, things like that can't hurt as long as they don't interact with something you are taking.  If you are on any lupus meds that require liver and kidney function monitoring (such as the mtx), make sure you go get your blood work done regularly, because alcohol intake can increase the risk of those issues.  

 

Glad to hear you finally had a good day, and hope it keeps that way!

Celiacandme Apprentice
Celiacandme
Posted

Yay for a painfree day, bartfull! Did they start you on plaquenil or something when they diagnosed you with lupus? I hope you find that today is pain free as well and that good days always continue for you!

bartfull Rising Star
bartfull
Posted
  • Author

The doctor wanted to put me on prednisone and I refused it. He knows I have no insurance so for now I am just on Advil for the pain with orders to stay out of the sun, don't drink (but the raisins are OK), don't smoke, take naps when I feel like it, and try not to overdo anything. If anything changes I'm supposed to go back. Right now the fatigue and arthritis are the only problems.

 

This morning I had some pain but it quickly went away once I had been up and moving around. I'm looking forward to another good day. :)

nvsmom Community Regular
nvsmom
Posted

:)  I was wondering if you'd be sore today after yesterday's hours of guitar.  I'm so glad you are still well.  :)

 

I agree about the prednisone, avoid the steroids when you can.  I think mild steroids are part of the reason that I ended up with insulin resistance.... It did help my other health issues though.  

janpell Apprentice
janpell
Posted

Whaaaat? I thought I heard everything for joint pain. I don't have lupus but psoriasis and PsA. If I am extremely strict with my diet I can be completely joint pain free but then it is a very, very limited diet and I have to be honest with myself that I just can't do it. I keep out gluten, dairy, soy, tomatoes but need corn sometimes and rice. This will be amazing if it works. Were you sure to use golden raisins? If not I am making in tonight with my Sunmaids. I will get the goldens tomorrow if I really need them! I have some ankle swelling to clear up which has been reoccuring too often this past summer.

bartfull Rising Star
bartfull
Posted
  • Author

Golden. Definitely.

 

I'm curious about the psoriatic arthritis too. My doctor said it was a distinct possibility that I had that too. I have palmoplantar and it was fine until my last glutening. Usually it goes away in three weeks or so, at least on my hands. But it's been since the middle of June this time and it's still flaring badly. Usuall I get the white/greenish pustules. Then they fade to red spots. Then the skin dries and cracks during the healing stage. I'm not getting any new pustules but the skin is all cracked open still and REALLY sore.

 

It used to be that corn and soy made it flare really badly. After my gut finally healed I was able to add them back. Maybe if I give them up again it'll heal? It's so hard to think of going back to such a limited diet but looks like I'll have to. (And I've got a freezer full of Udi's too! :angry: )

 

So tell me, how long have you had it and do you have any joint deformity? That scares the stuffing out of me. When the doctor said he thought I might have it I just said, "No, I don't want that." I need my hands!

janpell Apprentice
janpell
Posted

I was diagnosed almost 10 years ago but had joint pain for about 20 plus. It was the worst in my late 30's/early 40's. I couldn't even close my hands. My right knee made me feel the worst as it took away comfortable mobility. I have been gluten free for about 4 years now and can make a tightly closed fist. I have no deformities. I do have some tightness in my right leg as getting full extension isn't quite there yet but almost. This is a muscle thing though not joint. I don't think I have any joint damage either. I noticed I was getting a slight twist on my index finger two years ago (as the fine hair on my knuckles was more to the side) and now it is more centered again as if it self corrected.

Can't wait to try this!

bartfull Rising Star
bartfull
Posted
  • Author

Make sure you stick with it and don't give up after a few weeks. It can take up to eight weeks. And keep in mind it doesn't cure anything, just gets rid of the pain. People with RA who use these still have RA and still get joint deformities. It just doesn't hurt, or at least not as much. It won't cure your psoriatic arthritis or my lupus either, but if it gets rid of the pain, I am grateful.

janpell Apprentice
janpell
Posted

Well, I don't really have pain but inflammation and stiffness in my ankles right now. I should be happy where I am but I have had a few days where I felt nothing - no tightness or inflammation and that is what I am really striving for (and for my CRP to be 0). But I am too weak (diet wise) to keep it up though.

Pegleg84 Collaborator
Pegleg84
Posted

I like gin AND raisins! Is it known to work just on joint pain, or for muscle pain/inflamation as well?

Keep it up and hope it keeps working! I have bouts of neuropathy/mild joint pain, and arthritis definitely runs in my family so I think I have that to look forward to.

Don't sell your shop!!

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. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    2. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    3. knitty kitty
      - 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.

      @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...
    4. Jane02
      - 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.

      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...
    5. knitty kitty
      - 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.

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

  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748
    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    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

    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

      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?
×
×
  • 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.