Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

"More" patience required

Megawisdumb

By Megawisdumb
in Coping with Celiac Disease

 Share

Recommended Posts

Megawisdumb Apprentice
Megawisdumb
Posted

Nothing like starting 2023 with some intrigue…after my post below in Nov stating that my gluten-free diet seemed to make matters worse.  Well I was correct… my Enterolab lab results confirmed yesterday I have significant immunological reactivity to Corn, Egg, Chicken, Oat, Rice, Beef, Pork, Tuna, Cashew, Walnuts, Almond and White Potato.  This is essentially everything I’ve been eating since gluten-free so that certainly explains a lot.  My favorite is the category labeled “Food which there was NO significant immunological reactivity” which stated “None”.   Not really certain what the hell I’m supposed to eat but maybe some cheap dog food as commercials inform me it has none of the stuff above in it.  Satire aside, I've got some appointments schedule to try and get to the root or at least rank them so I can get back to some normal activity.   In some cases Celiac may be the starting point on the journey not the destination.   

 

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

Celiac.com Sponsor (A8-M):


knitty kitty Grand Master
knitty kitty
Posted

@Megawisdumb,

What have you been eating?  Do you keep a food diary? Do you eat processed gluten free foods?  

Have you tried the Autoimmune Protocol Diet? 

Do you eat a lot of high histamine foods?

Have you been checked for vitamin and mineral deficiencies? 

Megawisdumb Apprentice
Megawisdumb
Posted
  • Author

I've been strict gluten-free since Sept 2022, with primarily beef, chicken, corn and potato products.  I prepare 95% of my meals at home and take them to work.  Almost no histamine foods.  My blood panels look good as I take a mult-vitamin daily as well add'l B1.  I know at some point I will start to feel better as I had so much more energy when I was a pizza pop-tarts and beer guy.  When I started gluten-free and ate more corn & chicken that anything else and my latest Enterolab test placed these two at my highest reactivity level so currently cream of rice, all sorts of fruits, rice and beef are my energy sources until I can get some relief on the joint pain.  In Sept I could run a 10k, today I avoid the stairs.  I have the AIP printed on my frig as its my target with rice added for now.   I really appreciate the information from members of this page as its been invaluable.  I would still be on my gluten-free only diet if I didn't learn about stool testing and other foods I may be sensitive to from this forum.  I made it to my late 50's without any health issues or diet restrictions until now so I am blessed beyond belief based on the stories I've read on this site.  I have never had any GI issues with celiac only the DH skin and joint pain that has escalated which is the sole reason I posted as it seems much different from classic celiac.     

knitty kitty Grand Master
knitty kitty
Posted

Have you had your Vitamin D level checked?  Supplementing Vitamin D until the level is in the eighties nmol/l is important.  Vitamin D can act like a hormone and regulate inflammation at that level.  

Including healthy fats, Omega Threes, is important to joint health.  Extra Virgin Olive oil, coconut oil, avocado oil are healthy fat options.  Omega Threes are in fatty fish like salmon.  Liver is a source of healthy fats as well as vitamins and minerals.

I take flaxseed oil supplements and can tell the difference by achy joints if I miss a day.  

Hope this helps! 

Megawisdumb Apprentice
Megawisdumb
Posted
  • Author

I have not inquired on the D levels.  My multi V has 25mcg which I'll certainly add a separate D supplement to give it a try as well as the fat friends.  I saw my dermatologist yesterday on the DH followup and she took several blood samples after I told her about my joint pain.  Thank you!

Wheatwacked Veteran
Wheatwacked
Posted

If you are ok with milk, 100% grass fed has omega 6:3 ratio of 1:1 while regular commercial milk is 5:1. White wheat flour is 22:1. Optimum for humans is less than 4:1.

25 mcg of vitamin D is enough to keep you from getting Rickets. For reference, I have been taking 250 mcg a day since 2015 and my blood plasma is steady at 80 ng/ml for over two years now. It took from 2015 to 2019 to reach 47 ng/ml. pipingrock.com is the best value I found on D. $15 for 250 caps of 250 mcg.

MiriamW Contributor
MiriamW
Posted
On 1/26/2023 at 3:33 AM, knitty kitty said:

Have you had your Vitamin D level checked?  Supplementing Vitamin D until the level is in the eighties nmol/l is important.  Vitamin D can act like a hormone and regulate inflammation at that level.  

Including healthy fats, Omega Threes, is important to joint health.  Extra Virgin Olive oil, coconut oil, avocado oil are healthy fat options.  Omega Threes are in fatty fish like salmon.  Liver is a source of healthy fats as well as vitamins and minerals.

I take flaxseed oil supplements and can tell the difference by achy joints if I miss a day.  

Hope this helps! 

Hi @knitty kitty I take a tablespoon of organic high lignan linseed oil daily. I was wondering, would you know if it is safe taking it daily long term? 

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

Celiac.com Sponsor (A8-M):


LaLeoLoca Apprentice
LaLeoLoca
Posted

A nutritionist I respect said that until the main food sensitivities are found, the body can keep developing new ones. This is the balancing act In facing now, with severe health issues and few things I can keep down. I hope that as the months or years go by, maybe my body will be less sensitive. For today, I feel how frustrating it is. I hope you find things that are good for you! 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,534
    • Most Online (within 30 mins)
      7,748
    Barbx4
    Newest Member
    Barbx4
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • NCalvo822
      Newly Diagnosed

      By NCalvo822 · Posted

      Thank you.  Very helpful.
    • knitty kitty
      Newly Diagnosed

      By knitty kitty · Posted

      Migraines can be caused by Thiamine deficiency.  Thiamine is a B vitamin that becomes depleted quickly because it can't be stored long.  All the  B vitamins work together to make energy, ATP, which is used to fuel all the cell activity.  Without Thiamine, the energy production cycle doesn't even get started.   There's studies done on mice showing thiamine deficiency affects the offspring of thiamine deficient mothers and fathers.  The offspring have fewer thiamine receptors and are prone to becoming thiamine insufficient quickly.  They have a higher metabolic need for thiamine.  Supplementing with extra thiamine helped them  tremendously. Migraines have run in my family for several generations, too.  Once I started taking TTFD, a form of thiamine that can enter cells without using thiamine transporters, my migraines have vanished.  TTFD is tetrahydrofurfuryl disulfide. Benfotiamine is another form that can improve migraine frequency, too. Thiamine is safe and nontoxic even in high doses.  There is no upper limit because thiamine has never caused a death even in high doses.  It is excreted via kidneys if not needed or not absorbed.
    • knitty kitty
      Lymphocytic Colitis with Celiac

      By knitty kitty · Posted

      Thank you, @Oldturdle, I greatly appreciate that.  I've always been a curious kitty.  I wanted to figure out why I didn't feel well because I knew it wasn't all in my head like they told me.  It pleases me to be able to help others in the same boat. Yes, alcohol prevents the absorption of thiamine and stops thiamine from working properly.  This can lead to Wernicke's Encephalopathy and Korsakoff syndrome, where thiamine deficiency severely affects brain function.  Doctors are trained to look for the triad of symptoms: opthalmoplegia (nystagmus), ataxia, and altered mental state.  However, not all people present with all three symptoms.  Many (80%) don't get diagnosed until their autopsy.   Alcohol has to be processed through the liver.  If there's insufficient thiamine, Alcoholic Fatty Liver develops.  In thiamine insufficiency, calories are turned into fat and stored in the liver instead of being turned into fuel ATP for the body.  Alcohol also prevents absorption of calories from food and other nutrients.   Non-alcoholic Fatty Liver can develop in nonalcoholics, storing excess calories as fat in the liver.  However, excess calories can also be turned into fat and stored in the abdomen, hence the increase in obesity.   In Celiac disease, we don't absorb sufficient nutrients like thiamine from our food.  If we eat a diet high in carbohydrates, we can run out of vitamins like thiamine and the other Bs needed to turn those calories into fuel ATP.  For every extra thousand calories of carbohydrates consumed, our bodies require 500 to 1000 mg of additional thiamine to process them into fuel, ATP,  the "bitcoin" of energy in our bodies.   Wernicke's encephalopathy can occur in non-alcoholic people, but doctors can miss the symptoms because the patient doesn't drink, and doesn't have all three symptoms of the classic Triad of symptoms seen in Wernicke-Korsakoff syndrome.  My doctors failed to diagnose me with thiamine deficiency, Wernicke's Encephalopathy,  because I didn't drink alcohol, although I had ataxia and an altered mental state.   Doctors don't think outside the box!   I went home and took thiamine.  I had improvement in my symptoms within an hour.  High doses of thiamine are required to correct Thiamine deficiency.  Thank God I had studied nutrition, microbiology, and the research of Dr. Derrick Lonsdale and Dr. Chandler Marrs.  ("Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition" is Drs. Lonsdale and Marrs' book.).  And I've kept learning and sharing that knowledge to help others.   It's wonderful you've been supplementing with vitamins so long!  Don't worry about the bright yellow urine.  That's excess Riboflavin B 2.  Interesting note, Riboflavin glows under black light!  Those lights used to detect where pets have soiled outside of the box, that's the Riboflavin in urine glowing.  Riboflavin can be put in sugar syrup when making rock candy and it will glow under black light.  Fun for Halloween. I hope you feel better, @Oldturdle.  If I can be of further help anytime, you can send a personal message here.  Thanks for reading my posts.  P.S. Thiamine deficiency and Wernicke's Encephalopathy are completely reversible if treated promptly with high dose Thiamine.
    • DebJ14
      Newly Diagnosed

      By DebJ14 · Posted

      Migraines ran in my family, on my father's side.  All of my female first cousins on that side, and our grandmother suffered from Migraines.  Grandmother died in 1984 so we do not know if she ever would have been diagnosed with celiac disease. However, all 4 of us cousins were diagnosed with celiac disease between 2003 and 2007.  The dermatitis herpetiformis rash is a blistery, super itchy rash.  When they do the biopsy they take it from non-involved skin that is next to the rash.  If done wrong, the results may not be accurate.  Have you ever had one done? In that case, I agree that maybe she has you still on gluten for a biopsy.  But, if she has not ordered it nor referred you to a gastroenterologist, then I would question her advice.  
    • trents
      Newly Diagnosed

      By trents · Posted

      Scott Adams makes an excellent point about the possible pending scope with biopsy being the reason you were advised to keep eating gluten, @NCalvo822! You might want to get some clarification about that. What you don't want to happen is to go gluten free and then have to go back on gluten at some point in order to produce valid scoping/biopsy results.
×
×
  • Create New...