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

Omg...i Might Be On To Something

Rachel--24

Recommended Posts

aprilh Apprentice
aprilh
Posted
Update... I saw the hematologist and he wants me to start Iron IV's on Monday. We have to wait for insurance approval also. He would have started them tomorrow, but I'm going to Lake Tahoe.

It was a little tense about the port, he wanted to know why I have one, and which Dr had me get it. But then he was okay.

He did say he wants me to go to a GI Dr because he thinks I may have an internal bleed or be malabsorbing. Dr H says it's Babesia related, even he has said that it seems weird the numbers aren't changing at all....they just keep getting lower and lower.

The next Dr I see will be a GI Dr. We have wanted to do this for a while, but haven't really had the chance. I did get the name of a Lyme Literate GI here in LA. Hopefully that will help some...

He doesn't think its due to having your period for so long?

Its probably multifactoral - Babesia, malabsorption, never ending periods.....

Hope they figure it out soon! How are you feeling now after your last procedure?

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

Celiac.com Sponsor (A8-M):


  • Replies 33.4k
  • Created
  • Last Reply
aprilh Apprentice
aprilh
Posted

great info on Zeolite. i am definately going to look into this. Hopefully its not too expensive.

So Carla and Lisa are on it....anyone else?

AndreaB Contributor
AndreaB
Posted
The next Dr I see will be a GI Dr. We have wanted to do this for a while, but haven't really had the chance. I did get the name of a Lyme Literate GI here in LA. Hopefully that will help some...

Sounds promising.....

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel, Zeolite will pick up anything with a negative charge because it has a positive charge. Here's a quote from Nutramedix:

Thanks Carla. :)

Now I have to think about this....hmmmm...do phenols have a negative charge?? :huh:

Does anyone recall the brand of Zeolite that Lisa refers to?? I guess the next thing to find out is whats in it. Hopefully it doesnt have all those vegetable ingredients!! I would want to have Amy test it if I can find some.

Bacteria and yeast produce phenols....so I dont know if thats why the load always seem high....but it would definately be nice to lower the burden some. Even though I'm not feeling terrible....I would still like to someday be able to eat more foods!!

I feel like I'm always close to my threshold.

It was really bothering me that I was able to eat alot more foods for that one month earlier in the year....and then I went backwards. I thought it was the copper for awhile....but now I dont think so.

Before Xmas I was mainly eating the beef and peas...and not much else. I was wondering if possibly my phenol load was reduced because of my diet....and the fact that it wasnt really fueling the "bugs". So maybe a few weeks of eating all the good stuff....and feeding the infections....and then that was it...my bucket overflowed??

Whenever I eat alot of sugar (like back when I was existing off of ice cream)....then my tolerance level goes way down. I dont "react" to sugar...but eventually I notice that I have zero tolerance for the veggies, fruits, perfumes, etc. I never reacted to the ice cream...not like I react to fruits or veggies....yet my bucket was still overflowing.

The only thing I can think of is that it might be the bugs which are causing the phenol overload in the first place. I know I have dysbiosis....my last CDSA (from 3 years ago) showed that I had no growth of beneficial bacteria. The two most important strains for good health....and they were totally absent from my sample. I was taking lots of probiotics at the time...but obviously they werent sticking. :(

That was when I was basically self treating....so the problem never got resolved. If the "good guys" are gone.....then *something* has to be taking their place. <_<

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
It doesn't hurt to try and it may even help.:)

Lisa....what are the ingredients?

That would be great if you can find out about phenols. He may not know....it seems like alot of doctors arent knowing too much about phenols right now. Dr. Amy was pretty surprised at how little anyone knows about it....especially since it seems to be a pretty significant problem for alot of people...and especially the ASD kids.

Even if he doesnt know I'd still be willing to try it....as long as its not from chlorella or something else that I cant handle.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I did get the name of a Lyme Literate GI here in LA. Hopefully that will help some...

Hey...I didnt know there were some LLGI's out there!! Very Cool! :D

Hopefully he'll be able to figure something out for you.

I am always glad to drop by and learn something new, thanks for the information on the zeolyte, I am going to look into it further.

I will assume that MMS is not something anyone here has taken.

Hi Rinne :wub:

Nope....I dont think anyone here has tried MMS. There's alot of info. about it on LymeNET...several people have tried it. Not sure if you wanna venture over though. :ph34r:

So you ate all the Rinne bars huh?? :lol:

Shheeeesh....I'm planning on ordering my 10 cases by the end of this year....if you keep eating them how are you gonna fill my order?? :P

rinne Apprentice
rinne
Posted
Hi Rinne :wub:

Nope....I dont think anyone here has tried MMS. There's alot of info. about it on LymeNET...several people have tried it. Not sure if you wanna venture over though. :ph34r:

So you ate all the Rinne bars huh?? :lol:

Shheeeesh....I'm planning on ordering my 10 cases by the end of this year....if you keep eating them how are you gonna fill my order?? :P

:wub:

:lol: I may have to come to California to fill that order. :P:lol:

I don't know about venturing over to Lyme Net, I have limited tolerance for misery of any sort! Conflict and I don't agree but I am curious.

I did a little internet search about MMS and found a link to salt and the benefits of salt which reminded me of when I was taking salt in a big way and how it increased my energy. I really do think that many of our health problems can be remedied by renutrifying our bodies and that logically many of our health problems are caused by a lack of the correct nutrients.

At the same time.......

It is interesting to me that I know I am not a 100% yet I have the energy to work 12 hour days, it feels like I have come up through my body in a different way, that probably doesn't make sense. Another try. it is like my illness took me underneath my story and I found another way to come up through my story to life and energy again, and again that may not make sense. Mmmmm.......

I miss you all, I wish I had a little more time to hang out here.

:wub:

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

Celiac.com Sponsor (A8-M):


tabasco32 Apprentice
tabasco32
Posted
Thanks Carla. :)

Now I have to think about this....hmmmm...do phenols have a negative charge?? :huh:

Does anyone recall the brand of Zeolite that Lisa refers to?? I guess the next thing to find out is whats in it. Hopefully it doesnt have all those vegetable ingredients!! I would want to have Amy test it if I can find some.

If it is toxic it could but zeolite helps with everything from cholesterol to blood sugar levels.

It doesn't have vegetable ingredients. It is a mineral from the cliptilolite family. In nature the zeolite captures toxins.

Zeolite is not from algae or any other source.

I get mine from Waiora.

www.mywaiora.com/534173 go here and it will talk more about zeolite. It won't hurt you and there is no side effects.

AndreaB Contributor
AndreaB
Posted

It's always good to see you when you pop in Rinne. :D:wub:

Course with you working those kind of hours maybe I should start my mother hen worrying. ;)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
It is interesting to me that I know I am not a 100% yet I have the energy to work 12 hour days, it feels like I have come up through my body in a different way, that probably doesn't make sense. Another try. it is like my illness took me underneath my story and I found another way to come up through my story to life and energy again, and again that may not make sense. Mmmmm.......

LOL...Rinne....I think I "get it". :P

I think its probably alot like what I've experienced. I dont *feel* so sick anymore. Even though I've been back to work fulltime for 3 years now...I was still kind of "bogged down" by everything. I still felt like I was so very 'different' from everyone else around me. It was always on my mind.....mainly because I still felt "off" most of the time.

I feel like something happened at some point...and I broke through. I sort of feel like I'm part of this world now.....and I LIKE it. :D

Does that make sense? :unsure:

I miss you all, I wish I had a little more time to hang out here.

:wub:

We miss you too....its nice that you're still able to pop in now and then. :wub:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
It doesn't have vegetable ingredients. It is a mineral from the cliptilolite family. In nature the zeolite captures toxins.

Thanks Lisa. :)

Now I just have to find out what the "cliptilolite family" is. :lol:

I'm gonna look into this. If I can get some....I can have Amy test it for the phenols and see if it helps.

rinne Apprentice
rinne
Posted
It's always good to see you when you pop in Rinne. :D:wub:

Course with you working those kind of hours maybe I should start my mother hen worrying. ;)

:wub: Don't worry, I think I have found the way to pace myself, I suspect it is a little like motherhood! The funny thing is some of the regulars, old men of 70 call me mother. :lol:

I am always so glad to find you here Andrea. :)

LOL...Rinne....I think I "get it". :P

I think its probably alot like what I've experienced. I dont *feel* so sick anymore. Even though I've been back to work fulltime for 3 years now...I was still kind of "bogged down" by everything. I still felt like I was so very 'different' from everyone else around me. It was always on my mind.....mainly because I still felt "off" most of the time.

I feel like something happened at some point...and I broke through. I sort of feel like I'm part of this world now.....and I LIKE it. :D

Does that make sense? :unsure:

We miss you too....its nice that you're still able to pop in now and then. :wub:

Yes, it does make sense. :)

To me it seems like leaning, leaning, leaning towards health and finally health arising as the predominant state. The leaning including acupuncture and nutraceticals and ....detoxifying and renutrifying.

I've thought about it alot recently, probably connected to spending time with my friend on palliative care, he wants to know how I returned to health, clearly because he is hoping to find a way to return himself to health.

I don't know if he will and I fear that part of what makes it more difficult for him and for all of us around him is a diagnosis of impending death, that has such power.

I know I have said this before but I feel so strongly that Rachelville has played an enormous part in my recovery, it has been healing to have my reality acknowledged and to know that my healing was supported in a real way, it changed my life and how strange and wonderful is that? :)

I am really tired and need to sleep so will say good-night but always I am grateful to find you here, I treasure that I am remembered within this context and you are all important to me.

:wub: :wub:

mftnchn Explorer
mftnchn
Posted
Sherry-- I've passed on the info for translation, she'll get to it soon, she just started teaching classes this week though, so it may be awhile, but i have a hunch it'll be sooner rather than later, i'll post!

thanks, it's greatly appreciated!

Sherry

CarlaB Enthusiast
CarlaB
Posted
Now I have to think about this....hmmmm...do phenols have a negative charge?? :huh:

:lol: yeah, I know, LOL. I did a quick Google when I made my post and didn't come up with anything.

I get my zeolite from Nutramedix. I use the HP because I already used the regular zeolite. They have been energetically charge to pick up different metals.

Zeolite is a volcanic rock. The only other ingredient in mine is fulvic minerals (well the capsule and water, too).

confused Community Regular
confused
Posted

Lisa,

Thanks for all the info on zeolites. I really think I am going to look in to it. I like the idea that there is no side effects.

Rachel.

Im glad i make u smile when im having good days. I even went rollerbladding last night to, well before i had spaghetti that killed my stomach. I guess i should of taken those pills huh lol.

Everyone,

Does anyone know if taking charcoal makes the detox pads even darker then before. I ran out of the green teas ones and last night used the gold ones. Well this morning i woke up and they were pitch black. So Im not sure to say its from the charcoal or maybe just this pad is more powerful and it took out more toxins then the green tea one.

Does anyone know if donna is back from vegas. I havent seen her post.

paula

AndreaB Contributor
AndreaB
Posted

I thought she was only going to be there a few days (Donna). Don't remember when she said she'd be home though.

aprilh Apprentice
aprilh
Posted
I am always glad to drop by and learn something new, thanks for the information on the zeolyte, I am going to look into it further.

I will assume that MMS is not something anyone here has taken.

Thanks Lisa. :)

Now I just have to find out what the "cliptilolite family" is. :lol:

I'm gonna look into this. If I can get some....I can have Amy test it for the phenols and see if it helps.

I think its dried lava so I wouldn't think that would be from the phenol family....not sure though.

What does MMS stand for? I had not heard of that.

aprilh Apprentice
aprilh
Posted

Paula,

You sound very energetic on your good days! You are very active with the kids which is great! :lol:

Did you do regular spaghetti or gluten free? Regular spaghetti makes me bloat. We do the gluten free Tinkyada, but I still TRY to only eat a small amount since its full of carbs - i figure it will feed yeast.

I ususally watch out for citric acid in tomato sauce - its usually made from fungal sources instead of vitamin c like it used to be. I have found a brand that doesn't have citric acid in it.

I don't think the charcoal would make the detox pads darker. Could be that it pulled more toxins.

Are you seeing good results with the detox pads? They had a show on 20/20 about pads like that. Of course they discounted them. I don't always trust the info from shows like that. So, if others here recommend - I might try them! :D

April

AndreaB Contributor
AndreaB
Posted
I ususally watch out for citric acid in tomato sauce - its usually made from fungal sources instead of vitamin c like it used to be. I have found a brand that doesn't have citric acid in it.

We use Eden Organic. It doesn't have citric acid.

confused Community Regular
confused
Posted

April,

I really like the detox pads. I had got some before these ones that i liked, but these ones i love. This are the ones that scott recommends on his website. My mom also wanted some of the grapefruit seed ones for weight loss. She was 163 and now weighs 154 and been on them about 10 days. She even has more energy and happier the last few days lol.

I also had gluten free pasta. I didnt even think of the citric. i always forget about things that are not gluten, casein and soy related lol. I also had 2 huge plates full cause i was craving it so bad.

Last night i was crying and told hubby i was just going to eat lara bars and ruffles the rst of my life. I seem to be fine on these 2 things lol. He told me i had to be patient and one day i will be eating like everyone else lol

paula

rinne Apprentice
rinne
Posted
What does MMS stand for? I had not heard of that.

It stands for Miracle Mineral Supplement, if you google that there's lot of information out there. :)

Green12 Enthusiast
Green12
Posted
It stands for Miracle Mineral Supplement, if you google that there's lot of information out there. :)

Hi rinne, good to see you :) I could have sworn we had conversations about, or someone popped in and was asking about MMS (maybe forum member Ken70?).

Paula, glad to hear you've had some good days. Could simply be the rice in the rice pasta, I know Mia has troubles with it, I now can't have rice. Have you tried a rotation diet?

I thought Donna was getting home yesterday, or today, can't remember :huh:

Sherry, I am going to be taking very large doeses of Vit D also. My Dr has come across studies finding a connection between HAE and Vit D levels.

mftnchn Explorer
mftnchn
Posted

Julie, I sure hope the Vitamin D helps. I've been on 2000 since February, and 6000 since 6/16 and my test 2 weeks after the increase showed me at 56. I just picked up the result today. My allergist told me that 50 in the minimum (but the lab test says 30 and above and that is the outdated info). I have been relatively stable so far in terms of symptoms since the increase...but with me it is unpredictable.

My sense from reading is that the autoimmune system gets out of wack when the D is low. Also my sense is that you could have a flare of symptoms or herx from increasing your Vitamin D, while the immune system re-regulates.

Sherry

mftnchn Explorer
mftnchn
Posted

Got some of my lab tests back today. The Rosemed (gut panel) is similar to last winter, some things better some things worse. PCR for babesia was negative. Vitamin D is improving, has just reached minimal levels according to the new standards.

Carla, does your LLMD test for babesia or only go by symptoms?

Sherry

CarlaB Enthusiast
CarlaB
Posted

My LLMD tests, but ultimately goes by symptoms. My tests for babesia were negative. The thing is, they don't test for all the strains, that's why testing is so unreliable.

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 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...
    2. 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...
    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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • 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?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.