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

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

Rachel--24 Collaborator
Sorry, another question: should I continue the Myer's cocktail? My nutritionist highly recommends it.

Have you had testing to verify deficiencies? How do you feel after you've had it? I do think it can be very beneficial if you're body is deficient and to support your immune system.


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
tabasco32 Apprentice

Hey everyone! Good to see ya.

Well it's so hot here already in beautiful Fresno California. :P NOT!!!

I think 75 or 80 degrees. I have no air in my car so that's like a steam room to me right now.

I'm sweating all this stuff out and It makes me feel good. Though I am having this strange kind of arthritis pain in my neck and shoulders and hands but that's it. Oh and some bubble guts due to well, you know. Oh and some brain fog and more eye floaters.

So yeah Carla I was actually working on That YouTube thing. For real. So if anyone is interested, oh maybe not Donna. Yeah she won't open it so I guess I will just have to change my avatar daily so she can see pics of it. :D There's no way around it now Donna.

Do you think I can get in trouble for that? <_<

Must do it under a different alias. ;):)

Nyxie63 Apprentice

I just checked. There are already videos on ecoffee on youtube already.

Dunno whether to be pleased or shocked. :huh::o:lol:

Rachel--24 Collaborator

Haha...poor Donna...she'll b tortured with YouTube videos and demonstrational avatars! :o

Yeah Lisa....I think you might get in trouble for that! :P

Did all the Lymies get Scotts new newsletter? Its got some good stuff in it. He always gets to do all the fun stuff...I'm jealous! :lol:

I liked how he said that the Dr. K. events are like going to Disneyland. I bet they are!! I feel the same way about Dr. Amy's visits...I would be soooo excited to see Dr. K!!

I'm SO looking forward to my appt. on the 24th...and its always nice to see Scott as well. :)

Theres are links to his recent articles....including his interview with Dr. Cowden. Some info. about Enula for Babesia in the article.

Anyone who wants the newsletter....let me know and I'll forward it to you.

itchygirl Newbie
I had a stool test run, but didn't see the fine print about eating 60 grams of fat a day while on the test, so fecal fat came back fine. *headsmack*

Never had trypsinogen tested.

I do, however, have gallbladder-like symptoms when eating higher fat meals although tests can't find anything wrong with my gallbladder.

I had to do 100 grams of fat a day for three days before the test and 100 grams a day for the three days of the test. The only way I could do that much fat was to eat whole cartons of haagen daz! :lol: Have you had an MRCP with secretin? Or just the HIDA test?

Rachel--24 Collaborator
I just checked. There are already videos on ecoffee on youtube already.

Dunno whether to be pleased or shocked. :huh::o:lol:

:o:o

I dont think I wanna see them. :P

I'm totally up for seeing all kinds of parasites and other "unpleasant" things....but ecoffee?? Nah....I think I'll have to pass. Its not alot of fun doing them....and I imagine alot less fun watching someone else do it. :ph34r:

Nyxie63 Apprentice
I had to do 100 grams of fat a day for three days before the test and 100 grams a day for the three days of the test. The only way I could do that much fat was to eat whole cartons of haagen daz! :lol:

OMG! 100grams? I would have been in such agony! Then again, Haagen daz...... mmmmmmmm. :D

Have you had an MRCP with secretin? Or just the HIDA test?

Just the HIDA scan.


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



Celiac.com Sponsor (A8-M):



Nyxie63 Apprentice
:o:o

I dont think I wanna see them. :P

Thinking I was probably right not posting the links then, huh? :D :D

AndreaB Contributor

Rachel,

Could you please send me Scott's newsletter. I'd like to see the Cowden article. :)

tabasco32 Apprentice

That's it. :huh: Just a whole carton? I should have bought into share's of HD ice cream! Oh and SFF ice cream too. Oh yeah count me in on the Dr. Cowden protocol. Does anyone here take cellusure?

Rachel--24 Collaborator

Andrea...I just sent it to you. :)

LoriG Contributor

Rachel,

Thanks for your help. A lot to think about!!

I've had 2 Myers and have felt awful after both. Not sure what that means?! A detoxing perhaps? No, I have never had blood testing for deficiences, only energetic testing.

To complete what you said about assuming what is wrong - my husband told me tonight he is tired of me doing that and I need to get tested right for these things. So please lay it out for me clearly what are the best tests for?

Heavy Metals - ( I know provoked urine and hair analysis to verify, right?)

Candida - blood antibodies: what is it called? maybe MD could run it

Parasites/Bacteria Infections - stool test? does it matter which one?

Leaky Gut - your above mentioned urine test

Food Allergies - Elisa if I decide to do that

Vitamin/Minerals - any particular one here? just one MD runs covered by insurance?!

You are so helpful! THANK YOU!!

Rachel--24 Collaborator
That's it. :huh: Just a whole carton? I should have bought into share's of HD ice cream! Oh and SFF ice cream too.

Yeah...for me it was Stoneyfield! OMG...those were the days!! I ate cartons of the stuff daily....for about 9 months straight. :D

Course....thats when my yeast antibodies were through the roof. <_<

Oh well....I was definately liking it....even if I was almost non-verbal most days. :lol:

Rachel--24 Collaborator
Heavy Metals - ( I know provoked urine and hair analysis to verify, right?)

Candida - blood antibodies: what is it called? maybe MD could run it

Parasites/Bacteria Infections - stool test? does it matter which one?

Leaky Gut - your above mentioned urine test

Food Allergies - Elisa if I decide to do that

Vitamin/Minerals - any particular one here? just one MD runs covered by insurance?!

Lori....I'll be back later with a list of some good labs for testing these things. I'm out the door right now. :)

LoriG Contributor

itchygirl, Yes you see an associate of Mercola's trained by him for $2700, which covers 2 days of visits/tests

Rachel, By the way, what IS the CAUSE of leaky gut? Your reasoning sure makes a whole lot of sense, but how do you test the cause of it?

CarlaB Enthusiast

I saw Scott's newsletter.

I'm doing okay on the enula .... the day after the first day, I felt horrible .... so it must work.

Green12 Enthusiast

Welcome itchygirl :)

Did all the Lymies get Scotts new newsletter?

I got it, haven't read through it yet though.

Rachel--24 Collaborator
Rachel, By the way, what IS the CAUSE of leaky gut? Your reasoning sure makes a whole lot of sense, but how do you test the cause of it?

There is not one single cause for leaky gut....alot of things can cause or contribute to leaky gut. For example if mercury were to suppress the immune system it can create an imbalance of good/bad bugs in the gut. Antibiotics, poor diet, alcohol, chemicals, etc. can all make the situation worse.

If you have an overgrowth of yeast it can cause leaky gut. If you have parasites...they can cause leaky gut. Dysbiosis (pathogens in the gut) is a cause of leaky gut which then leads to food intolerance. Food intolerance causes even more inflmmation/damage to the gut.

It can be a vicious cycle. It would be alot easier to correct if there were only one cause for leaky gut (such as gluten intolerance) but thats not always the case. It can be several things going on but the main thing is that the immune system is suppressed....allowing for all of this to occur.

Heres a list of some things that can contribute to leaky gut...

Overuse of antibiotics, steroids, NSAIDS (aspirin, ibuprofen, etc)

Poor diet - high in refined foods and sugars and nutritional deficiencies

Incomplete digestion

Heightened exposure to environmental toxins

Stress

Parasitic infestations

Antibiotics because they lead to the overgrowth of abnormal flora in the gastrointestinal tract (bacteria, parasites, candida, fungi)

Alcohol and caffeine (strong gut irritants)

Foods and beverages contaminated by parasites like Giardia lamblia, cryptosporidium, blastocystis hominis and others

Foods and beverages contaminated by bacteria like helicobacter pylori, klebsiella, citrobacter, pseudomonas and others

Chemicals in fermented and processed food (dyes, preservatives, peroxidized fats)

Enzyme deficiencies (e.g. celiac disease, lactase deficiency causing lactose intolerance)

NSAIDS (non-steroidal anti-inflammatory drugs) like ASA, ibuprofen, indomethacin, etc.

Prescription corticosteroids (e.g. prednisone, hydrocortisone, DepoMedrol, etc.)

High refined carbohydrate diet (e.g. candy bars, cookies, cake, soft drinks, white bread)

Prescription hormones like the birth control pill

Mold and fungal mycotoxins in stored grains, fruit and refined carbohydrates

Green12 Enthusiast
So yeah Carla I was actually working on That YouTube thing. For real. So if anyone is interested, oh maybe not Donna. Yeah she won't open it so I guess I will just have to change my avatar daily so she can see pics of it. :D There's no way around it now Donna.

Thinking I was probably right not posting the links then, huh? :D :D

:lol::lol:

Donna R U N!!!!!!!!!!!!!!!!!!!!!

confusedks Enthusiast
I hope everyone else is doing well. Kassandra, I hope you get dinner tonight. ;)

LOL! I don't think I will. My mom is working all day. Unless she surprises me because I'm having a really bad day. :(

Yeah...for me it was Stoneyfield! OMG...those were the days!! I ate cartons of the stuff daily....for about 9 months straight. :D

You guys have to stop it! I am really considering challenging dairy and all this ice cream talk is KILLING ME! LOL! :lol:

Everyone,

I went this morning nice and early (had to wake up at 7.30 to get to the lab by 8.30 :o ) to have my blood drawn. They took 7 tubes! :o They never take that much from me because I am always so anemic, it doesn't do me any good. She had my lay down because I said something about passing out, lol. I was fine, but my arm is really hurting me now.

I then came home and ate, watched a little TV and decided all the light was bothering me, and I wanted to lay down. Well, I fell asleep for 4 hours! :unsure::o I just woke up! :D I guess I was really tired. I am in a bad mood again, lol. I MUST be herxing. I am just feeling overall yucky.

I think I am anemic again. I can never take naps like that unless I am really anemic. Oh, and I've been going to starbucks every chance I get for their iced teas because they have the BEST ice. :lol:;)

dlp252 Apprentice

Yeah, I got Scott's newsletter but haven't printed or read it yet.

Forgot to say welcome to ItchyGirl! Welcome!!

Do you think I can get in trouble for that? <_<

Must do it under a different alias. ;):)

Haha...poor Donna...she'll b tortured with YouTube videos and demonstrational avatars! :o

Yeah Lisa....I think you might get in trouble for that! :P

Yeah, definitely not on a site like this, lol. Phew...might have to BLOCK you Lisa. :lol:

I just checked. There are already videos on ecoffee on youtube already.

Dunno whether to be pleased or shocked. :huh::o:lol:

:o :o Wow, good thing I don't hang out on YouTube, lol.

I had to do 100 grams of fat a day for three days before the test and 100 grams a day for the three days of the test. The only way I could do that much fat was to eat whole cartons of haagen daz! :lol: Have you had an MRCP with secretin? Or just the HIDA test?

Egads, I eat 100 grams of fat nearly every day! :o

Its not alot of fun doing them....and I imagine alot less fun watching someone else do it. :ph34r:

See, that's what I'm talking 'bout.

Donna R U N!!!!!!!!!!!!!!!!!!!!!

Running shoes all laced up. :P

itchygirl Newbie

I've never had the myers but have had vitamin infusions and I think they are supposed to leave you flushed, sweaty and generally icky. The myers has a lot of B vites, right?

Re: Mercola-When you think about it $2700 is not much for two days of tests. I mean, the last time I was in the hospital this spring the total cost was over $30,000 and that was one just proceedure with minor complications. As a regular consumer of medical services I can say with all honesty that I'd happily pay $2700 to actually have some medical professional actually pay attention to me :lol:

I've had 2 Myers and have felt awful after both. Not sure what that means?! A detoxing perhaps? No, I have never had blood testing for deficiences, only energetic testing.
truthsearcher Rookie

Just a few comments

To itchygirl

Yes I have low pancreatic enzymes of Chymotrypsisn which is a key pancreatic enzyme for protein digestsion and Elastase.

I had my tests done through Genova. My report reads that low pancreatic values may reflect pancreatic insufficiency, inadaquate stomach acid for enzyme activation, or prolonged transit time.

Lori,

I don't know if everyone else would agree but I would definitly get the 6 hours provoked urine test.

The 24 hr one is not as reliable says my LLMD. I had a hair test and 24 urine done just after I had my amalgams removed and no mercury showed up. No elevations in metals on the hair and

my 24 hour test showed high lead and aluminum being the highest of them all. Arsenic and cadmium up there as well.

My 6hr provoked urine test (done just 2 weeks ago) showed high lead and mercury! I knew mercury was there d/t the dozen or so fillings I use to have but lo and behold the mercury finally showed up.

I don't know what the exact numbers are right now I have an appt first week in April to discuss the results.

hth

truthsearcher Rookie

Oh and I wanted to say...

For those who just cannot hold a ecoffee or any e for that matter. My GI told me that if you have a Mega colon ( a colon that is stretch out, lost it tone d/t impaction or prolonged Constipation) you could lose the ability to hold liquids.

I had a menomometry sp? test done and this tests the ability to feel the "urge" for a bm and mine was way below normal so my lower part is all stretched out I can only do a ecoffee if I go really slow and stop for breaks and even then can only get 2 cups at the most in me.

hth

Rachel--24 Collaborator
Lori,

I don't know if everyone else would agree but I would definitly get the 6 hours provoked urine test.

I agree....I've only done 6 hour tests following a dose of IV DMPS. I think 24 hour tests might be too diluted.

The 24 hr one is not as reliable says my LLMD. I had a hair test and 24 urine done just after I had my amalgams removed and no mercury showed up. No elevations in metals on the hair and

my 24 hour test showed high lead and aluminum being the highest of them all. Arsenic and cadmium up there as well.

Most people who are mercury toxic wont have it showing up in hair. Other metals can show up in hair...but mercury usually does not. The hair analysis is definately useful as it can identify the probability of mercury toxicity even when there is no mercury coming out. If the essential minerals are out of balance its a pretty good indicator that mercury is an issue. Especially calcium, magnesium and zinc.

Dont get the hair analysis expecting to see mercury and dont rule out mercury when you dont see it...the mineral profile can be very useful.

Also....dont rule out mercury if its not coming out in initial provoked urine challenges...or if the amount excreted is within reference range. The body doesnt always readily excrete mercury....it can take some time to start showing up. It may also depend on the type of chelator used for the test.

Its not uncommon to see other metals coming out...with mercury not showing up until later on.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,865
    • Most Online (within 30 mins)
      7,748

    Atasha
    Newest Member
    Atasha
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Villi damage is caused by celiac disease, which does not happen in NCGS, although some people with NCGS do have elevated antibody levels. Some people with NCGS who have the genes for celiac disease may end up developing celiac disease, so in some people NCGS may be a precursor to celiac disease, but more research needs to be done on NCGS. Both low iron and vitamin D are common symptoms of celiac disease. Also, regarding beer:  
    • Scott Adams
      It’s true that some vaccines contain small amounts of preservatives, stabilizers, or adjuvants to ensure their safety and effectiveness. For example: Thimerosal: A preservative that contains ethylmercury (not to be confused with methylmercury, which is toxic). Most routine vaccines no longer contain thimerosal, except for some flu vaccines in multi-dose vials. Aluminum: Used in very small amounts as an adjuvant to boost the immune response. The amount is far below levels considered harmful, but if you suspect an aluminum allergy, it’s worth discussing with your doctor. Sugar alcohols: These are sometimes used as stabilizers, but they are generally well-tolerated. If you have a known intolerance, you can ask about specific ingredients in each vaccine. Since you mentioned an intolerance to metals and jewelry, it’s a good idea to follow up with allergy testing, as you planned. This can help identify specific metals (e.g., nickel, aluminum) to avoid. Your doctor can then guide you on whether any vaccine ingredients might be a concern. Since the Mayo Clinic has already identified potential allergies, it might be helpful to consult an allergist or immunologist. They can review your medical history, perform tests, and provide personalized advice on vaccines and their ingredients. While it’s important to address your intolerances, it’s also worth considering the risks of not being vaccinated. Many vaccine-preventable diseases can have serious consequences, especially for those with underlying health conditions. 
    • knitty kitty
      @Manaan2, I was on Miralax for several months after I crushed three vertebrae and fractured my hip.  The compression fractures of my vertebrae affected the Vagus nerve that stimulates digestion and intestinal movement, peristalsis. Miralax just didn't relieve the constipation I was experiencing at all.  Nothing budged.  I tried Milk of Magnesia (magnesium oxide) which pulls water into the digestive tract, and found that rather harsh and dehydrating.   Bad idea. I was already taking thiamine in various forms, Benfotiamine, TTFD (tetrahydrofurfuryl  disulfude), Lipothiamine and Allithiamine.  Click on my name, then Activities in the pull down menu to get to my blog to learn more about my journey with thiamine.   Since we need more thiamine when we are physically ill and emotionally stressed, I decided to focus on TTFD,  Benfotiamine, and magnesium l-threonate.  Within a week of increasing my doses a bit, my constipation was gone.  It took several more months to heal the compressed nerve damage.  For pain, I take a combination of TTFD, Pyridoxine B 6, and  Cobalamine B12 which together have an analgesic effect.  I can't function with pharmaceutical pain killers, besides they cause constipation.   Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Yes, I did just stop the Miralax, but I wasn't on it as long as your daughter.  Yes, there's a difference between adults and children.  Yes, my circumstances were different than your daughter's, but thiamine deficiency does affect the nerves and the brain.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function (which activates the Vagus nerve and controls digestion).   I recommend you visit Dr. Chandler Marrs' website, hormonesmatter.com.  Dr. Marrs worked with Dr. Derrick Longsdale, a pioneer in thiamine research, specifically with children and autism spectrum disorders.  She has been very helpful to me when I reached out to her.  She would be better able to guide you about your daughter's care. https://hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/#google_vignette Do stay in touch, please.  You can start another thread or personal message me any time.  My heart goes out to you, your husband, and especially your daughter.   Namaste
    • Manaan2
      @knitty kitty  The information you've provided is invaluable!  I have a lot more homework to do before we make the official switch but you have significantly increased my hope that we can get her off Miralax (she started at 3 years old and is almost 8!).  This weekend my husband and I plan to solidify all the details for a start point, then adjust as we go along.  I realize that everyone's body is different, then there's also the fact that she's a child but just out of curiosity if you don't mind sharing and if you'd rather not, no problem at all-how long did you take Miralax before switching and when you switched, did you just completely stop the Miralax or was there a period where you did Miralax and the supplements?  I plan to research that piece this weekend but just curious what you did.  
    • BIg Nodge
      Scott, thanks so much for the thoughtful replies. My doctor did actually just re-order thyroid labs to see what is going on with my TPOs. I agree that will be interesting information.  I think I know the answer to this, but as far as the biopsy . . .. that would be quite conclusive as far as celiac goes, but a negative result would not rule out NCGS, correct? Does NCGS also cause damage to the lower intestine/leaky gut?  I appreciate the thought that I should be open-minded to other causes. I did not have dysautonomia on my radar, so I will look into that. From a quick scan at the potential symptoms it seems like almost anyone could convince themselves they have it, very broad! I can see why that is a tricky one to diagnose. I did also show low vitamin D, I'm in New England so that is somewhat common. I have a memory of low iron on some lab result as well but I can't find it, so I'll look into that. My cholesterol is high too, so working on that.  While the initial adjustment was tough, I have actually adapted fairly well to going gluten-free at home. The tough part for me is I love eating out and traveling, so that has been a challenge. I suppose if the answer ends up being NCGS then I could maintain a mostly gluten-free diet but also experiment with the occasional splurges. Snowboarding just doesn't feel right without a beer in the lodge . . ... cider is just not the same!  Thanks again.  
×
×
  • Create New...