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

Green12 Enthusiast

Lori,

Any possibility you can find a dentist in your area that has knowledge about and lots of experience with safe amalgam removal??

Forgot to mention something random earlier, we talked about heartburn a while back (how so many here on the forum had developed it).

I started to get really bad heartburn within the last 5 years along with the progression of my angioedma condition and it got worse with time. I had it regularly, pretty severe with esophogial spasms.

Since I started taking the charcoal I haven't had one episode. :huh:


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
AndreaB Contributor
I started to get really bad heartburn within the last 5 years along with the progression of my angioedma condition and it got worse with time. I had it regularly, pretty severe with esophogial spasms.

Since I started taking the charcoal I haven't had one episode. :huh:

Wow! :o So what do you make of that? Sounds like the charcoal likes you.......or you like it. :)

mftnchn Explorer

Hello, everyone. Trying to keep up reading along to some degree, I've just had too much going on to post.

Welcome Lori. You've gotten some good advice here. Just a couple of things to add: It will not really be possible to chelate effectively as long as you have dental amalgams. So I'd probably look at a plan to begin removing and replacing those before heavy chelation.

Meanwhile, along with chlorella which binds mercury really well, I'd suggest trying activated charcoal at bedtime or the middle of the night away from other things. It isn't terribly expensive and it will help bind the metals.

The fatigue is a hard one to trace because of so many possible causes. Food allergies can cause it too, so I'd keep working along with your nutritionist because you might just hit on something that helps.

You could try ecoffee and see if it helps. Recent posts here talked about why it helps and maybe that would be a clue to you if you responded.

I have some similarity to you, but I have also had joint and muscle pain, and have lyme disease. I have celiac, lyme, metal toxicity as my major issues, plus allergies.

Sherry

mftnchn Explorer

Quick update. I'm dealing with a lot of stress just from multiple demands. Meanwhile some further progress on testing and treatment:

Feeling a bit better, with a little bit of herx symptoms here and there. Had a huge hassle trying to get Zithromax or a generic that the pharmacy could (or would) confirm was gluten free. That whole situation had me hopping mad. My hubby says the US medicine is become like a third world country.

Anyway, my Vitamin D, 1, 25 Dihydroxy was 16 (Range 15-75). So also points to very low normal. Also my LLMD gave me another test kit today to do further stool malabsorption testing. He said the Enterolab is only testing fat, which is good so far as it goes. He wants to see the proteins, sugars, etc. So I sent that off today. I see him next week to review everything, that is an important appointment and my last with him before I leave for China. My last appointment with Dr. E is 3/12.

Off the Levaquin, I am sleeping better (first ambien free night last night), better BMs, less yucky feeling all the time, and no nausea. Had a couple of spells of significant pain since starting the zith, but don't last too long. The binders seem to help, so I think it is detox.

I ran out of the andrographis capsules over a week ago and am still waiting for delivery, hopefully tomorrow. When I get that in, I'll be on the full protocol Dr. E found tested well, and maybe I'll have even more herxing.

My LLMD also suggested I check to see if there is hyperbaric oxygen chamber treatments in China. One of his autism patients is Chinese, and apparently they were able to go back to China and get these done really cheaply.

Anybody know anything about this for lyme? I think my LLMD wants to move to focus less on the "torpedo approach" he called it, and more on general healing because we have been at this so long.

Sherry

mftnchn Explorer

Got a busy weekend ahead. Our kids have planned an anniversary celebration for us on Sunday. It was going to be a surprise but that proved to difficult to plan. I'll likely have my son and family here for the weekend again too.

Also busy trying to help my daughter with wedding planning, as much as she is ready for and we can sandwich in before I leave. I am grieving not being able to be here for it all. It is something I knew for years would be likely but when I actually face it, I am feeling lots of feelings, believe me!

Seems like every day I have something health wise too. Today was an IV, tomorrow a mammogram, etc.

We're also still dealing daily with my husband's parents needs.

Then work is piling up because I am unable to attend to it.

Anyway, I am thinking of you all even if you don't see me much.

Sherry

LoriG Contributor

Where do I get the provoked urine test? Do I have to order it from a doctor? Online? Thanks.

aprilh Apprentice
My LLMD also suggested I check to see if there is hyperbaric oxygen chamber treatments in China. One of his autism patients is Chinese, and apparently they were able to go back to China and get these done really cheaply.

Anybody know anything about this for lyme? I think my LLMD wants to move to focus less on the "torpedo approach" he called it, and more on general healing because we have been at this so long.

Sherry

Sherry,

The environmental medical doc (treats lyme) has this. They said it forces oxygen into your cells. But that is about all i know about it.

April


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



Celiac.com Sponsor (A8-M):



aprilh Apprentice
Where do I get the provoked urine test? Do I have to order it from a doctor? Online? Thanks.

An MD or ND would be able to order this for you. It would need to be an MD that recognizes heavy metals, because many of them don't. I other words, an MD that is not "mainstream".

Julie,

So glad the charcoal is helping! That is great! Do you think it will reduce the angioedema symptoms?

CarlaB Enthusiast

Julie, I'm glad the charcoal is helping.

Anybody know anything about this for lyme? I think my LLMD wants to move to focus less on the "torpedo approach" he called it, and more on general healing because we have been at this so long.

Sherry

I've heard of it being used. Some LLMD's use it others don't. It helps some, it doesn't help others .... just like everything else. :D If it's cheap, it's certainly worth a try!

It is something I knew for years would be likely but when I actually face it, I am feeling lots of feelings, believe me!

I can't imagine. I don't think I could do it, Sherry. I think I could give a couple years to the work you do, but after that, I would have to come home.

I gave ten years to doing youth work before I got sick. I traveled, I oversaw a lot .... but I'm thinking that now it's a good time to move onto something else. I miss it, but I'm ready to move on to the next stage for me. :)

At some point, perhaps you will be ready for moving on to something different ..... in the meantime, do the best you can. You've been generous with your work and being so far away .....

mftnchn Explorer

Lori, you'll need to get it from an MD or someone who can give an IV medication probably. At least when I do the provoked urine, they give me an IV DMPS to "push" out the metals, then I collect for 6 hours afterward. They give me a collection kit and then I send it in by Fed Ex or whatever it says.

mftnchn Explorer

Thanks Carla. I think we've been given a gift of doing this work, and many times have been blessed so that it does not seem like a sacrifice. When I remember that, I know that it will all work out okay.

I think you are right though, when it is time to come home, we'll know it.

Sherry

CarlaB Enthusiast
Lori, you'll need to get it from an MD or someone who can give an IV medication probably. At least when I do the provoked urine, they give me an IV DMPS to "push" out the metals, then I collect for 6 hours afterward. They give me a collection kit and then I send it in by Fed Ex or whatever it says.

Mine was provoked by oral DMPS, so it can be done both ways. I also did a six hour collection.

confusedks Enthusiast
My LLMD also suggested I check to see if there is hyperbaric oxygen chamber treatments in China. One of his autism patients is Chinese, and apparently they were able to go back to China and get these done really cheaply.

Anybody know anything about this for lyme? I think my LLMD wants to move to focus less on the "torpedo approach" he called it, and more on general healing because we have been at this so long.

Sherry

Yea, I went to a Lyme Support group and the speaker talked about HBOT (Hyperbaric Oxygen Therapy). Since the spirochetes die when they hit oxygen, when you put oxygen into your cells/blood/body it in theory kills the spirochetes.

Some people have a lot of luck with it, some don't notice anything. They say you need to do 30-60 treatments. 5 days on, 2 days off. So, it can also be a time thing. If you can fit it into your schedule. The place here charges $150 per treatment. That adds up very quickly, lol. It is about an hour per treatment.

Green12 Enthusiast
Wow! :o So what do you make of that?

I don't exactly know Andrea :lol: I do agree though it seems to like me, or I like it :lol:

I think something can be said about the source of heartburn coming from toxins rather than what is typically thought, or something along those lines. Or possibly charcoal does a great dela more than bind toxins.

Quick update. I'm dealing with a lot of stress just from multiple demands. Meanwhile some further progress on testing and treatment:

My LLMD also suggested I check to see if there is hyperbaric oxygen chamber treatments in China. One of his autism patients is Chinese, and apparently they were able to go back to China and get these done really cheaply.

Anybody know anything about this for lyme? I think my LLMD wants to move to focus less on the "torpedo approach" he called it, and more on general healing because we have been at this so long.

Sherry

Sherry, good to hear an update.

Sorry about all the stress :( You are juggling a lot before you leave again, I am sure it feels like so many things to tackle and not enough time.

A Naturopath I used to see years ago wanted me to do the hyperbaric oxygen chamber treatments, but I never followed through with them.

Magic Johnson used one and credits the oxygen therapy as the cure for his HIV, or at least from keeping it in remission and not progressing into AIDS. I think the oxygen therapy increases the overall oxygenation of the body tissues, increasing blood flow to compromised tissues and organs. Infections also can't survive in a high oxygen environment so that is probably why it is recommended for your lyme.

Happy Anniversary, I hope you have a nice celebration with family and friends!

Julie,

So glad the charcoal is helping! That is great! Do you think it will reduce the angioedema symptoms?

Hi April,

I defenitely think it's made the difference with my heartburn, I am doing everything else the same so I can only deduce it's the charcoal.

I do think it's helped also with my angioedma, at least it's reduced the outbreaks severity. But I have also been doing some other things for that, calming the immune response and liver detox so I think everything together has made a dent.

CarlaB Enthusiast

Sherry, forgot to wish you a happy anniversary!

Well, I stopped using the Humaworm for a couple days to see if my feeling bad is from it or a babs herx. So far, no difference in how I feel, so it must be a babs herx.

I also justified stopping it because after about a week I saw nothing .... I drank some Mangosteen juice this morning ... it just did it's job, and I saw something. :ph34r: I think I need to be drinking it more because this worm had obviously died a while ago .... mostly digested ... gross.

Yea, I went to a Lyme Support group and the speaker talked about HBOT (Hyperbaric Oxygen Therapy). Since the spirochetes die when they hit oxygen, when you put oxygen into your cells/blood/body it in theory kills the spirochetes.

Some people have a lot of luck with it, some don't notice anything. They say you need to do 30-60 treatments. 5 days on, 2 days off. So, it can also be a time thing. If you can fit it into your schedule. The place here charges $150 per treatment. That adds up very quickly, lol. It is about an hour per treatment.

This is also why exercise is so beneficial. Dr. B says to go after a specific muscle group -- strength, then stretch ... to work out systematically.

Obviously cardio is of benefit, but when you feel bad it takes too much energy away from healing ..... I'm not doing cardio right now, which upsets me as I had finally worked up to where I was before I was sick. :angry: I'm thinking at this point it will be one full herx cycle before I have the chance of feeling better, so that will be two more weeks of this.

Green12 Enthusiast
Well, I stopped using the Humaworm for a couple days to see if my feeling bad is from it or a babs herx. So far, no difference in how I feel, so it must be a babs herx.

I also justified stopping it because after about a week I saw nothing .... I drank some Mangosteen juice this morning ... it just did it's job, and I saw something. :ph34r: I think I need to be drinking it more because this worm had obviously died a while ago .... mostly digested ... gross.

This is also why exercise is so beneficial. Dr. B says to go after a specific muscle group -- strength, then stretch ... to work out systematically.

Obviously cardio is of benefit, but when you feel bad it takes too much energy away from healing ..... I'm not doing cardio right now, which upsets me as I had finally worked up to where I was before I was sick. :angry: I'm thinking at this point it will be one full herx cycle before I have the chance of feeling better, so that will be two more weeks of this.

Hope this herx doesn't take you down too far Carla.

That Mangosteen juice sounds like powerful stuff :lol:

You bring up good points about exercise. I struggle with how to balance that, not having any energy most of the time but knowing I need to get the oxygen flowing.

I've lost a lot of ground this year as I got sicker. I think we have to just do what we can, get it in when we can, get back what we can, baby steps like with everything else that we are dealing with.

CarlaB Enthusiast
I think we have to just do what we can, get it in when we can, get back what we can, baby steps like with everything else that we are dealing with.

Exactly. There have been days at the gym that in the past I wouldn't have even considered exercise! I at least try to lift light weights and stretch if I feel bad. Then I go home and go back to bed. :lol:

aprilh Apprentice

Mangosteen juice is good for constipation? Am I understanding that right?

CarlaB Enthusiast
Mangosteen juice is good for constipation? Am I understanding that right?

Uh, seems to get things moving for me. I don't know if that's its purpose, but that certainly is its effect!

mftnchn Explorer
Yea, I went to a Lyme Support group and the speaker talked about HBOT (Hyperbaric Oxygen Therapy). Since the spirochetes die when they hit oxygen, when you put oxygen into your cells/blood/body it in theory kills the spirochetes.

Some people have a lot of luck with it, some don't notice anything. They say you need to do 30-60 treatments. 5 days on, 2 days off. So, it can also be a time thing. If you can fit it into your schedule. The place here charges $150 per treatment. That adds up very quickly, lol. It is about an hour per treatment.

Wow, thanks for the specific info! My LLMD said these folks paid like $5 a session for the treatment, but probably that was an exaggeration. I am going to see what I can find out about it. That schedule would be rough to follow though, unless I just take 6 weeks to 3 months and stay in one place! Now wouldn't that be novel???

Sherry

mftnchn Explorer

Thanks for the well-wishes; its nice having our kids do something for us like this.

Julie, I am where you are with the exercise. I struggle with it. Once I feel a little better I just want to go about my day and get at my work. Just doing the daily routine is about what I can handle.

I am noticing now that though I am feeling better, late in the day I get the achiness in the back area. I wonder how much is due to just more moving around.

However, the increased oxygen to areas of the body and what that does completely makes sense.

Sherry

confusedks Enthusiast
Mangosteen juice is good for constipation? Am I understanding that right?

It didn't do anything for me. Lol. Didn't notice I had taken it. ;)

Nyxie63 Apprentice

Hmmm... I've see portable hyperbaric chambers. My Holistic MD's office has one.

Sherry, wonder if you can rent one?

Nyxie63 Apprentice

Updatey stuff....

Had a day out yesterday. Got out of the house for a couple of hours. Had to run down to the ex-LLMD's office and pick up my records. There's a way to burn 3 hours.

Then I hit the local Trader Joe's. Not impressed at all. For some reason, I'd been expecting more of an interntional market kind of thing. They did have some good prices on raw nuts, so I picked up some of those. Was hoping for a good-sized asian food section.. but no. There's one not far from where I'm heading today, so might stop by there.

And I got my hair chopped off! Yes! Its really cute. Jin, think "the Major", but longer in front instead of bangs. Will have to get a pic done.

Came home and fell into a coma on the sofa until hubby got home. Oh yeah, and didn't get lost even once! Thought I was lost on the way down to the LLMDs but no. Found it.

Today, I'm taking a friend out for a birthday lunch (his). It's our annual sushi run. Taking a small bottle of Bragg's aminos with me. There's a wonderful sushi buffet down where he lives. All kinds of sushi (and they list all the ingredients on every dish), different sea veggie salads, sashimi, and a hot bar. Yum!

I've decided I don't like this allergy testing. As part of the first screening, they do a spot with Candida to test your immune response (everyone reacts or is supposed to. if you don't, then your immune response is compromised). I figured, ok maybe red bump. No. Painful itchy blisters that still haven't gone away yet. Bleah. Guess my immune response is working... maybe too well.

Oh! And I picked up a juicer last week. Finally! Its a monster. I think my fave combo so far has been kale/cucumber/celery. I really like the "green" taste. Its refreshing. Not exactly a smootie substitute, but good.

Next week is looming closer. Sort of excited but scared too.

AndreaB Contributor
Next week is looming closer. Sort of excited but scared too.

I can understand that. Is your appointment Tuesday?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,164
    • Most Online (within 30 mins)
      7,748

    JennyK
    Newest Member
    JennyK
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Mmoc! Please include the reference ranges for the IGA and the TTG tests in your next post if you have access to them. We cannot comment much otherwise as different labs use different reference ranges for these tests and also different units of measurement. There are no universal standards as of yet so the raw test numbers are not always helpful. Having said that, if your IGA (what we usually call "total IGA") is low, the TTG-IGA score will be skewed and cannot be trusted. Other kinds of tests for celiac disease would need to be run, particularly those in the IGG family of tests. Perhaps this will be helpful:  
    • Mmoc
      Hi there any advice welcomed. I have had 4 years of symptoms ranging from immune related anaphylactic symptom sudden onset food allergy to peppers/paprika/chilli/capsicum family derivatives. all these allergies fizzled out and following a food challenge test in hospital I reintroduced them a few months ago. Since then my digestive system is a mess. i have since noticed that 4 years ago when testing for iga allergies my iga level was .62 and my ttg was less than .1 (due to symptoms I was probably eating very plainly at that time). should I insist on being retested for celiac? I’ve since read two indicators for celiac include: sensitive to spicy foods when in flare up tooth enamel weakness and symmetrical discolouration patches on teeth which I have had since childhood on my two front teeth     thanks
    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
×
×
  • 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.