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

confusedks Enthusiast

Carla,

Thanks, I will. I have only been on it for 6 days. I herxed really badly on the Zith when I first started, but I had to push through it because it was Christmas Eve and it was day 5. But I also noticed that about a week into being on the Zith I get vivid nightmares, so there must be some sort of cycle there. Because it happened again this month. Glad that's over for this month. <_<

Everyone,

Did I tell you guys that the insurance company is going to pay for the Mepron and reimburse us for the last one we just bought? I don't think I said anything yet. I am not too excited because I don't believe them at all, so I'll believe it when I see it!


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
dlp252 Apprentice
Did I tell you guys that the insurance company is going to pay for the Mepron and reimburse us for the last one we just bought? I don't think I said anything yet. I am not too excited because I don't believe them at all, so I'll believe it when I see it!

Yay...wish I didn't understand so well about not believing it until I see it, lol.

Green12 Enthusiast
It's actually a physical reaction. I bought some mercury-free...tried a couple of different kinds too...one I got from my doctor, one from Whole Foods. But, I haven't tried cod liver oil yet--I can eat cod without reacting, so it's possible. I can't eat flax in any form, nor hemp apparently.

So you might test well for some EFA's but when you take it it's another story?

Do you think its because Evening Primrose Oil is high in plant estrogens?

That might be what I was thinking, thus the liver congestion with excess estrogens.

Everyone,

Did I tell you guys that the insurance company is going to pay for the Mepron and reimburse us for the last one we just bought? I don't think I said anything yet. I am not too excited because I don't believe them at all, so I'll believe it when I see it!

Well we can be hopeful, and cross our toes and fingers :lol:

dlp252 Apprentice
So you might test well for some EFA's but when you take it it's another story?

Yeah...although, I can't remember for sure if I ever had them all tested. It seems like I had the one from the doctor tested, but not sure if I had the others tested. Flax was no use since that messed me up pretty badly pretty quickly. Hemp was almost as bad as that. I'll have to look back and see if I wrote down what the fish oils did.

I know there was one supplement that tested okay in ART, and he said it wasn't bad--not great though, so I made the comment that yes that was the one I thought reacted to, and he tested it in a different way and said that it was totally blocking something or other. I'm not sure if that was the fish oil or one of the other supplements.

CarlaB Enthusiast

That's great that your Mepron is covered!

It's been around 30 days since your Zith herx ... perhaps you are on a 30-31 day herx cycle. :) Maybe it comes with the full moon.

AndreaB Contributor

Kassandra,

Good hopeful news on the insurance. :D

Rpm999 Contributor

can ART also mean Applied Resonance Therapy?

because i found this website called new england kineisology

Open Original Shared Link

^explanation, hope it's the same thing...sounds like it because it explains the muscle

thing, but the rest sounds different


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



Celiac.com Sponsor (A8-M):



tabasco32 Apprentice
Does anyone have shortness of breath and really a fast heart rate? I feel like I can't breath properly...it almost feels like when I had asthma and I was having an attack. It's not air hunger I don't think, unless air hunger can last for days and days.

I feel like this when I am eating. Like my body is having a hard time breaking down food or something, well it is.

okay on the makeup thing, is anyone familiar with mineral fusions at whole foods? I hear they are pretty natural with no toxins or metal?

Donna sorry about your brest pain. I haven't had any of that yet. But I do get rectal pain at times if that helps? I can't sit down sometimes. :(

Tomorrow other LED treatment. 3 hour drive their and 3 hour drive back. :mellow: Not to mention my mom is a crazy driver. :blink: Maybe at least 85 to 90 miles an hour she drives. Hope it's not to rainy tomorrow or foggy.

Lisa

Rachel--24 Collaborator
can ART also mean Applied Resonance Therapy?

because i found this website called new england kineisology

Open Original Shared Link

^explanation, hope it's the same thing...sounds like it because it explains the muscle

thing, but the rest sounds different

This is not the same as Autonomic Response Testing...which was developed by Dr. Klinghardt.

I read more about the Applied Resonance Therapy here..

Open Original Shared Link

It seems to be more about treating allergies by correcting imbalances in the body...energetically.

Autonomic Response Testing does not involve any type of treatment for allergies or anything else. The practitioner tests your body to find out what is causing disturbance or dysfunction of the autonomic nervous sytem.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

confusedks Enthusiast

Which brand does everyone take of chlorella? I think I have asked before, but I don't remember. <_< I feel like I'm not detoxing well. I don't feel toxic, but I also don't know what that would feel like. :wacko: I just want to make sure I don't get to the point where I feel extremely toxic and have to slow down on meds to detox my body. I want to just have maintenance work (if that makes sense).

CarlaB Enthusiast

I take Sun Chlorella from Whole Foods.

It's a good idea to stay on top of toxins. :)

dlp252 Apprentice

I currently take Sun Chlorella. Before that I was taking Prime Chlorella, which was hugely expensive.

Rpm999 Contributor

yeah i figured that rachel, i was getting my hopes up for nothing :lol: stupid that they call both ART

she does AK though which is probably good too, so i hear..not as good as ART, but hey it's right down the street from me so it'd be a nice start maybe until i find somewhere with ART...it's a whole holistic clinic so i'll give it a call

AndreaB Contributor

Kassandra,

We use King Chlorella with Russian Immune Support by Nutricology/Allergy Research. We have to order it online.

mftnchn Explorer

I'm on the KingChlorella too.

Sherry

confusedks Enthusiast

Thanks everyone. I will head to Whole Foods tomorrow and get some.

My mom and I had an interesting experience with some olive leaf extract. We got my first bottle at my LLMD's office when we were up there, and then my mom decided she wanted to start taking it too, so she ordered it online. Well, it was the same brand and everything, but a couple things looked different on the bottle. Is it possible that we got a "knock-off"?? I now got more from my LLMD's office, but it was just strange. Anyone had this happen?

dlp252 Apprentice

Sounds a little fishy Kassandra, but may not be a knock off necessarily...I think sometimes manufacturers package things a little differently for different markets...not sure about something like that though.

aprilh Apprentice

What were the additional ingredients?

CarlaB Enthusiast

I bought some of the Kyolic Garlic I used to take ... it's the Immune support kind.

Interestingly, there is olive leaf extract in it. What does that do?

There is also astragalus, oregano oil, and mushrooms. Interesting, as much of this is stuff taken for Lyme and it's stuff I was taking before diagnosis.

I was worried because I have still been tired. I have trouble getting moving, and I just can't go on and on and on.

So, I got out my old adrenal fatigue books from back when I got that diagnosis. Dr. H thinks I have some adrenal fatigue from being sick for so long. Everything I feel can be explained by that! I was relieved! I was worried the Lyme wasn't under control enough, but I think it is .... just because the Lyme isn't as acitve anymore, doesn't mean that all of a sudden I will be back to normal. I guess that's the mind set I had.

So, I'm taking it easy. :) And I'm feeling better. No real Lyme symptoms, just not as much energy as I'd like. It won't keep me from playing racquetball a couple times per week, or from working out, or from cooking dinner, but it does make me sit down more often than I'd like, and rest more than I want to.

aprilh Apprentice
I bought some of the Kyolic Garlic I used to take ... it's the Immune support kind.

Interestingly, there is olive leaf extract in it. What does that do?

There is also astragalus, oregano oil, and mushrooms. Interesting, as much of this is stuff taken for Lyme and it's stuff I was taking before diagnosis.

I was worried because I have still been tired. I have trouble getting moving, and I just can't go on and on and on.

So, I got out my old adrenal fatigue books from back when I got that diagnosis. Dr. H thinks I have some adrenal fatigue from being sick for so long. Everything I feel can be explained by that! I was relieved! I was worried the Lyme wasn't under control enough, but I think it is .... just because the Lyme isn't as acitve anymore, doesn't mean that all of a sudden I will be back to normal. I guess that's the mind set I had.

So, I'm taking it easy. :) And I'm feeling better. No real Lyme symptoms, just not as much energy as I'd like. It won't keep me from playing racquetball a couple times per week, or from working out, or from cooking dinner, but it does make me sit down more often than I'd like, and rest more than I want to.

Olive Leaf is antifungal as well as the oregano oil. Astragalus is for the immune system and Buhner recommended that in one of his books. I don't do mushrooms since they are a fungus and will feed fungus, so not sure why they would be in there?

CarlaB Enthusiast

I'm already on Host Defense, which is also mushrooms. My LLMD has me on it to build up my immune system. I don't have fungal issues. Thanks for the clarification!

I also see that astragalus is in the Cowden Adrenal Support.

Nyxie, I wanted to add to my PM (here so other of his patients know, too), when you have the phone consults, stay on topic ... if it goes over, you will be charged more. ;) Try to stick to 15 minutes. I never minded when I NEEDED a longer consult, but .....

Green12 Enthusiast
My mom and I had an interesting experience with some olive leaf extract. We got my first bottle at my LLMD's office when we were up there, and then my mom decided she wanted to start taking it too, so she ordered it online. Well, it was the same brand and everything, but a couple things looked different on the bottle. Is it possible that we got a "knock-off"?? I now got more from my LLMD's office, but it was just strange. Anyone had this happen?

Kass, if it's from a reputable company I can't see it being a knock-off (but I could be wrong)

Companies do change packaging sometimes, and that could explain the differences in the looks of the bottles.

Your llmd could have had that left over from an old order and the internet had the new, or vice versa.

Interestingly, there is olive leaf extract in it. What does that do?

There is also astragalus, oregano oil, and mushrooms. Interesting, as much of this is stuff taken for Lyme and it's stuff I was taking before diagnosis.

I was worried because I have still been tired. I have trouble getting moving, and I just can't go on and on and on.

So, I got out my old adrenal fatigue books from back when I got that diagnosis. Dr. H thinks I have some adrenal fatigue from being sick for so long. Everything I feel can be explained by that! I was relieved! I was worried the Lyme wasn't under control enough, but I think it is .... just because the Lyme isn't as acitve anymore, doesn't mean that all of a sudden I will be back to normal. I guess that's the mind set I had.

So, I'm taking it easy. :) And I'm feeling better.

Carla, glad you are taking it easy in those times where you need to.

Olive leaf extract is an amazing thing, I took it off and on for a while and got really good results.

Not only is it anti-fungal like April mentioned, but it is also anti-bacterial, and anti-viral, and so many more healing properties.

Mushrooms, medicinal mushrooms, like shiitake, reishi, maitake, have immune boosting qualities and can be very healing.

Here's a good link:

Open Original Shared Link

AndreaB Contributor

Kassandra,

I don't know about the olive leaf. Have you compared ingredients and dosage amounts etc?

Carla,

I can understand that your adrenals would still be tired. I'm glad you are resting when needed.

CarlaB Enthusiast
Carla,

I can understand that your adrenals would still be tired. I'm glad you are resting when needed.

More than resting .... I've slowed down overall. :) The mental implications of being told by my LLMD that I was doing great, were strong .... if that makes sense. I all of a sudden started doing more. I had been closer to normal, but still had the mindset that I was "sick".

All of a sudden, I had the mindset that I was "healthy." The truth lays somewhere in between. I am no longer "ill", but I still have some rest and recuperation before I can be considered "healthy." I needed to tell myself that I'm still in recovery.

Since I have, I feel better .... I had some Lyme symptoms popping up here and there ... but I also cut back on GSE, which is a cyst-buster, so that could be a player in how I've felt, too. I was taking 30 drops per day, now I'm taking 20. Now, I have no Lyme symptoms again. :) Just fatigue, but not overwhelming fatigue like when I was sick ... *just* normal fatigue, which is what makes it seem okay to push through it ... but it's not. I can't "rachel" feeling well, yet. :lol:

confusedks Enthusiast
What were the additional ingredients?

There weren't any, but it just seemed strange to us. The pills were different sizes even though it was the same dosage, etc.

Interestingly, there is olive leaf extract in it. What does that do?

Yea, olive leaf extract is really great. It's everything Julie mentioned. Also, I read on LN that olive leaf extract (not just olive leaf, I guess there is a difference) actually can target Lyme. I'm only taking 4 a day, you can take up to 9 a day, so he started me slowly.

Everyone,

It's really interesting because I was starting to doubt my LLMD because I'm not taking a lot of meds/supplements. I talked to my mom about it and she reminded me the way I have reacted to supplements before, in a bad way. And we told Dr. H that, so I think he is just starting me out slowly. I was worried for a little bit, but now I'm not. :)

Archived

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

  • 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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,243
    • Most Online (within 30 mins)
      7,748

    Dorfor
    Newest Member
    Dorfor
    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

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.