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. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    2. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    5. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,157
    • Most Online (within 30 mins)
      7,748

    Christina Deloyola
    Newest Member
    Christina Deloyola
    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
      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. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.