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

Julie,

So glad the diet is helping. Have you had any breakouts since?

THATS AMAZING!!! CONGRATS!!!!

Toxic

Inow i don't even have a new path to take.. a new diet to try.. anything. i'm just lost and sick of doctors who pretend to listen but really don't care that much cuz it's not their body..

~Katy

Katy,

Do you have a yeast problem or was it something else?


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
Green12 Enthusiast
What do you think about G's report on the bionic 880?? Are you ready to go to Germany yet? :P

I think its pretty exciting...I cant wait to talk to Scott about it. I'm curious about whether Dr. K or anyone else will take interest in it. That would be awesome if we can have more machines over here! :)

What is this Rachel?

ART works in layers. If you have other issues which are more significant stressors....those will show up first. Obviously parasites would be a stressor to anyone's system.....but if there are other things which are causing greater stress...the parasites may not show up until some of the other issues are dealt with.

I'm glad you mentioned this Rachel, I meant to respond to Sherry asking about why the parasites aren't showing up in ART.

Well said :)

So far so good. I havent had any really obvious changes yet. Maybe a little more energy at times (like bouncing off the walls :lol: ) but havent noticed too much overall.

Well at least you aren't reacting to it, that's encouraging :)

Sometimes when my diet is really restricted I have less energy so that once I start adding in new foods I get more energy.....even if the foods arent necessarily good for me.

It kind of sucks because I definately benefit from having more nutrients in my diet....but then since I'm reacting to the food chemicals (phenols and oxalates) I cant continue eating the foods. :(

This is exactly what would happen with me, when I was so restricted I didn't have any energy (I also wouldn't move my bowels), eating other things gave me more energy and of course I moved my bowels, but I was reacting to those extra foods <_< It was like darned if you do, darned if you don't.

Green12 Enthusiast
I think if I put my hand on a machine like that IT might start to smoke.:)

I think if you dont blow the whole thing up all by yourself...I can definately finish the job. :P

:lol::lol:

Julie, that's great that your diet is working and helping. How are the breakouts lately?

Glad the diet is working, is it the scd diet?

So glad the diet is helping. Have you had any breakouts since?

Thanks everyone :)

It's the LEAP plan (MRT allergy test) Paula.

I broke out with classic hives pretty bad every day for the first 2 months, but I think that worked itself out of my system and I've been hive free for the past 2 weeks.

As far as my HAE breakouts, I'm still having my monthly breakout, and since it's genetic that's just something I am going to have to deal with unfortunately <_<

mftnchn Explorer
I still get nauseous when I see a worm .... it's so ... so ... I can't think of a word that adequately describes how it is for someone who is a perfectionist to have worms! :lol: Adam gets a kick out of it .... house must be clean ... but I have worms! You always think of poor, dirty cultures having worms.

I thought of you when I talked to my DIL--I don't think she thinks people have them too often, and it must be because I'm in China where it isn't "clean." LOL

Sherry

Guest tamedandfoxed
Katy,

Do you have a yeast problem or was it something else?

no, i have beta strep B or something.. and infection that's localized on my cervix and wont respond to any antibiotics.. the ABs have definitely given me gut problems with yeast though, yes..

Guest tamedandfoxed

AHAHAHAHAHAHA!!!!

I HAVE A REAL JOB NOW!!!!

oh right, p.s. i was fired from Panera Bread on sunday cuz i ahem.. . called the manager something i shouldn't have... but whatever she's an evil person and didn't do her job so no apologies there... and it doesn't matter now cuz i got a REAL JOB!!!!

I am going to be working as a victim advocate crisis working at the YWCA starting the 4th. I am stoked. DID I MENTION FULL HEALTH INSURANCE??? EYE AND DENTAL INCLUDED!!!!! saaaaaaaweeeeeeet!!!

i'm so happy.

~Katy

ShadowSwallow Newbie
Sounds like a lot is going on Birdy. Thanks for the update. :)

How's the eczema doing lately.

It's doing quite well, Andrea. :D Not perfect, but I'm no longer oozing puss or having my skin flake off. :rolleyes:

I had another FUN Tuesday! :(:angry: We decided to go ahead and try the Iron IV again because the risk of NOT doing them is heart failure. So, we decided to try it and see what happened. The only way they'd do it would be to give me steroids and IV benadryl before the Infusion to try and stop any reaction.

So long story short, I ended up in the ER again. :( Now I really don't know what to do, because Dr H is going to KILL me for getting the steroids. But then the hematologist keeps telling me I have to get the iron. He won't do it again given my reaction now. It is true anaphylaxis. Ughhhhhhh!

I'm really frustrated. I don't have any idea what to do now.

Ugh, Kassandra! :( I'll be praying for you.

I am really amazed at the change in my stool since starting the SCD--four days now. Did not see this much change in a short time going gluten-free although overall there was significant change. I am especially surprised because I am using dairy. I'm only using cow dairy in the dry curd cottage cheese, I make my yogurt from goat milk because I seem to do better on that. Seems like the starch factor has been major.

I'm glad the diet is working for you! Hopefully getting that load of parasites off you will calm your immune system down.

I'm doing well on the diet, best thing I have done in a very long time. I don't have any food reactions, I've already lost weight and overall fluid retention (still have some to go though), generally a lot less bloating and stomach issues.

Yay! :D Did you ever end up seeing that episode of House? It was kinda sad/funny... they just told the patients to take this one drug (didn't say what it was) every day, and that they'd just be fine. :blink: A little wishful medical thinking? <_<

Birdy


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



Celiac.com Sponsor (A8-M):



confusedks Enthusiast

Since I reacted twice to the Iron IV's, we obviously have to come up with another plan. Dr H wants me to see this alternative Dr who does NAET treatments. He wants her to de-sensitize me to the Iron IV's so I can get them again. The only problem is, my VERY western medicine hematologist said no more IV's, ever. So what I am thinking of doing is asking if I go up north to Dr H's office, if he can give me the iron IV's, so if anything happens, he would know how to stop the reaction in a Lyme friendly way.

I have to talk to Dr H and see what he says. I will keep you all posted. I have an appt with the NAET Dr on the 29th (next Tuesday).

AndreaB Contributor

Kassandra,

Hoping Dr H can work with you on the iron IV's. Keep us posted on the NAET treatments please. :)

I don't remember if there was anyone else I wanted to respond to. Most things have been commented on.

Katy,

Congrats on the new job! :D

CarlaB Enthusiast

Katy, congratulations!

Kassandra, how does the hematologist expect to get your iron back to normal?

confusedks Enthusiast
Kassandra, how does the hematologist expect to get your iron back to normal?

I have no idea. :rolleyes:

Rachel--24 Collaborator

Quick drive by....

I still havent gotten my OAT results back yet! :angry:

I called earlier today and was told they were in...finally! She said Dr. S. hadnt seen them yet and from what she could tell the results didnt "say anything"...but she still wanted him to look at it first.

So I took that as meaning that all was normal.....so yeah....ever since I spoke with her I'd been really frusterated about having another test with no answers!

She said she'd fax the results to Dr. Amy herself....which was fine but I wanted my own copy as well. She said I could pick it up after work.

I was pretty much dreading getting the "normal" test results back but I went anyway and all I got was a copy of the add-on stool test for yeast.

That was something which I had added on to the OAT because I was hoping if they could culture yeast in the sample they would be able to determine which antifungal treatment would work best. Well, thats the purpose of the test anyway....but yeah....the yeast has to be present in the sample in order for them to proceed with testing antifungals.

Anyways...no yeast was found in the stool sample. The OAT itself still hasnt come in....and its been over 3 weeks now.

They're gonna call Great Plains tomorrow to find out....and I'll probably call too. I'm hoping the turn-around for this test is just longer than most and that I dont have to end up re-taking it cuz it got lost or something. :rolleyes:

Anyways, I'm relieved that there is still some hope for answers. :)

Its a bummer about the stool test but I find them to be kind of unreliable for yeast anyway. Sometimes the yeast is there...and sometimes not. :rolleyes:

ShadowSwallow Newbie

Am I the only one who can't get into lyme chat? Silly computer won't load it. :angry:

Nanjkay Apprentice
Sherry, glad you are getting all this out. And that's encouraging about your stool changes, you are probably right about the starches contributing before.

I hope you continue to improve.

Sherry-

Glad you are doing well. I think in time you will feel great and full of energy.

I think I might give the diet a whirl myself. One time I did a very strict Candida diet before I knew I had all of this, and it was similar in that there were no starches and I must have lost 7 pounds of water, had a ton more energy, and felt less congested in every way. I have never done well on starches my whole life...

I am also very curious to know if I have little or big worms living inside of me. Just thinking that they do freaks me out and I want to get them out ASAP. They were not invited. Do any of you have any recommendations on which to start first the Humaworm or Enula and how to dose for a very sensitive system like mine?

Nancy

Nanjkay Apprentice
Since I reacted twice to the Iron IV's, we obviously have to come up with another plan. Dr H wants me to see this alternative Dr who does NAET treatments. He wants her to de-sensitize me to the Iron IV's so I can get them again. The only problem is, my VERY western medicine hematologist said no more IV's, ever. So what I am thinking of doing is asking if I go up north to Dr H's office, if he can give me the iron IV's, so if anything happens, he would know how to stop the reaction in a Lyme friendly way.

I have to talk to Dr H and see what he says. I will keep you all posted. I have an appt with the NAET Dr on the 29th (next Tuesday).

Kassandra-

Sounds like a good idea. Just wanted you to know I am thinking of you and hope you keep finding answers and therapies that help you.

nancy

mftnchn Explorer

Nancy, I am not sure how best to test things for a sensitive system. I am now using ART and it has seemed useful. Otherwise I just try things.

The Humaworm website I think it is says that 90% of Americans have parasites, as we don't do any regular treatment. Supposedly they are mostly benign, but my guess is they are not for we who are ill. But yes, it is very yucky to think about it, even more so to see them.

There are some natural treatments for worms. I tried one, pineapple, pumpkin seeds for 3 days, some people have had more results doing it longer. Pumpkin seeds numbs tapeworms so that they detach, pineapple has bromelain that kills them. I also tried several cloves a garlic a day, and that's when I saw a piece of tapeworm.

Sherry

CarlaB Enthusiast
Am I the only one who can't get into lyme chat? Silly computer won't load it. :angry:

Here's the new Lyme chat website. client11.addonchat.com/sc.php?id=306727

CarlaB Enthusiast
Do any of you have any recommendations on which to start first the Humaworm or Enula and how to dose for a very sensitive system like mine?

Nancy

Nancy, do you think enula would be better to start with since it's fewer ingredients and come in drops?

The Humaworm can be special mixed for you. They will leave out whatever herbs you can't handle ... of course, you have to know which ones bother you.

The enula isn't really for all parasites .... but it works on roundworms for sure!

aprilh Apprentice
no, i have beta strep B or something.. and infection that's localized on my cervix and wont respond to any antibiotics.. the ABs have definitely given me gut problems with yeast though, yes..

I think Beta Strep is something that pregnant woman are tested for. I was positive both times and had to recieve IV abx during delivery. Hmmmm.....I haven't studied much on this. Will probiotic d%$#@#$ help? Might be something to look into.

Since I reacted twice to the Iron IV's, we obviously have to come up with another plan. Dr H wants me to see this alternative Dr who does NAET treatments. He wants her to de-sensitize me to the Iron IV's so I can get them again. The only problem is, my VERY western medicine hematologist said no more IV's, ever. So what I am thinking of doing is asking if I go up north to Dr H's office, if he can give me the iron IV's, so if anything happens, he would know how to stop the reaction in a Lyme friendly way.

I have to talk to Dr H and see what he says. I will keep you all posted. I have an appt with the NAET Dr on the 29th (next Tuesday).

That sounds like a good plan Kassandra. I wonder if oral iron cause the same reaction now? Not that it would touch the deficiency but maybe it would help in the meantime. Maybe the one made from herbs and greens. Can't remember the name right now.

confused Community Regular

If you suffer from asthma or allergy, think first that it may be due to an intestinal disorder or a food intolerance

This was my horoscope today. I was lmao at it. Im like do u really think so lol.

Does anyone else have really bad gut reactions when it is that time of the month. I got sick today after i ate some beans and fritos. I was in bed for most of the afternoon. I had almost thought i had salmonella for a second. But i started to think this happens every time it is that time of the month. If so does anyone know what i can do to be fine next month.

I wont be on much the next week, hubby is on vacation and we have lots of fun things planned. Everyone pray that i will have good days. Im also thinking this is a good time to start the humaworm since he will be at home lol.

paula

aprilh Apprentice
Nancy, do you think enula would be better to start with since it's fewer ingredients and come in drops?

The Humaworm can be special mixed for you. They will leave out whatever herbs you can't handle ... of course, you have to know which ones bother you.

The enula isn't really for all parasites .... but it works on roundworms for sure!

Is Enula herbal based or prescription?

I didn't do well on Humaworm so something in there bothered me. I would like to try something else.

Rachel--24 Collaborator
Is Enula herbal based or prescription?

Its the newest NutraMedix antimicrobial in the Cowden line-up.

Open Original Shared Link

Rachel--24 Collaborator

Nancy,

I'm highly sensitive and I didnt feel that I would do well with Humaworm....mainly because it contains a bunch of herbs and I just dont tolerate that stuff. I was tested for alot of the herbs (ART) and nope....they are not good for me....huge stressors to my system.

I would try Enula first. I used a few different Cowden antimicrobials without problems....I just had to allow the alcohol to evaporate before I took them.

Rachel--24 Collaborator
Does anyone else have really bad gut reactions when it is that time of the month. I got sick today after i ate some beans and fritos. I was in bed for most of the afternoon.

Well beans and fritos would do me in *any* day of the month! :P

Do you eat those regularly without any problems?

A long time ago before I made any changes to my diet I had really horrible symptoms at that time of the month. Thankfully, those symptoms resolved when I cleaned up my diet. Now I find that I just get extra tired the day prior to my period.

confused Community Regular
Well beans and fritos would do me in *any* day of the month! :P

Do you eat those regularly without any problems?

A long time ago before I made any changes to my diet I had really horrible symptoms at that time of the month. Thankfully, those symptoms resolved when I cleaned up my diet. Now I find that I just get extra tired the day prior to my period.

I felt fine when i made frito pies last night for dinner. But when i had them today, it was major pain.

Yesterday i had lots of energy and had an awesome today. But today it was terrible. I almost had to miss my sons championship baseball game. But luckily i made myself go lol.

Maybe i just need to go back to water and beer to feel good lmao.

paula

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,918
    • Most Online (within 30 mins)
      7,748

    Dizzyma
    Newest Member
    Dizzyma
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
×
×
  • 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.