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

CarlaB Enthusiast

Rachel, they posted a different version of that encounter on the Silly thread .... yours is a better film. That is really cool.

Kassandra, I would have your Hemotologist talk to Dr. H before you take steroids again. I know both are serious problems, but I think the doctors need to discuss together the best way to handle it. They may come up with using more abx with the steroids .... you never know ... but I'd have them talk.

Sherry, I had to take chlorella when I was passing the worms. The good news is, I felt so much better when they were gone! I still see one occasionally with the Enula, but not nearly as often as before. In the end, I saw three tapeworms (two small, one at least 7 ft), and I'd say over 20 roundworms (about 6-10 in long). No wonder I had GI issues! I felt like someone punched me in the stomach if I ate!


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
confused Community Regular

Everyone,

I had a revelation yesterday. I am toxic lmao. I started an bad habit back up last wednesday when my ss got into trouble and lots of things going on. Well the first few days i was feeling fine. Well on monday I had an cigarette and got sick. Then I tried again yesterday like 4 times(yes im a little slow lo) and finally realized the toxins were going to kill me.

I am back on the detox trail. I started the pads last night. They were pitch black of course lol. I am going to take AC and at least dry brush, im afraid to detox bath yet.

I am also going to look for probotics today. Anyone know of ones that pretty much free from everything lol.

I am finally determined to be healthy by next summer.

I can no longer be in denial and think things are just in my head.

paula

aprilh Apprentice
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.

Oh Man! I am so sorry that happened again! And the more reactions you have the more sensitive you will get!

I agree with Carla and Rachel - i hope these docs are talking...this is serious!

I was in tears too, how incredible is that!

Thanks Rachel. :)

I just stopped by for a minute, I started taking the zeolites yesterday.

Also I am starting back on Iodine, using Lugol's for painting the soles of my feet and thinking I will start taking Iodoral, spelling? Has there been much discussion of Iodine, I can't remember but I picked up a book on it recently and am thinking it would be good to take.

:wub:

I have read a lot about iodine and currently take Lugol's 3 x per week. There is a lot of good information on another board, if you would like the link...

aprilh Apprentice
Everyone,

I had a revelation yesterday. I am toxic lmao. I started an bad habit back up last wednesday when my ss got into trouble and lots of things going on. Well the first few days i was feeling fine. Well on monday I had an cigarette and got sick. Then I tried again yesterday like 4 times(yes im a little slow lo) and finally realized the toxins were going to kill me.

Paula,

Sorry about the cigs...i know its hard to quit but having bad reactions sometimes make it easier :)

I think your "bucket" is already full and the cigs just sort of add to it making it overflow.

Keeping on doing what you know to do to lessen the burden and help your body rid itself of toxins.

CarlaB Enthusiast

Hey Kassandra, you know how everyone on chat worries .... they were concerned you didn't stop in last night especially since they knew you were looking at going into the hospital for iron IV's .... they were worried that you'd go to the hospital for 8 days and not let them know. :) I assured them that you would text me if you did that.

You have a whole bunch of people who care how you are doing.

miamia Rookie

hey all-

I know I had posted but it is one of the ones that was lost so I totally don't remember what I wrote.

Kassandra-

I am so sorry you are going through all of this

Ok so I ordered the AFP Pepitzyde- from the place rachel orders her enzymes so I wil be trying it and preying that it helps because eating for me is really hard right now.

confused Community Regular
Paula,

Sorry about the cigs...i know its hard to quit but having bad reactions sometimes make it easier :)

I think your "bucket" is already full and the cigs just sort of add to it making it overflow.

Keeping on doing what you know to do to lessen the burden and help your body rid itself of toxins.

I hope it is easy this time around. Im going to have to find another stress reliever, i guess lol.

My "bucket" just needs to start emptying. Why cant it be like an gas tank lol.

Im thinking i should order some zeolite.

paula


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



Celiac.com Sponsor (A8-M):



confused Community Regular
Paula,

Sorry about the cigs...i know its hard to quit but having bad reactions sometimes make it easier :)

I think your "bucket" is already full and the cigs just sort of add to it making it overflow.

Keeping on doing what you know to do to lessen the burden and help your body rid itself of toxins.

I hope it is easy this time around. Im going to have to find another stress reliever, i guess lol.

My "bucket" just needs to start emptying. Why cant it be like an gas tank lol.

Im thinking i should order some zeolite.

paula

confused Community Regular
Ok so I ordered the AFP Pepitzyde- from the place rachel orders her enzymes so I wil be trying it and preying that it helps because eating for me is really hard right now.

I hope it works for you. I havent taken them since i first got them. One day I will get brave again and take them, but im going to wait til my "bucket" is little less overflowing lol

paula

AndreaB Contributor

Mia,

Hope the enzymes help you.

mftnchn Explorer
sounds awesome!!

Sherry can you send the link again to that french website?? i'm super sorry it has taken this long.. i can't find the message i sent my friend to remind her.. and now she's worried about hurricaine dolly so.. but we haven't forgotten!!

Yes, it is Open Original Shared Link, and it is just the section with this number: N

mftnchn Explorer
Sherry, I had to take chlorella when I was passing the worms. The good news is, I felt so much better when they were gone! I still see one occasionally with the Enula, but not nearly as often as before. In the end, I saw three tapeworms (two small, one at least 7 ft), and I'd say over 20 roundworms (about 6-10 in long). No wonder I had GI issues! I felt like someone punched me in the stomach if I ate!

I'm taking chlorella and pectin, but probably should have added charcoal. Right now I am away from home so would have to buy some.

I'm not sure about the roundworms, but yeah that's the right size, although it could have been longer the other day as one end was kind of in a ball. They aren't really intact, but I can't imagine what else it could be. I even looked at the pictures on the colonix site--at the tissue pieces people pass (pretty yucky) and it doesn't look like that at all. It is so very creepy, and even though I am now kind of watching for it, it still is a shock.

I'm going to order another round of humaworm and take it with me. I test well for it so why not. I'm suspicious that I'm like you and have more of them.

Its amazing to me that nothing came up last time on ART--how could this not be a stressor to my system?

Sherry

mftnchn Explorer

Andrea, Dr. G. also shares some of his patients with Dr. Amy...so he'd be open to your working with Dr. E as well.

Sherry

AndreaB Contributor
Andrea, Dr. G. also shares some of his patients with Dr. Amy...so he'd be open to your working with Dr. E as well.

Sounds good. :)

CarlaB Enthusiast

The worms I saw, Sherry, looked digested .... I could see enough to tell whether they were round or flat, but it was more like a partially digested food would look ..... still intact though, just like the insides were gone.

It might be that the worms just weren't one of your bigger stressors. :)

I belong to a health club that is a national chain. They have a magazine they send out to all their members. I've been in contact with them hoping they could use me for a success story so that word could get out about Lyme Disease. Well, I heard back today that they are running my story next June! It may be a success story, or they may do a feature on Lyme Disease. :D YAY!

Nanjkay Apprentice
I am also going to look for probotics today. Anyone know of ones that pretty much free from everything lol.

paula

Hi-

I am going to try Natren's probiotics-

Open Original Shared Link. They have a great rep, are human strain and offer "beginner" and more advanced probiotics.

Right now, I use/rotate Mega Flora by Mega Foods (gluten-free, CF and possibly soy free), ProBio by Enzymatic Therapy...(they have no fillers, no anything), JarroZymes are good and ProGurt which is an Australian company that is the human strain culture to make your own yogurt.

Nancy

Nanjkay Apprentice
Sherry, I had to take chlorella when I was passing the worms. The good news is, I felt so much better when they were gone! I still see one occasionally with the Enula, but not nearly as often as before. In the end, I saw three tapeworms (two small, one at least 7 ft), and I'd say over 20 roundworms (about 6-10 in long). No wonder I had GI issues! I felt like someone punched me in the stomach if I ate!

Carla-

Which of the three causes the worms...babs, bart or Lyme? Will they pass without...prompting; are the ABX enough or do they need prodding???? Can I take Enula or Humaworm while I am on the antibiotics? And if so, can I take the zeolite or chlorella with it even though I have the mercury filling?

I am having symptoms up and down the GI tract since I started the ABX. Stomach is never right. It is either on fire, putting off tons of heat or I am nauseated or in pain as the small intestine contracts, or cramping, or burning or heartburn etc. I am drinking Healthy Stomach Tea (along with enzymes and probios) and that seems to help, but I don't see Dr. H for 5 weeks and would like a little relief.

Nancy

Nanjkay Apprentice
I belong to a health club that is a national chain. They have a magazine they send out to all their members. I've been in contact with them hoping they could use me for a success story so that word could get out about Lyme Disease. Well, I heard back today that they are running my story next June! It may be a success story, or they may do a feature on Lyme Disease. :D YAY!

Amazing. Good for you. Great that you are strong enough to help others and get out the word. I am happy for you. I think Lyme is much, much more prevalent than anyone realizes yet. The more I think about it, I think a third of the people I know have it!!!!

Nancy

Green12 Enthusiast

Kassandra, I am so sorry to hear you had another terrible reaction :( I hope your Drs can put their heads together and come up with something for you.

Mia, good luck with the enzymes, I hope they help!

Hi rinne! I am taking iodine. I can't remember why my Dr put me on it, it might have been thyroid issues.

Paula, I take HMF Forte for my probiotics. I think it's by Seroyal.

Carla, congrats on your story being run in the health club magazine!

Rachel, how are you doing with the zeolite so far?

CarlaB Enthusiast
Carla-

Which of the three causes the worms...babs, bart or Lyme? Will they pass without...prompting; are the ABX enough or do they need prodding???? Can I take Enula or Humaworm while I am on the antibiotics? And if so, can I take the zeolite or chlorella with it even though I have the mercury filling?

I am having symptoms up and down the GI tract since I started the ABX. Stomach is never right. It is either on fire, putting off tons of heat or I am nauseated or in pain as the small intestine contracts, or cramping, or burning or heartburn etc. I am drinking Healthy Stomach Tea (along with enzymes and probios) and that seems to help, but I don't see Dr. H for 5 weeks and would like a little relief.

Nancy

Nancy, from what I saw on Under Our Skin it's the general weakening of the immune system due to the Lyme that enables the worms we are all exposed to to take hold.

I took both Enula and Humaworm while on abx. I know for sure that Enula can be taken with them (it's generally used for babesia).

Bart is notorious for GI issues. I was treating parasites and bart at the same time .... all of a sudden my GI issues cleared up with that treatment.

When the article finally runs, I'll give you all a link to it. ;)

aprilh Apprentice
Hi-

I am going to try Natren's probiotics-

Natren is a good brand :)

Everyone,

I got my zeolite today....

Rachel how are you doing on it? How many drops are you doing?

I was thinking i would start with 3 drops 2 times per day? Lisa do you think that is too small a dose?

Carla,

That's great about the article.

Nancy,

I wonder if you'll have little wormy's too.

Julie,

How are you doing on the new diet.

Guest tamedandfoxed
I belong to a health club that is a national chain. They have a magazine they send out to all their members. I've been in contact with them hoping they could use me for a success story so that word could get out about Lyme Disease. Well, I heard back today that they are running my story next June! It may be a success story, or they may do a feature on Lyme Disease. :D YAY!

THATS AMAZING!!! CONGRATS!!!!

Toxic

I don't think i am toxic.. i've been doing zeolite and foot pads and the latter will be brown i guess in the morning but only a little.. i think part of it is the pads don't stay on my feet well! grrr. i don't know. i talked to a nurse practitioner friend of a friend today about my infection... it was after a WONDERFUL day, walk in the woods, bike ride, trip to the beach! and was just in a good mood and this woman was all "WEll it might just be something you have to deal with for awhile.. it can go away and come back in a year.." basically NOT what i was in the mood to hear.. i'm so sick of people acting like this thing is no big deal or something that i should "learn to manage". I have the right to feel angry and the right to feel normal. needless to say i'm a little livid and a little bitter at this point. I know i have my sugar binges and whatnot but i have been working with it since FEBRUARY! (i know some have been struggling longer... it's just that this is so different than my stomach or any other part of my body...) and i've been extremely disciplined! and haven't seen any rewards for my work. :angry:

now 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

mftnchn Explorer
The worms I saw, Sherry, looked digested .... I could see enough to tell whether they were round or flat, but it was more like a partially digested food would look ..... still intact though, just like the insides were gone.

It might be that the worms just weren't one of your bigger stressors. :)

Carla, that's great news about the story! Make sure they let you read the final draft so it isn't distorted by editors that don't understand...

Okay, then I feel even more sure about what I saw. Sounds like mine were more digested than yours, but still intact enough to see long fibers, and for the thing to hold together in a long skinny piece. TMI--sorry everyone, but I hope it helps people.

Carla did you notice on the Enula when you started passing the worms, and how long? This happened after 3 weeks on Enula and Humaworm, but I am suspicious that it was the SCD that tipped the scales in killing the beasties.

Nancy, I've also read that worms are much more common in celiacs. Of course there is also immune suppression and gut compromization in celiac.

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 still don't feel great, but it is likely a herx, and it isn't super severe.

Sherry

Green12 Enthusiast
I got my zeolite today....

Rachel how are you doing on it? How many drops are you doing?

I was thinking i would start with 3 drops 2 times per day? Lisa do you think that is too small a dose?

Julie,

How are you doing on the new diet.

Yay April, glad you got your zeolite! I'm interested in hearing how you do with it, good luck :)

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.

i'm so sick of people acting like this thing is no big deal or something that i should "learn to manage". I have the right to feel angry and the right to feel normal. needless to say i'm a little livid and a little bitter at this point.

now 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, it might just be a matter of finding the right person to work with to get to the bottom of all of this for you. Don't give up, keep searching for the answers.

Okay, then I feel even more sure about what I saw. Sounds like mine were more digested than yours, but still intact enough to see long fibers, and for the thing to hold together in a long skinny piece. TMI--sorry everyone, but I hope it helps people.

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 still don't feel great, but it is likely a herx, and it isn't super severe.

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.

Rachel--24 Collaborator
I was in tears too, how incredible is that!

Yeah Rinne...it was amazing! A really emotional moment for those 2 guys I'm sure. It made me happy. :)

Also I am starting back on Iodine, using Lugol's for painting the soles of my feet and thinking I will start taking Iodoral, spelling? Has there been much discussion of Iodine, I can't remember but I picked up a book on it recently and am thinking it would be good to take.

I dont think we've talked much about it here but I've read some stuff here and there on other boards.

Let us know how its working for you. Also, the zeolites...I'm on my 4th day I think. :)

Archived

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

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

    • Total Members
      132,919
    • Most Online (within 30 mins)
      7,748

    globello
    Newest Member
    globello
    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

    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • 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
×
×
  • 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.