Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

truthsearcher Rookie

Quote from Rachel

To treat or not to treat is a personal choice...I'm just someone who prefers to wait for help from the Dr.'s and I think its the safest way to go.

Oh how I wish there were Drs anywhere near me that had a clue what is going on.

I don't have a choice but to self treat even tho I prefer to have a knowlegeable Dr. help me. I'm hoping my new llmd knows all about candida and heavy metals.

And if I need weekly IV's of dmps I have no idea how this is going to happen or who will do it. Also my llmd does not do ART or LED.

Something has to really change in the health care system! And I know one person running for Prez who I could see something change for the better but theres no way the powers that be will allow that to happen.

Rachel,

could you please give me a link to Klinghardts detox pathways info? Thank you so much for what you do for all of us.


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
Rachel--24 Collaborator
I know in 99 out of 100 cases they would show up on a test, but lets just pretend its less then that.

Paula...it really *is* less than that!

Parasites are not easy to diagnose...there are thousands of them and we only have tests for about 50!!

I was probably only tested for about 5 of them in all the stool tests I did.

I've always felt pretty certain that I have parasites...heck....all this food's gotta be going somewhere!!

I've just been working with the Dr.'s...one step at a time. Its been over a year and now we are getting to the parasites.

It didnt kill me to wait to treat the parasites...if they are there eventually something will show up. :)

Rachel--24 Collaborator

Dr. K.'s nurse travels to the East Coast often. I think she might be the best person to ask about ART practitioners over there.

dlp252 Apprentice

Sorry Kassandra...I went to school TOOOOOOOO many years ago and too many brain fogged years ago to remember. :P

confused Community Regular
Paula...it really *is* less than that!

Parasites are not easy to diagnose...there are thousands of them and we only have tests for about 50!!

I was probably only tested for about 5 of them in all the stool tests I did.

I've always felt pretty certain that I have parasites...heck....all this food's gotta be going somewhere!!

I've just been working with the Dr.'s...one step at a time. Its been over a year and now we are getting to the parasites.

It didnt kill me to wait to treat the parasites...if they are there eventually something will show up. :)

Ok just one more question before i head out the door, Would people with parasites be more likely to be skinny then overweight because the parasites eat the food. Or is it like with celiac some are skinny and malnourished and some are overweight.

paula

Rachel--24 Collaborator
Rachel,

could you please give me a link to Klinghardts detox pathways info?

I dont have anything from Dr. K. regarding detox pathways specifically. Is there something that was mentioned before??

I can give you a couple good links with some helpful info. from Dr. K.

Open Original Shared Link

Open Original Shared Link

Hope this helps Laurie. :)

truthsearcher Rookie

Rachel,

Thanks. That will keep me busy for a loooong time.


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator
Ok just one more question before i head out the door, Would people with parasites be more likely to be skinny then overweight because the parasites eat the food. Or is it like with celiac some are skinny and malnourished and some are overweight.

paula

Paula..

Heres a post I "borrowed" from someone I know on LymeNET....a patient of Dr. K.'s.

Shes sharing what she learned from him..

Probably the most overlooked area in medicine is the worms in people. The worms are a double-edged sword: 90% of us here have them without knowing it. When somebody has worms, the worms send out neural messengers -- messenger molecules that suppress our immune system.

What it does is create a lazy gut, which for some people is okay; like the chronic indigestion, slow, slightly constipated sort of mood that many people are in -- and it's great as a treatment for Crohn's disease and colitis because it suppresses the immune system locally, you don't get the inflammatory reactions. However, it comes at a big price.

It comes at the price that the immune system in general has defects. It's put to sleep by the neural messenger molecules from the worms, and this is when the viruses, the giardia, the amoebas and the candida and all those tings mutate in more aggressive forms, and Lyme Disease becomes much more of an issue.

Since he lived in India for a couple of years, he was very aware of the worm issue. In India he ran an immuno-diagnostic lab in their hospital that they had there, and they had some of the best microbiologists working for them, seeing them on the microscope. They examined the stools of Westerners - when the Americans came there on their first day of coming there, they examined their stools, and found that they were already full of worms when they got there.

They didn't get the worms there in India; they came there with the worms. In fact, the Americans were more infested than the Indians living there. However, the worms were in a very subdued state. They were the same species or worms but were much, much smaller, often just microscopic. You could only see them under a microscope, but they identified them with their antigens, and they realized that worms are throughout the world, an incredible illness, except that in the West, they had adapted to the more sanitary conditions and were in different forms, but were incredibly involved in immune suppression.

This today still isn't known in the West, but for 30 years since then he has been looking at that, and using his direct resonance test with the worm slides and he finds them in a lot of people. Recently he started taking a shortcut -- why bother looking through 60 slides and finding out which worm it is? He simply tests the worm medicines and gives it to people.

There are two (or 3 or 4) drugs that I know he uses frequently if a patient tests positive for them. He often recommends they do the Arise and Shine program first. It

aprilh Apprentice
I do feel very blessed. ART is taught by Dr. K....he's in Washington so I think thats alot to do with having more access to this type of testing on the west coast. If you want I can give you the contact info. of my Dr. in Washington and the contact info. of another ART practitioner (Dr. K.'s nurse)...one of them might be able to tell you of someone who might be in your area.

YES I would love to try and find out if there is someone over here!!! I have done searches on the internet, and haven't found anything that way.

April...this sounds really promising. :)

I'm excited for you!! I hope he knows his stuff....I think that since you've been learning about this stuff for awhile now...you'll be able to tell if he's the right Dr. for you. I'm keeping my fingers crossed! :)

Thanks! I hope so too! Tomorrow I will know. I already have all of my records together, symptom list typed up, along with the "chain of events" that got me to this point AND the tests and questions I think I need. He he! So, I hope I leave there with a calm feeling that he will be able to help me get to the bottom of this.

aprilh Apprentice
Paula..

Heres a post I "borrowed" from someone I know on LymeNET....a patient of Dr. K.'s.

Shes sharing what she learned from him..

Wow! Very interesting! All the more reason I need to find an Art Practitioner!!! :(

tabasco32 Apprentice

Hey everyone

How is everyone? Wow all that wormy talk got me craving spaghetti. Just kidding.

I don't know if I have them. I'm sure I do since I always was craving ice cream.

I hope all goes well with you april and miamia. I had a colonoscopy. I drank the liquid. gross. I woke up in the middle of the procedure. Talk about pain.

Yes I did get a needle in my privates. I had to take my drawers down and all. :wub: It hurt some.

talk to you later

lisa

running out of time here.

Rachel--24 Collaborator
Yes I did get a needle in my privates. I had to take my drawers down and all. :wub: It hurt some.

I love how she says this...all nonchalantly...like it happens everyday. :lol::lol:

Ok...yeah...I could see why Dee would be holding your hand through this.

Right now I'm pretty much considering myself lucky cause I only got needles in my head, hands and feet. My drawers stayed on!! :D

I dont know if I could have went through with that. :ph34r:

confusedks Enthusiast
Yes I did get a needle in my privates. I had to take my drawers down and all. :wub: It hurt some.

Lol! I guess if it helps...hey, why not?! :rolleyes::lol:

I love how she says this...all nonchalantly...like it happens everyday. :lol::lol:

Ok...yeah...I could see why Dee would be holding your hand through this.

Right now I'm pretty much considering myself lucky cause I only got needles in my head, hands and feet. My drawers stayed on!! :D

I dont know if I could have went through with that. :ph34r:

LOL! I know...I had acupuncture a few times, and my pants came off, but needles were never actually "in" me "down there." :lol: :lol:

elisabet Contributor

Hi Rachel,

I was reading your Posts going on a low oxalate diet and...I wonder if you are checking your PTH and ionized calcium ?

elisabet

confusedks Enthusiast

I see you Jin! :P Can't sleep....stupid Lyme!!! :angry:

Nyxie63 Apprentice

Kassandra,

This is from wikipedia:

The Swedish colonization of the Americas included a 17th-century colony on the Delaware River in what is now Delaware, New Jersey, Pennsylvania, and Maryland, as well as two possessions in the Caribbean during the 18th and 19th century.

There's a link here on the colonization of the US: Open Original Shared Link

That article covers Spanish, French, and English settlements.

Open Original Shared Link - this one covers dutch colonization.

Think that should take care of it. :)

confusedks Enthusiast

Nyxie,

Thank you, thank you, thank you!!! :D

Nyxie63 Apprentice

Kassandra,

You're welcome dearie. :)

mftnchn Explorer

Well, my liver enzymes were a bit better, only one elevated this time.

Rachel thanks for posting that info on parasites. This is something I'll be checking further next week when I see Dr. E.

Sherry

miamia Rookie

thanks for the feedback on the colonoscopy- I will definitly be looking into the osmo- prep I do not do well with drinking stuff!!!!

I think i managed to schedule my appts. The sonogram i can get done next week but I ahve to wait til feb. 1st to get the colonoscopy and endoscopy. I'd rather not wait but i can't afford it if its not covered.

I ahve had a really bad 3 days now - worse than usual I am thinking about making an appt with the women who does my muscle testing to see if i can get some insight into what exactly is making me this uncomfortable. I really hope she can see me I think she is in the city today.

NoGluGirl Contributor

Dear Kristina,

I am sorry you still have that stupid flu. :( It is no fun! You sure are amazing to be able to go to work in that state! I admire you for sure! Being chronically ill is bad enough, but to catch that nasty bug on top of it is extra terrible.

You may not react to the veggie burger right away. Some people have delayed reactions. It can take up to a few days after eating a food to react to it. Keep your eyes open for symptoms. It would be great if Celiac is not the trouble. Gluten intolerance can be temporary. A lot of people with yeast develop it.

Dear Mia,

Sorry about the Levaquin still giving you a hard time. Improvement cannot come soon enough when you are miserable. Carla took quite a while before showing a decrease in symptoms. Hopefully, you will begin noticing some good things soon. Just take it as easy as possible in the meantime.

Sonograms are not bad. The difficult part for me was not being able to eat. They did one on me for my gallbladder. Nothing showed, though. An abdominal ultrasound also is used to detect liver problems.

Colonoscopies are not fun. I had one on top of intercolisis, a gastric emptying study, and an endoscopy while up at IU Med. They nearly killed me! However, these doctors you have are obviously more intelligent and capable. I had a whole team of morons working on me up there, and I do not even know if they took a biopsy. If they did, it is doubtful they were looking for Celiac.

Basically, it is like everyone else said. They gave me eight laxative pills and two oral enemas. It shot out of me like lightening. I was later told that I was very clean inside. :lol: You have to only have clear liquids for the day prior to the test on top of drinking the Golightly preparation. I was unable to drink that much at once, so that is why they had me do the other stuff.

Once you are cleaned out, they have you taken to the procedure. You can do this the same day, or be put in the hospital to do it. They have you put on a gown, lay on a gurney, turn on your side, and then attach an IV to you. Some people choose to be awake, while others prefer to be put out. I was put out. When I woke up in recovery, I got a soft drink. :) I also got my pictures, which was kind of neat. The colon looks like a pink cave.

I hope you start feeling better soon. It is difficult to deal with all of that stuff. Things should work out somehow. Just keep thinking as positive as possible. I am pulling for you!

Dear Sherry,

I had heard similar things about wormwood. Narcotic effects is what it was often used for. I have never tried it. I figured by its name it must have anti-parasitic properties. That was the only thing that made sense!

I am glad the gua sha was less painful this time. It sounds like you are removing your toxins! Every little bit helps. Maybe you will get the chance to do it before leaving to the U.S. I hope you do!

I could not imagine having to go everywhere by motorcycle in this cold weather! That must be uncomfortable! Maybe things will warm up a bit over there! We can hope. Bundle up!

That is great news about your enzymes! I am glad. We were worried. Liver enzymes are weird sometimes. Those anti-fungals and abx can really do odd things to your system.

Dear Julie,

I have heard a lot about wormwood as a narcotic, but not as medicinal. The name reveals a lot. Killing worms must be what it specialized in. Many people named plants by their uses. Some have been used for centuries.

Thank you for the enema information! :) Acidophillus enemas would probably be helpful for me. Since yeast hides in the colon the most, that would be a good way to flush it out. Enemas can help prevent severe die-off when trying to eliminate Candida. I will be sure to keep the lemon water and coffee enemas in mind. I am not sure if I am brave enough to attempt those just yet.

Coffee enemas may not do anything but add more stress to my system right now. I am concerned about my liver being stressed. Not having a gallbladder adds to this, I am sure. I get pain there all this time after surgery. I worry about having stones in my bile ducts. :unsure:

I did not know menstruation relieved our body of toxins. That is cool! This might explain why my menstrual blood smells so toxic. It also is very dark. Should I be worried?

Parasites do hide in many places. It is kind of scary. Treatment can cause major problems if done improperly. Seeking a professional is important with those things. Doing stuff on your own can ruin your body.

Candida and I! :lol: This is the story of our lives. My show would be The Yeast Years. Stupid yeast drives you crazy! No matter what, it manages to survive.

Dear Andrea,

I do not know why the board does that. My post notifications come most of the time. Every now and then they do not. Once per thread is the average. I have gotten numerous notices at times, though.

Have you tried going without the probiotics? You mentioned doing that. Mercury can methylate when L. Acidophillus comes into contact with it. I am still taking mine faithfully every single day. I get ill if I miss a dose.

Insurance companies suck. They screw everyone. These people will do anything to get out of paying a bill. Who cares if it is Cancer? It is all about money, and they do not want to pay. :angry:

Finding practitioners in ASYRA and ART will be unlikely in my area. I should contact Scott. Do I just go to the site, and e-mail him? Is that how it works? I have never done this before.

Dear Kassandra,

Getting school work done is difficult while trying to keep up with this thread! Back when I was finishing my Associate's degree, I had that predicament. Even people not in school have a hard time keeping up with us! Try to pace yourself. That is the best thing to do.

I would love to do live chat with everyone, too! I will send a PM to anyone interested. I can also e-mail people privately with my AIM ID. That might work better. Let me know which you prefer.

My reactions to gluten are almost immediate as well. Sometimes I react before I can finish eating something. Other times, it can take between 30 minutes to 2 hours after I eat. It does not matter if it is cc or not. I am extremely sensitive, so it can be the most microscopic amount and I will react as quickly as a person would who ate a slice of bread.

Thank you for the information on ferritin! Maybe I should have that checked. My fatigue is pretty bad. I do have times where I have a burst of energy, but it rarely lasts more than a couple of hours. Do you get sicker if you do too much in a day? B Vitamins do help, but I need to find a sublingual version, since I do not think I am absorbing any through my gut.

The 6WMBO is a smart plan. It is about health. That is why it is so great. Most focus on you being skinny, not thin and healthy. I really am anxious to do this. I will let everyone know when I order it.

I am laughing about your friend doing the Special K diet. I used to do stuff like that. I tried every new plan as a teenager. I have always been a fitness person. It is amazing what you realize later on that what you did before was so unhealthy and really did not work.

I used to have periods like that, too. The Depo is the only thing that stopped them. I used to be anemic from the heavy bleeding. Cramps were so bad the first few days, I could not even stand straight. It would shoot from my uterus down to my rectum.

Yes, I am awake. I am a nervous wreck about my appointment. I hope things go smoothly. I really have to get this tooth out. Sorry you are not sleeping. I have a lot of days like that, too.

I recall the Spanish settled in Florida. The Dutch have territory in PA. English colonies were settled specifically in Plymouth and Boston, MA, along with VA. Remember where Pocahontas lived in Jamestown?

Swedish settlements I am not sure about, though. Thank goodness Nyxie found that info!

Dear Donna,

Your weather sounded pretty scary! We have had that here a lot. The other day, it rained like crazy. Just what this house needs, more mold! Our siding came off because the wind was so bad. We are not sure if we can get it back on ourselves.

That Pectasol sounds like it was helping you. Maybe you should get more? It is a shame so many of these supplements are expensive. I hope you can buy more soon. This seems to be a part of the C puzzle.

I am a quick typist. I average about 60 wpm with 99 percent accuracy. There are slow days, though. Thanks to this space heater, I do not have such an issue with that lately. Cold hands make typing difficult.

The link between copper and adrenal exhausting is interesting. I have no clue about my levels. I do not think I was ever tested for those. Maybe I should be. The trouble is affording it.

I react similarly to sedatives and anesthesia. At the time they did my tests, I was underweight. That probably made it harder for me to recover. It was quite unpleasant. I think they overdid the drugs.

I remember high school. It sucked! I wish I was not afraid to be myself. I am proud of who I am now. I wish I knew then what I know now. That is one way this illness has been a blessing.

I did not eat anything after my colonoscopy. I was incredibly drugged. They did my tests one after the other. Over a 4 day period, I did all of them. I will never do any of that again!

Dear Lisa,

I had no idea they did accupuncture in the gums and labia! :o That is news to me! I am not sure I could have someone doing that to me in that personal spot. What do they treat by placing the needles there?

I know there are specific places to put the needles for various parts of the body.

Congratulations on going so long without ice cream! That probably has been a challenge. You get addicted to stuff. I am not a big ice cream person, but now that I cannot eat it, I miss having it. Is that odd, or what?

I am glad your laser therapy went well. Progress does not come fast enough for anyone. You know how that goes. I am anxious to get the ball rolling. The trouble is figuring out how to do it.

Perfume really bothers me. I actually get queasy and even ache all over from it at times. My mother wears it. Dad wears cologne. The spray for the dog also bothers me a lot.

It is not surprising your toxins taste metallic. That makes sense. You have a lot of metal in you. My blood smells and tastes very metallic. I have a bad feeling about that. Was Dee alright? She must really have been affected by your toxins!

I probably have parasites, too. Candida tends to have them with them. I get so frustrated with that.

The idea of a worm being in there is scary. It is also gross. What can you do, though? They really are better to remove than keep.

If you woke up in the midst of the colonoscopy, then you had to not have had enough anesthesia. My brother had something similar happen. They must have bruised his colon. His doctor was rough. He was very ill after the procedure.

Dear Paula,

Chat can easily be done on AIM. All you have to do is log on. Then, go up to My AIM. You just send an invite to the person you want to chat with. After that, you do more and invite them in that way. If you want, I can do this for us. It may not be easy to set up a time, since we all are on different time zones, but we can try! I can PM you my name on there when I type out the list for eliminating on the Candida Diet.

That is awful your computer crashed! Thank goodness you got it up and running again after a couple of hours! These things just do not want to cooperate, do they? Mine has moods. Somedays, it just plain will not work.

You probably got sick from being hungry due to the blood sugar. Mine gets low and does that to me. I get nauseated if I do not eat on time. Getting shaky, dizzy, sweaty, and having heart palpitations is common with hypoglycemia as well. Be sure to eat 15 grams of carbohydrates with some protein to help keep blood sugar steady. I even have to wake up in middle of sleep to go eat something.

What the heck made your microwave explode? Was it due to cleaning up after the mold? Or, was it something else? Our circuit blows all the time in our kitchen. The guys who installed our microwave messed something up. This never happened before we got it in!

I am glad you got a confirmation! That helps a lot. Now you know you are on the right track! Treating it can be frustrating. There are problems to deal with. At least your way of eating is pretty close to what the diet is already.

I hope you had fun at the hockey game! Who won? It would be nice to go to a game. I never get to do anything like that. I barely get out for doctor's appointments.

You can have parasites and be overweight. Sherry said she had them, but was not skinny. You would think you would be stick-thin. Keep in mind that our body sometimes swells with fluid to pad the organs and protect them. This is referred to as false fat. People with food allergies often lose a lot of water weight after removing the allergenic food from their diet.

Was it you who asked about doing that olive oil/lemon juice cleanse? I have not tried it. Intolerance to fat left me afraid of trying it. I heard of a gallbladder cleanse with olive oil and psyllium husk, too. Since I do not have one of those, and cannot tolerate psyllium, that probably would not help me much!

Dear April,

Lyme symptoms do flare with your hormones. My situation tends to be similar. I have been having a period off and on for the past three years. I have no idea why. Breakthrough bleeding is not uncommon with the Depo. Still, why would it begin after I had already been on the shot for so long?

Yes, there are parasites you can get in your brain. One of them is called a fluke. They have been mentioned in Alzheimer's patient information. I read a book called "Beating Alzheimer's" by Tom Warren.

He had them. You never would suspect those things to end up there. Worms can travel to the brain, too.

Good luck with the new doctor, today! He sounds very good! Plus, you are all organized. That helps a lot. I am sure he will appreciate that.

I was a nerd in high school. I still am a nerd. Being a dork is just natural for me. Intellect is something I cannot live without. Mental stimuli is important for me. My father is that way, too.

Dear Carla,

I always feel worse during the time my usual cycle was. That would make sense if this is Lyme. I know something is bad wrong. No one feels this bad all of the time unless something is seriously messed up in their system. There is just too much wrong!

Thank you for the Lyme chat links! I may pop in there this week. This would be interesting. I might learn something from people on there. Information is important.

It is good that you gained 6 pounds back. I can see why you do not want to gain any more. Losing weight is my goal. However, I want to have some muscle. Tone is good to have along with looking lean.

Your last herx seems to have put you through the ringer. That does not sound fun at all! I hope you begin recovering more. Herxes are kind of weird. You might have one that is not bad at all, and another that is terrible. I am glad you are doing better now. Maybe the trend will continue!

The laser seems to be nice to have! I would love one. My parents were intrigued. I would need to stick that thing on my stomach. That is where my biggest issues are.

Dear Birdy,

That copper toxicity info was interesting! Thank you for posting it! I never knew some of this. Someone my best friend knows had it, and she was horribly sick. I think she recovered from it, though. She had all kinds of food allergies.

I ordered my IgeniX test the other morning. It probably will take a couple week to get here. I think it comes from California. I need to call the doctor's office and let them know I ordered it. The woman on the phone also was wonderful and told me which test codes for the WBs. There is no way she can back out of helping me now!

Let us know when you go to BioSet. Everyone will be anxious to hear what showed up. I am so glad you are going to see the LLMD next month! That will be a great help, I am sure. Just hang in there!

What a relief the liver pain going away must be! Ionic magnesium sounds like wonderful stuff! I would not mind trying some of that. My liver is probably very stressed. There is no telling what all is going on in there.

What a bummer about the h. pylori. That is one awful bacteria. Killing it is very difficult. If it gets buried too far down into the lining of the stomach, very potent antibiotics are the only hope. At least, according to my research, that was the case.

Dear Rachel,

Thank you for the parasite info! Who knew? These things are very interesting. Gross is another good and accurate thing to use to describe them. Still, all the more fascinating they become. Talk about mixed feelings!

ART would be great to get the chance to do. So would BioSet. Do I just e-mail Scott? Is that how this works? You go to his site, and just e-mail him?

Not many people were good students in high school. I was great at history, art, foreign languages, English, and some others. I did have more trouble in science and math. Part of it was our teachers. They were mostly coaches, and did not hold a degree in the subject they taught.

Self-treatment is a bad idea. You always end up hurting yourself. That is why I am afraid to do anything. Harming yourself can occur. People need guidance on these matters.

Dear elisabet,

Welcome to the thread! I think Rachel just had her mineral levels checked. She has been undergoing chelation treatments recently to remove metals. Minerals are often low when doing this. As a result, Rachel gets IVs with minerals every other week.

Dear Nyxie63,

Osmo Prep sounds much better than what I had! Golightly does cause explosions. I could not drink that stuff. So, they gave me eight laxative pills and two oral enemas. Talk about explosive! I was very cleaned out. The pictures were kind of neat, despite the fact it was the inside of my butt.

That information you found for Kassandra is great! I marked those sites. I like history! It would be interesting to read some more. It has been since like eight grade for reading some of that stuff!

Dear Laurie,

I know how you feel! Doctors here are the same way. They have no idea. I am tired of this wait and see crap. It is not their life that has been put on hold all of this time.

Dear Everyone,

Well, I am busy being a nervous wreck about my appointment. It is at 11:15 am. I hope I make it through. This stuff stresses me out so much! I wish I could stop worrying about this stuff.

Sincerely,

Jin

dlp252 Apprentice
Ok just one more question before i head out the door, Would people with parasites be more likely to be skinny then overweight because the parasites eat the food. Or is it like with celiac some are skinny and malnourished and some are overweight.

I see that Rachel posted an EXCELLENT excerpt that answers this. I am not underweight and at the present time am about 10 pounds overweight. So yeah, don't have to be skinny, lol.

Thanks! I hope so too! Tomorrow I will know. I already have all of my records together, symptom list typed up, along with the "chain of events" that got me to this point AND the tests and questions I think I need. He he! So, I hope I leave there with a calm feeling that he will be able to help me get to the bottom of this.

Can't wait to hear what happens!

I love how she says this...all nonchalantly...like it happens everyday. :lol::lol:

:lol: no kidding! Wicked sense of humor she has, lol! :lol:

I ahve had a really bad 3 days now - worse than usual I am thinking about making an appt with the women who does my muscle testing to see if i can get some insight into what exactly is making me this uncomfortable. I really hope she can see me I think she is in the city today.

Sounds like an excellent idea!

Nyxie63 Apprentice

I was kinda of bummed (pun intended) that they didn't do pictures during my colonoscopy. Asked the GI about it and he only says they do that if they find anything interesting.

Ruined my holiday card plan for this year. Was going to send out cards with the following message "Thinking of you in this season". The folks I like were going to get a copy of my CT scan. The ones I didn't like were going to get ones from the colonoscopy.

dlp252 Apprentice
I was kinda of bummed (pun intended) that they didn't do pictures during my colonoscopy. Asked the GI about it and he only says they do that if they find anything interesting.

Ruined my holiday card plan for this year. Was going to send out cards with the following message "Thinking of you in this season". The folks I like were going to get a copy of my CT scan. The ones I didn't like were going to get ones from the colonoscopy.

OMGosh, you would have loved the lovely color photos I got, lol. One VERY nice shot indeed, lol. It took my mother and I a long time to figure out just what shot it was, but when we did it was just HILARIOUS. I do admit though that most of my pictures (two sheets of 4 pictures) were of my upper digestive system...esophagus and stomach and upper intestine (they did a endoscopy at the same time). I think there was only two shots of the lower half of the body, lol.

confused Community Regular

Good morning everyone, isnt it such an lovely day. I feel so great today and im taking my girls ice skating after the boys go to school. But shhh dont tell the boys or they wont go to school.

Thanks for letting me know about parasites and the weight thing, and donna 10 pounds is not overweight lol. But i guess i shouldnt say anyting here i want to lose weight and im in normal bmi territory lol. I use to be so skinny in high school and wheni strted college, my nickname was ethiopian, everyone was happy when i started to gain weight lol. but then after having kids, everyone was like ummmmm, i think u need to lose some weight, I think everyone just worries cause everyone on my moms side is pretty big, my grandparents were over 300 pounds when they passed away and all the kids are big, even my mom who use to be skinny until she hurt her back. That is why i try to stay in an healthy weight im afraid of getting like everyone else in my family.

Jin,

Im afraid to add AIM on this puter after what yahoo did, so i am just going to stick to msn for now. Maybe when im feeling even better then today i will add AIM on the kids puter lol. I am still looking for an chat room, hopefully by sunday i will have one that is free and easy to use. Good luck at your appt, i hate dentist more then drs, so i know what u are going threw. But be tough if my 6 yr old could handle getting 2 front teeth pulled, then you will be fine lol.

I know im missing stuff but i have to go get ready for the girls day, please dont go overhoard on post today or ill never catch up lol.

paula

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,296
    • Most Online (within 30 mins)
      7,748

    JRGOODRIDGE18
    Newest Member
    JRGOODRIDGE18
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
    • cristiana
      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
×
×
  • Create New...