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

confusedks Enthusiast
confusedks
Posted

Julie,

That email you sent the other day was really cute! Then, my friend just sent it to me! :lol:

Donna,

That stinks about the sleep! I actually fell asleep around 2 this morning and I had to wake up at 9 because I was supposed to babysit...and then the mom emailed me and said she didn't need me! AH! <_<

Offthegrid,

Congrats on the jeans!!!! That's SO exciting!

Also, I was just told by the Dr. that I can keep the PICC line in for a couple months if I am really good about keeping it clean...so YAY!!! The Dr. was talking about pulling it in the next couple days but I didn't want to do that because I may need more IV's in a little while AND I may need it for IV abx. :D:P

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

Celiac.com Sponsor (A8-M):


  • Replies 33.4k
  • Created
  • Last Reply
AndreaB Contributor
AndreaB
Posted
And the little guy's insistence on baring my bellybutton still puzzles me! :huh::lol:

His bigger brother has made a game out of finding his bellybutton......maybe that's part of it. :lol:

confusedks Enthusiast
confusedks
Posted
:lol: they SO wanted to show me EVERY game!!!! :lol:

And the little guy's insistence on baring my bellybutton still puzzles me! :huh::lol:

:D:lol: :lol:

aprilh Apprentice
aprilh
Posted
So, here's my theory, lol. My sleep WAS getting better after starting the neurotransmitter supplements. Then it got bad again after starting the Humaworm. My doctor says that my body is working really hard detoxing, and the prime hours for detoxing are precisely when I'm waking up. So, my theory is that since the Humaworm is causing there to be a lot more that needs to be detoxed, I need to try to help it along a little more than I've been doing.

I have had the sleeping problem too since starting the Humaworm. This past week was the worst. I did acupuncture yesterday and slept very good last night! so, I went back and had a lymphatic drainage thing done because I thought that I was getting a sinus infection and I refuse to take antibiotics due to my Terrible Candida condition! So, hopefully those treatments are helping with the detox that Humaworm is doing.

I agree with you - I should be doing more to support the detox and haven't. I almost considered stopping the Humaworm but I am over half way through = so I think it would be better if I tried harder to detox.

Hope the baths help!

April

melmak5 Contributor
melmak5
Posted

Thank you to those who posted regarding my testing questions.

I think

1. I am cranky, I was told "no holiday food for you"

2. I am in denial. I honestly think that there is hope for pizza and beer in my future... I know it is messed up, but I keep thinking "maybe they got it wrong"

3. I am cranky (my dads 2nd eye surgery went well, but its been really stressful)

Thanks again and hopefully the endoscopy on the 27th will answer some of these questions.

confusedks Enthusiast
confusedks
Posted

Kristina,

I sure hope this upcoming scope gives you some answers! Keep us posted!

Donna, Carla or Sherry,

Do any of you take any meds in the middle of the night? When I was on the last round of abx for SBBO, I would wake up in the middle of the night to take charcoal...just wondering if you guys take any detox stuff in the middle of the night. (Carla, I know you take your ambien).

dlp252 Apprentice
dlp252
Posted

Kassandra,

I don't but I'm considering taking charcoal when I wake up the first time each night.

Melmark,

:lol:

April,

I haven't tried accupuncture yet, but maybe I should give that a try.

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

Celiac.com Sponsor (A8-M):


ShadowSwallow Newbie
ShadowSwallow
Posted

Everyone,

I've been meaning to post for days, but, man, you guys are fast! :P

The Lyme test I had from Fry Lab was the blood smear for coinfections. And, fortunately, I'm on up part of the Lyme cycle, I guess it's an early Christmas present from the bugs. :rolleyes:

Kristina,

I hope the endoscope helps your doctor(s) pinpoint what's going on. :)

Andrea and Tom,

So jealous! :lol::P

Offthegrid,

Congratulations on your weight loss!!!! :D :D :D

AndreaB Contributor
AndreaB
Posted
Do any of you take any meds in the middle of the night? When I was on the last round of abx for SBBO, I would wake up in the middle of the night to take charcoal...just wondering if you guys take any detox stuff in the middle of the night. (Carla, I know you take your ambien).

I'm not Carla but IF I'm remembering correctly she was taking charlcoal at night because it was the only time away from everything.

Kristina,

Hope your scope provides some answers for you......keep us posted. :)

happygirl Collaborator
happygirl
Posted

One year ago I had my first appt with my current dr. and got my first test results. Remember? I kind of got my Christmas present :)

jerseyangel Proficient
jerseyangel
Posted
One year ago I had my first appt with my current dr. and got my first test results. Remember? I kind of got my Christmas present :)

I remember that very well--hard to believe it was a year ago.

How are you doing these days, Laura?

AndreaB Contributor
AndreaB
Posted
Cute pic of your family on Tom's avatar, Andrea :)

One year ago I had my first appt with my current dr. and got my first test results. Remember? I kind of got my Christmas present :)

Thanks. :)

I remember. We were so excited for you and your early Christmas present. You have made a lot of progress this year and that is exciting too. :D

mftnchn Explorer
mftnchn
Posted
Sherry, were you treated for Bartonella? Is it the bottoms of your feet? I wonder if Bart could be what's been missing for you.

No I haven't been treated for bartonella, it didn't come up in my testing. I wonder too. I have pain mostly in the balls of my feet. My right foot especially. When I am having lyme pain, I get sharp pains in different parts of my feet. Top at times, big toes at times, I forget. This could be bart??

Donna, Carla or Sherry,

Do any of you take any meds in the middle of the night? When I was on the last round of abx for SBBO, I would wake up in the middle of the night to take charcoal...just wondering if you guys take any detox stuff in the middle of the night. (Carla, I know you take your ambien).

I've been setting the alarm to get up about 2 hrs after my last dose of Vit C (at bedtime) and take charcoal. I think it helps to take it at night. I know when I slept through a couple of days ago and didn't take any I felt worse in the morning.

dlp252 Apprentice
dlp252
Posted

Wow!!! How is it possible that our little community was the very last post on page THREE of the new posts, lol! :lol: That must be a first!

One year ago I had my first appt with my current dr. and got my first test results. Remember? I kind of got my Christmas present :)

Indeed!!!!! We were all so very happy for you!!!

No I haven't been treated for bartonella, it didn't come up in my testing. I wonder too. I have pain mostly in the balls of my feet. My right foot especially. When I am having lyme pain, I get sharp pains in different parts of my feet. Top at times, big toes at times, I forget. This could be bart??

I've been setting the alarm to get up about 2 hrs after my last dose of Vit C (at bedtime) and take charcoal. I think it helps to take it at night. I know when I slept through a couple of days ago and didn't take any I felt worse in the morning.

Yeah, I have a lot of pain in my right foot...just about what you've described. My bid toe has been especially bad in the last two months.

I took my charcoal in the middle of the night last night (I've had the bottle for a few weeks, but couldn't figure out how to fit it in, lol). I woke up around midnight, so went to the restroom, and took my charcoal. I did sleep a little better last night--still a bit restless, but the one thing I DID notice is that I didn't have as much burning in my abdomin.

How much do you take. I have solaray, and the instructions say to take 1 capsule (can't remember the dosage offhand), two times a day. I can't fit it in during the day so I'm wondering if I can take the two capsules at the same time at night, lol.

CarlaB Enthusiast
CarlaB
Posted
Donna, Carla or Sherry,

Do any of you take any meds in the middle of the night? When I was on the last round of abx for SBBO, I would wake up in the middle of the night to take charcoal...just wondering if you guys take any detox stuff in the middle of the night. (Carla, I know you take your ambien).

I briefly took charcoal, and that was in the middle of the night. I also took the cholestyramine once in the night for the months I was taking it. I was taking meds every hour or two during the day and could not fit all of them in if I didn't take it at night. Now I don't take anything but Ambien at night.

It seems like it's good to take the detox stuff at night anyway since that's when we're detoxing.

One year ago I had my first appt with my current dr. and got my first test results. Remember? I kind of got my Christmas present :)
Congratulations on one year! I forgot that you made it to the doctor before I did .... I didn't get there until Jan. 20th. At this point last year I was still waiting.

What a change a year makes!

No I haven't been treated for bartonella, it didn't come up in my testing. I wonder too. I have pain mostly in the balls of my feet. My right foot especially. When I am having lyme pain, I get sharp pains in different parts of my feet. Top at times, big toes at times, I forget. This could be bart??

The soles of the feet hurting is a bart symptom .... but as you know, it doesn't necessarily mean you have bart. Though since you have been being treated for so long and can't get off the abx, I would suspect an untreated coinfection.

Bart is also known for GI symptoms, so I would suspect it for you. Maybe it would help to look at a bart symptom list. Lymetoo on Lymenet posts the symptom lists on various threads .... you could probably do a bartonella search and have it come up.

Yesterday I felt fine all day, just a little knee pain .... today I woke up with a cough .... my chest hurts somewhat. I went to bed early and slept in (took Ambien three times, LOL). Normally I work out on Saturday, but I think I should skip it to try to fight this cold ... but other than the cold, I feel good, no Lyme flare, that's significant ... my second cold with no Lyme flare ... my second cold in two months. <_<

I got all my Christmas shopping done yesterday!!! YAY! Now I just need to do some wrapping today ... the kids and I will clean the house and get the wrapping done, so from here on out it's VACATION! :D

AndreaB Contributor
AndreaB
Posted

Donna,

Hope the charcoal helps you......it sounds promising. :)

It was really quiet here yesterday. I kept checking the thread because there are times I don't get notices (a couple times I was already 2-3 pages behind :o ).

Carla,

Colds, yucky, especially around the holidays.

I haven't been posting much as not much has been going on. Same ole, same ole as far as supplements. I always go into sneezing attacks when I turn the heat up in the mornings though. Makes me wonder what's in those vents, unless it's just plain dust. We have major dust problems in this house. I remember you guys posting about cleaning the vents.....don't have money to have that done but I'm sure they are bad. Mitch cleaned out what he could reach when we moved in 2 1/2 years ago and they were awful!

confusedks Enthusiast
confusedks
Posted

Carla,

Yay on the Christmas shopping! :) I finished mine yesterday and I can't WAIT to give my mom her gift...it's very exciting! (I figure since she took me to the LLMD reluctantly, she deserves a gift! LOL!)

Everyone,

My mom helped me write a schedule of all the things I need to take and I'm taking things 6 times a day! :o A lot of the things needs to be taken 2 hours apart...so ugh!

My mom also said to me yesterday that since being under the care of the LLMD, she FINALLY feels like we are secure with the advice he's giving us. She doesn't feel like we need to research everything and mention it to the Dr. like we used to do with all the 1000's of other specialists I have seen. I was quite shocked to say the least! (Birdy...see...there *IS* hope! :P)

Well, gotta go...get a manicure and pedicure! :D

AndreaB Contributor
AndreaB
Posted
My mom also said to me yesterday that since being under the care of the LLMD, she FINALLY feels like we are secure with the advice he's giving us. She doesn't feel like we need to research everything and mention it to the Dr. like we used to do with all the 1000's of other specialists I have seen. I was quite shocked to say the least! (Birdy...see...there *IS* hope! :P)

Now that is what I call a Christmas present! Great, great, great news! :D:D:D

tom Contributor
tom
Posted
My mom also said to me yesterday that since being under the care of the LLMD, she FINALLY feels like we are secure with the advice he's giving us.

Fantastic! What a relief that must be. :)

Now - grabbed this on Sherry's thread to reply to here. ;)

T asked if we'd see you again. I told her maybe next time you come up to see your sister.

Heck yeah! I'd love to! :) :)

My sister used to be nearly gluten-free, or at a minimum VERY wheat-lite. Not any more.

I've been in the presence of gluten more in the past 2 days than probably the cumulative amount of the past 4 yrs. :(

Don't think I've ingested any, but it was SO not what I expected. :(

AndreaB Contributor
AndreaB
Posted
My sister used to be nearly gluten-free, or at a minimum VERY wheat-lite. Not any more.

I've been in the presence of gluten more in the past 2 days than probably the cumulative amount of the past 4 yrs. :(

Don't think I've ingested any, but it was SO not what I expected. :(

That's gotta be tough. I hope you don't get sick from it. :(

dlp252 Apprentice
dlp252
Posted

Andrea,

I'm hoping the charcoal helps too...as much as I think I'd take an epsom salt bath every night...I'm lazy, and just know I won't, so the charcoal really would be perfect. I figure it can't hurt.

My vents haven't been cleaned probably every. Certainly not in the 20 years I've lived here. :( But, fortunately I don't use my heater. :lol: I DO use the air conditioner in summer on the hottest days though.

Kassandra,

Woohoo on your mom!!! That's great news! It must be girls day...I'm going for a massage in a little while. :P

Tom,

Be careful around all that gluten, lol!

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Just popping in....things are pretty hectic right now. Today was my only day off to get my xmas stuff taken care of. Big wigs are visiting the stores for the holidays....I've been working early all week. My "back-up" decided not to show up for work today so I had to go in and make everything look good...plus write the orders. :angry:

I've been VERY frusterated at work because all of the most unreliable people in the store happen to work in the dairy dept. :angry:

..and I'm not one of them! :o

So yeah...it seems like everyday someone that I'm counting on to keep things running smoothly calls in sick!! :angry: Today my backup didnt even bother to call in...he's just NOT THERE...2 days before Xmas and when we're expecting "company"....WTF!!?? :huh:

I had my mineral IV last night and this time it went really well...probably cause I didnt eat chocolate on my drive home. :ph34r:

I didnt get hit with the fatugue I got last time half way through the IV. The nurse said they were gonna administer it even slower this time because I got so tired last time. So it was over 2 hours for my IV this time. I sooooo wanted to talk on my phone. :P

I asked the nurse if I could talk on the phone since there werent any other patients in the IV room with me. She said that its really not allowed...but since I'm the only one there.... :)

She said "True story"....A patient had her cell phone in the IV room and somehow it ignited and then her butt was on fire!! :blink:

I was like...."really??" :huh: "How would her cell phone catch fire??" :unsure:

She said the lady had a heating pad on...so I'm assuming she maybe put her cell phone on top of the heating pad and somewhow it ignited?? :o Not really sure...I had always thought the rule was there so as to not didturb other patients who might be sleeping, reading, etc.

I never would have thought it was to keep our butts from bursting into flames!! :lol:

I got my Ketotifen yesterday...so I've started taking that again...for the next 30 days. I'm totally tempted to start the alinia...but I'm being good...not racheling treatments anymore. ;)

Parasites definately explains the ongoing problems with leaky gut, food intolerances, lack of weight gain, alien baby symptoms, etc....so hopefully I'll get some improvement with that. This is really the only area where I havent yet seen any improvement. I'm praying really hard. :)

I've been reading along here and there...I'm actaully not really behind with reading...just WAY behind with posting!

Ok...gotta run errands, drive to Manteca and then its back to work at 3 am. :rolleyes:

AndreaB Contributor
AndreaB
Posted
Just popping in....things are pretty hectic right now.

Sorry things are so hectic at work. :( You'd think they'd wake up and realize you need at least some dependable help! :angry:

Great news on the IV!......and not Racheling your treatments!

Hope you get some time to enjoy the traditional long weekend. So when are your days off if you're working today and tomorrow?

CarlaB Enthusiast
CarlaB
Posted

Kassandra, great news! That's how I felt, too, though I wasn't seeing all the specialists ... I just knew I was finally in the hands of someone who could make me better ... and he is!

Funny thing, even with this non-productive cough, I still feel better than I have in years! So, I'm not too bummed about the cold.

I really gave the kitchen a good cleaning .... still had construction dirt -- like on top of the cabinets, which I vacuumed. I oiled the wood, polished the counters, mopped the floors, got books out of storage for the shelves .... I was busy! The kids cleaned the rest of the house.

Oh, I wanted to tell you guys something about the laser .... we have an old parakeet ... about 8 years old ... she got liver disease and heavy metal toxicity, so the vet gave us some stuff to put in her water and some other stuff for on her food. That was back in August. We discovered the problem because her beak was way overgrown.

We saw no changes .... when I got the laser, I used "organs and systems" on her one time. Two weeks later, her beak is almost back to normal length (I had to cut a bunch of dead stuff off that was alive two weeks ago ... about a quarter inch!!!), you can't feel her ribs anymore, and she has more energy!

Now, she has been having the meds for a few months, but it seems like the laser pushed her over the edge back to health.

Green12 Enthusiast
Green12
Posted

Rachel, thanks for the update. You have definitely been a stranger lately and it's not the same without all your posts :lol: Sorry about all the stress at work :(

I'm glad your mineral IV went really well this time!

Laura, you've had an incredible year as well, and have come such a long way! It gives a lot of people hope.

Carla, sorry on the cold, but YAY on the no herx! That's amazing about the laser and your bird.

Donna, have a good massage! I'm thinking that might help break "things" up and move them on their merry way as well :D AND, you can just lay there, no work involved :lol: Good idea about the charcoal.

Kass, that's so great to hear about your mom's peace of mind with all of this.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,091
    • Most Online (within 30 mins)
      7,748
    RDB7918393
    Newest Member
    RDB7918393
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • RDB7918393
      Delayed reaction

      By RDB7918393 · Posted

      I was diagnosed with Celiac about 10 months ago after having on and off morning stomach cramping and loose stool that only occurred like once a month. So I don’t get immediate reactions…more if build up reactions. I do my best to be gluten free but hard when on vacation and going to restaurants to fully trust cross contamination problems. I find that if I’m cross contaminated, I don’t get a reaction til about a week or two after. The reaction is stomach cramping morning only with flaky stool. Does anyone else have such a delayed reaction like a week or two after being glutened? Or should I go for more testing to see what’s going on.
    • ElisaAllergiesgluten
      Polly-O all cheese products are gluten free?

      By ElisaAllergiesgluten · Posted

      Good morning, I saw that a lot of people were asking wether Polly-O products are gluten free. I just called them and all their cheeses are gluten free! Just wanted to let anyone know.    if you still want you can give them a call.
    • Sicilygirl
      Enegy level extremely low

      By Sicilygirl · Posted

      Thank you very much Scott I am glad that there is a light at the end of this tunnel. I am just very impatient and I want to heal asap. I apreciate your honesty in this isnce I am getting absolutely knowhere with the medical system. A year or more? God help me this is hard. But, I am so grateful that I found a site like your that can help me and put my mind at ease in all of this. An you started this and you are ghelping alot of us get through this little by little. I thank you for starting this. Is there a cure coming that you know of? I am in Canada and there is nothing here.   Sophia    
    • Scott Adams
      Rice, corn, and other gluten-free grains.

      By Scott Adams · Posted

      Your approach is spot-on—trusting reliable sources like Mayo Clinic and sticking to a gluten-free diet that works for you is the best way to navigate all the noise out there. The claim that rice and corn contain forms of gluten harmful to celiacs is indeed a misconception. While these grains do contain proteins that may technically be referred to as "glutens" in a broader scientific sense, they are structurally and functionally different from the gliadin found in wheat, which is the specific protein harmful to those with celiac disease. Scientific research overwhelmingly supports the safety of non-contaminated rice and corn for celiacs unless there’s a separate sensitivity or allergy involved. Some opinion pieces or alternative health sources may blur the lines by conflating these proteins, which can cause unnecessary worry. You're absolutely correct to focus on the distinction between scientifically validated information and anecdotal claims. It's also important to note that some people with celiac disease may develop sensitivities to other grains over time, but this is individual and not a universal rule. If you’re asymptomatic and thriving on a diet that includes certified gluten-free products with rice and corn, there’s no reason to change what’s clearly working for you. The internet is a breeding ground for well-meaning but misguided advice, and it’s easy to feel overwhelmed. Your instinct to validate claims through reliable research is exactly the right way to go. Keep enjoying your gluten-free meals, stick with trusted certifications, and don’t feel pressured to adopt restrictive diets that aren’t backed by science or tailored to your specific needs. Happy New Year to you too!
    • Scott Adams
      Enegy level extremely low

      By Scott Adams · Posted

      Healing and regaining energy after a celiac diagnosis can be a frustratingly slow process, but you're not alone in feeling this way! Everyone's healing journey is different, and factors like age, how long celiac was undiagnosed, and the extent of intestinal damage can all play a role. In general, villi can begin to heal within a few weeks to months after starting a strict gluten-free diet, but for some adults—especially those diagnosed later in life—it can take a year or more to see significant improvement. Studies suggest that older adults may heal more slowly, but it does happen with consistent gluten avoidance. Since you're already taking iron, vitamin D3, and a multivitamin, you're on the right track. Here are a few additional tips that might help: Be Patient with Your Body: It’s hard to wait, but healing takes time. Track your progress in small ways—maybe energy levels on a scale of 1-10 each week—to notice gradual improvements. Check for Other Deficiencies: Sometimes celiacs have trouble absorbing other nutrients, like B12, magnesium, or zinc, which can also affect energy levels. Your doctor may want to test for these. Consider Other Conditions: Fatigue can be linked to other issues like thyroid problems, adrenal fatigue, or even sleep disturbances, which can sometimes occur alongside celiac disease. It might be worth discussing this with your healthcare provider. Stay Active, but Pace Yourself: Gentle exercise, like walking or yoga, can help improve energy levels, but don’t push yourself too hard—listen to your body. Hydration and Balanced Meals: Make sure you're drinking enough water and eating a balanced gluten-free diet with plenty of whole foods. Sometimes highly processed gluten-free products can leave you feeling sluggish. Remember, healing isn’t just physical—it’s also mental. You’ve made a huge, positive change by going gluten-free, and your body is working hard to repair itself. It’s okay to feel impatient, but know that you're moving in the right direction. Hang in there—you’ll get there!
×
×
  • Create New...