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

Green12 Enthusiast
Dr's got me on caprylic acid, more probiotics, a candida diet, and chia seeds.

Yup. Ch-ch-ch-chia like on the ads.

Just what I need... relaxed intestines.

:lol:

Thanks for the update Nyxie.

What do the chia seeds do exactly?? Dr Oz was talking about them on Oprah, they were included in his "superfoods", but I missed what he said about them.

Rinne sends a Rachelvillian hi and that she's thinking of everyone.

Hi to rinne!!! I wish she would come back and post, I miss her contributions, her info, insight, and scientificness :)

I heard from Dr. H tonight. He's starting me back on 1 Malarone per day because of the air hunger. I've also had night sweats .... started out as just thinking I was hot, but last night it was drenching. No other symptoms though, I generally feel normal, or what is "normal" to me, LOL.

I hope the Malarone helps Carla :)

OMGosh Donna, I had my first Bumble Bar :lol::lol: It only took me like a year and a half to try one!


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
confusedks Enthusiast
:D :D :D Carla! I booked my flight!!!!! :D :D :D I'm so excited! :wub::):P
confusedks Enthusiast

Nyxie,

How are you feeling? Are you having major die off symptoms from the Candida?

AndreaB Contributor
OMGosh Donna, I had my first Bumble Bar :lol::lol: It only took me like a year and a half to try one!

Aren't those good! We like the almond ones. :)

We don't have the chocolate ones since they have peanuts in them. :(

miamia Rookie
Well, it's been a GI tract kinda week. Got back the results of the stool testing on Monday.

I've got "many yeast". No kidding, that's what the report says and is exactly how the dr told me. Also have a rather large amount of Pseudomonas aeruginosa. Other than that, everything was fine. Dr's got me on caprylic acid, more probiotics, a candida diet, and chia seeds.

Yup. Ch-ch-ch-chia like on the ads. I think this is going to be my new vice. I've been "Racheling" them since yesterday. :P Oddly enough, when I was running errands today, I was craving the darned chia seeds instead of ciggies. Now THAT's something!

Saw the GI today too. Gave him a piece of my mind and it felt really good. He wants me to get a Hida scan done (finally) and wants to see me again once that's done. Also scheduled another abdominal u/s in a couple of months. He wrote an rx for something that's supposed to help with the pain, but don't think I'm going to take it. He said its a smooth muscle relaxant. Just what I need... relaxed intestines.

Nyxie-

I bought chia seeds a while ago and have not tried them yet-they are so good for you. I really want to try them . How do you eat them?: do you just chew on them?

CarlaB Enthusiast
:D :D :D Carla! I booked my flight!!!!! :D :D :D I'm so excited! :wub::):P

:D :D :D YAY!!!! :D :D :D Hey, everyone, Kassandra's coming to visit! :wub:

I can't wait to pick up my Malarone today! He will have me do a loading dose of 4 per day for three days, then I'll drop down to one. I hope my expectations aren't too high, but I'm thinking I'll feel better and I have these delusions I won't have a babs herx, LOL.

It's just I feel SO good right now, it's hard to believe I still have babs .... but these are my two symptoms I had five years ago right before I declined.

The Cowden protocol gets everything except babs ..... so it must be working for the Lyme. I really feel that Lyme is a "non-issue" right now.

Nyxie63 Apprentice
What do the chia seeds do exactly?? Dr Oz was talking about them on Oprah, they were included in his "superfoods", but I missed what he said about them.

I didn't see that show either. Hadn't heard about consuming them until my doc brought it up.

Dr Oz/Oprah article is here: Open Original Shared Link

Nutritional info on chia is here: Open Original Shared Link

Sorry about the links... stil haven't figured out how to do one of those tiny url things.

I bought chia seeds a while ago and have not tried them yet-they are so good for you. I really want to try them . How do you eat them?: do you just chew on them?

I drink them. I soak them in water to make a gel... and they take a lot of water. 1/3cup of seeds to 2 cups of water. This makes a kind of concentrate that'll keep in the fridge for awhile. When I want a cup, I take 2-3 heaping spoonfuls of the concentrate and add water. Stir, let sit for a little bit, stir, and drink.

And I've finally realized what the appeal is for me. Its like liquid bubblewrap. Fun to play with! Kinda hard to describe tho. You'll just have to try it for yourself. ;)

There are recipes online, but I haven't really looked much into them yet.

How are you feeling? Are you having major die off symptoms from the Candida?

I'm actually feeling pretty good. Very minorly headachy, but not bad at all. The only thing that might be a die-off symptom is that the amount and strength of myclonic jerks before I go to sleep has really increased. Then again, maybe that could be neurolyme. I just dunno anymore.


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

Carla, Have you tried Noni (Nutramedix)??

Thats the one I was taking for babs....its the herb that Dr. K finds to be most effective for babesia. I'm pretty sure theres some threads about it on LN.

CarlaB Enthusiast

Thanks, Rachel, I have that in my cupboard from before I started treatment with Dr. H. I'll take some this morning. I've also been taking Artemesia and Lariam (not an herb). :(

Dr. H said the new Nutramedix herb for babs is supposed to be released this month. He was on vacation last week and said he was going to call and see if it had been released. I told him I didn't think it had, I'd been reading on the internet, and he said that I wouldn't find it on the internet because he was going to be the first to use it. :) So, I'll be adding that soon.

Do you think if I took the noni now it would get rid of the air hunger before the funeral I'm playing my flute for at 11AM? LOL Yesterday's funeral was tough ... it's hard to play when you can't get a full breath. Three funerals this week .... the one Saturday is for a friend of mine's dad, so I'm a little nervous for that one.

Adam said yesterday that I really am in touch with my mortality playing at funerals all the time ... I said, "Yeah, so do the kids, they're sledding at the cemetery!" :lol:

dlp252 Apprentice

I've never heard of chia seeds before today, lol! :lol: I will have to check them out though...I need a fiber source other than my modified citrus pectin which is HUGELY expensive, lol.

Rinne sends a Rachelvillian hi and that she's thinking of everyone.

Please tell Rinne hello for me--I hope she's doing well :D

Thanks for the update and ditto what Patti said! :P

I heard from Dr. H tonight. He's starting me back on 1 Malarone per day because of the air hunger. I've also had night sweats .... started out as just thinking I was hot, but last night it was drenching. No other symptoms though, I generally feel normal, or what is "normal" to me, LOL.

I've been having night sweats too, and like you I thought I was just hot. I don't know...maybe it's just menopause for me, lol.

OMGosh Donna, I had my first Bumble Bar :lol::lol: It only took me like a year and a half to try one!

:lol: See, aren't they good?! Which flavor did you try...I didn't find a bad flavor, but chocolate was always my favorite.

:D :D :D YAY!!!! :D :D :D Hey, everyone, Kassandra's coming to visit! :wub:

Now THAT ought to be fun!!! :)

CarlaB Enthusiast
Now THAT ought to be fun!!! :)

Yep! We are even going to go to the grocery together! :lol: :lol: :lol: Check out this store www.junglejims.com

For a few days, I'll have two 17 year olds in my house sleeping all day! :P Chloe said, "YAY, another Lymie in our house!" :lol: I think she likes knowing there are other "kids" (though Kassandra just seems to mature to fall into that general category, as do the other 17 year olds on this thread, LOL), out there who are battling the same thing.

Don't worry, Kassandra, I told the kids you are where I was a few months ago. ;)

I need to know what you can/can't eat! LOL No dairy, no gluten, anything else I should know?

AndreaB Contributor

Kassandra and Carla,

Have fun! That's exciting. :)

dlp252 Apprentice

Holy cow, is that where you shop all the time Carla?! :lol: Um, I don't think we have anything quite like that around here. :P

CarlaB Enthusiast

No, but if it were closer I probably would! It's almost 30 minutes away. I don't actually think there's anything quite like it anywhere, LOL. It's like an amusement park grocery! They really have everything, even Starbucks, LOL.

I just took my first Malarone ... four times per day for three days. I wonder if it will cause a herx since I've been off it for a few weeks. I certainly hope it doesn't cause my air hunger to flare worse!

confusedks Enthusiast
Adam said yesterday that I really am in touch with my mortality playing at funerals all the time ... I said, "Yeah, so do the kids, they're sledding at the cemetery!" :lol:

LOL! :lol: :lol:

Yep! We are even going to go to the grocery together! :lol: :lol: :lol: Check out this store www.junglejims.com

For a few days, I'll have two 17 year olds in my house sleeping all day! :P Chloe said, "YAY, another Lymie in our house!" :lol: I think she likes knowing there are other "kids" (though Kassandra just seems to mature to fall into that general category, as do the other 17 year olds on this thread, LOL), out there who are battling the same thing.

Don't worry, Kassandra, I told the kids you are where I was a few months ago. ;)

I need to know what you can/can't eat! LOL No dairy, no gluten, anything else I should know?

I'm so excited to meet all of the kids! :D No dairy, gluten and soy. Those are the main ones. I am going to try and bring my new protein powder so we can have smoothies together! :lol::D:P

Let's see I can give you a day of what my food looks like (assuming I'm NOT nauseous, because then ALL bets are off, lol)

Breakfast: Smoothie/Fudge or these Almond Butter Brown Rice Cereal Balls

Snack: Gluten free bagel (although they are fattening so I try to eat it with Mepron) with lunch meats

Lunch: Salad, some form of Protein

Dinner: Fish, Chicken, Turkey... you know...if things are prepared "naturally" I am good to go. Like, I could have had what you guys had last night, but with no cheese. We use olive oil instead of butter obviously.

CarlaB Enthusiast

Well, the soy will be the one I really have to think about ... I was gluten, dairy, and soy free for six months, LOL, but never got the hang of just "knowing" what had soy.

I generally cook everything from scratch, so it's pretty easy ..... I'll have to get some gluten-free stuff again, LOL. Since I'm on Malarone, I need to make some fudge again, I haven't made it since I stopped taking it.

mftnchn Explorer

Quick drive by....have to catch up later.

FINALLY some good news. Enterolab fecal fat malabsorption retest (just under 10 months post gluten-free) are normal at <300. I was 1322 last April.

Also Dr. G said he prefers me to be on Zithromax and asked that I switch. So tomorrow I'll start, just picked up my script.

My doctors (allergist and LLMD) both agree that Vit D levels need to be pursued, and I had a blood draw today.

My IVs: I am getting EDTA to chelate the lead, plus something else to help the chelation be more effective. They also did HOT which is where they give you a tiny bit of heparin, and withdraw a large syringe of blood then reinject it. The blood goes through a little machine that is a special light treatment. It activates the blood cells toward viruses and lyme and the activated cells cause other cells to be activated. They did 4 times back and forth into my system today.

Okay all for now, off to shop with my daughter who just got engaged last week. :)

Sherry

dlp252 Apprentice

Sherry, congratulations on your good news, and congratulations for your daughter!! :)

Green12 Enthusiast
:D :D :D YAY!!!! :D :D :D Hey, everyone, Kassandra's coming to visit! :wub:

How fun!!! You guys will have to take lots of pics. Kass, are you taking your laptop?? Then you guys can sit in the same room and post on the forum, like Carla and Morgan used to do :lol::lol:

I didn't see that show either. Hadn't heard about consuming them until my doc brought it up.

Dr Oz/Oprah article is here: Open Original Shared Link

Nutritional info on chia is here: Open Original Shared Link

Sorry about the links... stil haven't figured out how to do one of those tiny url things.

Thanks for the info on the chia seeds Nyxie, your links worked great :)

Sounds like they are not only high in fiber, but mineral and fatty acid rich.

:lol: See, aren't they good?! Which flavor did you try...I didn't find a bad flavor, but chocolate was always my favorite.

I tried the chocolate one, pretty tasty.

I must admit thought I expected them to be more candy bar like (like a chocolate coated luna bar perhaps?), they are actualy quite healthy tasting, nutty and seedy, which I like.

Quick drive by....have to catch up later.

FINALLY some good news. Enterolab fecal fat malabsorption retest (just under 10 months post gluten-free) are normal at <300. I was 1322 last April.

Sherry, thanks for the update.

That's good news about the fat malabsorption retest results.

Congrats on your daughter's engagement!

Green12 Enthusiast

Triple post :blink:

Green12 Enthusiast

oooops!

aprilh Apprentice
They also did HOT which is where they give you a tiny bit of heparin, and withdraw a large syringe of blood then reinject it. The blood goes through a little machine that is a special light treatment. It activates the blood cells toward viruses and lyme and the activated cells cause other cells to be activated. They did 4 times back and forth into my system today.

Sherry

My llmd has this. He called it something else. It sounded sort of scary to me! How was it?

aprilh Apprentice

Update on my LLMD appointment today to review my Igenex test. He doesn't think I am positive for lyme. Well, I am sort of confused. I am sort of positive because I had 1 band but sort of not positive because your supposed to have 2 bands at least. So, not sure...

I thought maybe if I was positive it would give me a clue on where to go with my daughters leg/bone pain.

AndreaB Contributor

Good news Sherry! :D

April,

Sorry. I don't know what to think either. :(

Nyxie63 Apprentice

Carla and Kass, What fun!!!!

Sherry, Congrats on your daughter's engagement.

AAAAUUUGGGGHHH! The craving monster has awakened! And it wants donuts!

Seriously, my body wants something sugary and doughy and it wants it NOW!

Why is it that I have no problem not going out to buy cigs but practically have to handcuff myself to the sofa so I don't go out and buy a half dozen french crullers?

HELP!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Have I got coeliac disease

    2. - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Blood Test for Celiac wheat type matters?

    3. - Mark Conway posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Have I got coeliac disease

    4. - islaPorty replied to Jillian83's topic in Coping with Celiac Disease
      8

      Celiac and dermatitis herpetiformis has taken Me from Me

    5. - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

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

    • Total Members
      133,147
    • Most Online (within 30 mins)
      7,748

    slsaz
    Newest Member
    slsaz
    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 forum, @Mark Conway! Can you be more specific about the "coeliac" test your doctor did? There are more than one of them. What was the name of the test? Also, did he order a "total IGA" test? This is a test to check for IGA deficiency and should always be ordered along with the tests specifically designed to detect celiac disease. If you are IGA deficient, the IGA celiac blood antibody tests used to check for celiac disease per se will not be accurate. Also, if you have been cutting back on gluten before the tests, that will render them invalid. You must have be eating normal amounts of gluten for weeks/months before the blood draw to render valid test results.
    • Wheatwacked
      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities.  Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement.  130 times the safe upper limit.  130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms per drop.  It takes 20 drops to reach the safe upper limit. In the US the Safe upper limit is 1100 mcg.  In Europe 600 mcg and in Japan 3000 mcg ( 3 mg).
    • Mark Conway
      Hi there, I wonder if anyone can help. I've had stomach problems for years, pain in the tummy, lower back left and right side, different stools, diarrohea constipation etc, My GP says it's IBS. As I've got older the pain has become worse and constant. I also get ulcers on my tongue. I've had loads of tests done everytihng apart from an endoscopy I think. I had a test for Coeliac last July and the result was negative. My GP says it can't be coeliac because I'm not losing weight. He thinks it's stress or all in my head. I'm not stressed and I'm in pain all the time now. Sometimes it's unbearable and dark thoughts have entered my head. Could I have Coeliac even though I tested negative last year. I'm at my wits end, I eat healthily and cannot pinpoint which foods could cause this pain. Can anyone help? Thanks Mark wind
    • islaPorty
      First, I want to say thank you for sharing this with me. I hear you, and I believe you. The courage it took to write this down is immense, and I’m so sorry you’ve been carrying this alone. You are dealing with two life-altering challenges at once: a serious, complex medical condition, and an abusive, controlling partner who is actively harming your health and your spirit. It’s not just that he’s unsupportive—he is weaponizing your illness to torture you. Starving you, isolating you, mocking your diagnosis, and sabotaging your access to medical care is not just cruelty; it is dangerous, deliberate abuse. Your instinct is correct: the stress he is creating is absolutely preventing your body from healing. Celiac and autoimmune conditions are profoundly sensitive to stress, and he has created a living hell designed to keep you sick, dependent, and broken. That smirk you described—that is the look of someone who enjoys having power over your suffering. Please know this: you do not deserve this. Not any of it. You deserve to eat. You deserve safe, clean food and water. You deserve medical care and supplements that help you function. You deserve peace. You deserve to heal. The woman from the food pantry is not a random accident. She is a lifeline. Her help, and the community she’s connecting you to, is real. It is okay to feel overwhelmed by kindness when you’ve been starved of it for so long. But you do deserve it. Let that be a sign that there is a world outside your house that operates on compassion, not control. Right now, your physical safety and access to nutrition are the most urgent priorities. The food pantry is a critical resource. Is there any way you can speak privately with the woman helping you? You don’t have to share everything at once, but letting her know your situation at home is extremely unsafe, and that your partner restricts your food, could help her support you in a more targeted way. She may have connections to local domestic violence services.
    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
×
×
  • 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.