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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748

    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.