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

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

oooops!

Green12 Enthusiast

Triple post :blink:

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
      128,866
    • Most Online (within 30 mins)
      7,748

    Hb33
    Newest Member
    Hb33
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well. From Coeliac UK "The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary." So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it. As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.
    • knitty kitty
      Hello,   The medication in these inhalers can cause a thiamine deficiency if used by someone already low in thiamine.  We don't absorb sufficient amounts of vitamins and minerals due to the inflammation and damage done to our villi in Celiac Disease.  Even a long term strict gluten free diet may not provide sufficient amounts of vitamins and minerals.  There are eight B vitamins that all work together.  Thiamine deficiency often shows up first because our bodies use so much of it and it can't be stored very long. Thiamine deficiency symptoms can appear in as little as three days.  Without thiamine, the other B vitamins may not be able to function properly.   Thiamine is needed to clear lactic acid accumulation caused by the inhalers: Shoshin beriberi provoked by the inhalation of salbutamol https://pubmed.ncbi.nlm.nih.gov/12951730/    Significant Lactic Acidosis from Albuterol https://pmc.ncbi.nlm.nih.gov/articles/PMC5965110/ Albuterol-Induced Type B Lactic Acidosis: Not an Uncommon Finding https://pmc.ncbi.nlm.nih.gov/articles/PMC7263006/ Lessons of the month 1: Salbutamol induced lactic acidosis: clinically recognised but often forgotten https://pmc.ncbi.nlm.nih.gov/articles/PMC6964186/ An Overview of Type B Lactic Acidosis Due to Thiamine (B1) Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC10731935/   Thiamine has antifungal and antibacterial properties.  Thiamine helps keep Candida in check.  Thiamine helps keep SIBO in check.  Thiamine helps with black mold, Aspergillis infection.  Riboflavin helps fight Candida infection in the mouth. Riboflavin Targets the Cellular Metabolic and Ribosomal Pathways of Candida albicans In Vitro and Exhibits Efficacy against Oropharyngeal Candidiasis https://pubmed.ncbi.nlm.nih.gov/36625571/   Thiamine deficiency can make ones voice hoarse and can cause localized edema.  Niacin deficiency can make ones voice hoarse.  (Niacin deficiency and Thiamine deficiency can each cause irritability, agitation, and lability.) Hoarseness in pellagra https://pubmed.ncbi.nlm.nih.gov/21507655/ Hidden Hunger: A Pellagra Case Report https://pmc.ncbi.nlm.nih.gov/articles/PMC8152714/   Anesthesia can cause B12 deficiency.  B12 deficiency can show up as mouth sores and geographic tongue, diarrhea, and dementia. Vitamin deficiency, a neglected risk factor for post-anesthesia complications: a systematic review https://pmc.ncbi.nlm.nih.gov/articles/PMC11823251/ Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency https://pubmed.ncbi.nlm.nih.gov/8250714/ Subacute combined degeneration of the spinal cord following nitrous oxide anesthesia: A systematic review of cases https://pubmed.ncbi.nlm.nih.gov/30144777/ The Effect of Vitamin B12 Infusion on Prevention of Nitrous Oxide-induced Homocysteine Increase: A Double-blind Randomized Controlled Trial https://pmc.ncbi.nlm.nih.gov/articles/PMC4052402/     Eating a diet that is heavy in carbohydrates can precipitate a thiamine deficiency.  As the amount of carbohydrates consumed increases, additional thiamine is needed, otherwise the carbs will be stored as fat.   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/   The deficiency symptoms of some of the B vitamins cause gastrointestinal symptoms that resemble the same symptoms as when being glutened.   Thiamine deficiency can present as vomiting, diarrhea and abdominal pain (Gastrointestinal Beriberi).  Niacin deficiency can present as diarrhea (Pellagra = diarrhea, dermatitis, dementia, then death ).  B12 deficiency can present as diarrhea or dementia.  Not everything is caused by hidden gluten.  Gluten free processed foods are not required to be enriched with vitamins lost in processing like gluten containing foods are. Blood tests are not accurate measurements of vitamin levels, but do talk to your doctor and nutritionist about supplementing with the eight B vitamins, Vitamin C, the four fat soluble vitamins and minerals like magnesium.  Your physician can give you a shot of B12 before anesthesia administration.   By the way, Celiac Disease genes have been traced back to having originated in Neanderthals.  I'm not a singing teacher on the net.  I earned a degree in Microbiology after studying nutrition because I wanted to know what vitamins are doing inside the body.  I've experienced nutritional deficiencies myself. Hope this helps!  Keep us posted on your progress!
    • trents
      Welcome to the forum, @jnstefan! She should start feeling better within a week or two if she is truly avoiding gluten and if she isn't also showing intolerance to other foods. It is quite common for celiacs to be dairy intolerant (not just the lactose but the protein casein in dairy) and to oats (protein is avenin). Casein and avenin have structures similar to gluten. We call this cross reactivity (not to be confused with cross contamination). So, you might look at pulling these two food items from her diet to see if there is improvement. But achieving a gluten free state is more challenging than people realize when the first start in. It is hidden in so many foods you would never expect to find it in like soy sauce and canned tomato soup, just to site two examples. This might help:  
    • jnstefan
      My 10 year old daughter was diagnosed with Celiac 2 weeks ago. We've been on gluten free diet now for 2 weeks. She still experiences abdominal pain at times , and is struggling with fatigue. What is everyone's experience with how long it takes for the body to heal and stabilize after starting the gluten free diet? Thanks for any feedback!
    • thejayland10
      thank you for the insight  Thank a small elevation can be due to this or is it more likely to be cross contamination ? 
×
×
  • Create New...