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Omg...i Might Be On To Something


Rachel--24

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confusedks Enthusiast

Carla,

YAY!!! It looks amazing!!! Congrats!

I am making my second batch of your fudge...mmmmm! I had my mom try it last night and she thought it was really weird...good!! MORE FOR ME!!! :P

Kassandra


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CarlaB Enthusiast

Thanks!

LOL, my FIL loved it!!! I want some .... I'll have to make a batch ... I've only made it twice in the past 7 weeks because it was difficult to make in the bathroom, LOL. Lucky you, she doesn't like it! All my kids like it ... but I tell them they can eat other junk food, save it for Chloe and me .... too expensive to share :P

AndreaB Contributor
<------ new kitchen. I was cooking Thanksgiving dinner. :)

Looks nice from what I can see. :)

I am making my second batch of your fudge...mmmmm! I had my mom try it last night and she thought it was really weird...good!! MORE FOR ME!!! :P

Yay on more for you! :P

aprilh Apprentice
Okay an update as I started my third day of pineapple: I've had a mild fatigue with this, and a flushed feeling which was worse the first day, and better the second.

What are you using the pineapple for? I read that it contains enzymes that can help "open" up the cells and allow bacteria's to be released so the immune system can take care of it. I started adding this to my juicing regimen and have had a stiff neck ever since. Now i can't remember where I read about this.

Thanks ! Just wondering if that's what you were using it for! :)

Rachel--24 Collaborator

I had some "bright" idea to eat Amy's Mac & Cheese Friday night. :rolleyes:

Yeah...I'm paying for that big time. It upset my stomach so much I almost had "D". :blink:

I dont know what I was thinking but dairy and white rice are low oxalate so I threw caution to the wind...not to mention "forgetting" about my problems with cheese and dairy in general. :ph34r:

It also contains annatto...which I always react to....but I ignored that as well. I guess I just freaking wanted mac and cheese. :rolleyes:

It caused alot of inflammation in my head again. :angry:

It was definately more than the brainfog I would normally get from dairy....so I looked up annatto to see if its high oxalate.

Annatto leaves contain calcium oxalate crystals

DANG!!

Stupid oxalates! :angry:

One day I'm gonna get this right so that I can truelly determine the extent of oxalate problems.....eventually it will happen! :D

Rachel--24 Collaborator

Mia,

Heres why I'm really concerned about oxalates causing me problems...via my severely leaky gut.

Oxalate is a highly reactive molecule that is abundant in many plant foods, but in human cells, when it is present in high amounts, it can lead to oxidative damage, depletion of glutathione, the igniting of the immune system's inflammatory cascade, and the formation of crystals which seem to be associated with pain and prolonged injury.

Ordinarily, not much oxalate is absorbed from the diet, but the level of absorption has to do with the condition of the gut. There is a lot of medical literature showing that when the gut is inflamed, when there is poor fat digestion (steatorrhea), when there is a leaky gut, or when there is prolonged diarrhea or constipation, excess oxalate from foods that are eaten can be absorbed from the GI tract and become a risk to other cells in the body.

I figure if this is a big problem for me I will take alot of stress off my immune system by avoiding these foods. My response to high oxalate foods leads me to believe its worsening leaky gut and yeast issues.

I definately dont want to be eating any foods that may be contributing to the depletion of glutathione!!

I think I will detox metals easier by avoiding these foods since oxalates also bind with metals in the tissue.

NoGluGirl Contributor

Dear Everyone,

Sorry I have not posted in so long! I only have two pages and I will be caught up! :) I had a lousy Thanksgiving. The lactose must have hurt me from the condensed milk in the gluten-free pumpkin pies I made. After eating two slices, my stomach promptly tried to throw them up! :(

Luckily, the promethazine stopped it before anything actually came up, although the heaves started. The past couple days, I have felt rough still trying to recover. I was afraid of trying the amoxy right now, since I am in such a frail state. Stupid lactose threshold! :angry: It was my typical glutening/lactosed reaction. My parents actually got worried this time.

I am almost ready to post my column. I also have a special silly poem. When you start giggling, you just have to write what you are thinking sometimes! If it makes everyone laugh, it is a bonus! Besides, no one else will understand why it is funny beside us!

Sincerely,

Jin


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Ridgewalker Contributor

Let me see if I've got this right...

So.... the only drawback (other than the gross-out factor) of Humaworm is that parasites hold onto mercury? So if you have a high mercury burden... when the parasites die, they release the mercury? So you have to take a binder to cling to the mercury? Then what, to get rid of the mercury? Also, is there any at-home way to tell if you have a high mercury burden?

mftnchn Explorer

A quick drive by, lots to get ready for my trip.

Sherry,

I think my mom would let me do the ecoffee, but it's a question of whether I want to do it!!! LOL! :lol: The only concern I would have is my mom said that she did them once and she said she got realllllly shaky afterwards. She said it was the caffeine, how could I prevent that? I don't have caffeine anymore...so I would be worried. The last time I had some diet coke, I felt like I was on speed! It was horrible!!!

Everyone,

So I woke up with a stiff neck. Do you think that is normal? We are worried it's the abx...could it be a herx or an adverse reaction? Should I call the Dr. or pharmacist to ask? Grr. It's really bad...the pain is intense. :(

Kassandra

Kassandra, I get that shaky feeling too sometimes, it is when I am most in need of detox. I drink extra water and sometimes lay down for a few minutes. It passes and then I feel much better.

I don't know the answer for sure on the caffeine, but I seem to remember that when the doctor gave me the instruction sheet for the e-coffee, it said that you don't absorb much of the caffeine like you do when you drink it.

If you do try it, maybe a small amount of coffee and more water, if ok, then increase.

I get the stiff neck, also shoulders, upper back and arms. I associate with lyme symptoms but it seems to be part of the herx always.

What are you using the pineapple for?

I am doing three days of pineapple only (except for some pumpkin seeds and licorice tea) to help get rid of parasites. The bromelain in pineapple kills tapeworm apparently, and some other beasties as well. I think it is working somewhat. I won't get my humaworm until my friend comes the end of Dec.

mftnchn Explorer

Good questions, Sarah. I defer to those more expert than I! (I'd like to know too)

confusedks Enthusiast

Well, my neck is only getting worse. Now I can't move it at all!! I took another bath, but I couldn't stay in long because it was really uncomfortable with my neck so stiff!!!!

Jin,

I am sorry about your reaction. Have you tried going casein free? I know that helps a lot of people...it's way different than JUST lactose free.

Carla,

I know...it is really expensive! I added it all up...ouch!!! And, I'm only halving the recipe! We buy the almond butter at Trader Joe's, so it's WAY cheaper than Whole Foods. It's literally $20 at WH, but only $6 at TJ's.

I went on LN tonight to look for something (can't remember) but I came across the ecoffee thread. I thought that was very interesting...I loved what you had to say about all of it. :rolleyes:

Everyone,

Well, I am off to hopefully get a good night's sleep. Tomorrow morning I have my appt. to have blood drawn for my Western Blot. Actually I have a question...will my being on abx affect the test at all? If anything wouldn't it help make the test positive?

Kassandra

mftnchn Explorer

This is not the Igenex test right? So the likelihood of a positive isn't all that great to begin with. I don't know how the abx will impact it.

AndreaB Contributor

Jin,

Sorry about your reaction. :( I agree with Kassandra......maybe it would be best to go casein free for awhile.

Kassandra,

I think it's been too soon for the abx to make much of an impact on the blood work.......especially if it's not Igenex. I believe Carla's daughter was given a month of abx and then reevaluated and retested to see what had changed.

CarlaB Enthusiast
Let me see if I've got this right...

So.... the only drawback (other than the gross-out factor) of Humaworm is that parasites hold onto mercury? So if you have a high mercury burden... when the parasites die, they release the mercury? So you have to take a binder to cling to the mercury? Then what, to get rid of the mercury? Also, is there any at-home way to tell if you have a high mercury burden?

Okay, I'm not an expert, but my take on it is if the parasites are holding onto metals and the parasites get killed, the only metals being released are those the parasites are holding onto, so only in the gut. So, if that premise is true, then taking chlorella to absorb what's released should be adequate. The chlorella will prevent them from being absorbed ... they will come out. The Humaworm has psillium, so you shouldn't need anything else. Maybe magnesium if you're plugged up. :)

I went on LN tonight to look for something (can't remember) but I came across the ecoffee thread. I thought that was very interesting...I loved what you had to say about all of it. :rolleyes:

Everyone,

Well, I am off to hopefully get a good night's sleep. Tomorrow morning I have my appt. to have blood drawn for my Western Blot. Actually I have a question...will my being on abx affect the test at all? If anything wouldn't it help make the test positive?

Kassandra

Thanks. I normally stay out of threads like that, but the ecoffee has been so good for me I didn't want all the negative comments to prevent people from trying it. :) it does seem that the only people who say there is no benefit are those who never tried it ....

The abx could affect the test in a positive way. But since it's not IGeneX, you will be very fortunate if it comes out positive.

I think it's been too soon for the abx to make much of an impact on the blood work.......especially if it's not Igenex. I believe Carla's daughter was given a month of abx and then reevaluated and retested to see what had changed.

It is early .... but hopefully it will help anyway. It's also an abx that stays in the digestive tract, so it might not be impacting the bacteria outside the GI tract very much .... though with what appears to be a herx, maybe it's stirring up the bacteria and waking the immune system. Let's hope!

Jin, sorry you're feeling bad. :(

dlp252 Apprentice

Aw Jin, sorry you had a crummy Thanksgiving.

Okay, started my Humaworm today, lol. Also started taking a bit of extra chlorella. I normally take nine 200mg tablets a day, so I'm going to try to take an extra 200mg pill when I take the humaworm pills. I'm waiting a few days before starting the charcoal because I want to know if anyone thing bothers me.

Andrea...there has been a tragedy. My cell phone broke!!! :o

So...I'm totally without until Tuesday. :(

:o Holy moly...what will you do? :P

E. Coli!! I found out today....yikes!!! I thought that was interesting.

:o Egads! No wonder you don't feel well. :P

<------ new kitchen. I was cooking Thanksgiving dinner. :)

Edit, LOL, how do I do an arrow pointing up?

Kitchen looks great!!!

^

|

|

One day I'm gonna get this right so that I can truelly determine the extent of oxalate problems.....eventually it will happen! :D

I don't know, sounds like you're getting it right a lot of the time to me...at least you're learning from your escapades.

Then what, to get rid of the mercury? Also, is there any at-home way to tell if you have a high mercury burden?

Then it gets excreted hopefully. I'm taking two kinds of binders...chlorella and something called pectasol which is a pectin. The pectasol binds with the stuff in the intestines, so hopefully anything that ends up there will get excreted. I don't know off hand of any at home way to tell about the mercury.

Well, I am off to hopefully get a good night's sleep. Tomorrow morning I have my appt. to have blood drawn for my Western Blot. Actually I have a question...will my being on abx affect the test at all? If anything wouldn't it help make the test positive?

I thought I read somewhere that, yes, the abx can help a test be positive, but I also think I've read that one should be off them for a period of time...couple of weeks or more before testing. I can't remember why though.

dlp252 Apprentice

Ha, my attempt at an up arrow didn't work very well. :lol:

^

|

Nyxie63 Apprentice

Andrea and Carla,

Thanks for the dentist links! Will be checking them out today. Yay and Ugh!

Rachel,

Thank you for being so frank about Cutler's protocol. I'm a ways off from chelation, due to the delay in getting the amalgams out. While the clinic I go to does chelation therapy, I've still wanted to see what other options were out there before having to face that particular hurdle.

Jin,

Sorry you're not feeling well.

Everyone,

This is a fascinating thread. Learning lots! Thank you all so much for sharing your personal experiences and information. Since I'm kind of on hold right now, don't really have a whole lot to contribute. Will probably ghost here for awhile until something gets moving on my end.

Thanks again! :)

melmak5 Contributor

I have been reading and am almost caught up, but here is my news...

-got to give back the heart monitor!!!

-got a referral for a new GI, going next Monday (fingers crossed he is not a moron)

-pc did a h-pilori (sp?) blood test, results this week

-pc REALLY pushed for me to take benefiber. I said "listen, I have done every and all things you doctors have wanted me to do EXCEPT take something derived from wheat. I deal with pain every day and I have finally stopped regurgitating, so are there any OTHER fiber sources that you recommend, cause I am putting my food down and saying "no" to this."

-I also pitched a small fit about the fact that for a two and a half week period NONE of my doctors would call me back, and that I thought rectal bleeding warrants a phone call, never mind the "i am too busy to read and explain your lab results" from the current GI

I told her, "listen, I am b%$@#ing and moaning because I feel better than I did two weeks ago, when I had nearly given up. I thought this was just what I was going to have to live with, but NO. I want to get better, it is time we moved towards that. I never want to see you again. I hate doctors. Lets work on me not having to see you anymore. Okay?!"

-everyone ate gluten free at my thanksgiving! it was with one of my roommates and friends, and they even complimented the stuffing and two vegans went nuts for my gluten-free, vegan pumpkin pie

-I did end up with a horrible stomach ache later on, but it was worth it

CarlaB Enthusiast
Ha, my attempt at an up arrow didn't work very well. :lol:

^

|

^^^^^^^

Maybe just that ^

Nyxie, you don't have to contribute a lot, we just like chatting! ;) Chatting is contributing!

CarlaB Enthusiast
I told her, "listen, I am b%$@#ing and moaning because I feel better than I did two weeks ago, when I had nearly given up. I thought this was just what I was going to have to live with, but NO. I want to get better, it is time we moved towards that. I never want to see you again. I hate doctors. Lets work on me not having to see you anymore. Okay?!"

:lol: :lol: :lol: :lol: :lol:

dlp252 Apprentice

Can the humaworm work in ONE DOSE, lol??? I just saw some kind of tissuey looking thing. I've seen this once or twice before, just not in a while. I've only taken TWO CAPSULES, lol. Seems impossible, so I'm leaning towards coincidence, but sure was weird, lol.

Yeah Carla...^ probably works much better. :P

This is a fascinating thread. Learning lots! Thank you all so much for sharing your personal experiences and information. Since I'm kind of on hold right now, don't really have a whole lot to contribute. Will probably ghost here for awhile until something gets moving on my end.

Join in whenever you feel like it. Many of us are only just beginning to find out all the pieces and to actually treat them, so don't feel like you need to wait to join in though.

I have been reading and am almost caught up, but here is my news...

Good for you for putting your foot down and good for you for telling them how inappropriate it was for them to NOT call about the bleeding, that amazes me! I'm glad you got rid of the monitor, lol!

Can you take any kind of pectin. I'm taking pectasol (rather expensive and hard to get though), but it's good fiber. They have different kinds of pectin. I see apple the most I think.

CarlaB Enthusiast

Judging by how ill I got the first day on it, and how bad Adam felt the first day, I'd say it could work right away. But to "see" something? I don't know .... maybe things move through you fast!

AndreaB Contributor
Ha, my attempt at an up arrow didn't work very well. :lol:

^

|

I thought you did good. :)

I don't know about he humaworm but like to hear everyone's experience with it. I still think that needs to be in our future sometime.

This is a fascinating thread. Learning lots! Thank you all so much for sharing your personal experiences and information. Since I'm kind of on hold right now, don't really have a whole lot to contribute. Will probably ghost here for awhile until something gets moving on my end.

I'm hoping to get my teeth done next fall but am not doing anything right now aside from some supplements for my family that was tested (ART muslce testing). We are totally out of money and are trying to hang onto the supplements we need to take.

Just did the mineral taste testing this weekend. We are short on a lot of them but don't have the funds to order. :(

-pc REALLY pushed for me to take benefiber. I said "listen, I have done every and all things you doctors have wanted me to do EXCEPT take something derived from wheat. I deal with pain every day and I have finally stopped regurgitating, so are there any OTHER fiber sources that you recommend, cause I am putting my food down and saying "no" to this."

Good for you for putting your foot down! :)

Also great news on the heart monitor and the gluten-free Thanksgiving meal........aside from the tummy ache that is.

dlp252 Apprentice
Judging by how ill I got the first day on it, and how bad Adam felt the first day, I'd say it could work right away. But to "see" something? I don't know .... maybe things move through you fast!

Well, I wouldn't be surprised if things move quickly, lol. I have D so much that it seems like nothing stays in long (and oddly can't figure out why I'm getting so fat if that's the case, lol). :P

Green12 Enthusiast

Good Morning Baltimore!!

Sorry, I have songs stuck in my head from watching Hairspray the last 2 days with my nieces :lol::lol:

I am so behind with posts..... welcome to everyone new. PLEASE jump right in any time!!

It sounds like everyone's Thanksgiving was a mixed bag, some were wonderful, some not so much. I am so sorry for those of you who had a rough time and struggled :( . I am hoping things turn around very soon for all of you.

Hearing everyone talk about the Humaworm is exciting, I am so anxious to start it, but I CAN'T until I get some more tests done, it's killing me having it here, I just stare at it longingly :lol:

Donna, I can completely relate. I am gaining weight, it's so frustrating. I hardly eat anything :( .

Carla, I need to go back and look at your kitchen pictures....Congrats on feeling so GOOD! You have really come such a long way and have made so much progress. What a difference a year makes!

Kassandra, I had a thought. A former poster named penguin (Chelsea) I remember had iron issues. I don't know if you could contact her and ask how she addressed that?

Sorry about your neck. I get that a lot, and always have, it just stiffens up and freezes almost and I can't rotate my head to the side.

Andrea, Capra Mineral Whey is really good stuff, I wonder if it would be more economical and stretch further with the family.

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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