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Omg...i Might Be On To Something

Rachel--24

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rinne Apprentice
rinne
Posted
......

I think a couple of people here have at least looked into them...I think maybe Rinne and Charlie, and maybe Mia, but I can't remember if anyone actually bought one.

What a good memory you have, yes I did look into them but then decided not to pursue it. I did buy some detox patches for the soles of the feet and can tell you they seemed to have an effect, they definitely changed color, but I also had an aching feeling in my calves.

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dlp252 Apprentice
dlp252
Posted

Well, I just got home from my BioSET appointment. We STILL didn't do miasms, lol. For some reason Anna was all concerned with my adrenals. I'm pretty sure she was looking at my old labs from a year ago, but I guess because last week my energy was really low, she decided to revisit the adrenals. And, she did some testing today which showed that they are still stressed. Mold was also showing as causing stress to my body, so she retested me on molds and quite a few came up--mostly outdoor molds. Pacifica came up, lol. I guess I won't be moving to Pacifica. :P I mentioned the sinus infection and how on my testing last week, sinus issues came up all over the place, but they were fine today. Anyway, she has sent me home with some support for adrenals. Just when I was trying to get AWAY from taking so much stuff. I also bought some NutriMedix Parsley to take. Scott had mentioned that way back in June as something I might try for detox.

Anna did say something that I thought was right on. I can't even really remember the context now, I think it was in relation to the adrenals, sleep, neutrotransmitters, etc. What she said is that since my body is fighting the lyme, I'll probably always have to watch my levels. Basically, until the lyme is taken care of (which showed up as the main stressor to my body in my ART testing), I'll probably always be off balance. :lol:

Any of my friends could have told her I'm off balance. :lol:

Also, every aged cheese has enough mold to be a BIG no-no for candida.

Oh yeah! :lol:

What a good memory you have, yes I did look into them but then decided not to pursue it. I did buy some detox patches for the soles of the feet and can tell you they seemed to have an effect, they definitely changed color, but I also had an aching feeling in my calves.

My good memory is selection apparently, because some days I can't remember my name. :P

confusedks Enthusiast
confusedks
Posted

Nyxie,

I know bacteria loves iron. It will be interesting to see if my SBBO has anything to do with my anemia. The GI doesn't think it does, neither does the Hematologist...but we'll see. ;)

Sherry,

Ouch...that sounds painful. When I was in Thailand once I had a "foot scrape" OMG I started crying it was so painful! They soak your feet and then scrape off the old yucky skin! OUCH! I had to stop them half way through!

Sarah,

Would your mom be interested in Enterolab? I showed up higher for Casein than I did gluten! It may help sway her...if she did the yeast, soy and casein? Just a thought. Because I know some people do want to see a positive test.

Everyone,

I am doing everything in my power to not get sick! My brother told my mom and I last night that he has been throwing up everything he eats, but then I noticed out bathroom is too clean if he has been throwing up! I think he is lying! :o I think he is doing this because my mom told him she is going to send him to NZ to live with my dad...and they don't have the best relationship, so I think he is freaking out! LOL!! I am so mean, no sympathy!

Kassandra

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Thank you everyone, for such quick responses!

My mom and I are extremely close. I think she takes my advice as seriously as I take hers. She is up for trying supplements, but is very reluctant to completely cut out dairy and soy. She loves milk and cheese, and her soy protein shakes.

If there is a food that we feel we cannot live without...most likely we are intolerant to that food. I doubt it would show up in an allergy scratch test in most cases. For me it didnt show up in any traditional tests...only muscle testing and electrodermal screening. In those tests my body is reactive to all products from cow dairy....but not goat.

My Dr.'s all want me off dairy and have said most (if not all) of us who are chronically ill have an immune response to dairy. I also have problems with soy...which are more noticeable to me because it causes migraines.

Dairy causes me to have more brainfog and to become more sensitive to everything around me. I was very antisocial during the 8 months I was eating ice cream everyday. I stopped going to movies and wasnt talking much at work. I was only socializing in this thread. That has changed dramatically since I went off dairy....but at the time I wasnt really noticing anything specific. I thought I was doing fine with the ice cream.

It does feed candida and other infections as well.

I was very addicted to milk all my life. I would actually get very anxious inside if milk wasnt available during dinner....and I could never eat any type of desert, cookies, etc..without milk. I would tell people if I could only have *one* drink for the rest of my life...it would have to be milk. I just felt like I couldnt survive w/out it.

Now that I've mostly been off of it for about 3 years...when I do try it I immediately feel addicted again.

The statin stuff your mom takes is probably "swish and swallow" Nystatin.

I am herxing possibly today after the DMPS this week, and worry that the tapeworm all broken up isn't good for mercury release. However, I have also had a very short night of sleep last night.

Sherry,

Did you ever notice a worsening of food intolerance, yeast or digestive symptoms after your dose of DMPS?? I've read lots of info about the orals wreaking havoc on the autistic kids who have leaky gut/yeast issues. My Dr. also told me that he doesnt like to use them because most of his patients get worse GI problems from them.

If you notice any kind of worsening of gut stuff...it might be worth it to look into that.

mftnchn (sorry, I don't know your real name),

mftnchn = Sherry :)

Rachel, how did your chelation go (that was yesterday right?)

It went well Julie....thanks for asking. :)

The only problem was that the needle was hurting...I hate when that happens!! I try to be strong but needles just freak me out...especially when I can feel them!

So it hurt from the start and then as she pushed the DMPS in it was burning as it went in...because of the needle moving or something. They push it in real slow...so its not like its over in a second.

Since it was an increase from 1cc to 2cc...she went even slower to make sure I wasnt reacting. Even though its still a small dose she said they just want to make sure that I'm not feeling anything weird from it. So after 1cc...she stopped for 5 minutes...and the needle was freakin hurting like heck!!

Finally she pushed in half of what was left and then I wait another few minutes for her to come back and push the rest in. I told her it was burning going in...but not anywhere except for where the needle was. After DMPS they push in the homeopathic to calm any immune responses. For that she held the needle in place with her finger and it didnt hurt so bad. :)

I felt a tiny bit nauseus when I was done...but I'm pretty sure it was because I'd been so stressed about the needle. :ph34r:

I actually felt really good about 30 minutes after my treatment...and for the rest of the night.

I went to the movies....was cracking up half the time and was dancing in my seat to the soundtrack. :lol:

I used to not be able to enjoy myself so much but I feel like I have alot more energy and less brainfog in recent months. :)

Life is definately more enjoyable!!

The only side-effect I noticed was some blurred vision. I always get blurred vision from any kind of chemical exposure or toxins...non-organic foods, molds, etc. I think its because even though the DMPS is compounded its still synthetic....its still a man-made drug. My eyes were better after a few hours though.

My next will be 3cc's on the 14th....then on the 15th I see Dr. Amy. :)

I might repeat the Dr.'s data after the next one....just to see for myself how things are looking.

melmak, if you are having a lot of gas after starting up the probiotic I think that's a pretty strong indication that there is gut dysbiosis. ed to hear how you feel after it, if you notice anything in a couple days.

I cant ever seem to tolerate any probiotics of any kind. I get major reactions to yourt even...its not like what happens with dairy in general...its different. I get bad bloating, digestive distress and increased swelling in my head. I havent taken any probiotics in a long time.

I've come across this info. several times in my reasearch. I'm not sure if this is my problem but I'm just not taking chances because of the increase in symptoms I get.

When people have mercury amalgams or just has elevated mercury in their body, the friendly bacteria (probiotics) will convert the mercury into methyl mercury, which is at least 100 times more toxic than ordinary mercury.

Research shows that oral bacteria, yeast and probiotics all methylate mercury, so you should minimize any contact between the bacteria and your mercury. The methylation of mercury could explain some of the adverse reactions reported by parents and patients who have begun detox with massive doses of probiotics to correct dysbiosis.

Alot of the mercury load is in my gut...so it makes sense to me that dumping a bunch of bacteria in might worsen my problems.

CarlaB Enthusiast
CarlaB
Posted

Rachel, I'm glad you're feeling so much better. :)

I have noticed that if I get hungry when I don't eat enough (like today when I was busy), I feel "Lymie" ... so, maybe that's why getting rid of the tapeworm had such a huge effect.

I am sure I have passed pieces of tapeworm, but just an inch long. What I saw was so distinctive I wondered so went to google and typed in tapeworm picture...one quick look was all I needed to confirm, and all I could take!!

Some tapeworms break up differently than others ... I suspect mine was a beef tapeworm since it came out in bigger pieces.

I also bought some NutriMedix Parsley to take. Scott had mentioned that way back in June as something I might try for detox.

Get some burbur, too, and take it right with the parsley. When I take those two, they will take away all the symptoms! One day I was shopping for Thanksgiving dinner and had to go to two stores, so I was gone for a while. I started feeling bad. Once I got home I took parsley and burbur, then ten minutes later took them again, then felt fine the rest of the day.

I know bacteria loves iron.

So does babesia.

Everyone,

I am doing everything in my power to not get sick! My brother told my mom and I last night that he has been throwing up everything he eats, but then I noticed out bathroom is too clean if he has been throwing up! I think he is lying! :o I think he is doing this because my mom told him she is going to send him to NZ to live with my dad...and they don't have the best relationship, so I think he is freaking out! LOL!! I am so mean, no sympathy!

Kassandra

Maybe he's jealous of the attention you are getting. :blink: Or maybe he's jealous that your mom is ignoring you and he wants to be ignored, too. :lol: Good for her! If he can't tow the line, send him to Dad!
confusedks Enthusiast
confusedks
Posted

Carla,

I never thought of that! Maybe he is jealous of the lack of attention I am getting!!! :D:lol: Although I think it was all a lie because he has been eating macaroni and cheese for days (no wonder he's sick!!!) and this morning he told my mom he feels fine! He is such a liar!!!! LOL!!!

I really do think I have babesia...I think all the symptoms make sense. Is that the co infection where your liver gets confused? I think that's it...

Rachel,

I TOTALLY get painful needles! That is why I demanded a PICC line. When I had my iron IV's last time...all I can say is OUCH!!! B)

Glad to hear you're feeling better too!

Everyone,

Does anyone have any ideas on how to get rid of dandruff? I have tried the shampoo's, NOTHING works! It is so itchy! I don't really actually think it is dandruff because I don't have flakes...more like little dots that end up bleeding! :unsure:

Things have calmed down with my mom. I don't know if I have ever mentioned it here, but she was not formally diagnosed, but her Dr. is treating her for bi-polar disorder...so they jsut changed a medication and she is CRAZY sometimes.

I explained to her that I know she wants to do what's best for me but even if I feel better with the iron IV's, I still have the extremely irregular periods which will end up making me anemic again in a few months anyway. I thankfully haven't had my period in a few months because my hematologist said if I did, I would have to go to the ER to get treated because my numbers are so low. So I told her we are lucky that we didn't have to have iron IV's 4 months ago. She kinda started to get it. She also said that she is reallllly worried I DO have Lyme. She said she doesn't want to see me suffer. I told her I would rather suffer through the treatment of something that is going to get to the bottom of all of this stuff, than symptoms.

Also, you know how there were roof leaks a while ago...I heard a loud drip drip drip and then I noticed my chair is getting leaked on in a new place! We are taking pictures and we're going to try to get a new chair from the landlord.

Kassandra

Nyxie63 Apprentice
Nyxie63
Posted

*buzzing through*

Kassandra,

If you skin can tolerate it, try some tea tree oil.

Will catch up with everyone in a bit.

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CarlaB Enthusiast
CarlaB
Posted

Kassandra, if the scalp rash is from Lyme, there's not going to be much you can do. I get a bumpy red rash ... itchy ... sometimes the spots look like blisters ... is gone away with treatment until treating the bartonella stirred it up again.

You can try with your landlord, but he's not responsible for your chair .... sorry. If you have renter's insurance, you can probably collect from them.

He is legally bound to fix the roof though.

AndreaB Contributor
AndreaB
Posted
rinne, congrats on the latest with your rinne bar business, that's exciting news! I wasn't around when you were talking about these so I have no idea what they are but I am already interested, I'll buy a case :lol:

And with this note Rinne. I told the owner of the gluten free store about your frozen gluten/dairy/soy free except for lecithin treats and that I would let him know when they make it to the states. He's a small store so needs a distributor. He's just able now to get the Coconut Bliss that we love. He's been trying for 6 months to find a distributor for that.

Anna did say something that I thought was right on. I can't even really remember the context now, I think it was in relation to the adrenals, sleep, neutrotransmitters, etc. What she said is that since my body is fighting the lyme, I'll probably always have to watch my levels. Basically, until the lyme is taken care of (which showed up as the main stressor to my body in my ART testing), I'll probably always be off balance. :lol:

That makes sense to me too.

Any of my friends could have told her I'm off balance. :lol:

My good memory is selection apparently, because some days I can't remember my name. :P

:lol::lol: You almost always have a funny in your posts. :D

I cant ever seem to tolerate any probiotics of any kind. I get major reactions to yourt even...its not like what happens with dairy in general...its different. I get bad bloating, digestive distress and increased swelling in my head. I havent taken any probiotics in a long time.

I've come across this info. several times in my reasearch. I'm not sure if this is my problem but I'm just not taking chances because of the increase in symptoms I get.

Alot of the mercury load is in my gut...so it makes sense to me that dumping a bunch of bacteria in might worsen my problems.

Good news on the DMPS, aside from the needle though.

Dr. E put me on probiotics and I still have amalgams. I don't know if the chlorella is helping with that though. Maybe I should go back off of those. I'd considered it before.

I really do think I have babesia...I think all the symptoms make sense. Is that the co infection where your liver gets confused? I think that's it...

Things have calmed down with my mom. I don't know if I have ever mentioned it here, but she was not formally diagnosed, but her Dr. is treating her for bi-polar disorder...so they jsut changed a medication and she is CRAZY sometimes.

She also said that she is reallllly worried I DO have Lyme. She said she doesn't want to see me suffer. I told her I would rather suffer through the treatment of something that is going to get to the bottom of all of this stuff, than symptoms.

Babesia makes sense to me too.

Has your mom tried the gluten free diet? That could help her a little.....or more than a little.

I would rather have you get to the bottom of this and get better too. It's hard being a mom and not wanting your children to suffer and having to deal with lyme which is probably scary enough for her.

tom Contributor
tom
Posted
Everyone,

Does anyone have any ideas on how to get rid of dandruff? I have tried the shampoo's, NOTHING works! It is so itchy! I don't really actually think it is dandruff because I don't have flakes...more like little dots that end up bleeding! :unsure:

Hi Kass,

It could be folliculitis of the scalp.

There are 4 possible causes. 3 are bacterial and one is fungal.

The fungal one is. .. .. . .drumroll, please .. .. .candida albicans!!!!

confusedks Enthusiast
confusedks
Posted

Tom,

I really don't think I have candida. It's possible, but I don't have the symtpoms. My sweet tooth has diminished like crazy since going raw. I am eating fruits, but limited sweeteners. It *could* be candida, but I am not sure. Also, when I had my muscle testing a while ago, the guy said I did NOT have a yeast issue. Hmm.

Carla,

The way you described that is exactly what it feels like! They are like blisters...it's SO itchy! UGH!

The landlord is actually responsible because we told him about the leaks for a long time and he never did anything, so he is responsible. If he doesn't pay...my mom will take him to small claims court, she asked an attorney friends of hers and he said she would win.

Andrea,

My mom isn't willing to go 100% gluten free. It is really frustrating...she can't even stay dairy free. She is WAY better when she is dairy free, but she still eats chocolate chip cookies that my bro makes which is FULL of dairy, gluten, soy, etc. She claims it's too hard for her when she is at work to not eat gluten because she has to eat out (well she doesn't, but isn't willing to make her own lunch and bring it.) It is really annoying because I think it would really help her, but she's not willing. We are TOTALLY opposite in that sense...I will take almost anything out of my diet to help. Sigh.

Everyone,

I officially took my last does of abx today!!! :P I will continue to take the probiotics, but I did have to stop taking the charcoal because the only time I was able to take it was in the middle of the night (because it needs to be away from foods and meds) and I couldn't force myself to do that for more than two days. My question is, if I got chlorella could I take that with food or does that defeat the purpose?

Kassandra

AndreaB Contributor
AndreaB
Posted
I officially took my last does of abx today!!! :P I will continue to take the probiotics, but I did have to stop taking the charcoal because the only time I was able to take it was in the middle of the night (because it needs to be away from foods and meds) and I couldn't force myself to do that for more than two days. My question is, if I got chlorella could I take that with food or does that defeat the purpose?

You can take the chlorella with food.

dlp252 Apprentice
dlp252
Posted
I am doing everything in my power to not get sick!

Good, lol, and LOL on your brother. I'm glad things are better with your mom.

The only problem was that the needle was hurting...I hate when that happens!! I try to be strong but needles just freak me out...especially when I can feel them!

I generally do okay with needles but this would freak me out, lol. I did have a morphin pump when I had my abdominal surgery and every time I pushed the button it would make my arm sting like heck, so I just decided the pain from the surgery just didn't hurt that much, lol.

Get some burbur, too, and take it right with the parsley. When I take those two, they will take away all the symptoms! One day I was shopping for Thanksgiving dinner and had to go to two stores, so I was gone for a while. I started feeling bad. Once I got home I took parsley and burbur, then ten minutes later took them again, then felt fine the rest of the day.

Yeah, they've got the burbur too, but no one has ever suggested that for me. I think the next time I go in I'll get some. I'm already taking cumanda and banderol.

And with this note Rinne. I told the owner of the gluten free store about your frozen gluten/dairy/soy free except for lecithin treats and that I would let him know when they make it to the states. He's a small store so needs a distributor. He's just able now to get the Coconut Bliss that we love. He's been trying for 6 months to find a distributor for that.

OMG...I MIGHT fly all the way up there just to get some, lol! Course, that means I'd have to eat them all because they wouldn't make it back right?

I officially took my last does of abx today!!!

Hooray!

confusedks Enthusiast
confusedks
Posted

Julie,

Do you know if you had your Lyme test through a lab called HLC? They have locations in Arizona, CA and another state. (don't remember) Just wondering...because that is where they will do my test (the one we don't think will be positive)

Kassandra

AndreaB Contributor
AndreaB
Posted
OMG...I MIGHT fly all the way up there just to get some, lol! Course, that means I'd have to eat them all because they wouldn't make it back right?

Whole Foods has it and I think they've expanded to Northern CA. Check out the website and see where they are now. I think it's coconutbliss.com .......yep that's it.

AndreaB Contributor
AndreaB
Posted

Donna,

They are in northern CA.....go to the website to look and see the stores that carry it. Palo Alto, San Fran, Sacramento, Santa Cruz......and more. Aren't those somewhat near you?

CarlaB Enthusiast
CarlaB
Posted
The landlord is actually responsible because we told him about the leaks for a long time and he never did anything, so he is responsible. If he doesn't pay...my mom will take him to small claims court, she asked an attorney friends of hers and he said she would win.

If you told him about the leaks in writing, you could have a case because of his negligence in not fixing the leak. If it had ruined the chair the first time it leaked, that would be your responsibility. :) It won't be cut and dry though as most leases say they are not responsible for the contents .... but in the case of negligence, there may be an exception because you should be able to expect repairs to be done in a reasonable amount of time. Good luck with that!

YAY on being done with the abx!

Donna, the burbur and parsley are a huge help for me.

We went out to dinner tonight ... I eat SO much LESS than I used to! :o

tom Contributor
tom
Posted
Tom,

I really don't think I have candida. It's possible, but I don't have the symptoms.

Oops oh yeah . .. .. .but it still could be folliculitis.

Green12 Enthusiast
Green12
Posted
Julie,

Do you know if you had your Lyme test through a lab called HLC? They have locations in Arizona, CA and another state. (don't remember) Just wondering...because that is where they will do my test (the one we don't think will be positive)

Kassandra

Kass, I'll try to find my results and let you know.

Rachel, I'm glad things went well and you are feeling ok (other than the needles being an issue :o )

I don't know what it is about needles, but I am the same way. My body does not like them in me at all, it's like get that out of my vein!! I have terrible veins too, chelation especially was difficult it took so long to get into the vein in order to start the drip :(

Green12 Enthusiast
Green12
Posted

Donna, forgot to mention about your appt, sounds like it was a good one today :D

The parsley you brought up reminded me of something, I read an article about eating parsley and all the other fresh green herbs like basil and etc in salads for their anti-inflammatory and anti-bacterial properties. I might start adding these to my salads :D

I just wanted to mention too that you can find pill dispensors at health food stores, we have a small chain here called Vitamin Cottage that is cheaper (they were even giving them away for free with purchase!), but I imagine you can find them at Whole Foods and Wild Oats. They have 7 snap compartments and are labeled by the days of the week.

ShadowSwallow Newbie
ShadowSwallow
Posted

Kassandra,

Yay on the PICC line!!! :D :D :D

I also have terrible dandruff. :blink: Recently I've acquired a DH-like rash on my elbows, wrists, and calves. Maybe that could be Lyme as well.

My Mom and I also don't get along very well. We're way too similar personality-wise, creates a lot of conflicts. :P

Everyone,

The past few days have not been good to me. :( Fluctuating between 30%-60% and pain levels consistently between 3 and 5.5. Last night I accidentally got some coconut oil into my mouth and nearly had my throat close up on me. The only reason I didn't wake Mom up and have her take me to the hospital is because I had a debate tournament I wanted to judge at today (and very much enjoyed judging) and going to the hospital at 2:30am would definitely kill that plan. :ph34r: Also having D and weird-colored BMs, probably from the detox I'm doing. Definitely better today, but still not good. Darn body not cooperating with me! :P

Also, Mother talked to her sister about my Lyme, and she mentioned that her friend has it and is doing something alternative, so Mom emailed her. The least-vague thing I could get out of her was that this friend's acupuncturist has her taking something-Mercola for 4 months. :blink: So now we're going to be taking medical advice from my aunt's friend's acupuncturist? :blink::ph34r:

ShadowSwallow Newbie
ShadowSwallow
Posted

Oh, and I forgot to mention that I've started to reacting to 5 new foods in the past two days (corn, dairy, lamb, pork, buckwheat).

Sorry for being so negative, but this has been a comparatively bad few days. :( :(

confusedks Enthusiast
confusedks
Posted

Birdy,

I am so sorry to hear about your throat!! That's so scary!! I think I would have freaked out...lol! I still am really splotchy all over my body from the abx and I am really worried...lol.

I understand about your mom, it is really hard to deal with! My mom and I actually are quite different, so it's hard to come to an agreement. I hope you can get some helpful advice from your aunt's acupuncturist. :unsure:

I actually am starting to think I don't have dandruff. I think it's what Carla said (I can't remember...stupid brain!).

Kassandra

confusedks Enthusiast
confusedks
Posted

Birdy,

I am sorry you're reacting to foods...that's really hard. That is why I am doing raw foods...it's easier than avoiding 43829738954389 foods. LOL!!!

As Andrea said to me...don't worry about the negativity. We're here for you whether you feel good or not.

Kassandra

AndreaB Contributor
AndreaB
Posted
Last night I accidentally got some coconut oil into my mouth and nearly had my throat close up on me.

Also, Mother talked to her sister about my Lyme, and she mentioned that her friend has it and is doing something alternative, so Mom emailed her. The least-vague thing I could get out of her was that this friend's acupuncturist has her taking something-Mercola for 4 months. :blink: So now we're going to be taking medical advice from my aunt's friend's acupuncturist? :blink::ph34r:

Both those sound scary. Hopefully your mother will realize you still need to see an LLMD.

My daughter and I are alot alike personality wise and we have problems already.....she's almost 8.

Sorry for being so negative, but this has been a comparatively bad few days. :( :(

See below. :)

Sorry about the new foods. It's so hard when more foods start causing problems. :(

As Andrea said to me...don't worry about the negativity. We're here for you whether you feel good or not.

Ditto.

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    4. Dizzyma
      - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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      Newly diagnosed mam to coeliac 11 year old

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her on a full gluten free diet. my concerns are that she wasn’t actually physically s...
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    • TheDHhurts
      Prana Organics no longer GFCO-certified

      By TheDHhurts · Posted

      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what protocols/standards/testing they have in place. The person that wrote back said that they are now certifying their gluten free status in-house, but that she couldn't answer my questions related to standards because the person with that info was on vacation. Not very impressed, especially since it still says on their website that they are GFCO-certified. Buyer beware!
    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
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