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

confusedks Enthusiast

Ohhh Carla.....where are you? We miss you in Lymechat! LOL! :lol:


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
Nyxie63 Apprentice

I can't believe I'm saying this.....

I'm going to be trying ecoffee today. :o:blink:

Will let you know how it turns out.

CarlaB Enthusiast
Wait, did I miss posts? ..... must go back and read over to find this meltdown.

Sorry, it was in Lyme chat, there is no permanent record of it! :lol: She did a GREAT job though! We got denial, deserving of pain, everything all in one day, practically one minute!

Nyxie, we've ALL been there .... you can go back as there are permanent records of many of our meltdowns, LOL.

Ohhh Carla.....where are you? We miss you in Lymechat! LOL! :lol:
:lol: :lol: :lol:

Thanks. :) I have a date on Friday nights. ;)

I can't believe I'm saying this.....

I'm going to be trying ecoffee today. :o:blink:

Will let you know how it turns out.

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

We all eventually get that desperate .... well, except for Donna ....

mftnchn Explorer
I think the Malarone is working!

I wouldn't be able to do what you do Sherry. :) Maybe for a year or two ..... How long have you been living in China?

Glad this is working for the babs, and I could live with an occasional 85% day! Way to go to get on top of this right away.

I am hanging in there, still have fatigue, brain fog and achiness at times. Really notice my stamina not up. However, the improvement in that one lab gave me a lot of hope that eventually we'll get on top of it all. I wasn't sure how my other two doctors would respond to the ART input from Dr. E, but they have been just great. I feel like I have a team to help me.

I have a full schedule through Wednesday so am a bit afraid I'll crash. Won't have a chance to post much either.

Sherry

Clark Bent as Stupor-Man Contributor
Sounds good! What is this risotteria you are speaking of? I wish we had something like that in my area.

The risotteria is a gluten-free restaurant in the city (well, nearly everything on the menu is gluten-free or is offered as either gluten-free or not gluten-free)... has paninis, pizza, risotto, and salads so it's mostly carb-heavy which is the opposite of my diet... small place, only 10 small tables and a handful of bar seats but they also do takeout and the food was very good... they have a website by the same name if you wanted to check it out

oh, by the city, I mean NY... bad habit I guess from growing up in jersey

confusedks Enthusiast
I can't believe I'm saying this.....

I'm going to be trying ecoffee today. :o:blink:

Will let you know how it turns out.

Good luck! I was going to go to the store last night to get the supplies, but I didn't have a chance. <_<

Carla....Oh yea! Date night sounds better than the chat. :wub::)

Green12 Enthusiast
Sorry, it was in Lyme chat, there is no permanent record of it! :lol: She did a GREAT job though! We got denial, deserving of pain, everything all in one day, practically one minute!

Nyxie, we've ALL been there .... you can go back as there are permanent records of many of our meltdowns, LOL.

Very true, lots of ups and downs documented here in the OMG.

Do you have a private room at Lyme chat? How exactly does it work? I haven't been in a chat room for a very long time. I thought Paula was trying to set one up for us.

Carla more questions about the sauna, the most I've done it before was 3 to 4 times a week or every other day. I am suppose to do it everyday now and I know it is so important, crucial to take a shower and wash the sweat and toxins off that have been released, but I was just curious as to if you washed your hair everyday also?

I wasn't sure how my other two doctors would respond to the ART input from Dr. E, but they have been just great. I feel like I have a team to help me.

I have a full schedule through Wednesday so am a bit afraid I'll crash. Won't have a chance to post much either.

Sherry good luck with everything until Wednesday, try to hang in there!

It's wonderful news that all your Docs are working together as a team, that would be very difficult if they weren't.

The risotteria is a gluten-free restaurant in the city (well, nearly everything on the menu is gluten-free or is offered as either gluten-free or not gluten-free)... has paninis, pizza, risotto, and salads so it's mostly carb-heavy which is the opposite of my diet... small place, only 10 small tables and a handful of bar seats but they also do takeout and the food was very good... they have a website by the same name if you wanted to check it out

oh, by the city, I mean NY... bad habit I guess from growing up in jersey

Sounds wonderful, like I said I wish we had something like that around here. Not to go to frequently, because I also couldn't eat that way all the time, but to be able to go out to eat once in a while would be nice :lol:

Must be heaven for celiacs or gluten intolerant in NY!


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



Celiac.com Sponsor (A8-M):



Green12 Enthusiast
I can't believe I'm saying this.....

I'm going to be trying ecoffee today. :o:blink:

Will let you know how it turns out.

:lol::lol:

Good luck with it Nyxie!

confusedks Enthusiast

I have a theory about something. I have been having terrible headaches for the past couple weeks. I stopped taking Ambien a while ago, and I will check but it seems the headaches started when I stopped taking the Ambien. Is it possible I am going through withdrawal? Eeek!

I will look up exactly when I stopped and when the headaches started. I took an ambien last night to see if I could sleep a good, solid 12 hours, and no suck luck! I took a 5 mg tablet (which if any of you recall...made me "drunk" last time I took it) and it did NOTHING! :o I was shocked.

So then after laying in bed for 2 hours, I got up and took melatonin and calium/magnesium. Long story short, I have no headache today! Is this just a coincidence? Or am I onto something? :lol:

dlp252 Apprentice

Got an email from my friend finally...she's home and actually "sounded" pretty good. She's actually still considering going on the crusie, lol. Her doctor told her she can just as easily sit around on the ship as at home. I don't know about THAT, but if he okayed it... :unsure: She'll have that metal plate in her ankle for a while so she joked about when we go cruising she'll set off the metal detectors. :P

Mom mom commented on my hair. :lol: Sheesh...whatever my hairdresser did, I want her to do it again. :P

We all eventually get that desperate .... well, except for Donna ....

Yep, yep, yep! :lol:

CarlaB Enthusiast
Carla more questions about the sauna, the most I've done it before was 3 to 4 times a week or every other day. I am suppose to do it everyday now and I know it is so important, crucial to take a shower and wash the sweat and toxins off that have been released, but I was just curious as to if you washed your hair everyday also?

I do not wash my hair every time. :) Sometimes I just put it up and don't get it wet at all, sometimes I just use conditioner, sometimes I wash and condition.

I have a theory about something. I have been having terrible headaches for the past couple weeks. I stopped taking Ambien a while ago, and I will check but it seems the headaches started when I stopped taking the Ambien. Is it possible I am going through withdrawal? Eeek!

I will look up exactly when I stopped and when the headaches started. I took an ambien last night to see if I could sleep a good, solid 12 hours, and no suck luck! I took a 5 mg tablet (which if any of you recall...made me "drunk" last time I took it) and it did NOTHING! :o I was shocked.

So then after laying in bed for 2 hours, I got up and took melatonin and calium/magnesium. Long story short, I have no headache today! Is this just a coincidence? Or am I onto something? :lol:

There was a thread a while back on LN about the possibility of Ambien helping detox. It was an interesting thread ..... and Ambien was something else I started on my upward swing .... so it could actually be helping you in some way. We came to no conclusions, but it is a possibility ... and believe it was specifically "head" detox.

confusedks Enthusiast
Got an email from my friend finally...she's home and actually "sounded" pretty good. She's actually still considering going on the crusie, lol. Her doctor told her she can just as easily sit around on the ship as at home. I don't know about THAT, but if he okayed it... :unsure: She'll have that metal plate in her ankle for a while so she joked about when we go cruising she'll set off the metal detectors. :P

My brother had metal plates in his wrist/arm at one point, and since we were in Thailand when he broke it and needed surgery...we had to go through metal detectors and his arm set it off! He had to carry a note from the Dr saying what was in his wrist! :lol:

There was a thread a while back on LN about the possibility of Ambien helping detox. It was an interesting thread ..... and Ambien was something else I started on my upward swing .... so it could actually be helping you in some way. We came to no conclusions, but it is a possibility ... and believe it was specifically "head" detox.

I was talking to someone about this last night on the chat. Either it has nothing to do with my headaches and I am just finally pulling out of my herx, or I was sort of dependent. Hmmm. :unsure:

confusedks Enthusiast

I just checked out my notes about my symptoms, and it turns out that the headaches started before I stopped the ambien! Whew! I was so worried I had some sort of addiction, lol! :lol: Thank goodness for my Lyme Log.

Nyxie63 Apprentice

E-coffee accomplished! :ph34r:

Hope the end result wasn't to feel spring-time fresh. Don't feel anywhere near that. A lot lighter tho. :lol::lol:

Is it normal to have some cramping after? Also feel a little light-headed. Just wondering if maybe I did something wrong? Lay on my right side for as long as I could (about 8 minutes).

Oh, btw.... my gallbladder is so NOT happy right now. Probably should have asked before doing this. Kinda forgot. Do you think this is a problem?

-----------------

LOL! Nice to know I'm not alone in the meltdown dept. Also glad there's no sign of it on my permanent record. Have enough of my neuroses recorded for posterity already. ;)

CarlaB Enthusiast

Congratulations!

Yeah, you can feel a little light- headed and better does not mean well. :) Cramping can happen .... usually I get it during .... you did great, the first few I could only hold for about 3 minutes. ;)

I don't know about the gall bladder and coffee enemas ..... I know the enema can make the gall bladder dump bile (or something like that) but I don't know if that's a problem for someone with gall bladder issues. Thinking about it, it seems it would be good, but I really don't know.

CarlaB Enthusiast

Kassandra, I hope my daughter didn't drive you crazy on texting .... she was bored and playing with my iPhone ... she is the youngest, so last in line for the computer, LOL, so gets online on my phone.

aprilh Apprentice
I have a theory about something. I have been having terrible headaches for the past couple weeks. I stopped taking Ambien a while ago, and I will check but it seems the headaches started when I stopped taking the Ambien. Is it possible I am going through withdrawal? Eeek!

I will look up exactly when I stopped and when the headaches started. I took an ambien last night to see if I could sleep a good, solid 12 hours, and no suck luck! I took a 5 mg tablet (which if any of you recall...made me "drunk" last time I took it) and it did NOTHING! :o I was shocked.

So then after laying in bed for 2 hours, I got up and took melatonin and calium/magnesium. Long story short, I have no headache today! Is this just a coincidence? Or am I onto something? :lol:

Magnesium is very good for headaches, so that could have done it. :)

aprilh Apprentice
E-coffee accomplished! :ph34r:

Hope the end result wasn't to feel spring-time fresh. Don't feel anywhere near that. A lot lighter tho. :lol::lol:

Is it normal to have some cramping after? Also feel a little light-headed. Just wondering if maybe I did something wrong? Lay on my right side for as long as I could (about 8 minutes).

Oh, btw.... my gallbladder is so NOT happy right now. Probably should have asked before doing this. Kinda forgot. Do you think this is a problem?

-----------------

LOL! Nice to know I'm not alone in the meltdown dept. Also glad there's no sign of it on my permanent record. Have enough of my neuroses recorded for posterity already. ;)

Nyxie,

Do you have gallstones that you know of? It is supposed to help the gallbladder dump bile, but if you had some gallstones it might cause a bit of pain. I think overall it would be good for you.

If you are worried you could take a gallstone dissolver for a couple weeks, like Gold Coin Grass. If your docs approve.

aprilh Apprentice
E-coffee accomplished! :ph34r:

Hope the end result wasn't to feel spring-time fresh. Don't feel anywhere near that. A lot lighter tho. :lol::lol:

Is it normal to have some cramping after? Also feel a little light-headed. Just wondering if maybe I did something wrong? Lay on my right side for as long as I could (about 8 minutes).

Oh, btw.... my gallbladder is so NOT happy right now. Probably should have asked before doing this. Kinda forgot. Do you think this is a problem?

-----------------

LOL! Nice to know I'm not alone in the meltdown dept. Also glad there's no sign of it on my permanent record. Have enough of my neuroses recorded for posterity already. ;)

Nyxie,

Do you have gallstones that you know of? It is supposed to help the gallbladder dump bile, but if you had some gallstones it might cause a bit of pain. I think overall it would be good for you.

If you are worried you could take a gallstone dissolver for a couple weeks, like Gold Coin Grass. If your docs approve.

confusedks Enthusiast
Kassandra, I hope my daughter didn't drive you crazy on texting .... she was bored and playing with my iPhone ... she is the youngest, so last in line for the computer, LOL, so gets online on my phone.

No! It was so cute! :D I thought I wonder if she was bored and Carla said, "Text Kassandra." :lol::) It's no problem. Are you going to Lyme chat tonight?

CarlaB Enthusiast

She's last in rank around here .... so she gets the last turn at the computer. I have an iphone, so she uses it to get online. She asked if she could text, and I said yes. You were on the list of people I had texted, so she asked if she could text you. :D

aprilh Apprentice

So, tonight I turned red all over like I am reacting to something. I took the glutathione then not long after I took some magnesium. I don't know which one it could be. I have taken both seperately and was fine.

Could it be the glutathione provoking a cleansing reaction in my liver? I am not sure what would make me turn red all over. That is odd for me.

confusedks Enthusiast
She's last in rank around here .... so she gets the last turn at the computer. I have an iphone, so she uses it to get online. She asked if she could text, and I said yes. You were on the list of people I had texted, so she asked if she could text you. :D

:D It was really fun talking to her! I can't wait to meet all of you guys! :wub::)

Nyxie63 Apprentice
Yeah, you can feel a little light- headed and better does not mean well. :) Cramping can happen .... usually I get it during .... you did great, the first few I could only hold for about 3 minutes. ;)

I don't know about the gall bladder and coffee enemas ..... I know the enema can make the gall bladder dump bile (or something like that) but I don't know if that's a problem for someone with gall bladder issues. Thinking about it, it seems it would be good, but I really don't know.

But I wanted to feel springtime fresh! LOL! Thanks. :D

While I still prefer ingesting coffee through a different orifice, I'm not against doing this again. Apparently, I needed a good housecleaning anyway. :ph34r:

I've found a couple of links on e-coffee and liver/gallbladder. Looks like its good for you. Hm. I'll post them below.

Do you have gallstones that you know of? It is supposed to help the gallbladder dump bile, but if you had some gallstones it might cause a bit of pain. I think overall it would be good for you.

If you are worried you could take a gallstone dissolver for a couple weeks, like Gold Coin Grass. If your docs approve.

I've had an u/s and a CT and neither showed any stones or sludge. Was thinking about it and realized that I've been increasing my fat intake since starting the candida diet. Good fats, but still. Guess my body just doesn't like it. Maybe the e-coffee stimulated a gallbladder toxin dump or somesuch? Supposed to go in for a Hida scan sometime next month.

My docs wouldn't approve. The holistic MD doesn't think I have a gallbladder problem and the GI won't consider alternative therapies. Fortunately, I have an appt with the LLMD in a week (YAY!) and will discuss this with them. Thanks :)

Nyxie63 Apprentice

E-coffee and liver/gallbladder info: Open Original Shared Link

It is the liver and small bowel which neutralize the most common tissue toxins: polyamines, ammonia, toxic-bound nitrogen and electrophiles. These detoxification systems are probably enhanced by the coffee enema. Physiological Chemistry and Physics has stated that "caffeine enemas cause dilation of bile ducts, which facilitates excretion of toxic cancer breakdown products by the liver and dialysis of toxic products across the colonic wall."

In addition, theophylline and theobromine (two other chemicals in coffee) dilate blood vessels and counter inflammation of the gut; the palmitates enhance the enzyme system responsible for the removal of toxic free radicals from the serum; and the fluid of the enema then stimulates the visceral nervous system to promote peristalsis and the transit of diluted toxic bile from the duodenum and out the rectum.

Since the enema is generally held for 15 minutes, and all the blood in the body passes through the liver every three minutes, "these enemas represent a form of dialysis of blood across the gut wall" (Healing Newsletter, #13, May-June, 1986).

And some excellent info and preparation details on how to e-coffee:

Open Original Shared Link

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

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

      Have I got coeliac disease

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

      Blood Test for Celiac wheat type matters?

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

      Have I got coeliac disease

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

      Celiac and dermatitis herpetiformis has taken Me from Me

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

      Seeking advice on potential gluten challenge

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

    • Total Members
      133,146
    • Most Online (within 30 mins)
      7,748

    Marsu
    Newest Member
    Marsu
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

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

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.