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Omg...i Might Be On To Something


Rachel--24

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dlp252 Apprentice

Rinne, you just have the most thought-provoking posts, thank you! Truly amazing about meeting your friend for the first time!


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CarlaB Enthusiast
I was thinking we need Laughing Lyme Ladies Lunching, we could have really sharp lime green hats and bags and we could have fun and we could help people understand that we can use illness as a gateway to compassion for ourselves and for the world that so much needs it.

Love and Blessings

Kind of like our own "red hat club"!!! How fun!

Fiddle-Faddle Community Regular

Hey, gals--I was just getting a much-needed haircut, and the TV was on --Montel was doing a show on eosiniphilic disorders. Unfortunately, the volume was off, but I saw printed on the screen something about eosiniphilic disorder causing 20 different food allergies in one child.

I'll make a separate thread about this, just in case it helps someone!

The oddest thing is, years ago, my cat had a recurrent itchy spot on his chin that he kept scratching bloody, and the vet said it was eosiniphilic ulcerative complex. I remember working rather hard to memorize that one! (Wonder if there's such a thing as feline DH?)

jerseyangel Proficient

I'm sure Laura is going to want to see this--

Open Original Shared Link

I put the link in the other thread, but wanted to post it here, too!

happygirl Collaborator

x

jerseyangel Proficient

Sorry you're feeling sick, Laura. Yes, go home and lie down :)

I plan to watch the show later--I'll let you know.

DingoGirl Enthusiast

:lol: OMG LYME GREEN LAUGHING LUNATIC HAT LADIES....... :lol::lol::lol:

Just a drive-by but that was TOO funny! :lol::lol::lol:


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happygirl Collaborator

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CarlaB Enthusiast
So, in the red hat club, they were red/purple if they are over 50. under fifties wear like pink and light purple. So should we start color-coding our group....lyme-green...come on, what others should we do? :)

You get to pick for eos since you're the one being tested for it. Gluten intolerance/celiac -- shall we wear wheat brown? That's so boring. Those with Lyme can wear the green hat with a sash on it in the color of their other issues.

AndreaB Contributor

How bout dark green or forest green?

dlp252 Apprentice
So, in the red hat club, they were red/purple if they are over 50. under fifties wear like pink and light purple. So should we start color-coding our group....lyme-green...come on, what others should we do? :)

Holy heck, what color is mercury, lol...silver??? I like silver....I also like lime green, but may not be able to wear lyme green. :lol:

miamia Rookie
Rinne,

Yes, I believe you are tired due to the events of the week in Calgary and getting a diagnosis. You have been getting so little sleep (in my eyes) that it would seem you are finally allowing yourself to get some much needed rest.

Rachel,

How have things been with you? When's your next appointment?

Carla,

It certainly wouldn't hurt for you to get tested for Lyme. Your new doctor would probably be willing to do that and use Igenix. Especially if you had tick bites when you were younger. We got a lot of flea bites moving into where we are, so even though they are a remoted possibility I'm going to be keeping that in the back of my mind.

Laura,

Keep posting about eos. I will also keep that in the back of my mind. I like learning things and can pass them on to others if the need arrives.

Miamia,

How have you been? When do you get the results from your tests last week.

Donna,

Yae!!! Keep it up. Glad it is easier to follow this since it is written down for you.

Julie,

You are not a lousy participant. Stop that talk!

Andrea-

how is your father?

how are you doing with the new food intolerances?

I won't have the test results for at least another week- I hate waiting- I get so impatient when it has to do with results and my health- I just wanna know so I can do something about it.

I hope youre well

Miamia

AndreaB Contributor
Andrea-

how is your father?

how are you doing with the new food intolerances?

I won't have the test results for at least another week- I hate waiting- I get so impatient when it has to do with results and my health- I just wanna know so I can do something about it.

I hope youre well

Miamia

Haven't talked to my father since the last time. I usually try to talk to him every week or two now. Hopefully he'll be more coherant next time. This has just made me realize that he's getting older, he's 78. Little girls daddies don't remain invincible forever do they.

We are getting through with the intolerances. A lot of mine are just over into the low side so I'm thinking I'll be ok with those. That goes for garlic. Talitha is just over on that and I'm on the line between no reaction and low. Some of them Mitch isn't too interested in testing. We'll see.

I also hate waiting for test results for anything. It's hard to sit back and wait. Hope you get some answers soon.

Fiddle-Faddle Community Regular
You get to pick for eos since you're the one being tested for it. Gluten intolerance/celiac -- shall we wear wheat brown? That's so boring. Those with Lyme can wear the green hat with a sash on it in the color of their other issues.

"My brother said it was a hat,

And so I put it on

Til Daddy asked, "Where the heck's

The toiler plunger gone?"

jerseyangel Proficient
You get to pick for eos since you're the one being tested for it. Gluten intolerance/celiac -- shall we wear wheat brown? That's so boring. Those with Lyme can wear the green hat with a sash on it in the color of their other issues.

Carla--I can't possibly wear wheat--I would be terribly washed out :lol:

Maybe something brighter? I'm open to suggestion...

Then we could all re-do our avatars in our designated color :D

AndreaB Contributor

Alison..... :lol::lol::lol:

Ok, for some seriousness. Just talked to my mom who got back from vacation this weekend. She talked to a friend down in Arizona who just happened to be over visiting my dad and his wife. My mom learned that dad has a tumor on his kidney. He's in a lot of pain, hence the meds. He's not coherant, sleeps a lot. His wife is upset that he hasn't told my brother and I what's going on. I'm upset too. I would really like to go see him if his time is going to be so short. Moms going to see if she can get any more info or not since he won't talk to us about it. I guess that answers my question as to why he said he wasn't going to be around long. :(

I'm sad now......Seth is over here laughing away......can't stay sad with a smiling, laughing baby can I? :):(

jerseyangel Proficient

Oh Andrea,

I'm so sorry to hear about your Dad. I'll bet he didn't want to worry you, and was just not thinking clearly. Of course you want to go and be with him now--

Anytime you need to tlak, we'll be here. PM me anytime :)

Fiddle-Faddle Community Regular

Oh, Andrea :( Do they know if the tumor is malignant? Might it be benign?

miamia Rookie
Alison..... :lol::lol::lol:

Ok, for some seriousness. Just talked to my mom who got back from vacation this weekend. She talked to a friend down in Arizona who just happened to be over visiting my dad and his wife. My mom learned that dad has a tumor on his kidney. He's in a lot of pain, hence the meds. He's not coherant, sleeps a lot. His wife is upset that he hasn't told my brother and I what's going on. I'm upset too. I would really like to go see him if his time is going to be so short. Moms going to see if she can get any more info or not since he won't talk to us about it. I guess that answers my question as to why he said he wasn't going to be around long. :(

I'm sad now......Seth is over here laughing away......can't stay sad with a smiling, laughing baby can I? :):(

andrea-

i am so sorry to hear about your father- yes its hard to believe fathers aren't invincible- I don't think I will ever except that.

I'm glad you ahve your baaby with you when I am reallly down I spend time with my niece and nephew they are like a drug- I spent the whole day with them yesturday and left a completly different person.

miamia

CarlaB Enthusiast

Andrea, I'm sorry about your dad.

Patti, wheat would wash me out, too. How about Celiac.com blue? The darker one ... the color of the logo.

AndreaB Contributor
Oh, Andrea :( Do they know if the tumor is malignant? Might it be benign?

Supposedly either it is too progressed to do chemo or my dad refused it, although I think my mom said it was too far progressed. He had cancer removed 5 years ago with the other kidney and has had cat scans but I guess nothing was caught.

Judyin Philly Enthusiast

ANDREA, SO SORRY TO HEAR THE NEWS ABOUT YOUR DAD.

IT'S SO TOUGH ISN'T IT.

I'LL KEEP YOU ALL IN MY NIGHTLY PRAYERS.

THINKING OF YOU

JUDY

AndreaB Contributor
I'm glad you ahve your baaby with you when I am reallly down I spend time with my niece and nephew they are like a drug- I spent the whole day with them yesturday and left a completly different person.

miamia

Seth's nickname is Sunshine. Although he's getting more Stormy as he gets older and copies his older siblings.....he's still more sunshine than storm at this point though.

dlp252 Apprentice
Alison..... :lol::lol::lol:

Ok, for some seriousness. Just talked to my mom who got back from vacation this weekend. She talked to a friend down in Arizona who just happened to be over visiting my dad and his wife. My mom learned that dad has a tumor on his kidney. He's in a lot of pain, hence the meds. He's not coherant, sleeps a lot. His wife is upset that he hasn't told my brother and I what's going on. I'm upset too. I would really like to go see him if his time is going to be so short. Moms going to see if she can get any more info or not since he won't talk to us about it. I guess that answers my question as to why he said he wasn't going to be around long. :(

I'm sad now......Seth is over here laughing away......can't stay sad with a smiling, laughing baby can I? :):(

I'm soooo sorry! Yes, just keep looking at that precious little baby of yours!

Green12 Enthusiast

Andrea, I am so sorry to hear this about your Dad. I hope you can make arrangements to get down there to be with him. You and your family are in my thoughts.

This is a fun link for picking a color based on its meaning:

Open Original Shared Link

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
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