Omg...i Might Be On To Something

[dlp252]

I've been reading here and there too...just wanted to say "hi" to all you guys!

Cecile!!!!! Was just wondering where you've been! How are you!?

[TriticusToxicum]

I have a question..

How would you guys read these results??

Is this a positive or a negative?

results 1:160 Titer

Interpretation of antibody titers:

<1:40 Negative

1:40 Indeterminate

= or >1:80 Positive

So are the results positive or negative??

I dont know how to read this.

Ok I'll give this a stab...If I remember correctly titers are actually what they refer to as serial dillutions. They help labs determine how +/- results are. What the 1:40 - 1:80 ranges mean is this (again if I am remembereing from my microbiology class a long time ago) a dilution of 1 part sample per 40 parts solvent yields a concentration of anitbodies that is deemed "normal". IF you need to further dilute the solution to 1:80 to attain the "normal" concentration your results are deemed intermediate. I your case it looks like you are a strong positive as the dilution required twice as much solvent to bring the concentration to what would be considered "positive". From your description of your symptons this would seem to make sense.

Again, this is just my best recollection. I would ask your doc or someone with a better grasp on the scientificness for definitive answers.

[dlp252]

But I still DO feel that life has passed me by...... Maybe that will pass, too.

I feel this way from time to time too...fortunately it's not very often and it's not very strong, but I definitely have regrets about stuff I SHOULD have done or wish I'd done. We can't really change any of that, all we can do is make the most of what we have NOW and what we have left.

Along with the suggestions about what might counteract some of these feelings for you...natural day light...maybe if you get some of those lightbulbs that are supposed to be like natural daylight...they are also supposed to improve mood I think.

I am totally missing out on the scientificness of that discussion you all are having about RAchel's numbers.

Yep, my head is spinning trying to make sense of it, lol.

So do you think its positive??

When I asked the Dr. he answered like this...he said "Its poitive because anything greater than 1 and eighty is positive and yours was 1 and one hundred sixty." Does this make sense to you cuz it still isnt making sense to me. There is no scientificness here....its just plain math and I suck at math.

OMGosh, the world may be ending soon because I actually think I understand what he is saying!!!!! OMGosh! He is reading these as two separate numbers...1 and 160. Postive results would be 1 and 40, but yours is 1 and 160, which is WAY positive in that case.

[TriticusToxicum]

But I still DO feel that life has passed me by...... Maybe that will pass, too.

This too shall pass You've been through SO MUCH in your life that you can't expect everything to magically turn around overnight. (Only in Rachelville ) I look at it this way, (the same way my wife approaches pregnancy weight gain) How long did it take you to get where you are? (9 mos in the prego example) You should allow yourself that much time to see any sort of results in the opposite direction. Baby steps. Look at it as you would if you were eyeing a new climb that you have never attempted. Do you loop up your rope and lasso the summit and drag yourself up the rope? I doubt it (even with your dingo powers ). I bet that first you check your safetyy equipment. Then you size up the mountain. Where is my first handhold? Where can I wedge my foot so I can boost myself higher? Where do I go from there? Baby steps. Incremental achievement. Set little goals and celebrate life when you achieve them. You have a LOT GOING FOR YOU. Take stock (don't be modest) and figure out how to leverage your assets against your weaknesses.

When I was in Lake Placid for the conference last week I had the pleasure of meeting Jeff Blatnik(he gave the keynote speech). I don't know if you remember him or not. He was an Olympic wrestler on the 1984 team. He won a gold medal despite having to overcome lymphoma. I think he has a book out. His story is very inspirational and he is quite a treat to listen to.

RICHARD - - have I lost my mojo?? Have you found yours?

I'm working on it. The conference experience (Blatnik aside) really beat me down. I thought I had this whole gluten-free lifestyle in the bag. Going away for a few days and having to live outside my bubble really smacked me down. The meals that were provided by the conference weren't gluten-free (even though they asked about dietary restrictions). I asked several times for gluten-free alternatives, but since the meals were made off site and delivered there was nothing they could offer me. Don't worry I made my concerns and displeasure known . But the whole sitting at a table of strangers and having to repeatedly explain why I wasn't eating my goulash or chicken wrap, or the chocolate death they served for dessert just wore me down. I wished I was "normal" for the first time in a long time.

When I got home my wife had made banana bread for me. It turns out that she used the hand mixer instead of my gluten-free stand mixer, so I suffered a well intentioned glutening this weekend. Then she was making a jello dish for my great grandmother's birthday party and I see her stirring it with a wooden spoon that i have long since forsaken. I reminded her that there is no way to clean those things with any amount of certainty. She mumbled something about how I would have yelled if she stirred it with the gluten-free spatula and melted it (we have a whole drawer of gluten-free spoons by the way ) I just had to walk away.

I know it's hard enough to "get it" when you have "it" (celiac disease), but I'm just frustrated with the whole world right now.

This too shall pass

[CarlaB]

I honestly don't know. I can honestly read it both ways (it depends on what it means, because 1:160 could be less than 1:40 or it could be greater than 1:80, it depends on if we are solely looking at the second value, or if it is a numerator/denominator deal here). I'm sorry I don't have more info. I woud definitely specifically clarify with you doctor....but you know that already.

I'd call Igenex ... I didn't notice that is was a colon and not a decimal point. I've never seen that before. 16 is obviously larger than 8, but .16 is smaller than .8. I'd call.

I have to make this quick since I'm trying to write a paper, but I wanted to say....Thank you Andrea for the hug

Hi MO!! Nice picture

[dlp252]

I know it's hard enough to "get it" when you have "it" (celiac disease), but I'm just frustrated with the whole world right now.

This too shall pass

I'm so sorry! I'm frustrated for all of us right now.

[CarlaB]

For those of you who are single, don't think that you feel life is passing you by because you are single. I have kids and a hubby and I feel that life is passing me by right now, too. I sometimes do more than I can handle, like going to see Morgan this weekend, then I pay for it .... I am not enjoying doing things with my kids (because I'm not doing things with my kids due to a lack of energy), I hardly have the energy to look at all the papers they bring home from school. I'm just coasting through life right now doing nothing at all. It's not because you're single, married, kids, no kids, that life feels like it's passing you by right now it's because that's how you feel when you can't live it as fully as you did in the past. Whatever life we end up with means there was another one we sacrificed. Just because there is a life you haven't lived, doesn't mean you haven't lived, it just means that particular life hasn't been your experience.

Richard, glad someone around here remembered some chemisty!

[jerseyangel]

I can relate to the feeling that life is passing me by--I often feel that way. Being sick, having to make excuses, trying to find answers to it all are exhausting and I get angry sometimes that this had to be such a big intrusion on my life.

I do know that I have a lot to be thankful for--and you all that said this to Susan are right--I have been here, living what I guess I was supposed to. This is one of those subjects that I could go on and on about. But, cuz I like you all so much, I won't

Rachel, I've tried to wrap my mind around your mathmatical conundrum I think you should call Igenex--go to the source

Good morning to everyone!

[CarlaB]

I see you, Morgan!!

[TriticusToxicum]

Richard, glad someone around here remembered some chemisty!

I swear, the most random things stick to my grey matter

Susan-

I think this song was written for you. It always breaks me up.

* I Hope You Dance * (like Elaine if you need to )

LeeAnn Womack

I hope you never lose your sense of wonder

You get your fill to eat

But always keep that hunger

May you never take one single breath for granted

God forbid love ever leave you empty handed

I hope you still feel small

When you stand beside the ocean

Whenever one door closes, I hope one more opens

Promise me that you'll give fate a fighting chance

And when you get the choice to sit it out or dance

I hope you dance

I hope you dance

I hope you never fear those mountains in the distance

Never settle for the path of least resistance

Living might mean taking chances

But they're worth taking

Lovin' might be a mistake

But it's worth making

Don't let some hell bent heart

Leave you bitter

When you come close to selling out

Reconsider

Give the heavens above

More than just a passing glance

And when you get the choice to sit it out or dance

I hope you dance

(Time is a wheel in constant motion always)

I hope you dance

(Rolling us along)

I hope you dance

(Tell me who)

I hope you dance

(Wants to look back on their years and wonder)

(Where those years have gone)

I hope you still feel small

When you stand beside the ocean

Whenever one door closes, I hope one more opens

Promise me that you'll give faith a fighting chance

And when you get the choice to sit it out or dance

Dance

I hope you dance

I hope you dance

(Time is a wheel in constant motion always)

I hope you dance

(Rolling us along)

I hope you dance

(Tell me who)

(Wants to look back on their years and wonder)

I hope you dance

(Where those years have gone)

[jerseyangel]

Richard--I love that song! It really applies here.

[CarlaB]

I swear, the most random things stick to my grey matter

I can relate ... but at least I usually remember more interesting things than dillutions!!!

[DingoGirl]

more wonderful words of encouragement from everyone.

Patti.....please tell us about your woes because I am sure everyone is SICK of hearing my broken record. (Patti said conundrum I love that word)

Richard....what a heinous conference experience. It just makes you feel like an alien, doesn't it? It does suck for all of us. Sorry about your well-intentioned glutening also.....dang, do the wooden spoons hold onto gluten forever? I never changed mine, just scrubbed them well.....and I can, believe it or not, manage to go a few weeks wihtout a glutening. thanks for the song I am going to put a song for all of us up here later, been meaning to, that Willie Nelson sings to me every day.

Miamia....bless your heart. Dang girl, I hope your doctor gets to the bottom of everything soon and gets that candida wiped out.....

Carla.....life hasn't passed you by....you're just too tired right now to jump in. I believe that it will get better for you. And you'll have all kinds of energy for your grandbabies. (way in the future!)

Well, today I am meeting with the new patient my GI doctor referred to me. Must gather information and print materials for her. She told me she's been eating the cheese off the pizza her family gets...... she doesn't really get it, I have to be the gentle bearer of bad news......

Life is crazy. I woke up today feeling pretty much back to my "normal" self. GLUTEN IS EVIL. I am astonished at what it does to my little brain. and furious.

Morning everyone.

[AndreaB]

So do you think its positive??

When I asked the Dr. he answered like this...he said "Its poitive because anything greater than 1 and eighty is positive and yours was 1 and one hundred sixty." Does this make sense to you cuz it still isnt making sense to me. There is no scientificness here....its just plain math and I suck at math.

Yep, that's the way I'm reading it. I am no math whiz but I did enjoy it (except geometry). Numbers where my job......accounting/receivables/payables.

OK...so I guess I was looking at it like if it was really one hundred sixty then the first number should become a 2?? But I suppose thats not how the test is read.....it looks like the first number stays a 1 and we are only looking at the second number....which makes my test very positive.

Can you tell I'm trying to "erase" my Lyme Diagnosis....

A girl can hope right...

I would think it's very positivie too. A girl can always hope. If there is no hope, there isn't much to life.

I wished I was "normal" for the first time in a long time.

When I got home my wife had made banana bread for me. It turns out that she used the hand mixer instead of my gluten-free stand mixer, so I suffered a well intentioned glutening this weekend. Then she was making a jello dish for my great grandmother's birthday party and I see her stirring it with a wooden spoon that i have long since forsaken. I reminded her that there is no way to clean those things with any amount of certainty. She mumbled something about how I would have yelled if she stirred it with the gluten-free spatula and melted it (we have a whole drawer of gluten-free spoons by the way ) I just had to walk away.

I know it's hard enough to "get it" when you have "it" (celiac disease), but I'm just frustrated with the whole world right now.

This too shall pass

Hugs Richard. Hope this doesn't have you down long.

Well, today I am meeting with the new patient my GI doctor referred to me. Must gather information and print materials for her. She told me she's been eating the cheese off the pizza her family gets...... she doesn't really get it, I have to be the gentle bearer of bad news......

Have a good time at your meeting today. That is a very nice thing for you to do.

Hi Patti! Hope you are feeling good today. Still adore your kitty whenever I see his face.

Miamia,

Sorry about the candida. Did you talk to your doctor about getting tested for lyme through Igenix? I would still consider it, especially if eos comes back negative.

Carla,

Thinking about you and your appointment today.

Hi Donna! Always love to see your smiling face too.

[jerseyangel]

Susan,

Sounds like things are looking up today I think it's great that you will be advising new patients on the gluten-free lifestyle. What lucky patients to have you to personally guide them.

No real woes here--just an understanding of what we all go through from time to time

[CarlaB]

Carla.....life hasn't passed you by....you're just too tired right now to jump in. I believe that it will get better for you. And you'll have all kinds of energy for your grandbabies. (way in the future!)

I know it hasn't ... though I feel like it is now for a while ... I just wanted you to know that all of us feel that way from time to time.

Oh, and I'm hoping Morgan meets a man very soon as I DON'T want grandbabies to be WAY in the future!!!! She knows this ... She's baby crazy, too .... she'd like me to have one, I'd like her to get married and have one.

[TriticusToxicum]

Well, today I am meeting with the new patient my GI doctor referred to me. Must gather information and print materials for her. She told me she's been eating the cheese off the pizza her family gets...... she doesn't really get it, I have to be the gentle bearer of bad news......

The Lord works in mysterious ways...

[AndreaB]

.... she'd like me to have one, I'd like her to get married and have one.

[Rachel--24]

Ok I'll give this a stab...If I remember correctly titers are actually what they refer to as serial dillutions. They help labs determine how +/- results are. What the 1:40 - 1:80 ranges mean is this (again if I am remembereing from my microbiology class a long time ago) a dilution of 1 part sample per 40 parts solvent yields a concentration of anitbodies that is deemed "normal". IF you need to further dilute the solution to 1:80 to attain the "normal" concentration your results are deemed intermediate. I your case it looks like you are a strong positive as the dilution required twice as much solvent to bring the concentration to what would be considered "positive". From your description of your symptons this would seem to make sense.

Thanks for all that scientificness Richard...at least someone was paying attention in class.

Numbers just arent my thing....I find them to be boring and tedious....and now with the Lyme fog its FAR worse.....instant migraine.

What you're saying makes perfect sense. I had been looking at it as one whole number....as if it were a decimal point seperating them.

I can see NOW that it is NOT a decimal point and so now it makes sense. Richard you are a GENIOUS!

I'm still gonna ask Igenix though....maybe they will give me an early Xmas present and tell me its all a huge mistake.

He is reading these as two separate numbers...1 and 160. Postive results would be 1 and 40, but yours is 1 and 160, which is WAY positive in that case.

Yeah....either WAY positive or a HUGE mistake.

We will pray for the latter.

Then you size up the mountain. Where is my first handhold? Where can I wedge my foot so I can boost myself higher? Where do I go from there?

This is making me want to go climbing!! Susan....when we get better....there are mountains waiting for us! Well....OK....walls on the inside of a building....but who needs to know that??

I'd call Igenex ... I didn't notice that is was a colon and not a decimal point. I've never seen that before. Hi

Yeah.....it must be a "titer" thing. I have no comprehension of math OR chemistry.

Rachel, I've tried to wrap my mind around your mathmatical conundrum I think you should call Igenex--go to the source

And now I am trying to wrap my mind around "conundrum".

I was just about to say that English was my STRONG subject but...ummmmm...maybe not.

Yeah...I'm gonna go straight to the source...when I get off work I'm gonna GO to Igenix...with my paper...and I'm gonna make them explain to me how this conundrum = Lyme Disease!

* I Hope You Dance * (like Elaine if you need to )

LeeAnn Womack

Great song Richard!

Makes me wanna cry though...

Sorry about that stinkin conferance not providing you with food. Its bad enough not having anything to eat and then having to sit there explaining it to everyone...bummer. Sorry you had to go through that. Glad you let them know you were not pleased though.

Well, today I am meeting with the new patient my GI doctor referred to me. Must gather information and print materials for her. She told me she's been eating the cheese off the pizza her family gets...... she doesn't really get it, I have to be the gentle bearer of bad news......

Susan...so great that you're volunterring your time to help the newby. Yes....you tell her....very gently...about how she musnt eat the cheese off the crust. There is no more thick, greasy, dripping with cheese yummy gluten filled pizza....its a thing of the past. BUT....there is always Amy's Rice Crust Pizza!!

Ok...maybe dont tell her about the rice pizza while she's in mourning....

Carla....good luck at your appt.....cant wait to hear about it.

[TriticusToxicum]

Susan...so great that you're volunterring your time to help the newby. Yes....you tell her....very gently...about how she musnt eat the cheese off the crust. There is no more thick, greasy, dripping with cheese yummy gluten filled pizza....its a thing of the past. BUT....there is always Amy's Rice Crust Pizza!!

Ok...maybe dont tell her about the rice pizza while she's in mourning....

I wouldn't tell her about Rachelville yet either. She might think you're a bit "off" (dingos and Auxigro geese and all ). I think that's best saved for the second or third date

DO tell her about this wonderful place and all its scientificness.

Check this out if you missed it Heidi Collins on CNN has Celiac, and they did a spcial report this morning. We're emailing her to thank her - join in!

Open Original Shared Link

[DingoGirl]

I wouldn't tell her about Rachelville yet either. She might think you're a bit "off" (dingos and Auxigro geese and all ). I think that's best saved for the second or third date

DO tell her about this wonderful place and all its scientificness.

Of COURSE I am telling her about this forum, but, not divulging my user name not until after a few more dates.....

[TriticusToxicum]

Of COURSE I am telling her about this forum, but, not divulging my user name not until after a few more dates.....

Just a thought - It's not Heidi Collins, is it?

[Green12]

Hello all! I missed one day and I am 10 or so pages behind, you all have been so chatty . So I am just going to jump in with random stuff:

Laura, such an adorable picture of your nieces

Hi Celia Good to see you.

Morgan, hi sweetie You and your mom look so cute in your picture!

Mia Mia, how are you? You have been quiet lately. I have been thinking about you, hoping you are hanging in there with everything.

Rachel, the lyme stuff is still all over my head.

Patti, not you too with the big words

Susan, hugs you goof! I am so sorry you were so sad, but this just in, you woke up feeling yourself today and I am so happy Sadness be gone!!

Richard, I'm sorry about your experiences at the conference and then the glutening when you returned. I can relate on so many levels. I feel as if I live in a bubble, and when I have to go outside of that into the "real world" I am reminded just how different I am and how much I am isolated by a special diet and food, chemical, and environmental sensitivities. It definitely sucks. Hope your mojo returns soon

I have been thinking about you all so much. I have to say again how much I love this thread and all of you. Even though we may have some different things going on I have realized that we are so much more alike than different, if that makes sense? Carla, sharing that you too feel like your life is passing you by, Patti too, no matter where we all are in our lives (younger, older, single, married, etc) our illnesses/health issues have interupted our journeys, and we have had to walk a different path, not by choice, and that's a hard adjustment to make.

[AndreaB]

Hi Julie!!!!!

Missed you yesterday.

Glad you're back.

Yes, we are all on different, but similar paths as far as our health. We have had to modify our lives to fit the new health demands. But, we will come out ahead and for the better. Don't despair.

The sun is always behind the clouds.....sometimes it just takes longer to find it........

especially in Washington.

[jerseyangel]

I have been thinking about you all so much. I have to say again how much I love this thread and all of you. Even though we may have some different things going on I have realized that we are so much more alike than different, if that makes sense? Carla, sharing that you too feel like your life is passing you by, Patti too, no matter where we all are in our lives (younger, older, single, married, etc) our illnesses/health issues have interupted our journeys, and we have had to walk a different path, not by choice, and that's a hard adjustment to make.

Wow Julie, you said that so well Yep--every once in a while, I come out with a $.50 word

Richard, Sorry about the events of last week. It's relatively easy to work this thing into our everyday lives--home, work, etc. It's when we have to venture out of our safe zone that it becomes clear that we really do have special needs.

Laura, I keep meaning to tell you how cute your nieces are! So adorable How are you doing on your diet challenge?

Hi Miamia--Been thinking about you

Carla, That picture of you and Morgan is too cute! How are you feeling--you had an appt. today, right?

Rachel, I'm glad you're going to speak directly to Igenix--I'll be interested to know what they tell you. Could anything, just once, be clear cut and simple????

Hi Andrea How is everything? You and your family are in my thoughts.

Where's Donna today?

Hi to everyone