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Omg...i Might Be On To Something

Rachel--24

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AndreaB Contributor
AndreaB
Posted

Night.

After I check to see if there are any new posts I must get ready to call it a night too.

Talitha has an upset tummy so I'm not sure she is even asleep yet.

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Judyin Philly Enthusiast
Judyin Philly
Posted
artist are crazy....I would never date one :lol::lol::lol:

and with that....I am off to bed. Night, girls! ;)

:o:blink::o:blink: YOU BETTER WATCH IT GIRLFRIEND...I MARRIED AN ARTIST AND MY SON IS A ARTIST...SO .... :ph34r:

:ph34r: DANG, WISH YOU WERE WRONG..BUT YOUR SO RIGHT..THEY BOTH ARE NUTS.

ARTIST ARE CRAZY NUTS. :blink::ph34r::lol:

NITE

JUDY

DingoGirl Enthusiast
DingoGirl
Posted
:o:blink::o:blink: YOU BETTER WATCH IT GIRLFRIEND...I MARRIED AN ARTIST AND MY SON IS A ARTIST...SO .... :ph34r:

:ph34r: DANG, WISH YOU WERE WRONG..BUT YOUR SO RIGHT..THEY BOTH ARE NUTS.

ARTIST ARE CRAZY NUTS. :blink::ph34r::lol:

NITE

JUDY

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

happygirl Collaborator
happygirl
Posted

x

Green12 Enthusiast
Green12
Posted
Just a drive by....

I'm off to Johns Hopkins for my appt. I am really hopeful. As of this weekend, I have some new ideas...mainly eosinophilic disorders.

I will hopefully post tonight with more information.

xoxo

Best of luck with your appt today Laura. I'm so happy you are feeling very hopeful, feeling hopeful for you! You will be in my thoughts :).

Eosinophilic disorders? What is that exactly? Must look it up.........

Anybody have any opinions as to if getting allergy testing is a good idea for me or a waste? I'm not sure finding out will be beneficial because I can't change how I eat. Some of the things I show up allergic to don't make me sick, while some of the things I'm suppose to be able to eat do in fact make me sick :blink: I am torn what to do......

I am wondering if I should at least do the celiac gene and etc. to start with.

dlp252 Apprentice
dlp252
Posted
Donna, you'll really be pleased with how much chiropractic helps. I've gone for years ... used to be regularly, now that I've had my TMJ fixed, it's only a few times per year as I don't need it as often. Once you get all fixed up, you'll only need it occassionally.

This is what I'm hoping and why I'm so excited I think. I've lived with the neck pain (and other pains that I think they'll address once the neck thing is done) for several years now, so I'm just excited it might actually get fixed!

You're challenging me aren't you. It's easy to remember that you have an appointment everyday......not so easy to remember who you see. :P

Not easy for me either...I had to pull out my calendar to type that list, lol. :lol:

jerseyangel Proficient
jerseyangel
Posted

Laura and Donna--good luck today on your appointments--we're all pulling for you :)

Julie,

It is incredibly frustrating when you're down to so few foods. I also found that I wanted to "do something" to at least know where I stood on allergies, etc. As you know, I called around to find an allergist in my area who would be open to testing for food allergies. (There were actually offices who told me they didn't test for them)

As it turned out, I tested negative to all foods tested. I was slightly allergic to cats and highly to dust mites.

I did the elimination diet, but I'm finding that as time goes by, I seem to be more sensitive to certain things (tomato) and less so to others (rice).

I also did the Enterolab gene test--I sent the swabs back yesterday. Now, that isn't going to help me with the food intolerances (I wouldn't think) but I will have more information. And more onfo to share with family in hopes that they will be tested.

I know you're torn about what to do, and I'm probably not a lot of help, but I wanted to share what I have done--let me know how you decide to proceed with this :)

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dlp252 Apprentice
dlp252
Posted
This is one of the tests I had done, has anyone else had it?

No, but sounds interesting!!

Just a drive by....

xoxo

Good luck at the appointment, can't wait to hear about it!

Anybody have any opinions as to if getting allergy testing is a good idea for me or a waste? I'm not sure finding out will be beneficial because I can't change how I eat. Some of the things I show up allergic to don't make me sick, while some of the things I'm suppose to be able to eat do in fact make me sick :blink: I am torn what to do......

I don't know. I've been tested two times for food allergies, the first time about 3 years ago (by skin scratch) and only showed slight reactions to 4 foods: Barley, canteloupe, white grapes and yellow squash. Out of those 4 I hardly ever ate barley or yellow squash and only ate canteloupe once in a while and white grapes only if they were an ingredient in something else. None of those foods would cause a big reaction in me (okay the Barley NOW might, lol). I was tested again a few weeks ago (again by skin scratch) and only showed a reaction to oats--something I hadn't eaten in almost a year.

This new clinic does food allergy testing too, by different methods, so I'm going to ask them if any of them deals more with intolerance and see what they say. I don't believe I have a true allergy to any food...I think mine are all intolerances of some sort.

I don't know if I'd spend a lot of money on the "allergy" testing if you can't change what you eat though...if it's something you can do for relatively little cost maybe...unless maybe just for peace of mind...knowing sometime WHAT is making you feel bad is good even if you can't change it.

Okay, I didn't help much. :unsure: Sorry.

miamia Rookie
miamia
Posted
Best of luck with your appt today Laura. I'm so happy you are feeling very hopeful, feeling hopeful for you! You will be in my thoughts :).

Eosinophilic disorders? What is that exactly? Must look it up.........

Anybody have any opinions as to if getting allergy testing is a good idea for me or a waste? I'm not sure finding out will be beneficial because I can't change how I eat. Some of the things I show up allergic to don't make me sick, while some of the things I'm suppose to be able to eat do in fact make me sick :blink: I am torn what to do......

I am wondering if I should at least do the celiac gene and etc. to start with.

Julie-

I have been wondering this same exact thing. I have had allergy tests done before but I have been wondering if Its worth getting another one done. I mean maybe I am consuming something that I ma very allergic to. I don't know I hate to waste money if I don't have to but if it could be helpful its worth it. I guess this is not helpful but I am in the boat with you!!!

Oh how is your hand?

Mtndog Collaborator
Mtndog
Posted

REALLY QUICK DRIVE BY:

GOOD LUCK LAURA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Good luck with the appt.s today. :)

Julie...I kind of feel like none of my food allergy/intolerance testing has ever really helped me out as far as....well...as far as anything. :rolleyes: I'm still the same after having everything done. Even with this last test telling me I'm reacting to almost everything....well yeah...I think we all knew this about 500 pages ago. :lol:

Even the stuff that showed up ok on the test....really isnt...so I'm just listening to my body anyway. For me....the food part of the Bioset was actually the least important to me at this point.

I think it could be helpful if you were eating something that was causing you problems and werent aware of it but if the intolerances are extensive and constantly changing....like with leaky gut...I dont know if the tests can really help. :unsure:

Ok....guess I wasnt much help either. :(

Donna, I think HN does intolerance testing with saliva. I was suppossed to take the test but I just never did it. I think it might be sitting in the back of my car somewhere. :ph34r:

Susan...YES...you can have my Triumph cards!! Yes, yes, yes, just promise...no more donut binges k?? ;)

I'll pm you later. :)

AndreaB Contributor
AndreaB
Posted

Laura,

Good luck today......will be waiting for an update.

Julie,

I wouldn't get IgE testing alone. My doctor tested for IgE/IgG. I'm only allergic to dairy, intolerant to everything else. I emailed enterolab about their tests and determining lifelong intolerances. They test the IgA and....well let me post her response.

Response: Dear Andrea, Thank you for your correspondence. The only way in which one can tell if an IgG intolerance is going to be for life is if the symptoms persist that long. IgG reactions (normal food allergies) can come and go, but IgA reactions (immunologic sensitivities mediated by a T cell reaction in the intestine) once triggered are for life, as far as research can tell. This is supported by the fact that the IgA antibodies do eventually decline once the offending food protein is eliminated from the diet, but when that food is reintroduced into the diet, the IgA antibodies will begin producing again. Our tests are actually ELISA tests as well, but we are testing for IgA antibodies instead of IgG. We do hope to be able to offer additional food intolerance testing in the future, but I do not yet have a target date for you. Please let me know if I can be of further assistance.

If you have the funds it may tell you if you have problems with some foods you're eating. Are you looking for info on foods you have been eating? I know you've been on a low histamine diet, are you looking to see if you actually test intolerant/allergic to some of those?

Donna,

Also looking for whatever updates you can post with your appointments.

I'll be back in a few.....

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I had a bit of a breakdown myself, just reflecting on a lot, wishing I had better health :( But today is a new day, trying to stay positive, onward and upward, and all that. Keep fighting.....

Julie...me too. I'm glad we are both recovered, dusting ourselves off and ready to keep on going. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
This is one of the tests I had done, has anyone else had it?

Rinne....I never heard of it. When will you be getting results back??

I fell a little behind....just read about your party. I'm sorry noone was supportive or "there" for you that night. :(

I dont know about you but the illness makes me more aware of how people treat each other.....makes me more sensitive to it as well. :(

dlp252 Apprentice
dlp252
Posted
Donna, I think HN does intolerance testing with saliva. I was suppossed to take the test but I just never did it. I think it might be sitting in the back of my car somewhere. :ph34r:

Better than the stool test one doctor gave me which I just threw in the garbage, lol. :lol: This was from the same doctor that ONLY TOOK my pulse and said I seemed fine on the day I went to see her for extreme dizzyness, nausea, chest pain, racing heart and extremly low blood pressure and near fainting incident. Forget why she gave it to me, and I've certainly done other tests, but for some reason I decided it was worthless to go through it with her, lol. :lol:

TheDave Newbie
TheDave
Posted

Susan,

Sorry for the excutiating pains a few nights ago... Hope you are all better now :D

Rinne,

You'll just have to invite all the Rachelvillians to the party next time, I'm sure we can all be good crashers... ;)

Laura,

Hope all goes well at you appt.

Donna,

That is a lot of action this week, let us know how the nutrion thing goes today!

Everyone else,

Hi! Hope everyone is ok....had to read 10 pages cuz I hadn't been here in like 2 days :rolleyes: Sorry if I'm missing anyone.

-Dave

CantEvenEatRice Enthusiast
CantEvenEatRice
Posted

Rachel, how did you get your Lyme diagnosis? Your symptoms sound the same as mine. I was treated 2years ago with 6 months of iv antibiotics. I stopped treatment due to a severe allergic reaction when they switched my meds to Clindamycin. I thought I felt a little better so I went ahead and got pregnant with my first child. I felt great during my pregnancy and while breastfeeding, but now I do not feel so good anymore. I am pretty much intolerant to ALL foods at this point, tired, muscle aches, etc. I thought my Lyme was taken care of, but now I am worried that I could have passed it to my son. He seems fine, but I could never get a definitive answer on what to do during my pregnancy. My doctor who treated my Lyme wanted me to take antibiotics during the whole pregnancy (I didn't), but my obgyn did not. I also read various things about whether it is safe or not to breastfeed (I did for 14 months). I was Lyme symptom free during my pregnancy and breastfeeding. Anyhow, now I am not sure where to go with treatment. I guess a part of me always questioned the Lyme diagnosis because I do not think I had really clear test results. I believe I only had 1 of the bands ( I think you need 5 of 10). I believe I had some Lyme show in a urine test as well. I think I only questioned it because I was nervous about taking antibiotics during pregnancy. Plus I was diagnosed with Celiac shortly before the Lyme and tought that the gluten was my main problem. I was convinced that if I had it, 6 months of iv antibiotics should have taken care it (but we all know that isn't always the case with chronic lyme). But it seems strange that I cannot get better on the gluten free diet. My doctor says you can diagnose Lyme by clinical symptoms if you cannot get clear blood results. I am just curious about others' experience with test results. Thanks!

AndreaB Contributor
AndreaB
Posted

Can't eat rice,

Rachel and Rinne have both been diagnosed with Lyme recently. I know they tested through Igenix labs, it's a matter of finding doctors that test through them.

I don't know anything about lyme except what has been shared here so I'll opt out of definitive answers. Multiple food sensitivities is one of the things lyme presents as.

Welcome to the thread (or Rachelville as it's affectionately called). Please join us more often if you are so inclined. This thread is about helping people that have more going on the gluten intolerance/celiac, brainstorming etc. People like me joined to offer support mainly.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel, how did you get your Lyme diagnosis?

I had originally suspected mercury as the main cause of my illness but Lyme was second in my mind. I got sick right after I had dental work so thats why I suspected the mercury. I couldnt get a Dr. to take me serious or test me for either of these things so I couldnt do much about it. I had read sometime last year that Lyme tests were mostly unreliable but kept seeing Igenix lab as being the most sensitive.

The Dr.s I was seeing since January couldnt find a cause for my illness so finally said it could be mercury and referred me to someone more knowledgeable. The new Dr. said Lyme can cause all of my symptoms so he wanted to test for that right away. He asked me about camping, bullseye rash, flu-like symptoms....stuff like that. I had all that but didnt know what it was...my bullseye was real small...like a dime or smaller. I just thought it was a spider bite but it took weeks to go away.

I had the flulike symptoms and bite 2 years before I got sick so never thought they could possibly be related in any way. Both my Dr. and a woman I saw last week said that initial symptoms can go away....sometimes for years....until something else further weakens the immune system. They said in my case the exposure to mercury that I had was probably the straw that broke the camels back. So now I am dealing with both....plus candida.

My Dr. only uses Igenix for Lyme testing so I felt good about that...I already knew they were the best lab. I had 2 tests through Igenix...one came back weak positive and the other was positive. I then had a third test....a more "alternative" type of test to confirm the diagnosis because my Dr. wanted be be extra thorough. That test detected Lyme as well.

happygirl Collaborator
happygirl
Posted

x

Judyin Philly Enthusiast
Judyin Philly
Posted
Hi all,

I am finally home (6pm)....long day. I ended up staying for blood work and a CT scan (to rule out tumors/growths).

Thank you SO much for all the warm wishes---yall are the sweetest. Like my big app't last week, my excursion to Johns Hopkins today has left me completely and utterly exhausted. I fell asleep in the long car ride home (once again, lucky to have my mom). I'll try and post later tonight or tomorrow night. It was a trying-but good-day....once again, will all make sense when I post the saga (or, as I like to lovingly refer to these long days of app'ts...my "sob story")

much love,

Laura

so glad your Home Laura

sounds like the through but exhausting day..can't wait to hear the results.

Thanks Mom for driving our girl home

judy :)

jerseyangel Proficient
jerseyangel
Posted

Glad you're home, Laura! Get some rest and post when you feel up to it :)

AndreaB Contributor
AndreaB
Posted

We'll wait for the update when you're resting and can post, Laura.

CarlaB Enthusiast
CarlaB
Posted

Looking forward to the update, Laura.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Laura,

We're all waiting to hear about it when your good and rested. ;)

Andrea,

I scheduled my appt....its tomorrow at 4. I'm not sure what she'll be able to do tomorrow....its only been a week since my first appt.

I was looking over some paperwork she had given me....its got a whole "plan" laid out. Dont know why I didnt notice it before. :ph34r: Its about 10 pages of scientificness! :D

I will post some of it later.

I'm such a mess from the events of the past week...OMG...total emotional wreck...biggest drama queen...and yes, I'm reacting to *everything*. SUCKS. :angry:

This hasnt happened in a long time....I dont know how I managed when I used to be like this every day....sooooo draining. I just wanna sleep and then maybe all the drama I've created will disappear. :ph34r:

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    • trents
      how much gluten do I need to eat before blood tests?

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      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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