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Omg...i Might Be On To Something

Rachel--24

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Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rhonda, I agree, you HAVE to be able to trust a doctor! That's why I'm hopping on an airplane to go see one!!

Carla,

I keep meaning to ask...when are you going to NY? I'm sure it was posted and I missed it. :(

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CarlaB Enthusiast
CarlaB
Posted
Carla,

I keep meaning to ask...when are you going to NY? I'm sure it was posted and I missed it. :(

Jan. 19th ... feels like it'll be next year!!! :lol:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Jan. 19th ... feels like it'll be next year!!! :lol:

:lol:

Yeah Carla...sheeeesh...I had no idea we'd all have to wait until next year! :P

AndreaB Contributor
AndreaB
Posted
Jan. 19th ... feels like it'll be next year!!! :lol:

Well it IS next year. :lol::lol:

Maybe you mean "feels like a lifetime from now"

Doesn't Rachel need to wait until March?

CarlaB Enthusiast
CarlaB
Posted
Well it IS next year. :lol::lol:

Maybe you mean "feels like a lifetime from now"

No, it was just a play on words. :)

happygirl Collaborator
happygirl
Posted

x

CarlaB Enthusiast
CarlaB
Posted

Laura, I do remember. This is great news!!

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AndreaB Contributor
AndreaB
Posted

Laura,

I'm so excited for you!!!!! :D

Please keep us posted. This sounds very promising. :D

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

Laura,

Great news! I also have a feeling that you are on the right path. :)

YAY....another big appt. to look forward to. :D

I have a feeling you will notice a big difference with this type of Dr....I certainly did. I'm telling you....Dr.'s that think "outside the box" have a MUCH better understanding of the kinds of things we deal with.....they dont stare at you like this :huh: when you describe your symptoms. They have experience with people who have such long lists of intolerances and they understand what types of things cause this.

Its soooo reassuring.

I'm looking forward to hearing about your appt. :)

Oh...I'm proud of you too....for keeping up with all the research and being so proactive in trying to get answers for yourself. I knew you were a fighter since your very first post here. ;)

miamia Rookie
miamia
Posted
Yeah...waiting sucks. <_< I have 2 1/2 more days of waiting.

Plus I'm waiting for your results, waiting for Julie to get tested, waiting for Carla's results (taking forever by the way), waiting to hear about Lind's test results, waiting for Donna to go to BioSET....waiting....waiting....waiting. <sigh>

Tomorrow I bring my "environment" to BioSET for testing. :D

I'm so curious about what your environment test will show- i think i'de be scared too do this- I'm not sure that I would want to know - I swear soon I'm gonna have to look into moving into a bubble

missusg Newbie
missusg
Posted

oh your story sounds so familiar to me. I was diagnosed with celiac in feb. 06 and I thougth "there my answer to my pain' I was so very excited.

I was so wrong. I have had constant pain and gurgling and gas and bloating and pressure and......I feel like poop.

So I went and had more testing done just last night and found out that I have an intolerance to almost everything that I eat which would include corn and potato.

I am somewhat just hanging on. I tell myself that it isn't going to be that bad but not being able to have corn is going to be harder than I suspected....it is in everything.

So I started my research and did find out that cornstarch can be replaced with arrowroot for cooking...okay thats not so bad but......oh it is going to be hard.

I really don't have anything useful to say except that it is reassuring that there are others out there like me.

this is my first time, tonight, posting any replies and reading

thankyou to everyone out there who share themselves.

oh your story sounds so familiar to me. I was diagnosed with celiac in feb. 06 and I thougth "there my answer to my pain' I was so very excited.

I was so wrong. I have had constant pain and gurgling and gas and bloating and pressure and......I feel like poop.

So I went and had more testing done just last night and found out that I have an intolerance to almost everything that I eat which would include corn and potato.

I am somewhat just hanging on. I tell myself that it isn't going to be that bad but not being able to have corn is going to be harder than I suspected....it is in everything.

So I started my research and did find out that cornstarch can be replaced with arrowroot for cooking...okay thats not so bad but......oh it is going to be hard.

I really don't have anything useful to say except that it is reassuring that there are others out there like me.

this is my first time, tonight, posting any replies and reading

thankyou to everyone out there who share themselves.

miamia Rookie
miamia
Posted
Hey ladies :) Happy Friday!

Rachel, thanks for the links to betterhealthguy. i hve actually been reading a lot of his stuff lately, esp about the food allergy issues. Very very interesting. i've been reading a lot on the lyme forums and have been impressed with his posts as well as wildcondor.

So, my big news is that I have a big app't on Wednesday! I am seeing Dr. Levin, the doctor that i had posted about earlier. I was referred to him by a Lyme patient, and was also referred to him by a well known LLMD in the baltimore area (I was corresponding with a patient of the b-more doctor's, and his patient asked who I should see in my area. He HIGHLY recommended him). I spoke to his office manager for about 45 min last night and she told me a lot about him. In fact, he used to work with Dr. Galland, the integrative medicine doc that I was originally going to see in NYC this fall (carla-remember our convos about him!), so I feel like I'm on the right path. He also specializes in food and food allergies/intolerances. She didn't even know that I was a Celiac and she mentioned gluten! Yes!!!!!!!! I told her about my struggles with docs not seeing beyond Celiac (bc I don't have the biopsy) and she said not to worry! I have a two hour app't on Wednesday!!!!!!! I feel like I can trust him. He even called me himself because his office manager was supposed to call me at a certain time and she couldn't---was out of the office (they are building a new office and moving)----and he called to ask what time would be good for her to try me. He was so nice! She also said he sees a max of 6 patients a day, so that he can spend adequate time with his patients. I feel so good about this!!!!!!

Laura-

this is good news!! So are you not gonna see Dr Galland? I thought you ahd mentioned comeing to NY to do that.

happygirl Collaborator
happygirl
Posted

x

AndreaB Contributor
AndreaB
Posted

Welcome missusg! :D

We bounce around from topic to topic in here in an effert to help others out.

If you have anything specific you'd like to ask, ask away.

Yes, corn is in everything. Simply V is intolerant to corn so she may be able to help you out quite a bit. You can do a member search for her. She does pop in once in awhile here but I haven't seen her here lately.

happygirl Collaborator
happygirl
Posted

x

miamia Rookie
miamia
Posted
thanks ladies :)

I thought I was a fighter with my first celiac diagnosis...it was a battle then but I knew something was wrong. I never thoguht I would be in THIS fight. I have been so encouraged by all of you....both direct encouragement and just from watching all of you in your quest for help.

I read all the time---reading peer-reviewed journal articles is now a hobby of mine ;)

thanks for all your links, rach. the patient that I have corresponded with says that Dr. L is a highly active member of ILADS, and he is close friends with Dr. Nick Harris, who runs/owns Igenex. I think thats a good sign. He's also had Lyme before.

I still have an appt with Dr. Garzon later in Dec...I'm holding onto it until I see how my one with Dr. L goes.

Laura what is the lyme doctors name you are going to see

happygirl Collaborator
happygirl
Posted

x

miamia Rookie
miamia
Posted
Carla and Susan, love your new avatars. I must say, I think we have a particularly good looking group in Rachelville ;)

M---no, I had cancelled with Dr. Galland once I started seeing my doc at Johns Hopkins. Then, found Dr. Garzon in DC (my later in Dec appt) ... then found Dr. L....so I hope that I have found comparable (or better) docs closer in the area. I think they all are kind of in the same field. How are you doing, sweetie?

By the way, add me to the list of those who are dying for everyone's results. I haven't even been tested yet and I'm excited for mine!!!!! ;)

Laura-

I'm ok thanks for asking I am in my thirs week of the yeast mediciene- which is the last week!! Yeah!! So then I am gonna go on these super probiotics to try to keep the little buggers gone. Mostly right now I am just impatient I want my results back and to figure out whats going on so I can plan my next step. I feel crippled by not knowing.

Are you feeling better after the gluttening? I hope so . I hope some of these new docs have some answers for you

Miamia

happygirl Collaborator
happygirl
Posted

Wow, this being the last week IS a great reason to celebrate! woo hoo! and yes, we can only hope that we keep those 'buggers' away ;). I am so impatient for your results, too. My fingers are crossed....we'll make this work. Its funny...not knowing is crippling, but on the other hand, sometimes the first part of knowing is crippling to me (thinking back to Celiac) .... it is so overwhelming, I felt like I didn't know where to turn and it was just so much. Then, as time progressed, I didn't feel as crippled and was so grateful for a diagnosis...but wow, those first few days etc were so overwhelming. That is one of the reasons why I'm so happy to be a part of this forum....that no matter what, we'll all get through this. :) xoxo

and, no, i'm still horribly sick from the gluten. This morning was pure h$LL. I went in late (had two big meetings, i felt like I had to go!) and then came home early and slept the afternoon/evening away.

but, the good news is, my job is so great and 1. they are so supportive and 2. I LOVE what I do!!!!!!

CarlaB Enthusiast
CarlaB
Posted

Welcome missusg!

Laura, Adam took that pic tonight. We live downtown and they had a community Christmas function. It got really cold today, so I wore my WARM coat! Rachel, you would need one of these to live here, it makes it almost bearable! We live on the other side of the block from Main St., so we just walked over there ... I didn't last long. It's a fun place to live, they're trying to revitalize downtown to get more businesses here. Fun being able to walk everywhere. We were so fortunate to get this house ... these historic houses NEVER go up for sale, I can't believe we got one!!

happygirl Collaborator
happygirl
Posted

x

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

I've been reading away on the Lyme board.....I just finally registered tonight. :)

Laura which board have you been reading LymeNET??

I'm having alot of anxiety about my co-infection test coming back negative and having to still dig deeper....and more testing. I'm not sure if I would want to start treatment for Lyme alone....and not co-infections. It seems like it would be pointless.

Laura.....back to the questions about *ahem* "relations" .....I found this post on the board tonight.

Doc told me that lyme was found in semen, but not in vaginal fluid. So women have a greater chance of catching it from their male partners.

I had read that it was isolated in semen....but thats all I've ever seen and I dont think they have absolute scientificness on this subject yet as far as if it can be transmitted. Many people say it can though.

If its not found in vaginal fluid....this would be a good sign....but I'm not sure why it would be found only in sperm?? :unsure:

Open Original Shared Link

Laura....I posted this one yesterday. Did you check out the symptom list?? Its the best I've seen.

CarlaB Enthusiast
CarlaB
Posted
....but I'm not sure why it would be found only in sperm?? :unsure:

So it can always be men's fault???? It's probably only in male ticks, too! :lol:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
So it can always be men's fault???? It's probably only in male ticks, too! :lol:

LMAO....oh yeah....DUH!! :lol::lol:

Tonight my friend said we should plan a trip to Disneyland.....how fun it would be. How depressing that I cant just go and do these things right now. :(

Do you guys think sometime next year I might be well enough to do something like this??

I'm gonna ask the Dr. on Monday what the prognosis is.

AndreaB Contributor
AndreaB
Posted

I would think you'd be able to go next year......but I'm not a doctor. :D

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

      By trents · Posted

      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).
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