Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Rachel--24 Collaborator
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. :(


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
CarlaB Enthusiast
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
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
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
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

x

CarlaB Enthusiast

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


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



Celiac.com Sponsor (A8-M):



AndreaB Contributor

Laura,

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

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

Rachel--24 Collaborator

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
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

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
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

x

AndreaB Contributor

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

x

miamia Rookie
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

x

miamia Rookie
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

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

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

x

Rachel--24 Collaborator

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
....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
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

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

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,003
    • Most Online (within 30 mins)
      7,748

    Janete
    Newest Member
    Janete
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.4k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Russ H
      I developed a heart arrhythmia and on several occasions had to wear a 24 hour Holter monitor. Among other things, I had premature atrial complexes (PACs) and occasional AFib. I was very fit at the time, running and cycling. This completely disappeared following my diagnosis and following a strict gluten free diet. I haven't had a single episode since, in 4 years.
    • trents
      Testing for celiac disease, whether blood antibody testing or biopsy procedure, will likely be invalidated when the gluten consumption has been discontinued ahead of the testing or the procedure for more than a couple of weeks or so. For the person with celiac disease, the consumption of gluten results in the production of specific antibodies that can be detected in the blood because the immune system is attacking the gluten as it comes in contact with the small bowel lining. The blood testing is designed to detect these antibodies. Over time, the inflammation wears down the villi that line the small bowel. The biopsy is designed to spot this damage to the lining. When gluten consumption is discontinued, these processes cease. Antibodies begin to disappear from the blood and the villi begins to rebuild. Many people begin to experiment with the gluten free diet before they seek testing and their doctors often neglect to check for this before ordering blood tests and biopsies.  If you want to be sure that you don't have celiac disease, you would need to endure a "gluten challenge" for a period of weeks. This would consist of resuming gluten consumption in the amount of at least 10g daily (the equivalent of about 4-6 slices of wheat bread) for at least two weeks and then get retested or re-biopsied. But regardless of whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity) the antidote is the same: total abstinence from gluten for life.
    • Bridget connors
      I can’t remember if I had started the gluten free diet or not. 
    • trents
      Welcome to the forum @Bridget connors! When you had the blood antibody testing done and the biopsy, had you already been restricting your gluten intake for a significant period of time, say weeks or months at least?
    • Bridget connors
      Hi my name is Bridget I was newly diagnosed with non celiac gluten sensitivity but I have a very severe reaction to gluten and was wondering if anyone else has this and was told they didn’t have celiac. My brother and his son have it and I think I do as well. I have horrible burning lips that started three years ago that turned into cracks sometimes in the corners of my lips and my lips swell and turn bright red all around the edge and burn and tingle. Then I started get sores on my tongue and inside of my lips. When there’s a bad flare of if I eat any sugar or citrus it’s like I’m burning my mouth and more sores appear. I had chronic diarrhea to the point of incontience sometimes and stomach pains nausea. Migraines then came horrible leg and hand feet cramping. Then joint pain. Sleeping problems vomiting and more recently very foul smelling gas. So I stopped eating all gluten and every symptom has gone away. If I accidentally eat gluten it comes back with a vengeance and more symptoms appear each time!!! It’s crazy it’s like the gluten is poisoning my body. This last exposer my ear was killing me and the lymph node behind my ear and my throat and a big canker on the side of my tongue. Anybody with any thoughts?? I’ve had biopsies and blood tests everything comes back normal I don’t get it. 
×
×
  • Create New...