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

AndreaB Contributor
Gosh--is anyone else as bored with me as I am :lol:

Not at all, now stop it! :P:lol:

I'd want answers too and I'm glad you are continuing to dig for them. To me there is something going on if you're still that sensitive, plus the pressure, anxiety etc.

How long have you been diagnosed now......2 years? Your gut should be much better. Have you tried probiotics. Thought about bioset? Wait a minute. What all did you kinesiologist (how do you spell that word? :ph34r: ) have to say? I know you mentioned vaccines was part of the problem. I wonder if you could find a good bioset person or even an ART person to try and nail some things down.

I'll be waiting for your report of your doctors appointment next week. Have you looked up LLMD's near you....just in case?


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
Rachel--24 Collaborator
I'm pretty tired (he's an hour away and it was a 2 1/2 hour appt so it took me like 5 hours total) but I feel much more optimistic about things then I did yesterday. :)

Bev...its so good to see that you're feeling alot better about things today!! It sounds like you'll start getting some answers finally. I'm really excited for you. :)

Glad to hear you were pretty informed going in. ;)

I've learned to always always know my stuff before seeing the Dr....that way you can really tell how knowledgeable the Dr. is. It really puts me at ease when the Dr. is familiar with everything...and has alot of experience.

I'm also really interested in how they'll look at your tissue for Lyme.

I would also mention your experience with your old apartment....the worsening of symptoms, vomiting, etc. I always kind of thought that might be due to mold. <_< If you have Lyme and other issues it could lead to that kind of sensitivity to mold.

I'll be waiting anxiously to see what they can figure out. :)

Rachel--24 Collaborator

I got my appt set up for Monday. I'll be having the CD57 done and liver/kidney tests.

Donna...we'll probably be getting our results back around the same time. :)

CarlaB Enthusiast
The perfect high heel is skinny and 2 1/2 inches approximately in height. It can be a sandal or a closed-toed pump. :)

I like 4 1/2 inch heels! You can generally tell how good/bad I feel based on whether I'm wearing heels or flats ... there is no in-between for me. Last Sunday I wore heels to Mass. :)

Rachel--24 Collaborator
It makes sense that there's something else possibly going on--or maybe I had a lot of damage from being undiagnosed for so long that this might just be it for me.

Either way, I'd like to know in case anything can be done.

Gosh--is anyone else as bored with me as I am :lol:

Patti.....heck no....I've never found you to be boring. :)

I also dont think this is just the way its gonna be for you...the body is capable of doing amazing things as far as healing itself. I would have to think that your ongoing symptoms are because something is getting in the way of that healing process.

Oh and I do still have that pressure/fullness in my head. I think its from candida because when I went on that strict candida diet a couple years ago...taking nystatin and other antifungals...the head stuff improved maybe 85% or more. :o

When I tested with Enterolab and mistakenly believed gluten was the only cause....I went back to normal foods...but gluten-free of course. Slowly within a couple weeks I noticed I wasnt having the same energy I'd had all summer....also my head got all full again...tongue got white again....brain got fuzzy again...etc. :(

I'm hoping to start getting this better under control again.

It was during that time that I was totally avoiding anything to feed candida that I felt best but also because of the improvement I was really really feeling it when I did anything to upset my system...usually caused by supplements. I could tell that something more than candida was going on....I was just way too sensitive to stuff. It seemed completely unnatural. <_<

tabasco32 Apprentice

I was just wondering how to keep calorie intake and weight on with so many restrictions? I need a 2,000 calorie diet and I am only eating about 700 to 900 calories a day. I am eating more now but I need more calories but don't know what to eat. I always feel bloated and constipated and I am afraid to eat. Any suggestiong? Any safe weight gainers I am desperate! I am now hypoglecimic. When I eat starches and stuff I get depressed and sleepy in seconds. But I need this for some weight! So confused.

jerseyangel Proficient
How long have you been diagnosed now......2 years? Your gut should be much better.

That's what I think, too. I did do a search for LLMD's here and there are several in North Jersey (we're in central Jersey, so not too awful far)--just in case it gets to that. I don't see the Kinesiologist anymore, as I didn't feel the corrections were helping any. He did get my sensitivities right--although I found it necessary to do an elimination diet myself just to make it clear in my mind.

I guess I'm the type that deals in facts and I need proof--and to be able to understand all the why's and everything.

I also dont think this is just the way its gonna be for you...the body is capable of doing amazing things as far as healing itself. I would have to think that your ongoing symptoms are because something is getting in the way of that healing process.

Yep--but what the heck is it? It's interesting about the candida--I do eat sugar, and more than I should at that. It's my one dietary vice. I wouldn't be at all surprised if that was a big factor in this.

I've been getting the head pressure more again lately, and I always think of you when it happens--anyway thank both of you for helping me brainstorm some more about this. Hopefully I'll have more ideas after next Friday.


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



Celiac.com Sponsor (A8-M):



morganb Newbie

Thank you for all the birthdya wishes :D And everyone was right... I loved the purse :rolleyes:

It's summer now! Let's see if I'm on here like I was last summer...it might just take me a while to catch up on everything...

CarlaB Enthusiast

Patti, my LLMD is about 2 hours north of NYC. He's the president elect of ILADS, and I highly recommend him!! I like that he addresses all angles -- metals, candida, celiac (he tests everyone unless they've already been tested), supplements, detox, etc.

I don't know if he's closer or farther from you than the others in NJ.

dlp252 Apprentice

I am having so much trouble with this website today, lol. Now it won't let me go back to previous pages, so I'm sorry if I'm replying hodgepodge to stuff.

Patti - we could NEVER be bored with you. I agree with everyone else that there has to be something else going on and I think if you find a good LLMD they would explore a lot of things, not just lyme. That's what mine (also Rachel's) is doing and it really is a relief. I hope you feel better soon!

Morgan - glad you liked your present. I'm turning into quite the purse fanatic, lol.

dlp252 Apprentice

<----- me, laying in a pile of leaves in VERMONT...gee wonder where I could have picked up a tick, lol. :lol:

CarlaB Enthusiast
<----- me, laying in a pile of leaves in VERMONT...gee wonder where I could have picked up a tick, lol. :lol:

:lol::lol::lol: cute picture

It's softball season ... I'm practically afraid to walk in the grass ... Adam and I go on long walks ... I'm afraid to walk under trees -- I think I need to wear a hat. I'm SOOO glad we don't live in the country anymore, I was already afraid of most of the property due to poison oak, which goes systemic with me ... can you imagine now with the ticks?

Mtndog Collaborator
<----- me, laying in a pile of leaves in VERMONT...gee wonder where I could have picked up a tick, lol. :lol:

OMG you are just like me!!!!!!!!!!!!!!!!!!!!!!!!!

Patti-Never mistake gentle and kind for boring!!!!!!!!!!!!!!!!!!!!!!!!!!!!1

AndreaB Contributor
It's summer now! Let's see if I'm on here like I was last summer...it might just take me a while to catch up on everything...

It'll be nice to see you more again. :)

<----- me, laying in a pile of leaves in VERMONT...gee wonder where I could have picked up a tick, lol. :lol:

You never know. :ph34r::P

Rachel--24 Collaborator

Donna...I was wondering if maybe you're feeling worse because of all the B vitamins?? :unsure:

I dont know....but if you're even half as sensitive to yeast and molds as I am you might not do well with them. I know that if I attempted taking B-vitamins I'd go downhill fairly quickly. The B-vitamins are from yeast...its usually recommended people who are dealing with Candida should avoid them. I got really sick from B-vitamins. :(

I havent taken them in more than 2 years.

I dont know how long you've been on them but just thought I'd suggest it. I know we've discussed it before...but just in case you forgot. ;)

NoGluGirl Contributor

Dear Carla,

I could never wear heels that high! :o I would fall flat on my face! My limit is three inches for high heels. You would like the shoes in Frederick's of Hollywood's catalog. They have some beautiful shoes, but most of them are too high for me!

Dear Patti,

We could never get bored with you! ;) We love you! Don't worry, there will always be a place in Rachelville for you! In fact, I do not think we would let you leave! You have no choice but to stay put! :P

Dear Morgan,

It is so nice to meet you! I am glad you had a great birthday. That purse is awesome! You should have fun with that! We all look forward to seeing you more on the thread!

Dear Everybody,

Well, I had another fight with my parents, big shock, huh? Naturally, it was about me getting a job and how expensive the testing for Lyme and Celiac is. :angry: I am so tired of this. I was sick again tonight. I have a feeling it was the potato chips. Too much fat makes me as sick as gluten. :( Incidentally, the dog got to go to the groomer's today. It is crap he gets to go to the salon but I don't! WTH?

Sincerely,

NoGluGirl

miamia Rookie
Andrea--At this point, I just don't know.

I have to be extremely careful with my diet or I get sick. I get nausea, D, cramping, my anxiety kicks up, I get dead tired, also that head fullness/pressure that I think Rachel gets--or used to get....I hate going out except for very familiar places.

And I don't mean with just gluten, but with all the other stuff.

I take very good care of myself, my diet is very clean, I get enough rest, good water--I don't work, so I don't have the stress of having to be someplace every day.

It makes sense that there's something else possibly going on--or maybe I had a lot of damage from being undiagnosed for so long that this might just be it for me.

Either way, I'd like to know in case anything can be done.

Gosh--is anyone else as bored with me as I am :lol:

We could never be bored with you!!!!! but I do know how you feel. Lately I feel like I go in circles- with different diagnoses - trying different things- supplements, meds foods, tests, doctors and nothing changes - I end up in the same place. Its is frustrating and yes BORING!! I never thought the most exciting thing in my life would be that I made pizza and didn''t get really sick yet that is the most exciting thing thats happened to me in months- yes not exactly an exciting life.

CarlaB Enthusiast
You would like the shoes in Frederick's of Hollywood's catalog.

Thanks for the recommendation, but I don't think so ... it's bad enough my adolescent boys see Victoria's Secret commercials in TV ... I don't need to start getting the Frederick's catologue!! :o:lol:

BTW, it's a little past 8, I'm dressed and ready for softball/baseball driving ... I CAN get up if I have to! I actually don't feel too bad, but I still think it's better to get the rest so I can heal faster.

miamia Rookie
I like 4 1/2 inch heels! You can generally tell how good/bad I feel based on whether I'm wearing heels or flats ... there is no in-between for me. Last Sunday I wore heels to Mass. :)

I have never been a heel girl I am all about comfort - jeans and sneakers!!( summer sneakers change to flip flops) although now I am so thin its mostly sweat pants and sneakers- no jeans fit me.

miamia Rookie
<----- me, laying in a pile of leaves in VERMONT...gee wonder where I could have picked up a tick, lol. :lol:

Donna-

I love this pic. I know you think you can work and so you should not necessarily go on disability- but sleep is such a crucial part of healing I think you owe it to yourself to take some time and really nurse your self and see if it can help to make a difference. Maybe rest and relaxation is a big piece of what you need to get better!!

jerseyangel Proficient

Donna,

Your leaf pic brings back some memories...my friends in the neighborhood and I used to make leaf houses (we'd rake the leaves into "rooms" and make huge "mansions"--it all looked like a gigantic blueprint on the ground.) We'd play for literally hours on end, imagining various scenerios. Fun times :D

Mia,

Yep, I'm right there with you! My idea of a good meal anymore is one that dosen't make me sick after :angry: When it's something like pizza--that's a real bonus :lol: I did make a pretty good pizza the other night--homemade crust, no cheese :( , but sauce and veggies. Snuck some Hormel Pepperoni on, and it was fine. :rolleyes:

Carla,

Have fun today! Thanks for the doctor recommendation--I will most definately keep that in mind ;)

To all--Thanks for the sweet words! You have always been so supportive, and I really do feel welcome and safe here. I just added the "boring" because there I was again, going on about the same old stuff--and I really just had to laugh! :lol: Beats than the alternative ;)

Oh--high heels--I used to wear them once upon a time to work--for sometimes 12 hours at a time! :o That would kill me now--I stick with my Birkenstocks :P My piggies are spoiled :D

dlp252 Apprentice

Okay, so it's not ALL previous pages I can't get to it's just 1012...what did you guys talk about on page 1012 that no one wants me to see. :lol::P:lol: I apologize if there's something there I need to respond to. :P

Donna...I was wondering if maybe you're feeling worse because of all the B vitamins??

I dont know....but if you're even half as sensitive to yeast and molds as I am you might not do well with them. I know that if I attempted taking B-vitamins I'd go downhill fairly quickly. The B-vitamins are from yeast...its usually recommended people who are dealing with Candida should avoid them. I got really sick from B-vitamins.

I havent taken them in more than 2 years.

I dont know how long you've been on them but just thought I'd suggest it. I know we've discussed it before...but just in case you forgot.

Yeah, the Bs were the first thing I suspected when I got the bad D only I'd been taking them for a week or two before the D happened. Anna tested them and they tested SOOOOO good that she said my body was really wanting them.

All previous attempts at B vitamins have not gone well, but these seemed to be okay...one is a liquid and one is a sublingual neither of which I'd tried before. I can take some mutli vitamins with Bs in them, but this was among the first time I've tried just B supplements by themselves.

I DID buy some B12 at Whole Foods a few months ago, but those didn't agree with me at all.

I don't know, maybe these just took a while for my body to react to. They also tested well at ART, but as we've seen with you, just because they test well doesn't mean our bodies won't react to them. That is just frustrating, lol. :lol:

I could never wear heels that high! I would fall flat on my face! My limit is three inches for high heels. You would like the shoes in Frederick's of Hollywood's catalog. They have some beautiful shoes, but most of them are too high for me!

The shoes I bought two weeks ago have about a 3-1/2 inch heel I think, and at least a 1/2-3/4 inch platform. I have really just taken a liking to platform shoes lately. :P However, that is saved for Sundays only...normally you'll find me in crop pants and my comfy slides or jeans and tennies. :P

but I do know how you feel. Lately I feel like I go in circles- with different diagnoses - trying different things- supplements, meds foods, tests, doctors and nothing changes - I end up in the same place. Its is frustrating and yes BORING!!

Yep, I know this too, lol. Yesterday I was sitting at my desk with a magnifying glass looking at my arms. My co-worker asked what the heck I was doing. Well, I had read on a thread at lymenet or here about someone having these little pin sized blood spots on their skin, and I've got them. I did a search and found a good picture on wikipedia with a good write up and it scared me, lol. Then I started thinking that what they wrote about those stupid spots sounded like it could be responsible for some of what's going on with me now.... I've got to stop researching stuff. :lol: Still it's time for a visit to the dermatologist anyway so I may have them check just to make sure it's not the serious kind, and I may show them to Dr. S too. :P

BTW, it's a little past 8, I'm dressed and ready for softball/baseball driving ... I CAN get up if I have to! I actually don't feel too bad, but I still think it's better to get the rest so I can heal faster.

I agree!

Donna-

I love this pic. I know you think you can work and so you should not necessarily go on disability- but sleep is such a crucial part of healing I think you owe it to yourself to take some time and really nurse your self and see if it can help to make a difference. Maybe rest and relaxation is a big piece of what you need to get better!!

I finally got a decent night sleep last night. Went to bed at 9:00 and while it took a little longer than normal to fall asleep (not usually my problem) I slept all the way through until 3:00. Then I think I actually dozed off again until around 5! I am still exhausted, but at least I'm not as sleepy, lol. :lol:

Your leaf pic brings back some memories...my friends in the neighborhood and I used to make leaf houses (we'd rake the leaves into "rooms" and make huge "mansions"--it all looked like a gigantic blueprint on the ground.) We'd play for literally hours on end, imagining various scenerios. Fun times :D

Ha, my uncle and I used to build forts. He's only 1 year older than I am...I'll be posting a picture tomorrow of him and I as babies. In California, we didn't have so many leaves, lol.

CarlaB Enthusiast

Donna, love the new picture.

I'm like the rest of you ... on normal days it's comfy shoes ... I was just looking at my Memphistos and realized, I really need a new pair, these are not going to hold up for a fourth summer. But, when Adam and I go out, or on Sunday, it's high heels. I'm also a Born fan ... just bought two pairs a couple weeks ago when I had my shopping spree. :ph34r: I needed a black pair AND a brown pair! :lol:

The new medicines are kicking my ___. They must be getting to the babs because my heart and breathing are causing me difficulty.

Well, off to the next game .... the kids are actually there already, they are playing at two different ball parks so I am just stopping at home to drop off a kid and go back to the other park. Sun and fresh air is probably good for me.

Oh, Donna, you can't get to 1012 because we locked you out ... we were talking about you and didn't want you to know what we were saying!! :lol::lol:

jerseyangel Proficient

Sh-h-h Carla--you wern't supposed to say anything about that :ph34r::lol:

You know I'm just kidding, Donna :D

Now, I'm going to see if I can get to page 1012--maybe it's like a Twilight Zone episode and everything on that page never really happened.... :unsure: ,..or happened to someone else in a parallel universe. :o

CarlaB Enthusiast
Arggg...haven't been able to get into this website for most of the day, lol. :P

Thanks dear one! I'm almost at the point where I'd consider ambien or lunesta. Over the counter stuff doesn't do anything at all, and stuff like benedryl just keeps me MORE awake, lol. If the natural stuff I'm taking isn't working I might as well just cut it all out. Years ago, one of my co-workers gave me one of her sleeping pills...I think it was ambien--I cut it in half and took one half and that seemed to work okay back then. We'll see what the lyme guy says.

If I had more time off available I'd use that for a few weeks, but I've been so sick over the last 2 years that I've got virtually none left. I get SIX weeks a year!!! It's all but gone. I have about 7 days left but I'm afraid to use it, lol.

Hum, I've been getting lots of headaches lately too. I used to NEVER get headaches.

That's what I was afraid of. :(

I do believe it's official now. :P

Ditto and ditto.

Donna, this post of yours was on page 1012 ... it's very odd you can't get there.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,185
    • Most Online (within 30 mins)
      7,748

    ksawyer
    Newest Member
    ksawyer
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • WednesdayAddams13
      Hello,   I contacted the makers of Alpine Original Spiced Cider Drink Mix and they sent me this email.....   Subject: [EXTERNAL] Fw: Ref. ID:1335211 Alpine Original Spiced Cider Drink Mix.               On Friday, December 6, 2024, 1:04 PM, Consumer <baking@continentalmills.com> wrote: December 06, 2024   Dear Janie, Thank you for taking the time to contact us regarding our Alpine Original Spiced Cider Drink Mix. We appreciate your interest and are happy to provide you with additional information. This product does not contain gluten. However, it is not manufactured in a gluten free facility. If I can be of further help, please contact me at 1 (800) 457-7744, weekdays 7:00 a.m. to 4:00 p.m. (PT), or visit www.alpinecider.com and select "Contact Us." Sincerely, Kristin Kristin Consumer Relations Specialist Ref # 1335211   I hope this helps everyone.  I am currently looking for a spiced hot apple cider drink and have yet to find one that is not made in a plant that manufactures other gluten products.  It's so frustrating. 
    • trents
      @Rogol72, dermatitis herpetiformis occurs in a minority of celiac patients and if the OP hasn't developed it yet I doubt it will show up in the future. I think it unwise to use a scare tactic that probably won't materialize in the OP's experience. It has a good chance of backfiring and having the opposite effect.
    • Rogol72
      Hi @trents, You're correct. The OP mentioned fatigue and vitamin deficiencies as the only symptoms at the time of diagnosis. Since the family are not taking him/her seriously and find them to be too fussy, I suggested showing them pictures of dermatitis herpetiformis as one of the consequences of not taking the gluten-free diet seriously ... would make life easier for him/her, and the family might begin to take his/her strict gluten-free diet more seriously. A picture says a thousand words and the shock factor of dermatitis herpetiformis blisters might have the desired effect. The OP did say ... "How do you deal with people close to you who just refuse to understand? Are there any resources anyone could recommend for families that are short and easy to read?".  @sillyyak52, It might also help mentioning to your family that Coeliac Disease is genetic and runs in families. Any one of them could develop it in the future if they have the HLA DQ 2.5 gene. Here's a Mayo Clinic study calling for screening of family members of Coeliacs ... https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-celiac-disease-screening-for-family-members/ https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-study-calls-for-screening-of-family-members-of-celiac-disease-patients/ I got glutened a few months ago because I missed the may contains statement on a tub of red pesto. It was my own fault but it happens.
    • peg
      Thank you, Scott!  This is just what I needed.  Appreciate your site very much and all of your time and energy that goes into it! Kind Regards, Peg
    • Hopeful1950
      Oh yes.  I would never recommend taking it for an extended period of time.  When 70% of my body was covered in blistering itchy sores, an amazing doctor prescribed it diagnostically because I was unwilling to do a gluten challenge after already going strictly gluten-free in desperation after 10 years of suffering and being poo pooed by dermatologist after dermatologist. The fact that it stopped the itch and mostly cleared the rash after about 2 months was diagnostic for him.  I stopped it and have remained strictly gluten-free with very few flares since that time (over 10 years ago).  So the fact that it cleared the rash was diagnostic for me.     
×
×
  • Create New...