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Omg...i Might Be On To Something


Rachel--24

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Green12 Enthusiast
OK....I have a question. i saw my celiac GI yesterday (she's awesome!). She prescribed Miralax as i have been goiing up to 10 days at a time without going. Does anyone else take this for chronic constipation?

I'm confused. :blink: My whole life I was ALWAYS constipated, then I became intolerant tpo gluten and was in the bathroom like ten times a day. then I went gluten free and was realtively normal. Then this summer, I had an emergency colonoscopy because I had such bad diarrhea and now I'm back to feeling like my butt is a Ziploc that can't unzip.

I'm not happy about taking another drug but I eat tons of veggies, choose high fiber gluten-products when I do eat processed food and drink the equivalent of Niagara falls everyday. She said it could be the combination of the meds I'm on, my body adjusting to moving (by not moving :P ). Anyone have thoughts on what gives? Today I ate zucchini, corn, tomatoes and tonight I'm having carrots and onions.

I never win corn races. :(:P

Bev, I went back (scary :o ) to find your question :lol:

I have always struggled with C, my whole life as well, but I haven't taken any meds for it. I haven't heard of the drug you mention here so I don't know anything about it. Maybe the others do?

I know what you mean about not wanting to take any more meds. I think there might be something to all the stress you have been under, the meds, everything your body has been through the last year, so many factors.

I know for me and my C, it doesn't matter if I am eating lots of fiber and staying more than hydrated, it just wont budge :lol: It's frustrating.

Have you checked on your magnesium levels? I supplemented with some magnesium at times of major C and that seemed to help.


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happygirl Collaborator

x

Judyin Philly Enthusiast
judy,

I think you summed it up perfectly. Yes, I am on permanent spin cycle and can't get out.

love,

Laura

thought so..I get like that sometimes and it's horrid isn't it.

judy

also just did a new thread on evie..went into the canning thread and saw her daughter got her on celiac.com so maybe they will find it if evie's in the hospital.

hope she doesn't kill me..but the poor dear, i'm just so worried about her.

judy

Green12 Enthusiast

Laura, I think many of us can relate to feeling so overwhelmed by what is going on with our bodies, and trying to find answers, and needing help and not getting it- so I just wanted to say you are not alone on that- thanks so much for sharing :) I think all of these frustrations you are having are quite normal when it comes to having an illness that seems to fall outside of the box of main stream medicine, or one that they just don't want to acknowledge or deal with.....and you aren't crazy! I'm so glad you made that relevation for yourself. So that is a good thing, if there is anything good in all of this.

The profoundness flows so much easier and flawlessly from the others here :lol: , but all I have to add is keep listening to your gut and your body and go where it is leading you on your path to get well, and be fierce!

I hope today is a better day for you :)

Judy, thanks so much for putting the word out on Evie. I hope we hear something soon.

Hi Carla! I have to say I am so happy for you, you sound like you have so much energy and are feeling great, what a total turn around from just a few weeks ago. Give my best to Morgan :)

rinne, I am so glad you enjoyed your sauna experience :) If you continue with it I think it will be another good addition to your healing program.

Susan, I was so excited to hear some fabulous story about last night, I am living vicariously through you all :lol: Seriously, that was it?? So you stewed over this guy for nothing??? Isn't that how it always seem to go.... :lol: Oh well, I'm glad you eneded up going and getting out and enjoying the evening.

Donna, I also like your picture. Always your smiling face greeting us here in the omg thread :D

Susie, I love that picture of Annie too :lol:

Hope everyone is enjoying their weekend :)

diamondheart Newbie
I think because of the fact that this kept happening and because it felt like I wasnt doing it all on my own....like I was being carried through those worst times...because of that I always knew I would get an answer and that one day I would get better....because it was meant to be that way. I still feel that way. My struggles arent over but I'm still not alone....so I know I'll get better. :)

Isn't it a beautiful thing when you realize that everything is happening just perfectly even though it seems so messed up at the time? When you feel the Universe is holding and guiding you, it's very touching. The biggest lesson for me in dealing with our inadequate medical system is to not give my power over to a doctor. I've learned, as I'm sure many of you have, that you have to become your own doctor then find a doctor who can help fill in the blanks for you! Actually, I have a whole team of health care practitioners. It's expensive, but it seems to be the only way to find healing these days. So, one of the silver linings of all this was coming into my own power and trusting it.

I don't know much about NAET treatments, but my other acu thought Dr. F's Bioset was more like that. I'm pretty ignorant :ph34r: about either, so any light shed on these are helpful. I'm kinda putting my faith in this acu, Dr. F, since the herbs he gave me seemed to have cleared up my bacterial dysbiosis. He was pretty honest about the efficacy of the treatment and I didn't feel like he was trying to sell me anything.

Laura, I hope you can find some peace soon. My troubles aren't as bad as yours, but I know I felt like I was going crazy this summer trying to figure out what was causing my digestive woes. I decided to just go down the list, and start testing things and eliminating them. I'm not caught up on your test results, so I don't have much to offer but a virtual (((hug))).

Claire

Rachel--24 Collaborator
Isn't it a beautiful thing when you realize that everything is happening just perfectly even though it seems so messed up at the time? When you feel the Universe is holding and guiding you, it's very touching.

Yup...maybe things like this have happened before in my life but if it ever did....I never noticed. I'm thinking this is my first real experience with something like this. I actually wasnt afraid when I thought I was dying....I was wanting it to happen because I was tired. I was giving up....but then even though I wasnt getting immediate answers I was getting guidance. It made me realize if I just waited to die it proably wasnt gonna happen...it wasnt my time yet. I was suppossed to figure this thing out and get healthy again...the signs were leading me in that direction. I'll never be the same person I was before I got sick....and thats a really good thing. :)

The biggest lesson for me in dealing with our inadequate medical system is to not give my power over to a doctor. I've learned, as I'm sure many of you have, that you have to become your own doctor then find a doctor who can help fill in the blanks for you! Actually, I have a whole team of health care practitioners. It's expensive, but it seems to be the only way to find healing these days. So, one of the silver linings of all this was coming into my own power and trusting it.

Well said Claire,

I'm just starting to build my "team".....I agree about it being expensive but for me its a necessity. I've done all I can do for myself without the help of doctors but ultimately the blanks needed to be filled in....it was just a matter of finding the right Dr. Now that the puzzle is coming together I need a good team to put together the right treatment plan for me. In the beginning of my illness I was leaving everything up to the Dr.'s and just being a "patient." This was a huge mistake.

Now I am in charge....the doctors work for me...if they dont seem like they're on the same page as me....I will walk away and find someone else. If what they're telling me doesnt seem "right" to me....I will walk away and find someone else. I feel like I've come into my own power and I'm trusting it. You said it perfectly....it is a silver lining in all of this. :)

Rachel--24 Collaborator
I am not lost, but I need someone to help me out with the directions....I never thought that would be such a hard thing to get from an MD.

Thats exactly how I felt....except for the part about not being lost....I had actually never felt more lost in my life. I think thats where most of my despair came from. Those times that I was giving up and thinking I couldnt hold on....it was because I had nothing to hold on to. I was LOST.

I found it was utterly impossible for me to get direction or even an understanding of the magnitude of my illness from any of the mainstream Dr.'s I saw. They were just oblivious....in every sense of the word. Every Dr. I've seen outside of the mainstream has had a complete understanding of my symptoms....even if they werent able to determine the cause. It makes all the difference when the person you're speaking to isnt looking at you like you're from another planet...or just nodding their head *pretending* to be listening or understanding....but you just know inside that they have no clue what you are saying to them. Its a sinking feeling that I experienced over and over again.

These other Dr.'s have understood....I never get those "looks"....or a feeling that they believe I'm some kind of hypochondriach nutcase. Its very comforting to me to no longer have to waste so much energy trying to convince Dr.'s that I'm sick.....that what I'm going through is very real.

My Dr. can sit there and explain my life to me....the way I live everyday....the way my emotions can go up and down in the blink of an eye....how by the time I leave my appt. I'll have forgotten much of what he's said. He can sit there and explain it to me and its amazing to me that he *knows* what a day in my life is like. He just knows without my having to tell him all about it. The only way he can know how I live and function in such detail is that he's familiar with it. He's obviously treated people like me and he knows that I'm very sick even though its not visible on the outside. I believe this is why he was able to diagnose me so quickly...he's familiar with it.

When we cant get direction from a Dr.....its clearly not a good sign. To me it says that they have no experience with the symptoms. They dont know where to begin. If we are having to give them direction.....something is really wrong. This is what I was doing with the mainstream MD's....I was directing them...I was ordering the tests...they were just filling out the paper. Not good at all.

I'm thinking that with alot of these new illnesses that are becoming more and more prevelant (Fibro, CFS, MCS, environmental illness, escalating food intolerances, etc) the mainstream Dr.'s are behind.....they dont know anything about how to treat these illnesses effectively....they dont recognize the symptoms. Its not in their textbooks and there is no research going into these symptoms of disease. They can only provide what they know....which is how to presrcibe drugs to alleviate pain or as I tend to say "mask symptoms".

I believe the alternative Dr.'s are gaining ground with these newer illnesses....mainly because they are the ones who are researching. They are the ones acknowledging that there are underlying factors for these conditions. I think in the future we will see a big shift...in that more and more people will be turning away from the mainstream treatment for their chronic illnesses. All mainstream has to offer right now are drugs...no answers...no cures...no real treatment. I think the best Dr.'s are the ones who are MD's with medical backgrounds but who have opened their eyes to the world of alternative medicine and chronic illness. These Dr.'s have the most to offer because they have realized that mainstream is failing to diagnose and treat patients effectively. They have opened their eyes and they have incorporated their knowledge of both mainstream and alternative medicine to best serve their patient.

I'm still very disgusted with all I've experienced at the hands of mainstream medicine...I used to think I was an isolated case....until I started visiting the message boards and found it be a reoccurring theme. I dont think positive changes are going to be made anytime soon....unfortunately for us.

There is a woman who works with my mom...she is very ill. My mom says she walks as if shes in constant pain....which she is. She doesnt know whats wrong with her. She goes Kaiser (my old HMO)...my mom has told her to get out....its what I had to do in order to get answers...they will not ever be able to help this woman. My mom told her about Lyme....told her she should see different Dr.'s....she cannot because she cant afford to. Its so sad to me because this is the health care that we are offered through insurance....and its soooo unbelieveably inadequate...that ultimately we have to pay out of pocket to get well. Those who cannot afford to do so cannot get better...I dont think its fair at all. :angry:


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AndreaB Contributor
I think the best Dr.'s are the ones who are MD's with medical backgrounds but who have opened their eyes to the world of alternative medicine and chronic illness. These Dr.'s have the most to offer because they have realized that mainstream is failing to diagnose and treat patients effectively. They have opened their eyes and they have incorporated their knowledge of both mainstream and alternative medicine to best serve their patient.

Here, Here. I couldn't agree more.

I have opinions I'd like to collect.

My daughter inparticular really wants to go see my dad. My oldest son says he does. I wouln't mind Hubby being there. My dad doesn't have the energy to deal with noisy, rambunctious kids. He did voice his concerns about the dog and their possible treatment of him. He's a little guy (chihuahua), very friendly, thinks he's people. Seth will be a problem with the dog no matter what due to his age. My dad is not comfortable at all with young kids (makes me wonder how he dealt with me and my brother :blink: ).

In your guys's opinion would it be better to just go myself (with Seth). The kids don't have a real strong relationship with their grandpa. They only see him briefly 2x a year of which now would normally be one of those times.

I have mixed feeling about it. I want them to see their grandpa but don't want to put him in a situation with undue stress.....I'm wouldn't think it would be beneficial to his health.

Thoughts?

Its so sad to me because this is the health care that we are offered through insurance....and its soooo unbelieveably inadequate...that ultimately we have to pay out of pocket to get well. Those who cannot afford to do so cannot get better...I dont think its fair at all. :angry:

That is maddening to me too. If we didn't have my stepsons to provide insurance for I don't know if we would have mainline insurance. The only positive is if you need to be hospitalized for some reason, or need major surgery. Look at is as car insurance. We will see my new doctor as much as possible although he may be getting out of that line of practice. He's older too.

Fiddle-Faddle Community Regular

Would your dad feel a little less stressed if you could reassure him that they just want to come quietly in for a few minutes to bring him (a picture they drew) (some pretty flowers) (a Teddy Bear) (a soft blanket) (a video of hi favorite sports team) or something like that, and then your husband could take them to a playground while you sit with your dad for a bit?

rinne Apprentice

My six year old nephew, rambunctious generally, went and stood quietly beside his great-grandmother and held her hand. I don't know that we really know what we or children will do when faced with death. Trust yourself Andrea, what do you really feel?

DingoGirl Enthusiast

Andrea.....I am thinking back to the time my own father died of colon cancer. He had been sick for a couple of years.....and you know, the chemotherapy itself nearly killed him a couple of times - he had to be hospitalized for that and in the end weighed about 120 pounds. My oldest niece Kelly was five, and she saw her grandfather about once a week, probably - the second oldest niece was two. Kelly asked so many questions at the time of my dad's death, she didn't go to the funeral, but after he died, she asked everything about where he was, would she see him again some day, who God was.....very profound issues and she was such a sensitive, thoughtful little girl. I had her make a drawing on a huge sheet of paper of where she thought grandpa was.....I have kept it and just gave it to her when she moved back to town a couple of months ago. My dad was a much more doting grandfather than he ever had been as a father, and these girls loved him.....but now, Kelly doesn't even remember him at all.

I kind of think that since they don't know their grandfather well, it won't have a huge effect on them since kids of that age don't really understand death (and this coming from someone who's never HAD any - shoot just ignore all my drivel :huh: ).....but who knows. I don't think there is really a wrong answer in this situation Andrea - taking them or not taking them would both be acceptable, just decide what is most comfortable for all involved......

So my niece and her bf called and they want me to go to that silly pub again. :lol: I would go, if I could go in my pj's. :lol::lol::lol: It turned cold overnight and I am freezing!

Judy.....thank you for searching for Evie.....oh I wish we knew something.....each of us should make sure someone has our phone numer, for times like these..... :(

dlp252 Apprentice
Donna, I also love your picture. It makes me feel like I know you because it just seems to be such a "real" picture of who you are. Ok, tooth girl---I had another filling come out during the night. This is now three in the past week. What the heck? I don't know if I posted this earlier, but my mom wondered if because of my malnutrition/dehydration recently, that my teeth are just shrinking just enough and then its releasing it bc it isn't fitting anymore.

Ha, I like "Tooth Girl", lol. Donna = :D Hum, not sure what to say about the fillings falling out...I think the dentist I'm seeing now said the fillings expand, so not sure what's going on in your case. I would think the malnutrition would affect the whole tooth, but I just don't know. Maybe I'll ask my dentist on Wednesday if you haven't found any info by then.

Yes, my directions said to eat no more than one a day, and never alone. My mineral levels indicated too much sugar. Sugar is bad for adrenal fatigue.

Thank you so much! I still haven't finished reading my book yet, and I think I'm going to go look for the one you had originally. I didn't want to spend a lot of money on books and such until I knew for sure I had it, lol. I cut down the fruit to only one today, so am off to a good start.

dlp252 Apprentice

Evie, I see you!!!! Are you okay!? How are you?

lindalee Enthusiast

Hi Evie,

Hope you are ok-just talked to Judy and she told me you were missing! I've been away for a little vacation and sure have missed alot.

Andrea, sorry about your dad. Hope things will get better-you're in my prayers.

Prayers to all :)

DingoGirl Enthusiast
Thank you so much! I still haven't finished reading my book yet, and I think I'm going to go look for the one you had originally. I didn't want to spend a lot of money on books and such until I knew for sure I had it, lol. I cut down the fruit to only one today, so am off to a good start.

Donna - FYI, the most wondrous thing is half.com, an offshoot of eBay, this is where I get all books/celiac disease's/DVD's - - it can be amazingly cheap if you don't care about the condition of the book.

I am so bored tonight. ha - RUMPH! :angry: I wonder if I"ll ever go out on a date again? Oh, here's great news, just found out I"m basically spending Christmas ALONE until about 4 or 5 pm.....isn't that great. :( I truly can't take this any more.......I know it sounds really stupid, but I could use lots of prayers over this. *sniff*

from Bridget Jones:

AT Christmas little children sing and merry bells jingle.

The cold winter air makes our hands and faces tingle.

And happy families go to church adn cheerily they mingle,

And the whole business is unbelievably dreadful if you're single.

BAH. I guess my bad winter mood started today. :angry: don't worry, it'll be over on exactly January SECOND. ;) More from Bridget Jones throughout the next six weeks, sorry. :ph34r::lol:

WHAT??? There was an Evie sighting???? oh praise God....that is good news! Where is she??? :huh:

dlp252 Apprentice
Donna - FYI, the most wondrous thing is half.com, an offshoot of eBay, this is where I get all books/celiac disease's/DVD's - - it can be amazingly cheap if you don't care about the condition of the book.

One of my many quirks...I have a "thing" about used books, lol. Don't know where it came from, but I just can't read a used book. Strange, I know. :P Anyway, now that I know I have adrenal fatigue I can justify spending the money.

I am so bored tonight. ha - RUMPH! :angry: I wonder if I"ll ever go out on a date again? Oh, here's great news, just found out I"m basically spending Christmas ALONE until about 4 or 5 pm.....isn't that great. :( I truly can't take this any more.......I know it sounds really stupid, but I could use lots of prayers over this. *sniff*

from Bridget Jones:

AT Christmas little children sing and merry bells jingle.

The cold winter air makes our hands and faces tingle.

And happy families go to church adn cheerily they mingle,

And the whole business is unbelievably dreadful if you're single.

BAH. I guess my bad winter mood started today. :angry: don't worry, it'll be over on exactly January SECOND. ;) More from Bridget Jones throughout the next six weeks, sorry. :ph34r::lol:

WHAT??? There was an Evie sighting???? oh praise God....that is good news! Where is she??? :huh:

Yes, I saw Evie online a bit ago (or someone impersonating Evie), but she didn't post. :( Re the single thing...I gave up on the whole thing a while ago. Seems like all the men in my age group are really OLD, and the ones I have the most in common with are at least 10 years younger...so I just gave up, lol.

DingoGirl Enthusiast
One of my many quirks...I have a "thing" about used books, lol. Don't know where it came from, but I just can't read a used book. Strange, I know. :P Anyway, now that I know I have adrenal fatigue I can justify spending the money.

Donna :lol::lol::lol: I guess you just don't know where that book has been :lol: Yes, well, dont' I know QUIRKS :ph34r: If I told you all some of my phobias.....shower and sink mold, bathtubs (I lost the ability to take a bath years ago, unless it's free-standing claw-foot tub, OR a BRAND NEW tub with NO sliding doors (don't ask, I don't know where this has all come from), hot tubs, blah blah blah.....THE OCEAN :o:ph34r: and the bottom of lakes :o:ph34r: many more I won't bore you with....... :lol:

lindalee Enthusiast

Hey Susan,

Being single means you can do whatever you want! I love Bridget Jones too - she sure did get in some messes.

I missed so much- Saw something on here about flannel sheets. I've been thinking about getting some but didn't know what brand -

dlp252 Apprentice
Donna :lol::lol::lol: I guess you just don't know where that book has been :lol: Yes, well, dont' I know QUIRKS :ph34r: If I told you all some of my phobias.....shower and sink mold, bathtubs (I lost the ability to take a bath years ago, unless it's free-standing claw-foot tub, OR a BRAND NEW tub with NO sliding doors (don't ask, I don't know where this has all come from), hot tubs, blah blah blah.....THE OCEAN :o:ph34r: and the bottom of lakes :o:ph34r: many more I won't bore you with....... :lol:

Everyday I see we have more in common! :lol:

DingoGirl Enthusiast

OH MY GAAAAWD

THE BULLDOGS WON

:angry::angry::angry: they just put an end to their "Longest losing streak in 77 years" and it's because I forgot to TELL you guys to PRAY against them.......

Bah! :angry:

Everyday I see we have more in common! :lol:

:ph34r::lol::ph34r::lol::ph34r:

dlp252 Apprentice
I missed so much- Saw something on here about flannel sheets. I've been thinking about getting some but didn't know what brand -

I LOVE flannel sheets...I think I got mine from JC Penney cuz they seem to have a nice selection of deep pocket fitted sheets. I think I've also purchase some from QVC which were nice.

lindalee Enthusiast

Hey Donna,

They do look old don't they? Did you see the Seinfield episode about the book George took in the bathroom?

If they are good I'll have to try them. I love new sheets.

dlp252 Apprentice
Hey Donna,

They do look old don't they? Did you see the Seinfield episode about the book George took in the bathroom?

If they are good I'll have to try them.

I didn't see that Seinfeld. And, it's not only that they LOOK old, they act old too, lol. Maybe I'm just immature, lol. :lol::ph34r:

On the sheets--just be sure that they are a high thread count. Knit sheets are nice too, but not quite as warm as flannel.

happygirl Collaborator

are we back on flannel sheets?

lindalee Enthusiast

I couldn't get into the ones Oprah reccomended the jersey ones. What thread count do you reccomend? I deserve the best.

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      Those are great points and some follow up thoughts and ideas. I think you're both stating the same thing in two different ways, but I appreciate the "accuracy" of what you're getting to.   1. Are you both stating that the "too salty of a taste" could be triggered by a histamine reaction, and the flavor is coming from the electrolytes? If that is the case, wouldn't the individuals mouth always be salty during a "Glutening" situation, or are we saying that the person could get "use to the flavor" until introducing food or beverage and that could be enough to "stir the pot" and notice the salty flavor? 2. To push back on "#1": If that were true anyone with issues of histamine releasing foods/treatments would experience the same thing. Also, I did not experience a situation where most beverages were "too salty". Thoughts?
    • trents
      The only vegetable sources of B12 are some fermented bean products using a certain microbiotic culture. It is next to impossible to get adequate B12 from vegetable sources without supplementation. Same with D3. Some mushrooms can make D3 when exposed to UV light. Are you vegetarian or vegan? Do you do dairy and eggs or no animal products at all? Low B12 and D3 could definitely cause or contribute to many of the symptoms you have been experiencing but would not cause celiac disease. It is more likely the other way around, especially if you are a vegetarian eating no animal products. Many of your symptoms seem neurological in nature. It is well known that the B vitamin complex is vital to neurological health but so is D3. https://pmc.ncbi.nlm.nih.gov/articles/PMC9820561/
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