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Omg...i Might Be On To Something

Rachel--24

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Green12 Enthusiast
Green12
Posted
Well I'm off to my appt. :)

I had to catch up on the thread first...I feel like I'm running late all day today. Late for work, late coming back from lunch and now...if I dont move my butt, late for the appt. Could it be the thread? :o

Nah.... :P

BTW...The last guy I dated wasnt at all bothered when after only a few dates I sent him to the store for tampons. :lol:

It was kind of a test but he wasnt phased at all...I think he was actually happy to do it. :huh:

Many times after that he brought them home....knew exactly which ones to get too!

Good luck :)

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penguin Community Regular
penguin
Posted
Got done with my running around... phew.. and I did run, I was worried I'd be so behind in reading this post :lol:

Now lets see what was everyone talking about? Oh yeah, tampons :lol: what comes to mind here is my phobia of "proper" words .... I can't say "menstration" and the rest of those.... I get SO embarrassed... now I can say the "slang" for everything and I have no problem. I think the sex ed teachers messed with my psychie when I was in 5th grade :lol: Tony has no problem saying any word <_<

I used to be, and then I taught my scouts about menstruation, and the rest of the birds and the bees stuff. We're talking from the egg to the kid to the adult to pregnancy...and how pregancy happened. Yikes! I stumbled over some words, but it turned out just fine. I got lots of compliments from parents about it, although they asked me why I wouldn't answer their kids' questions about masturbation :ph34r:

Hey, man. I talked about everything else, you can deal with that one! :o

Good luck, Rachel! I look forward to reading about your ovaries!!! :D

AndreaB Contributor
AndreaB
Posted
Got done with my running around... phew.. and I did run, I was worried I'd be so behind in reading this post :lol:

Tony has no problem saying any word <_<

Can't stay away very long...it'll take a day to catch up. :lol:

Tony can just help you along. :ph34r::lol::lol:

We're all be here patiently waiting for you to post when you get back, good luck!!

Who said we'd be patient. Those are your words, not mine. :P:lol::lol:

Hurry up Rachel...it's not even 3:30 yet and they'll probably be running late...maybe we'll hear in a couple hours. :unsure:

Chelsea :ph34r: is right.

penguin Community Regular
penguin
Posted
AHHHHHHHHHH another "proper" word AHHHHHHHHH ((cringing)) :ph34r::lol:

That word didn't bother me so much, it was more discussing it with curious 9 year-olds. :blink:

jerseyangel Proficient
jerseyangel
Posted

I can type it, but don't ask me to say it! :D I wonder if this phobia has a name?...

dlp252 Apprentice
dlp252
Posted

Good gracious, go in for a little endoscopy and there are 15 pages to read! :lol:

jerseyangel Proficient
jerseyangel
Posted
Good gracious, go in for a little endoscopy and there are 15 pages to read! :lol:

How did it go, Donna?

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AndreaB Contributor
AndreaB
Posted

Lately, it's not safe to leave this thread.

We all must be feeling better, we're getting more gabby. :P:lol:

Donna,

How'd it go. Any preliminary news yet?

dlp252 Apprentice
dlp252
Posted

Scope went well...nothing really to report yet. Dr. R thought it looked about the same as it did 3 months ago, but I think it looks slightly bigger according to the pictures they gave me. I was a little weak-kneed and woozy this time afterwards, but that cleared up as soon as I got home and ate (okay, had a cliff nectar bar on the way home--by the way, those are good after they've been sitting in a hot car for an hour or two, lol, kind of like a warm brownie). Now, all I have to worry about is getting rid of all the gas the pump you full of. :lol::ph34r:

Miamia - the weight is yours as soon as I can figure out how to ship it to you, lol.

Mango - I'm so jealous. I was supposed to go to Australia last October, but got really sick and had to cancel the trip...but it did lead to me finding out about my gluten/dairy intolerance, so it all worked out. I'd still love to go there one day. When I was younger I moved to Hawaii for about 6 years...that was quite an experience.

Rinne - re the cyst/fibroids...I had tons of fibroids that seemed to appear all at once about 5 years ago...at that time I was drinking a lot of soy milk, plus am sure I had lots more hidden soy in my diet.

Picard - welcome in!!!!

Cissie - welcome to you too.

Vincent - glad you popped in again.

Hum, alcohol...yep had to give up drinking cuz it does weird things to me. I definitely lose my inhibitions, lol. Didn't cause me to get piercings though...did all those when I was sober. :lol:

AndreaB Contributor
AndreaB
Posted

Donna,

So I assume the doctor thinks everything is going ok?

We haven't heard from Rachel yet...probably still at the doctors since they are always notorious about being behind. It's a real pain in the (backside) :P with three young kids and waiting and waiting and waiting. You get my point.

dlp252 Apprentice
dlp252
Posted
Donna,

So I assume the doctor thinks everything is going ok?

We haven't heard from Rachel yet...probably still at the doctors since they are always notorious about being behind. It's a real pain in the (backside) :P with three young kids and waiting and waiting and waiting. You get my point.

He is pretty certain it's just inflammation making the cells look different, but we won't know for certain until the biopy slides are analyzed.

I see Rachel is posting....waiting with anticipation, lol.

AndreaB Contributor
AndreaB
Posted
I see Rachel is posting....waiting with anticipation, lol.

Where'd she go? Trust she'll be back soon.

dlp252 Apprentice
dlp252
Posted
Where'd she go? Trust she'll be back soon.

Hope so, lol. Was slight more concerned about her appointment than mine. :lol:

dlp252 Apprentice
dlp252
Posted
Did I see Rachel here a second ago or am I seeing things?

I can't wait to hear what the doctor said.

I did see her a while ago. Thought she was even posting, but I guess not, lol.

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

Ok...I'm back.

I'm totally freaked out right now...things didnt go anything like I thought they would. I ended up crying a little. :(

This is what happened:

I met the doc and she seemed nice. I started telling about how I got sick, had by thyroid ablated, got sicker, allergic to everything, noone has found a cause for anything...blah blah blah. She started out not too much different from most docs I've seen...taking nothing I'm saying seriously.

I told her how some people said that cysts can cause sensitivities and when they were removed the sensitivities improved. She got that smile on her face...I'm sure you all know which one I'm talking about. :angry: Then she said that cysts dont cause those types of problems, cysts are normal, blah, blah blah.

She starts talking to me about lifestyle changes...and did I have any like, stress, relationship problems, etc. I told her I did in the beginning but not anymore. She said I could have stuff surpressed thats making me feel sick. I firmly told her that NO...there is something really wrong! Its nothing to do with stress anymore. I'm happy...but not happy with the fact that I'm allergic to everything and cant do normal everyday things because of it. I told her I know my body and something is not right...something is not functioning the way it should. I told her I dont know about cysts but I'm following up on everything because something has to be causing this...its just not happenning for no reason. :angry:

Sooo...next she does an exam...back in the stirrups. :(

BTW...I've had the "ovary" pain today for the first time in awhile and I just happen to be bloated as well. Started thinking about it and yeah...I was bloated everyday when I was really feeling the ovary pain. Thats when I was eating tons of dried fruit, jam and those Edward and Sons crackers. <_<

As shes doing the exam shes asking me if anything hurts....one area hurt really bad and I was all cringing and she said it was my uterus.

So next she gets the ultrasound machine and does an ultrasound (not the stomach one). :ph34r:

This is where it gets scary. I was watching her while she was doing the ultrasound and her face totally changed. She was focusing really hard and looked confused. The thought that went through my head at the time was that she looked like she's seeing an alien baby inside me or something. :unsure:

I was just keeping myself amused in my thoughts as she was probing me.

I started talking to her about some of my symptoms and how they get worse when I ovulate and it was like she wasnt even hearing me....she still had that bizarre look on her face. It was worrisome but I dont know how she normally looks at the ultrasound thingy so I just ignored it.

After a long time she starts talking to me...still not taking her eyes off the screen. She said that my bowels were all over the place. The way she said it got me scared. It was still like she was seeing an alien baby inside me. She said she couldnt view my ovaries very well because my bowels were extremely active and moving all over the place. I asked her what does that mean? She said she wasnt sure.

She was still staring at the screen with that look on her face. Then she said that she normally doesnt see anything like this when shes doing an ultrasound. Then she said....well...I've never seen this...ever. :blink:

She kept looking for a long time w/out saying anything else and then she turned the monitor toward me and showed me the ultrasound as she was doing it. She said "Do you see how everything is moving?" I said "yeah" She said she's never seen anything like that before....it normally is not moving around like that. So the look on her face just made me start crying a little.

I'm pretty sure she totally believed me that something is wrong with me after that. It was written all over her face. I asked her if she thought something was wrong and she said "Yeah...but its not your ovaries". She asked me if I'd had a colonoscopy and what the results were and all that. She asked me how my bowel movements were. I told her everything about my loose stools/ undigested food/ constipation. She said it looked like maybe it was trying to digest and thats why it was moving all over the place but she really wasnt sure about any of it.

I asked her what she thought I should do since noone has found anything wrong but I know there is. She said I need to go back to the GI. She still seemed kind of weirded out and unsure of herself...like she was in deep thought. She said "I think its your intestines".

Well....imagine that!! :o

My intestines....who would have ever thought!!!

So now I have to go back to the GI and also she sent me to radiology for another ultrasound since she couldnt view my ovaries today...she said she saw a little of my right but none of my left. I guess she wants it done on my period or something cuz she told me to schedule within 1 and 2 weeks from now. I already forgot what day but its written down so I'll post that later.

So...after not eating the crackers for a few weeks now I ate some last night. Today I have the ovary pain and some bloating but it was NOT there when I woke up or earlier in the day. It didnt happen until after I ate lunch which was a pear and Tinkyada pasta. I was wondering if my intestines were all crazy like that cuz of gluten from those crackers?? Remember...they are made in a facility with wheat. But then....I get these symptoms all the time anyways so who's to say...I mean its not like I feel fine and symptom free off all the questionable gluten stuff. :unsure:

I dont know what to think but I'm not crying anymore. The main thing that is worrying me is the fact that she had that crazy look on her face and the fact that she'd never seen this before...ever. I imagine shes done lots of ultrasounds so it really freaks me out.

Of course the fact that she thinks my problems are coming from my intestines is no big shocker here...but WTF?? Why is it not getting better? :(

What do you guys think? :huh:

P.S. Thanks for all the well wishes today before my appt. :)

I have to pass over the computer to my mom's hubby now so I'll be back later. B)

VydorScope Proficient
VydorScope
Posted
:huh: Well Rach, umm I dunno... my ovaries just dont seem to bother me like that. :huh: So she had no clue? I hope your GI is a bit better prepaired. :(
Rachel--24 Collaborator
Rachel--24
Posted
  • Author
:huh: Well Rach, umm I dunno... my ovaries just dont seem to bother me like that. :huh: So she had no clue? I hope your GI is a bit better prepaired. :(

She couldnt see my ovaries cause of all the movement. She doesnt know about the intestinal stuff since she's an obgyn. I just feel like I keep getting passed around because noone can figure it out. She was pretty clear about all the movement going on not being related to ovaries or anything in her area. She said it was GI stuff....but that its not something shes ever seen. Obviously its not "normal".

I think this is a good start to finally having a doctor take you seriously!!!

Yeah...I'm hoping but if the GI still says everything is fine then what can I do?

penguin Community Regular
penguin
Posted

Well, that left us with more questions than answers, didn't it. :blink:

I wish I had something more intelligent to say, but I don't. Hopefully the GI will have a clue. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Well, that left us with more questions than answers, didn't it. :blink:

Thats pretty much how I feel right now...I'm bummed. :(

Also I dont want to have another endo/colonoscopy with normal results cuz its not helping me and the bills are expensive. It would be worth it if one of these tests gave me some answers but sheesh....I keep paying to come back with nothing. I feel like I have better odds in Vegas....and that would be alot more fun than getting prepped for a colonoscopy. :(

dlp252 Apprentice
dlp252
Posted
So next she gets the ultrasound machine and does an ultrasound (not the stomach one). :ph34r:

Yah, those aren't fun...had one, not fun! :ph34r:

This is where it gets scary. I was watching her while she was doing the ultrasound and her face totally changed. She was focusing really hard and looked confused. The thought that went through my head at the time was that she looked like she's seeing an alien baby inside me or something. :unsure:

Wow, I hate that...that's what my doctor did when she found my fibroids...it was a combo of the way her face looked and the way she said it...scared the crap out of me (wasn't hard to do in those days I guess).

After a long time she starts talking to me...still not taking her eyes off the screen. She said that my bowels were all over the place. The way she said it got me scared. It was still like she was seeing an alien baby inside me. She said she couldnt view my ovaries very well because my bowels were extremely active and moving all over the place. I asked her what does that mean? She said she wasnt sure.

Wow, I wonder if that just started...one would think Dr. R would have seen that.

She was still staring at the screen with that look on her face. Then she said that she normally doesnt see anything like this when shes doing an ultrasound. Then she said....well...I've never seen this...ever. :blink:

There's that interesting case thing...maybe they'll all take this more seriously now.

She kept looking for a long time w/out saying anything else and then she turned the monitor toward me and showed me the ultrasound as she was doing it. She said "Do you see how everything is moving?" I said "yeah" She said she's never seen anything like that before....it normally is not moving around like that. So the look on her face just made me start crying a little.

That would have scared the crap out of me too!

I'm pretty sure she totally believed me that something is wrong with me after that. It was written all over her face. I asked her if she thought something was wrong and she said "Yeah...but its not your ovaries". She asked me if I'd had a colonoscopy and what the results were and all that. She asked me how my bowel movements were. I told her everything about my loose stools/ undigested food/ constipation. She said it looked like maybe it was trying to digest and thats why it was moving all over the place but she really wasnt sure about any of it.

Is she with the same medical group as Dr. R...the results should have been there. I've never heard of that...wish I had my work connection at home so I could research it.

I asked her what she thought I should do since noone has found anything wrong but I know there is. She said I need to go back to the GI. She still seemed kind of weirded out and unsure of herself...like she was in deep thought. She said "I think its your intestines".

I'd almost prefer they actually say what's going on in their minds...my imagination is so active that I come up with all sorts of things. I know I cried when I left my doctor's office when she found the fibroids, just because we didn't know what they were...she didn't want to say until after the ultrasounds, so I left there thinking I had some awful disease.

Well....imagine that!! :o

My intestines....who would have ever thought!!!

Don't you wish they would just listen to us in the beginning!

I dont know what to think but I'm not crying anymore. The main thing that is worrying me is the fact that she had that crazy look on her face and the fact that she'd never seen this before...ever. I imagine shes done lots of ultrasounds so it really freaks me out.

Of course the fact that she thinks my problems are coming from my intestines is no big shocker here...but WTF?? Why is it not getting better? :(

What do you guys think? :huh:

Don't be freaked out...I think they're a lot like us when we see something unusual...I'm not sure if I'd prefer they were poker faced or not. Just because it's unusual doesn't mean it's serious or dangerous...the pain could just be that the intestines are moving and pressing on other stuff, like the ovaries.

dlp252 Apprentice
dlp252
Posted

Oh, and if she's not with the same group as Dr. R, make sure she sends you a written report, that way you can have a copy of it to show him and anyone else you might get referred to.

AndreaB Contributor
AndreaB
Posted

Rachel,

Well, that answered some questions and gave us some more didn't it. :blink: I second the thought that she should send some notes to the GI doctor. I'm in the middle of feeding Seth his dinner and getting dinner ready for the rest of us...I'll check back in a bit.

DingoGirl Enthusiast
DingoGirl
Posted
. She said it was GI stuff....but that its not something shes ever seen. Obviously its not "normal".

Yeah...I'm hoping but if the GI still says everything is fine then what can I do?

How can everything be "fine," when your intestines are "all over the place"? Rachel I haven't read the entire thread, but have you had an ultrasound before? I'm SURE you've had a colonoscopy, what did that reveal? Just a quick answer - - I know how stressed you are - - but I am leaving for class and don't have time to read this epic thread.....

I just hope you get some answers now. at least she KNOWS you're not crazy and making this all up!

edit - oops just read an above post and yes, you did have a colonoscopy - - sorry! I imagine you've had ultrasound before as well - - just that maybe that time, your intestines were not "all over the place"!

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
Never give up. Sarah was 90. :P

You could also adopt if nothing else...I know it's not the same as having your own, but still a precious child.

As an adoptee (and also, many of my friends have adopted), I beg to differ. It IS the same as having your own child. It's just a very different (though still painful) kind of labor!

evie Rookie
evie
Posted

My My My you girls did have fun at your PJ party!! :) made my tummy feel better (aches and have D) today, I guess still a reaction from those allergy tests a few days ago. I have always been a slow reactor, just stretch it out. any way is very enjoyable to read the posts and make light of problems. probably makes everybodies digestion go better. Rachel, sounds like you got just a bit of an answer today from Dr., she takes you seriously, knows you have a problem & did not blow you off. rots a ruck in your search for answers. :P

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

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • 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).
    • 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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