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Omg...i Might Be On To Something

Rachel--24

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rinne Apprentice
rinne
Posted

I'm sorry to hear that Rachel, I know the waiting is difficult.

I found out this morning that I have "numerous bulky fibroids" in my uterus. They have known this since July but no-one thought to tell me, actually the nurse said they were going to tell me today because today was the endoscopy and colonoscopy. I suppose now they will refer me to a gyno which will take months, then a biopsy which will be more months....

The best part of this exchange though was the first part when she told me that I had only a polyp and didn't need to worry and should have another colonoscopy in ten years. LOL I said that was interesting since I hadn't had one to begin with. Is there any question about how trusting we should be of these people?

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AndreaB Contributor
AndreaB
Posted

Rachel,

I'm sorry. :( Get that test in! How long do they need to process the urine test?

Have the rescheduled you yet?

Mitch came through his surgery ok. He in on pain meds. He's sleeping and I've got to wake him up soon for the next dose. The doctor we saw last night said if we had told him about this a couple months ago he could have tried a more natural approach to try and heal him. We had the allergy testing done last night. It will be four weeks before we find out about those.

My mom brought over an little article written by a ped. I think. He was saying that lactose intolerant children should still drink some milk/dairy products for the calcium and vit d. I beg to differ. My children may not have a problem with dairy, I do and I think Talitha may have a little reaction to cheese, BUT they take a calcium/magnesium/vit d supplement along with their multi. As I've said before, they also drink calcium fortified orange juice.

rinne Apprentice
rinne
Posted

Andrea, I am so glad the surgery went well. I hope Mitch is feeling better soon and able to get off the pain medications.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
The best part of this exchange though was the first part when she told me that I had only a polyp and didn't need to worry and should have another colonoscopy in ten years. LOL I said that was interesting since I hadn't had one to begin with. Is there any question about how trusting we should be of these people?

:huh:

I could totally go on a rant here *but*...today I'll spare everyone since I've said it all before. ;)

Rinne...I'm not gonna worry about my cyst or fibroid anymore....at least for the time being. I have a feeling these other things may correct themselves once I get an idea of what the "bigger picture" is. I figure I should get that figured out first. I let them nuke my thyroid 3 years ago and obviously that wasn't the brightest thing to do....it didnt solve anything. I'm gonna trust my instincts instead of the mainstream docs from now on. They've hurt me more than helped me.

Andrea,

I'm glad everything went well for Mitch today...hopefully he'll be feeling all better soon. :)

The nurse said it takes 2 weeks to get the results of the urine test...she was gonna have me reschedule while she had me on the phone but I told her I'd call back and reschedule later so I still gotta do that. I was on lunch and in a hurry to eat my food. :rolleyes:

I just read the instructions for my test so I'm gonna take it tomorrow when I come home for lunch and then ship it when I get off work. I'll probably just need to schedule my appt. for a week later than what I had. I guess the test is checking these things:

Epinephrine

Norepinephrine

Dopamine

Serotonin

GABA

Creatinine

Anyone know what the significance is?? :unsure:

AndreaB Contributor
AndreaB
Posted

Rachel,

I don't know what those do or what they'd be looking for.

Mitch is feeling nauseated and sleepy. He's on roxicet which is a generic of percoset. He was on it two years ago for his knee injury after his ACL was replaced. I know that one of the meds he was on made his nauseous and he was on roxicet then as well. He was also on vicoden two years ago and I don't remember which one made him sick. He was just telling me he wanted to do the tylenol I got from the hospital (it's equivalent to 3 pills). I said, "NO WAY". It is too soon for him to go off the hardcore meds as unpleasant as they are.

DingoGirl Enthusiast
DingoGirl
Posted
Epinephrine

Norepinephrine

Dopamine

Serotonin

GABA

Creatinine

Anyone know what the significance is?? :unsure:

OMG I just popped in....it's the quickest drive-by....and saw this post. PLUS learned that Andrea's hubby had surgery? I hope he is well, I don't even know what it was for, I'll read later, but give him the GOOD stuff - no Tylenol!

Rachel - curious test. The first four are neurotransmitters in the brain, regulating well-being and moods...I have never heard of them tested in urine but what do I know since my brain is evidently depleted of said neurotransmitters. :huh: Actually, epinephrine is more like....adrenaline. The creatinine tests kidney function....GABA I don't know. Someone will have more scientificness than I and can hopefully go into more detail...

I just hope they come up with some answers for you....

2kids4me Contributor
2kids4me
Posted

Hope this helps, I included links to explain what information they will gather from the urine tests.

Open Original Shared Link

Urine Neurotransmitter and Saliva Hormone Tests - you can also search the site for more info

Open Original Shared Link

an explanation of neurotransmitters including GABA

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

Thanks Susan,

You're totally right...I found a little info. pamphlet in with my test kit. It pretty much said what you wrote.

"Your healthcare provider has ordered this test to determine the levels of the brain chemicals called neurotransmitters. The proper balance of nerotransmitters is essential to your overall mental and physical health."

I'm not gonna take the test tomorrow...I'm gonna have to wait till Saturday now. :(

It says...

"Collecting the urine sample 2-3 hours after rising is critical due to the rhythmic nature of key neurotransmitters. Since neurotransmitter output peaks in the AM, samples collected beyond the suggested time frame do not represent what the body is capable of producing. Later collections are also subject to daily stressors that influence neurotransmitter levels."

I'll be at work when I would need to collect the sample....I dont wanna deal with it at work so I'll wait till the weekend. Darn...more waiting. :angry:

I probably dont need this test to verify that my brain is all screwed up. :lol::ph34r:

Hope this helps, I included links to explain what information they will gather from the urine tests.

Thanks!

I'm gonna check out the sites right now. :)

Hmmm...very interesting.

I wonder what they do if the neurotransmitters levels are off???

The first link is actually the website of the test I'm taking....its from NeuroScience. I'm taking test #9012.

rinne Apprentice
rinne
Posted
Rinne...I'm not gonna worry about my cyst or fibroid anymore....at least for the time being. I have a feeling these other things may correct themselves once I get an idea of what the "bigger picture" is. I figure I should get that figured out first. I let them nuke my thyroid 3 years ago and obviously that wasn't the brightest thing to do....it didnt solve anything. I'm gonna trust my instincts instead of the mainstream docs from now on. They've hurt me more than helped me.

Rachel, I agree, I think they are a manifestation of the problem and not the problem in themselves although I do wonder if they contribute to the pain and nausea, if you or anyone else has any thoughts about that please let me know. I feel like I shouldn't have let them do the CT Scan but I've decided it is the last time I will let them burn me, literally.

elisabet Contributor
elisabet
Posted

Rachell,

One can diagnose if there is a tumor producing ,too much adrenaline ,with measuring these in Urine.

but if you have such a tumor ,you will have very stomack pain and fever.

elisabet

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

OMG....sooo frusterating!!! The doctors office just called. Something happened with my blood. :(

She said the needle they had used was too small and something about the cells in my blood split up so the lab was unable to perform the test.

Do I just have the worst luck or what?? :huh:

I have to go back today and redo the blooddraw. My heart sank but then I asked if it was for the Lyme test and she said no....the lyme test is fine....its only this other test that needs to be redone. I'm getting so stressed out though...this is gonna push my appt. back even farther. :(

dlp252 Apprentice
dlp252
Posted

Just popping in quickly to say hi!

Rachel, that IS frustrating!!!

Andrea, hope hubby is doing well today!

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

Hi Donna. :)

CarlaB Enthusiast
CarlaB
Posted

Sorry about all your troubles, Rachel. In the end, it will all be worth it! I don't envy you and all the bodily fluids your doc is taking though ... especially blood again!

How about some good news around here!? My sauna is being delivered tomorrow!!!! And, yes, I do fully expect hubby to take the day off to set it up! IMO he may as well take advantage of the fact that he owns the company! Usually all that means is longer hours ...

AndreaB Contributor
AndreaB
Posted

Rachel, not another blood draw! Have you recovered from the last one yet.

Donna, HI!!! :D

Carla, Enjoy your new sauna!

Mitch is still nauseated, hasn't been able to keep anything down. We just talked to the doctor's office and we are going to try ibuprofen and tylenol. We are thinking it's either the narcotic or the anasthesia that's doing him in. School has been haphazard this morning to say the least. I've got to run and get tylenol sometime today. We have the ibuprofen I was given when Seth was born.

dlp252 Apprentice
dlp252
Posted
Mitch is still nauseated, hasn't been able to keep anything down. We just talked to the doctor's office and we are going to try ibuprofen and tylenol. We are thinking it's either the narcotic or the anasthesia that's doing him in. School has been haphazard this morning to say the least. I've got to run and get tylenol sometime today. We have the ibuprofen I was given when Seth was born.

I am to the point where I can't seem to take any of the prescription pain meds...they really do make me feel sick. After the dental appointments I just took Advil, but the nurse told me to take 2-3 every 6 hours...that worked well. Course the antibiotics made me feel a bit queasy too, but not as bad as the Vicodin did.

Carla, yay on the sauna!

Green12 Enthusiast
Green12
Posted

So sorry Rachel about the mix up with the blood draw, that totally sucks :( You have not had the best luck with all of this, you will be an expert on patience when all this is through :lol:

How about some good news around here!? My sauna is being delivered tomorrow!!!! And, yes, I do fully expect hubby to take the day off to set it up! IMO he may as well take advantage of the fact that he owns the company! Usually all that means is longer hours ...

Carla, congratulations on the arrival of your sauna! I think you will really enjoy it :)

I have a doctors appt tomorrow and he said he wants to discuss test results but I don't know which test he means so I am alittle anxious.

How are you doing? Hows your diet? are you still doing the histamine one?

Miamia

Hi mia mia, how did your doctors appt go? I am still doing the histamine diet, it's going pretty good. Let us know what you found out about your test results.

evie Rookie
evie
Posted
Sorry about all your troubles, Rachel. In the end, it will all be worth it! I don't envy you and all the bodily fluids your doc is taking though ... especially blood again!

How about some good news around here!? My sauna is being delivered tomorrow!!!! And, yes, I do fully expect hubby to take the day off to set it up! IMO he may as well take advantage of the fact that he owns the company! Usually all that means is longer hours ...

YES, good news is just what we need, am sure you will enjoy that suana and I think it will help pull out poisons from your body. I used to get a newsletter on allergies and MCS that spoke of that being helpful.

hope Mitch is better by today Andrea!! No fun, hubby had something of that nature years ago.

Feel for Rachel with all the blood draws, no fun if as hard to get it as mine is!! :huh: Need to have some done Sat. and had testing tues and thurs this week, my Dr's being thoro!! :rolleyes: Not sure what next, one test to make sure no blood clot in lungs. Did i tell you about our weekend? If not will do another time, stay tired but resting away. Have good day all, stay as well as can. :):) evie

nikki-uk Enthusiast
nikki-uk
Posted

Evie,look forward to hearing about your weekend-hope you didn't over do it!

Guest Robbin
Guest Robbin
Posted
Evie,look forward to hearing about your weekend-hope you didn't over do it!

Hi Nikki--hope hubby is doing better!

Hi evie--Hope you are doing ok--I will "see" you on the other forum later!! :)

Hi All-

:) I feel a quick need to recap some things for any newbies reading this thread--

This is a thread that Rachel started to find some answers since she, like many of us, struggle with issues going beyond gluten. Many of us here have gotten better on a gluten-free diet, however we have still been unwell and are searching for answers as to why. We are just trying to get well and live healthy, productive lives and to find out why we are not getting 100% after being gluten free, casein free, soy free, etc, for an extended period of time.

The things we have discussed here are different food intolerances, histamine response causing foods, sensitivities to chemicals in water, mercury and dental work problems, parasites and bacteria, and lyme disease.

I am one of the ones searching and frustrated and JUST WANT TO GET WELL. I thank you all for the advice and help you have given me along this journey and I just want to say thank you especially to Rachel and rinne and all the others who have researched and struggled along with me. I hope any new people out there with these same problems feel free to join in and share your stories and any help you have found. We are not promoting any therapy, drug, herb, or any other thing to anyone. We just want to know what will work for us individually and please consult a dr. before trying anything new.

I'm struggling with a virus right now, but I felt that others need to understand this thread, the reason for it, and maybe have something to add to the discussion. :) Bye for now.

Green12 Enthusiast
Green12
Posted
YES, good news is just what we need, am sure you will enjoy that suana and I think it will help pull out poisons from your body. I used to get a newsletter on allergies and MCS that spoke of that being helpful.

hope Mitch is better by today Andrea!! No fun, hubby had something of that nature years ago.

Feel for Rachel with all the blood draws, no fun if as hard to get it as mine is!! :huh: Need to have some done Sat. and had testing tues and thurs this week, my Dr's being thoro!! :rolleyes: Not sure what next, one test to make sure no blood clot in lungs. Did i tell you about our weekend? If not will do another time, stay tired but resting away. Have good day all, stay as well as can. :):) evie

Hi evie, I don't think you mentioned about your weekend, but maybe I missed it? Sounds like you are still having a time with all the appts. and testing, hang in there. I hope all goes well with everything and your results are clear. Take good care of yourself :)

Hi Robbin :) Nicely said post. We here in the OMG thread are all hanging on, persisting and persevering, fighting to find the answers that will bring us better health.

Hi Nikki :)

AndreaB Contributor
AndreaB
Posted

Hi all!

Mitch is doing much better today. He went of his drugs yesterday and hasn't taken any tylenol today. He has been feeling good and has an appetite again.

This is basically a drive by. Very busy right now.

Julie,

I'll write later. :D

Rachel,

Your inbox is full. :P

Edit addition by Mitch.....He says since the two troublemakers, Roxi and Ana are gone he feels better. Who are these two women? :unsure:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Hi Robbin :) Nicely said post. We here in the OMG thread are all hanging on, persisting and persevering, fighting to find the answers that will bring us better health.

Yeah...I'm hanging on too...gonna fight this thing....whatever it is. :huh:

Gonna win too!! :D

Thanks for the recap Robbin. It doesnt seem like it but guess what...I started this thread 5 months ago!! We've been learning so much during this time...its pretty amazing. I would like to thank everyone here as well...thanks for sticking it out with me all these months. :D

Of course anyone who would like to add to our discussions...you are welcome to do so. :) We're still putting all the pieces together and trying to get our health back. We're a very persistant bunch. ;)

Evie...I missed your "weekend story" too....would love to hear it! :)

Edit addition by Mitch.....He says since the two troublemakers, Roxi and Ana are gone he feels better. Who are these two women?

:lol::lol:

I'm glad Mitch is feeling better today! :)

Andrea,

My inbox isnt full anymore. :P

Carla,

Is your sauna in yet??? Cant wait to hear about it.

CarlaB Enthusiast
CarlaB
Posted
Carla,

Is your sauna in yet??? Cant wait to hear about it.

Adam's putting it together now ... I'm gonna try it very soon -- tonight!!!! I'll let you know tomorrow!

Green12 Enthusiast
Green12
Posted
Adam's putting it together now ... I'm gonna try it very soon -- tonight!!!! I'll let you know tomorrow!

Mine came in panels that just snap together, ver easy to assemble and take apart. Is yours like this too? I'm excited for you to use it, can't wait either to hear about it!

Hi all!

Mitch is doing much better today. He went of his drugs yesterday and hasn't taken any tylenol today. He has been feeling good and has an appetite again.

Edit addition by Mitch.....He says since the two troublemakers, Roxi and Ana are gone he feels better. Who are these two women? :unsure:

Hi Andrea,

Glad to hear Mitch is doing much better today, give him my best.

Who are Roxi and Ana?? Probably something I missed, AGAIN :lol:

Donna, how are you feeling lately??

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

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • 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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