Jump to content

  • 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

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?

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

Celiac.com Sponsor (A8-M):


  • Replies 33.4k
  • Created
  • Last Reply
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

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

Celiac.com Sponsor (A8-M):


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??

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Russ H
      - Russ H replied to Surinder's topic in Related Issues & Disorders
      1

      Gluten intolerance and coughing fitsfits

      Hello Surinder, and welcome to the forum. Thank you for sharing your experience. Have you been diagnosed with coeliac disease? Although less common, there are reports of coeliac disease being associated with pulmonary conditions causing symptoms such as a chronic cough. Case Report: A case of cough, lymphocytic bronchoalveolitis...
    2. Surinder
      - Surinder posted a topic in Related Issues & Disorders
      1

      Gluten intolerance and coughing fitsfits

      I read with interest someone's article regarding gluten and coughing and how drs could not diagnose the cause. I am a prediabetic and in the process of cutting down on carbs I slowly eliminated bread and added more complex carbs and found that my cough had gone and I was feeling generally calmer and happier. This was an accidental finding and I...
    3. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      2

      Help understand results

      tldr: "we tested your daughter with one test and that result does not suggest Celiac. However, the test we used should not be used as the initial screening test for celiac (like it appears they did) because it misses a lot of cases ("low specificity"). No further testing is scheduled or pending" We eat "gluten" and our bodies digest part of it into ...
    4. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      41

      My journey is it gluten or fiber?

      So I have the Benfo, Thiamax, and Neuromag along with my Super B Complex. When I read the labels it says take 3/take 4 times a day but one pill a day is ok correct since its 4 pills at breakfast.
    5. cristiana
      - cristiana replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      2

      Celiac support is hard to find

      Hi @tiffanygosci Well done for reaching out, fantastic you have found this forum. It sounds like you are managing the diet well, it can be overwhelming at first, but it will get easier. I wonder if you have seen the short film 'Glutened'? - someone shared it on this forum a few months ago and it reminded me of how isolating it can be,...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,974
    • Most Online (within 30 mins)
      7,748
    2972
    Newest Member
    2972
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Russ H
      Gluten intolerance and coughing fitsfits

      By Russ H · Posted

      Hello Surinder, and welcome to the forum. Thank you for sharing your experience. Have you been diagnosed with coeliac disease? Although less common, there are reports of coeliac disease being associated with pulmonary conditions causing symptoms such as a chronic cough.     Case Report: A case of cough, lymphocytic bronchoalveolitis and coeliac disease with improvement following a gluten free diet
    • Surinder
      Gluten intolerance and coughing fitsfits

      By Surinder · Posted

      I read with interest someone's article regarding gluten and coughing and how drs could not diagnose the cause. I am a prediabetic and in the process of cutting down on carbs I slowly eliminated bread and added more complex carbs and found that my cough had gone and I was feeling generally calmer and happier. This was an accidental finding and I relate to your story. I have shared my story for you. Kind regards, Surinder
    • Aretaeus Cappadocia
      Help understand results

      By Aretaeus Cappadocia · Posted

      tldr: "we tested your daughter with one test and that result does not suggest Celiac. However, the test we used should not be used as the initial screening test for celiac (like it appears they did) because it misses a lot of cases ("low specificity"). No further testing is scheduled or pending" We eat "gluten" and our bodies digest part of it into "deamidated gliadin" (GLIADIN (DEAMID)). The gliadin is what actually triggers the Celiac disease pathway. The celiac's immune system sees gliadin much like an invading virus, and makes antibodies (AB) against gliadin. Each antibody has the ability to recognize a specific target (anti-gliadin antibodies recognize gliadin). When antibodies find their specific target, they stick to it and call in other parts of the immune system to help eliminate the target. This process also causes the immune system to make a lot more of that antibody, and your test was designed to measure if there was an elevated level of type A (IgA) anti-gliadin antibodies. Antibodies, which are also called immunoglobulins (Ig), come in different types (e.g. class "A" or "G"). Think of antibodies as different kinds of cars, and antibody types as different colors of car. An "A" type (color) is called IgA, and a G type is called IgG. IgA's are more relevant to Celiac disease than are the IgG's or other types. Unfortunately, some people don't make very much of the IgA class (like not making aqua-colored cars, even though they make the same cars in green) and that's a common reason for the gliadin-Ab-IgA test to fail to identify celiac. As Trents wrote, they should have given her a "total IgA" test and probably tested her for the anti-tTG IgA antibody.  
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      So I have the Benfo, Thiamax, and Neuromag along with my Super B Complex. When I read the labels it says take 3/take 4 times a day but one pill a day is ok correct since its 4 pills at breakfast.
    • cristiana
      Celiac support is hard to find

      By cristiana · Posted

      Hi @tiffanygosci Well done for reaching out,  fantastic you have found this forum. It sounds like you are managing the diet well, it can be overwhelming at first, but it will get easier.     I wonder if you have seen the short film 'Glutened'? - someone shared it on this forum a few months ago and it reminded me of how isolating it can be, particularly at first, when you don't know anyone with celiac disease.  *see link for film below. I realise now how blessed I was that when I was diagnosed two friends were also diagnosed around the same time, as we shared a lot of tips and recipes at the start.   Since then the number of people I know diagnosed with coeliac disease has grown and grown, there seems to be a much greater awareness of it among healthcare professionals and the public, at least this side of the Atlantic (I'm British).  I think in time you may find this, too. That said, those two coeliac buddies were 'straightforward' cases who seemed to recover very quickly when on a gluten-free diet - I struggled for some time.  So I found that I spent much more time discussing things with this online coeliac family. If you have any more questions, we're here for you.  I hope your event on 15th goes well.  Sounds like a good start!  I like you am not keen on Facebook, but perhaps setting up an account short-term might help? * https://vimeo.com/486284734 Cristiana     
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.