Jump to content

  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Extreme Pain And Bizzare Symptoms!

num1habsfan

By num1habsfan
in Coping with Celiac Disease

Recommended Posts

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
Please let us know how things go, I don't think anyone meant to be harsh. There are a number of people here, myself included who are worried about you.

Thank you for putting things into words better than I did. Yes, I certainly wrote my post out of concern for num1habsfan.

num1habsfan, I did not say that you ARE a flake, I said that you end up LOOKING like a flake if you don't even return the phone call of the concerned doctor. You also did not originally post that they knew you were coming on Monday, so from my perspective, it looked like you were blowing him off. And, as ravenwoodglass said, if you do have something contagious like hepatitis, you could find yourself being blamed--and possibly expelled or even sued-- by the college for spreading it to others if you disregarded medical advice to go back to the doctor ASAP.

Alison, I don't know what you are trying to achieve by your harsh comments and name calling. Motivations possibly. I found it extremely harsh toward a young person with concerns and in distress.

Momma Goose, I did not intend to be harsh, but realistic (no sugar-coating), and I did no name-calling. As I stated above, I did not call num1habsfan any names, I pointed out how a specific act-- disregarding his urgent medical advice--makes her look to the doctor who gave her that advice . I have no clue what you mean by motivations, as I have never met num1habsfan.

However, I constantly find myself wondering what YOUR motivations are. For whatever reason, it seems that my posts just rub you the wrong way. While I am sorry about this, it doesn't seem like there is anything I can do about it except respectfully request that you accept that I call things as I see them, without any intent whatsoever to be harsh. This might not be something that is helpful from your perspective, but it certainly is to some people, and it's the kind of help that I would offer my own children and would want for myself. There are many different ways of offering help and support. If num1habsfan does not like the kind of help I offer, she doesn't have to follow my advice. If YOU don't like the kind of help and support I offer, you can offer what you think is best. I don't criticize your point of view; please have the same respect for mine.

Your constant inclination to misinterpret my motivations and then scold me for it is very upsetting to me.

I would appreciate it if you would stop jumping on me every time I see things differently and react to things differently than you do.

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

Celiac.com Sponsor (A8-M):


  • Replies 93
  • Created
  • Last Reply
JNBunnie1 Community Regular
JNBunnie1
Posted
i'm not even sure what the bloodwork did, or what anything showed. They wouldnt explain anything to me. And if I understood anything about medical records I would have just read it myself.

It wasn't this guy who told me to wait for the stool sample, he wanted it done as soon as possible. It was one of the previous times at home that I was told to wait until after my period is done (because of testing for bacteria..not sure how it affects it, but it does).

~ Lisa ~

I'm a little concerned about this statement. You're saying that on a previous, unrelated doctor visit, advice was given that you are adhering to unneccessarily now, without consulting your current doctor? Sometimes, you just have to demand that your doctor tell you everything he's doing, and why. You are entitled to that information. If you really can't remember all this stuff, buy one of those little recorder thingy's journalists use and bring it to every doctor appointment for the rest of your life. The poeple on this board can't do it for you, all we can do is type. (and snipe at, and misunderstand, each other unneccessarily)

FootballFanatic Contributor
FootballFanatic
Posted

First of all, I haven't been on in a while, but I read your whole ordeal and I really hope things are alright for you. I hope you start feeling better soon and that you find a doctor who works with you. I have been there - during exam week - with appendicitis. No sympathy from the professors, just make sure not to neglect your own body because the grades aren't nearly as important as your life, and we all want you to get better! You've been very strong and I'm in admiration of your stability through this. Feel better soon!

Second, I think personal disputes should be resolved in private messages, this topic is about Lisa's mystery illness.

num1habsfan Rising Star
num1habsfan
Posted
  • Author

Fiddle-Faddle, I know you didn't mean to call me a liar or a fake or whatever that could have sounded like. I know you were just looking at it from another point of view..

I'm a little concerned about this statement. You're saying that on a previous, unrelated doctor visit, advice was given that you are adhering to unneccessarily now, without consulting your current doctor? Sometimes, you just have to demand that your doctor tell you everything he's doing, and why. You are entitled to that information. If you really can't remember all this stuff, buy one of those little recorder thingy's journalists use and bring it to every doctor appointment for the rest of your life. The poeple on this board can't do it for you, all we can do is type. (and snipe at, and misunderstand, each other unneccessarily)

I guess I haven't made myself clear enough. I have had to give identical stool sample for the same testing, twice, this year. Same instructions and everything. There was the rules to even not eat anything red. They have to make sure that if anything does show up it's not related to the foods you eat or the period.

You've been very strong and I'm in admiration of your stability through this. Feel better soon!

Second, I think personal disputes should be resolved in private messages, this topic is about Lisa's mystery illness.

Thank you...I have had my moments in this last week and half when I don't feel all that strong, but I do realize a lotof people wouldn't still try to live life normally. Also thank you for saying any issues between members should be said personally instead of in here. No offense guys, but when I saw there was new replies I was hoping it was more advice or support, not arguing.

~ Lisa ~

JNBunnie1 Community Regular
JNBunnie1
Posted
I guess I haven't made myself clear enough. I have had to give identical stool sample for the same testing, twice, this year. Same instructions and everything. There was the rules to even not eat anything red. They have to make sure that if anything does show up it's not related to the foods you eat or the period.

Ohhh.... So then they must be looking for blood in the stool? Sounds like a wierd thing to be looking for when you're trying to investgate white poo, but whatever. Can't they just take a sample from you (not to be graphic or anything) like with a gloved finger? They did that to me once, that would eclipse the need to worry about period blood anyway. I still think you should get a little tape recorder for your visits.

num1habsfan Rising Star
num1habsfan
Posted
  • Author
Ohhh.... So then they must be looking for blood in the stool? Sounds like a wierd thing to be looking for when you're trying to investgate white poo, but whatever. Can't they just take a sample from you (not to be graphic or anything) like with a gloved finger? They did that to me once, that would eclipse the need to worry about period blood anyway. I still think you should get a little tape recorder for your visits.

That's the rule when testing for a bacterial infection, also. He just wants to rule those things out so that to have proof that it's something else, and making sure he doesn't assume something extreme and rule out something simple. The problem is I haven't gone in 2 days. May have to just eat some dairy to make myself go by tomorrow :lol:

~ Lisa ~

num1habsfan Rising Star
num1habsfan
Posted
  • Author

OK i'm just at the school. Handed in my final and having a coffee to give me some energy (since I slept very poorly) and then I'm gonna call to the clinic to make sure the doctor is there and then call a cab. I would hate to waste $15 or so and go there if he's unavailable. Keep you updated...

~ Lisa ~

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

Celiac.com Sponsor (A8-M):


Joni63 Collaborator
Joni63
Posted

I really hope the doctor is there and you get your answers. I'm sure the past couple weeks have been draining for you.

Let us know how you make out.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Just checking in to see how you are doing--please let us know (if you have the energy)! I hope they finally have some answers for you.

num1habsfan Rising Star
num1habsfan
Posted
  • Author
Just checking in to see how you are doing--please let us know (if you have the energy)! I hope they finally have some answers for you.

Thank you...I called and he's there until 6. I had my coffee and let the Tim Horton's kick in. Now i'm just making my approx 1/2 hour wait for a taxi to show up at the university. Got to love city life (NOT). If I can pick up wireless internet while I'm there I'll keep posting on the board, if not then I'll just make a log for myself in OneNote and post it onto the board when I do get into wireless. Something gives me the feeling that this may turn out to be another super long day!!

~ Lisa ~

ravenwoodglass Mentor
ravenwoodglass
Posted

We will be thinking of you. Let us know how things went when you can. Glad he is going to be able to see you.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

If you get delayed in traffic, be sure to call the clinic and let them know that you are on the way!! He might stay longer if he knows you are making an effort to see him.

Good luck!

num1habsfan Rising Star
num1habsfan
Posted
  • Author

OK so I finished there sooner than I should have....

He told me don't worry about the heart/ECG thing because he had me do another one today and said things look a lot better...

He asked what happened at ER and was quite pissed too when I told him they refused to see me, I didnt see anyone until 2 am, and they wouldn't listen to anything I said. He said "did you show them the name on the envelope?" I told him yes. But they still refused. All he really commented on that was shaking his head...

I said I'm not feeling any better, still having the HORRIBLE nausea and can't eat...

I went to give my stool samples and she said they gave me the wrong container!! So somehow I have to get another back there by friday afternoon (because thats when I leave home for xmas)...

Umm so he said he's gone for first 3 weeks of January, back January 23rd. He said come back then. If he sends me to a specialist any sooner (for my luck its the same damn idiot who refused to help me twice before, both for celiac/crohn's!!) I will be waiting months to get in. By that time he should have all of my test results back and can then send me to the specialist. Told me that's the only way I can get in to him almost immediately and if he tried that right now before xmas there would be a lot of angry people...

I'm soooo just...frustrated and sad and angry and.......1000 emotions at once I think. By the time 1.5 months passes there will be nothing left of me. Not saying that I can't afford to lose weight, since i'm normal, but I really DONT want to!!! :(:(:(

~ Lisa ~

Jestgar Rising Star
Jestgar
Posted

AAAAAAAAGGGGGGGHHHHHH!!!!!!!

sorry, I just thought that must be what you really want to post

num1habsfan Rising Star
num1habsfan
Posted
  • Author
AAAAAAAAGGGGGGGHHHHHH!!!!!!!

sorry, I just thought that must be what you really want to post

Yeah that would sum it all up, that's for sure. Though then again...I dont think that says enough, either.

~ Lisa ~

jerseyangel Proficient
jerseyangel
Posted
AAAAAAAAGGGGGGGHHHHHH!!!!!!!

sorry, I just thought that must be what you really want to post

Yeah, what she said :(

Lisa, I just don't understand these doctors--why did he say he wanted to see you back if this was all the appointment was going to be about? Did you ask him about that?

I don't blame you for being frustrated--I'm frustrated for you.

num1habsfan Rising Star
num1habsfan
Posted
  • Author
Yeah, what she said :(

Lisa, I just don't understand these doctors--why did he say he wanted to see you back if this was all the appointment was going to be about? Did you ask him about that?

I don't blame you for being frustrated--I'm frustrated for you.

I think it was mainly to re-check my heart and to find out how things went the time after the last time i seen him and if I was feeling better. I wish he WASN'T going to be gone for 3 weeks starting new year. Then i wouldnt have to starve/suffer for so long. My usual suffering is more than enough as it is :(

~ Lisa ~

jerseyangel Proficient
jerseyangel
Posted
I think it was mainly to re-check my heart and to find out how things went the time after the last time i seen him and if I was feeling better. I wish he WASN'T going to be gone for 3 weeks starting new year. Then i wouldnt have to starve/suffer for so long. My usual suffering is more than enough as it is :(

~ Lisa ~

Oh I see, it sounded like it may have been something more. I know it's going to be hard to stick it out for another few weeks. It just is not right.

Will it at least be easier for you at home over the holidays, or is your family still giving you a hard time?

num1habsfan Rising Star
num1habsfan
Posted
  • Author
Oh I see, it sounded like it may have been something more. I know it's going to be hard to stick it out for another few weeks. It just is not right.

Will it at least be easier for you at home over the holidays, or is your family still giving you a hard time?

I thought it would have been something more, also...

Meh family is still the same basically, definitely still get the insult thing from them...

My question is: HOW to a manage to eat anything for xmas?? It's not gonna be at my house...

~ Lisa ~

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,199
    • Most Online (within 30 mins)
      10,442
    Tricia01
    Newest Member
    Tricia01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Russ H
      Coeliac or not coeliac

      By Russ H · Posted

      Do you have the standard range for the test results you received? A level of anti-tTG2 antibodies at least 10x the standard range is almost certainly (>98%) due to coeliac disease. Moderately raised levels can be caused by other conditions as well as coeliac disease. Accuracy of the No-Biopsy Approach for the Diagnosis of Celiac Disease in Adults: A Systematic Review and Meta-Analysis It is possible to have latent or early stage coeliac disease without histological changes visible by microscope. As has been suggest in this thread, if the repeat test comes up negative and serology is high, request an HLA genetic test from your specialist. Only 40 % of the population carries an HLA gene variant enabling the development of coeliac disease - if you test negative for this, it is quite unlikely that you have coeliac disease.  
    • Wheatwacked
      The Struggle Has Overtaken Me

      By Wheatwacked · Posted

      Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with.  
    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Coeliac or not coeliac

      By CC90 · Posted

      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Coeliac or not coeliac

      By Wheatwacked · Posted

      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
×
×
  • Create New...