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

Recommended Posts

Fiddle-Faddle Community Regular
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
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

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

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
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
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

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

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

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
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

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

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

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

AAAAAAAAGGGGGGGHHHHHH!!!!!!!

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

num1habsfan Rising Star
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
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
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
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
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.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,162
    • Most Online (within 30 mins)
      10,442

    Prom363
    Newest Member
    Prom363
    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

    • Ginger38
      I don't know how to even begin this or what topic to post this under, so feel free to move it if need be, but I just need a place where I can be honest and I need to vent to people who can relate and who can hopefully inspire me to get back on the right track with my life. This whole gluten / celiac/ testing etc has been nothing but an uphill battle and struggle for me since it began. When I went gluten free years back, it was the hardest thing I ever did, and I did it on my own without much help or guidance aside from this group. I am a foodie and a carb lover and a baker and having to give up so many foods that brought me so much happiness was so incredibly hard for me, but I eventually did it. Even when people encouraged me to have just a little or cheat here and there I didn't give in.  I have since developed uncontrolled diabetes which has complicated all this to say the very least, because none of the breads, flours or replacement foods, that actually taste semi good are diabetic friendly (at least not for me). So I have struggled with eating gluten off and on in the form of crackers and breads and low carb keto foods, even though I know I shouldn't. I do good for a while and then I completely lose control again and somehow justify it in my mind.  Inevitably because of my struggles, I was really concerned about going back on gluten (full time) for the gluten challenge, I mean it gave me an excuse to party hard, and be miserable while doing so, but I was afraid once I did that challenge for 8-10 weeks that I would never be able to give the gluten back up again. And that is exactly where I am sitting at as we speak. It has been an on again off again roller coaster ride of no gluten, gluten, little gluten, no gluten, lots of gluten etc.  I go from buying small loaves of bread and keto tortillas and buns to whole wheat buns and pasta - justifying it somewhat because it is better for my blood sugar issues and that is what is most important. I binge eat some of the foods and then I feel horribly guilty for eating it and then I end up throwing all the gluten food away in a desperate attempt to stop the madness. Then I restart the process all over again at some point.  My joints ache. My stomach is constantly sour. I walk around like I have terrible arthritis or something. My hands are swelling terribly, sometimes I can't even make a fist. I am experiencing numbness and tingling in my hands and weird things with numbness and tightness in my face as well. I am dropping things constantly. I am forgetting lots of things and struggle to recall things. I can't focus on my work. I am having nightmares. I am wanting to sleep all the time. I am bloated and sometimes have diarrhea and nausea, but then other times I am horribly constipated. My  post herpetic neuralgia issues from shingles are much worse now and overall I am just so irritable and angry and emotionally numb.   I know for some it is a simple choice, but I can't be alone in this struggle. Thanks for letting me getting all this out there. I hope someone can scare or encourage some sense into me. It is kind of insane what I do to myself. And I am just tired of dealing with all the food issues and health issues   
    • suek54
      Hi Belle, well done for advocating brilliantly for yourself. Looks like you have a good dermatologist on board now to help you go forward. Hope your elimination diet continues to keep you itch free. Sue
    • BelleDeJour
      Hi everyone I have just come out of the Dermatology appointment on a bit of a high! Derm said that she does not see dermatitis herpetiformis often but believes everything I said about thinking that I have it. She said it is either that or a wheat allergy - either way, the answer is the same, no gluten. She said that she spends her working life advising people to trial eliminating wheat and diary etc. but they don't do so (I did say that I am equally as guilty and it really got to the point of desperation with me before I tried eliminating gluten. Plus I knew it was not an eczema flare when the little bumps appeared on my skin. She will do a blood and a FIT test for Coeliac but expects both to be negative. I said that I would refuse to do a 'gluten challenge' if she recommended one and she smiled and said she admired me for that, it is not necessary as my evidence was very clear. She did not think a biopsy would be worth doing but did see the bumps on my feet and said that yes, they do suggest gluten/Coeliac/what allergy.  She said that she would like me to be her 'case study' for investigating this so thoroughly myself - and for trying the elimination diet! She does not see dermatitis herpetiformis often. All my bloods that were taken when I was at my lowest point after seeing her were (surprisingly to me) normal. Iron was just a bit low but I have since increased all my vitamin and mineral intake. I did not mention Dapsone because I think I can do this with diet alone now that I appear to have cut out everything that was irritating me (thanks to you guys here). She will give me a repeat prescription of Elocon to use to clear the final areas of sore skin up. I will stay here with you all as we all progress through this.   
    • Aretaeus Cappadocia
      I've tried a few bread recipes but I am by no means an expert. However, this recipe is the best bread I've made to date. It uses 3 grains (or their flours if you prefer) and requires a strong blender (like a Vitamix) but no bread machine. I use it to make English muffins or a loaf of bread. The muffins are a little easier to make and the bread comes out in premade portions. It passes the sandwich test and it tastes great over several days (to my taste, store-bought gluten-free breads tend to lose their flavor on the second day) This recipe is pretty flexible in terms of varying ratios or types of grains.  https://www.instagram.com/p/DPDnyaJjpHh/
    • Aretaeus Cappadocia
      I don't have a bread machine but it sure looks like the bread I remember from BC. This is on my "to do" list.
×
×
  • Create New...