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dani nero

Staying Positive

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So I finally went to the doc today, and as I feared, it didn't go well. The doc won't give a diagnosis without a gluten challenge, but suggested we test for anti-bodies in hopes that there might be some left in my system (which I doubt will test positive). I asked if they would test for any deficiencies since I feel poorly, and she said it all depended on the presence of the anti-bodies. Which means I'm not getting my supplements or probiotics. I tried to explain to her that exercising makes me lose strength, but she insisted it was due to the fact that my body isn't fit. Even when I told her that the fatigue and weakness occured WHILE my muscles were in top shape. This means I'm not going back to being able to exercise as I please again because I'll be struggling to push my stupid sore muscles to work for god knows how long. And ALLLL of this means I might need to lie to my family about being diagnosed, so that they'd take me seriously.

I don't want to feel desperation though. In order to repel feeling down whenever something negative is expected to happen, I'm going to try to come up with things to think about that will allow me to stay positive.

Such as... having this place to turn to for both information and moral support.

My husband believes me and is supportive most of the time.

Being gluten free gets easier with practice.

My rabbit is so cute and funny (this might have sounded weird but he really does cheer me up).

Even if I'm not diagnosed, I was still able to dodge bullets.

The only thought I can't overcome is being deprived of exercising as much as I want to without experiencing muscle weakness.

What are your positive-vibe inducing thoughts?

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We found out we had celiac before we got in the kind of shape that some on this board did --- such as IrishHeart.

We do have this place to come to for help & moral support.

We can even pitch hissy fits here & it's understood.

We don't have a terminal disease.

We don't have to take pills for our disease.

Eating gluten free is not bad once you get the hang of it.

I'm getting better & will continue to do so.

My dog is too cute to handle.

My hubs is now gluten free also. That may sound weird since he has celiac also but it sure makes things easier.

3 weeks gluten-free for hubs & it appears he escaped gluten withdrawal.

We meet the nicest people here.

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Well. Hmm.

You can't be accurately tested but she'll test you anyway and use it as an excuse to blow you off.

Oookaay.

Positive note: you don't need her permission to be gluten-free.

Is there another way to get vitamin testing in your country? An independent lab? Here some online companies will give you the lab request, you go to the lab for the draw. They send the results to the company which sends it to you. Make sense? What about alternative practitioners -here we have Naturapaths that can order labs.

Have you cataloged your results from going gluten-free? Symptoms and relief? That can help you see the positives.

On the positive side of things, well, you at least understand what's going on (sort of) meaning ou know gluten-free helps you feel better. Lots of people are still stumbling around on that one.

Aaaannndd...we can help you figure out probiotics. You need to clearly lay out your dietary restrictions for us, though. We can only guess at vitamin levels, though-you really need tests for that. Dangerous to supplement by guessing.

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This is a lovely topic, thanks for starting it. :)

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Aw, Dani, I'm so sorry about the less than stellar doctor's visit. This is a great idea however...

I'm thankful that:

I have a diagnosis that shows I am not terminally ill.

I have supportive family and friends who treat the gluten-free diet as a serious matter.

I have access to all the knowledge and support that these forums provide. Coming here to ask questions and/or vent has kept me from complete meltdown on more than one occasion!

I have health insurance -- I cannot imagine dealing with all the tests and doctor's visits I've had in the last 1.5 years without it!

I have a sweet dog who adores me and is happy to keep me company even when I have a bad day and only want to lay on the couch.

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...The doc won't give a diagnosis without a gluten challenge...

Sounds to me like a very good doctor: willing to test you and wanting you to meet the conditions for an accurate result.

While many on the forum complain about doctors not willing to do the test at all or testing when someone is insufficiently glutened so getting false negatives, you complain about the correct procedure. Or am I missing something here?

I know, it is hard to do a gluten challenge when you are already gluten free for a while.

For me, I'm sure if I wouldn't have done the gluten challenge for 2 months before the biopsy, I would not have been diagnosed celiac.

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Sounds to me like a very good doctor: willing to test you and wanting you to meet the conditions for an accurate result.

While many on the forum complain about doctors not willing to do the test at all or testing when someone is insufficiently glutened so getting false negatives, you complain about the correct procedure. Or am I missing something here?

I know, it is hard to do a gluten challenge when you are already gluten free for a while.

For me, I'm sure if I wouldn't have done the gluten challenge for 2 months before the biopsy, I would not have been diagnosed celiac.

You are completely missing the part where the doctor is willing to test her now, without a challenge (and antibodies) so she can say "no antibodies" and refuses to test her now for vitamin deficiencies without positive Celiac tests.

So, the doctor is talking out of both ends of her, uhm, mouth. I'm trying to be polite.

Doctor is not even considering NCGI.

Doctor won't address her other, still existent symptoms which are limiting her life.

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While many on the forum complain about doctors not willing to do the test at all or testing when someone is insufficiently glutened so getting false negatives, you complain about the correct procedure. Or am I missing something here?

Not really. I consider the testing for a diagnosis thing as bad luck, and I'm complaining that she's not willing to test for deficiencies if my blood test comes back negative.

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that the doctor would test her now, to me looks like as a second option because the gluten challange is declined.

The OP can clear it up ...

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Okay, I'm searching for labs...haven't found one but I did find this http://www.vitunique.nl/Category/53-vitamintest.aspx

ZRT in the US will do hormone testing internationally. http://www.zrtlab.com/hormone-testing/frequently-asked-questions.html

Thank you so much Prickly. I'll look into them. I asked a friend today if she knew any private facilities and she said her sis might know one in Gothenburg too.. so I think I'll be having alternatives :-)

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that the doctor would test her now, to me looks like as a second option because the gluten challange is declined.

The OP can clear it up ...

She took a blood test, and said there will be no further testing if it's negative. That's what I understood anyway. I even suggested they biopsy the rash but she insisted DH doesn't have to be linked to Celiac.

I know that it's her job not to give a diagnosis without testing. I agree with her on that one.

Since I'm a positive person from now on, I've decided that I'm going to be persuasive and insist I need help. I'm not gonna let it be :-) It's my life we're talking about!

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She took a blood test, and said there will be no further testing if it's negative. That's what I understood anyway. I even suggested they biopsy the rash but she insisted DH doesn't have to be linked to Celiac.

I know that it's her job not to give a diagnosis without testing. I agree with her on that one.

Since I'm a positive person from now on, I've decided that I'm going to be persuasive and insist I need help. I'm not gonna let it be :-) It's my life we're talking about!

But you are aware that for a proper diagnosis you will need to go a gluten challenge first?

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She took a blood test, and said there will be no further testing if it's negative. That's what I understood anyway. I even suggested they biopsy the rash but she insisted DH doesn't have to be linked to Celiac.

I know that it's her job not to give a diagnosis without testing. I agree with her on that one.

Since I'm a positive person from now on, I've decided that I'm going to be persuasive and insist I need help. I'm not gonna let it be :-) It's my life we're talking about!

That's the testing trap - a doctor that offers to prove you aren't Celiac by running tests in a manner they shouldn't be run (on a gluten-free diet, only run one test) then pronouncing you don't have Celiac-when in reality all they did was run a test under the wrong or incomplete conditions. So after they've "proved" you aren't Celiac (with the test they already said would be invalid without a challenge) they can stop that conversation and turn it to something else or ignore you completely.

Happens all the time.

You've been gluten-free since January. Theres a snowball's chance in hell you have antibodies UNLESS you have a positive TTG in relation to another autoimmune disease ( if she ran the TTG).

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If you are comfortable living with knowing you feel better gluten free without a specific celiac diagnosis there is no point going back to making yourself sick for some whackjob doctor who wouldn't even biopsy your DH to confirm celiac. Not sure how the medical community is where you are, but you could try finding a less idiotic doctor. I wouldn't waste my time with the blood test, there's almost no chance you'll come up positive on it now after all the time you've been gluten free. Heck, my blood tests I had done the same day as my biopsy came back negative.

Being gluten free does get easier with time, and I've always been a salad and fresh veggie kind of person in the summer so I'll breeze through the summer not even noticing what I can't have. I agree on the bunny too, there really is nothing that brings quite the same kind of joy as watching a bun just be who they are. It's impossible not to smile when you watch one, no matter how bleak life seems. I can't seem to recall at the moment exactly what else you may have given up but when all else fails me I indulge in some dark chocolate.

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bennl1, yes I'm aware of that. If she were open to diagnosing through my DH, I would have been able to get through this with maybe one or two glutenations?

I had to say no to the challenge, because I've developed stomach cramps which I've never felt before. They hurt, and they hurt a lot. I think it's cruel what they did to me. When I first called to book the appointment, the nurse specifically told me to continue being gluten-free.. I hadn't developed any painful painful abdominal side-effects at the time.

Pricklypear, What's a TTG? I feel like I need to learn all these things. I should have learned them earlier actually. Do you have any reading references on them?

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By the way, sorry about turning this thread into a discussion about my appointment, this wasn't the aim :-( I wanted a collection of positive vibes, and I

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Dani, is there some reason you can only get probiotics through your doctor?

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Dani, is there some reason you can only get probiotics through your doctor?

There aren't any that are dairy and soy free otc at the pharmacy, and I've been told that buying them off the net is illegal in sweden :-(

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bennl1, yes I'm aware of that. If she were open to diagnosing through my DH, I would have been able to get through this with maybe one or two glutenations?

I had to say no to the challenge, because I've developed stomach cramps which I've never felt before. They hurt, and they hurt a lot. I think it's cruel what they did to me. When I first called to book the appointment, the nurse specifically told me to continue being gluten-free.. I hadn't developed any painful painful abdominal side-effects at the time.

Pricklypear, What's a TTG? I feel like I need to learn all these things. I should have learned them earlier actually. Do you have any reading references on them?

This explains false neg/pos on Ttg.

http://americanceliac.org/celiac-disease/diagnosis/

The University of Chicago Celiac Center has excellent info on testing and stats. http://www.cureceliacdisease.org/living-with-celiac/guide/fact-sheets

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There aren't any that are dairy and soy free otc at the pharmacy, and I've been told that buying them off the net is illegal in sweden :-(

Are Enzymedica products available there? They are free of gluten, soy, dairy.

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Are Enzymedica products available there? They are free of gluten, soy, dairy.

Those were really helpful, thanks again, prickly queen of all pears!

I'll look it up on google.se and see if anyone is selling Enzymedica :-)

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So I finally went to the doc today, and as I feared, it didn't go well. The doc won't give a diagnosis without a gluten challenge, but suggested we test for anti-bodies in hopes that there might be some left in my system (which I doubt will test positive). I asked if they would test for any deficiencies since I feel poorly, and she said it all depended on the presence of the anti-bodies. Which means I'm not getting my supplements or probiotics. I tried to explain to her that exercising makes me lose strength, but she insisted it was due to the fact that my body isn't fit. Even when I told her that the fatigue and weakness occured WHILE my muscles were in top shape. This means I'm not going back to being able to exercise as I please again because I'll be struggling to push my stupid sore muscles to work for god knows how long. And ALLLL of this means I might need to lie to my family about being diagnosed, so that they'd take me seriously.

I don't want to feel desperation though. In order to repel feeling down whenever something negative is expected to happen, I'm going to try to come up with things to think about that will allow me to stay positive.

Such as... having this place to turn to for both information and moral support.

My husband believes me and is supportive most of the time.

Being gluten free gets easier with practice.

My rabbit is so cute and funny (this might have sounded weird but he really does cheer me up).

Even if I'm not diagnosed, I was still able to dodge bullets.

The only thought I can't overcome is being deprived of exercising as much as I want to without experiencing muscle weakness.

What are your positive-vibe inducing thoughts?

Hi Dani, I'm sorry to hear the doctor wasn't very helpful, but I am not surprised. I went gluten free for a few weeks before managing to see a doctor and she wasn't that impressed, even though my worst symptoms cleared up on a gluten free diet!

She simply disregarded any possibility of me being coeliac, said it was IBS and wanted me to go back on eating gluten even though she wasn't that keen on testing me for it! Why would I want to go back eating food that I know was hurting my body, when the doctor advising me to do so wasn't supportive and frankly didn't seem slightly bothered about a word I was saying!

Although doctors are often unhelpful, there are plenty of other reasons to be positive! Great idea for a post, it's nice to think about the positives, not dwell on the negatives even though its difficult always feeling ill and feeling as if no one is listening!

I'm lucky to have a caring, sensitive boy friend who is very supportive, encouraging and takes great care of me whenever I am ill.

My boyfriends mother who knows a lot about the illness and has been very informative and supportive.

Wonderful parent's (who were confused at first) but now spend hours in the supermarket buying me safe food!

Starting to feel better after being gluten free for about a month! (This is the first month, in perhaps the last 4 years when I haven't been painfully ill or vomiting!)

Living in England and receiving free healthcare! (Although I've had plenty of bad experiences with doctors I am hoping to meet some understanding and positive ones soon!)

Enjoying eating again without being painfully ill after every meal!

Being excited about the possibilities of a healthy, gluten free life!

And meeting so many kind and encouraging people on this website, all of whom have helped me understand why I have been ill and taught me so much.

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Dani, I am SO glad you will now be able to get the vitamins! YAY! Yes, Prickly, Queen Of All Pears, found the resource for you. I think you dubbed her right & we should call her that from now on.smile.gif

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