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up-late Rookie
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Posted

I'm about at the end of my rope, doc is hopless, all the docs here are hopeless, allergy clinic didn't do coeliac test pre elimination diet so now they want me to do a gluten challenge to tell me what i already know and am already doing, how did these idots get a licence. Youngest son just got back bloods, he has anemia, waiting for his coeliac test to come back, eldest no one can't pin down long enough to get blood from.

gluten-free my stomach has settled, fewer itchy rashes, not in excrutiating pain anymore just can't get out of bed, sleep more and more, piling on weight but not eating much, can't work, boss fed up with sick days, I'm about to lose my job, big financial burdens right now. Taking lots of stimulants to try and stay awake, not working. Fed up with the whole thing, 1/2 my life has been wasted in drs offices, no one listening again, how long do I have to put up with this? Just want to go to bed and not wake up.

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flourgirl Apprentice
flourgirl
Posted

Sorry to hear that you are having so many troubles. Not sure that I have any advice to give....mostly sympathy. Been there...as have so many others. You don't say how long you've been on the diet. Are you absolutely sure that you've eliminated every trace? As far as going back to gluten for a positive test...is it necessary, do you need that formal diagnosis for insurance? There is nothing in this world that could make me consciously put gluten anywhere near my mouth!!! I never ever want to be so sick again....not for anything.

As far as sleeping all of the time...I went through about 6 months of wanting nothing at all except to sleep. I was weary 24/7. Only stubborn will got me up and going, and I kept going as long as I could. I am a goal driven person, and have a strong desire to "accomplish".....anything. Maybe that is my own craziness. I am getting better as far as wanting to sleep all of the time...but I still get bone weary and have to fight the urge to nap the afternoon away. Life is just too short.

Can't help you with doctor advice either. We all have horror stories. You just have to take control of your own health...do what you know to do is right for you. Question, read, learn and insist. Doc's are not all-knowing, are human complete with failings and short-comings. I think they run into major problems in trying to live up to that image, which is more and more impossible to do. There is just too much knowledge out there for them to keep on top of. Too often they bluff, or depend on outdated info, or just treat us with condescension as if we are just hysterical "children" who can't possibly know our own bodies or able to research and learn without them.

Hope you can hang in there and stay on the path to wellness. If nothing else, we're pulling for you.

up-late Rookie
up-late
Posted
  • Author

Thanks flourgirl, it's really frustrating I'm just so fed up.

I've been on the diet in its strickest sense a little over a year. I cut out the obvious gluten before the allergy clinic to see if it did anything and saw a big improvement, I was so sick I couldn't wait any longer. I asked the doc to send me there after a psychologist insisted, I've been doing the mental vs physical dr to dr tennis match for years ("it's all in your head" says the GP and sends me to a psych, "go back and tell the GP to do his job" and psych sends me back to the GP). The clinic should have tested me straight up, they must have known I would have still been eating some gluten via sauces, processed food etc. They cut everything out of my diet and kept it lean till my symptoms dissapeared so by the time I got to the wheat challenge I was so senitive I barely lasted 3 days. They've said I have a wheat intollerance possibly coeliac, symptoms fit the profile and blood test was positive, only took 18 years to get that far.

Apart from the occassional accidental glutening. I don't have it in my diet at all, I cook and stick to the resturaunts and dishes I know I can trust. I've finished the elimination diet so I know what other things give me trouble (dairy, amines, preservatives) seen the dietitian, taking supliments, got the diet balanced so I should be getting progressively better. I did need the diagnosis for gov subsidised bone density testing and so my darn GP will take me seriously. I'm also having problems with social security who won't pay benifits unless you're practically bleeding to death on their carpet.

Biggest concern at the moment is I just seem to have frozen, it's like I can't move, freezing cold, takes a few hours to wake up and get out of bed, I'm not in pain anymore which is great but now I'm exhausted, overwhelming fatigue, it feels like being in shock after an accident. About the only thing keeping me going is my kids have been sick as well so I want to get to the bottom of it for their sake otherwise I would have stopped fighting years ago.

ShayFL Enthusiast
ShayFL
Posted

Girl!!! Get your thyroid tested right away!!!! And dont settle for a "normal" on the TSH if it is above "2". Most do best with it under "1" and some (like me) need my TSH fully suppressed to not have your symptoms.

If your doc. will not listen or order Thyroid panel, order it yourself at Healthcheck or directlabs.

And if you test hypothryoid, I recommend Armour natural. But by all means, get yourself out of hypo state even if you have to take Synthroid.

You can PM me if you need more information about Thyroid.

up-late Rookie
up-late
Posted
  • Author

I think it could be my thyroid, mum just told me tonight her and my GM have thyroid disease, I've had tests previously and as usual the doc is an idiot, they do things like order tests then when they come back they don't know what they mean, so they call the lab and don't want to admit they don't know what the lab is talking about. I spent 4 hrs up the hospital this afternoon, the nurse was rude and I still didn't get to see a doc. I'm thinking of going to see a natropath or Chinese herbalist, these GPs out here don't have a clue.

I don't know if we have the tests you mentioned out here (Australia) some of the sites I found for the products you mentioned only sell to the US and Canada but I'll keep looking, it's better if I can get it on script because it's a lot cheaper. This started about a month ago and I can't believe how quickly I've deteriorated. Is there anything I can use to hold me over till I get it sorted?

souzahanson Apprentice
souzahanson
Posted
I'm about at the end of my rope, doc is hopless, all the docs here are hopeless, allergy clinic didn't do coeliac test pre elimination diet so now they want me to do a gluten challenge to tell me what i already know and am already doing, how did these idots get a licence. Youngest son just got back bloods, he has anemia, waiting for his coeliac test to come back, eldest no one can't pin down long enough to get blood from.

gluten-free my stomach has settled, fewer itchy rashes, not in excrutiating pain anymore just can't get out of bed, sleep more and more, piling on weight but not eating much, can't work, boss fed up with sick days, I'm about to lose my job, big financial burdens right now. Taking lots of stimulants to try and stay awake, not working. Fed up with the whole thing, 1/2 my life has been wasted in drs offices, no one listening again, how long do I have to put up with this? Just want to go to bed and not wake up.

Try going to wrongdiagnosis.com and put in lyme disease, celiac, and multiple schlerosis and look at the misdiagnosis section. I agree have your thyroid tested and more than just TSH level. Gaining weight but not eating? I would also look into kidney function. Does you weight gain appear to be water weight?

What state do you live in, I ask because lyme disease can cause weight gain. I'm a little fixated on lyme right now only because I think that is my current problem, but waiting for lab results. The rash may narrow things down a little. Nothings guaranteed but it's a start.

Ursa Major Collaborator
Ursa Major
Posted

You sure sound hypothyroid and probably have adrenal fatigue as well. Get tested for both.

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ShayFL Enthusiast
ShayFL
Posted

You really need tests first because you can make it worse if you take things for thyroid without addressing a low adrenal state. Yes to a nauropath!! They can help you with both thyroid and adrenal. Dont delay!!

up-late Rookie
up-late
Posted
  • Author

My kidneys should be OK, I get them looked at regularly, had the scans, x-rays, bloods etc (I have a genetic kidney defect that causes me to get a lot of stones) I have a bit of scaring on one but they're functioning fine, my GM died of kidney failure and mum is diabetic so they were the first things my family looked at when I got sick. Osteoperosis is on the to check out list as well.

I do hold fluid but it's been better since the change of diet, most of the weight is fat though and I know I'm not getting enough nutrients from the food either because a lot of it's going through undigested again. It did this last time, I started off losing a lot of weight quickly then as soon as I started to put it on I couldn't stop putting it on. It's one extreme or the other.

I live in an aparment near the city so ticks aren't really a problem. It's been a long time since I was last in an area prone to ticks. I think it's more likely thyroid or a malabsorption problem, what's going in is not matching how I feel or what I'm seeing in the mirror.

Good luck with your tests, I hope they get it sorted out soon.

Ursa Major Collaborator
Ursa Major
Posted

You know, just because you haven't lived in a tick infested area in a while doesn't mean you can't have Lyme disease. Lyme Disease can be dormant for a very long time before you actually get sick.

Anyway, one thing at a time. The thyroid and adrenal problem should be checked out first.

This site has some really good info: Open Original Shared Link

And it is true, if your adrenal glands aren't functioning right (and I bet they aren't with your symptoms), then just taking thyroid meds without addressing the adrenal fatigue will not help you to get better. First you have to address the adrenals before treating the thyroid.

ravenwoodglass Mentor
ravenwoodglass
Posted

There is one thing more that should be mentioned in additon to the advice already given.....and I really hate to even say it but...... Is that your bird? If it is who feeds him and cleans up the cage? You may be getting enough airborne gluten flying around when taking care of your friend to keep you sick. I fought to keep my parrot for a long time after diagnosis but the repeat CC ended up just being too much as I was the only one here to care for him.

up-late Rookie
up-late
Posted
  • Author

I don't have him anymore, I had considered the dust and had my allergies tested for it. He was on a pellet diet not seed so there was no wheat (although it did have barley and oats in it). The symptoms I have ATM are different to when I get glutened.

up-late Rookie
up-late
Posted
  • Author

Thanks everyone :) , it's means a lot to me to have some support.

I went to a new GP and got some bloods for thyroid, iron and vitamin levels and she's sent me for a bone scan next week (she got it for me on medicare without the confirmed diagnosis so I'm happy about that) even though she didn't come up with much she did take the time to explain the diagnostic process and was sympathetic so I don't think I'll go back to my old doc. If the tests come back within the normal range (they are ususally on the low side) I'll be getting a copy and going to see a natropath to follow up on the thyroid test which I'm sure has something to do with it. I started taking an iron suppliment after I had the tests as well so hopefully that should help in the meantime. I'm looking for a new job as well.

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