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Anyone Misdiagnosed?

probonohoe

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IrishKelly Contributor
IrishKelly
Posted
alright a little update here and another wonderful hospital story

Corey had to go in last night, I had to stay home since i'm pregnant and sick.

Corey:" What do you mean you are giving me Buscopan? I've been waiting for 5 hours and you want to give me Buscopan??" (He ended up getting morphine thankfully)

Corey: "I already told you not to bother testing my red blood cells. They always come back fine, even an hour before my surgery when I had a hole in my bowel (that they didn't know about until after they removed it of course). You are wasting money."

Doctor: "Oh well you have Crohn's we have to make sure everything is ok.'

Corey: "I already told you I don't think I have Crohn's. Are you listening?"

Corey:" Are you going to test me for Celiac disease?"

Doctor:" No that's for your GI to do."

Corey:" I already told you I don't have a GI. No one will take me. Are you listening?"

And that about sums it up. He's home now and sleeping. :blink:

Sounds like you need to extend your driving if at all possible to a GI dr. farther away, or do a search on a celiacs specialist in your area ;)

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probonohoe Newbie
probonohoe
Posted
  • Author

I know I should probably start a new thread but oh well.

Corey's family doctor ordered blood tests yesterday-get the results in 2 weeks. Yah, he WAS NEVER tested for Celiac disease-and I thought that his old GI was a really smart guy. :angry:

We cleaned out most of the cupboards and went grocery shopping, he was quite disappointed in all the things he couldn't buy, but did he ever get excited when he found gluten-free cookies!!

Last night he was still VERY sore, but he said that he didn't get his usual 1:00 am attack, when he usually likes to snack on crackers and such. I know that he wasn't up all night, and he was sleeping soundly when I woke up.

And about the GI problem, it isn't that he can't find a doctor who is taking patients, he can't find a doctor who will take HIM. Its a terribly long story, but his old GI won't take him back because his receptionist doesn't like him, and everyone else doesn't want him because he's just too much work. Even the "temporary" Vancouver doctor doesn't want him back because he can't find anything wrong with him.(We live in Kamloops) His GP has been trying to get someone to take him, but doctors here don't have to if they don't want to.

Maybe the GI problem will change if he gets a positivie blood test. Then they will see that he IS treatable.

Nancym Enthusiast
Nancym
Posted
probonohoe

Ha! That's quite a user name. Does it mean what I think it means? Free prostitute? Or perhaps you were refering to the gardening variety? :)

IrishKelly Contributor
IrishKelly
Posted
I'm so sorry your husband is going through this. If he can't get anyone to test him for Celiac, I would suggest trying a gluten-free diet and maybe getting some basic tests done through Enterolab. I'm not one to think that continuing to eat gluten just so some tests may come back positive is a good idea. I hope this is the answer!

BTW-I was told I had "colitis", then IBS, then told it was all in my head and that I was fine and that I should just take Tums and be quiet. I've never had an official diagnosis because I went gluten-free before I knew about the testing. But I'd never consider eating gluten again just to get tests done.

YEP, i hear ya, the exact same scenario here!! By time a good dr. told me it was a gluten sensitivity problem i immediately went off the gluten just so i could actually get better, forget those stupid "i need reassurance invasive tests", i did take the blood test before starting the diet though and it still came back negative which the dr. had already told me there was only a 50% chance of it being accurate anyway, so what does it matter anyway. If i can heal myself with immediately starting the diet then what's the point?

probonohoe Newbie
probonohoe
Posted
  • Author
Ha! That's quite a user name. Does it mean what I think it means? Free prostitute? Or perhaps you were refering to the gardening variety? :)

LOL you are not the first to ask. I used to play for a slo-pitch drinking ball team called the Halston Hoes. Everyone had to have a "HOE" name. There was Yo-hoe, Ivanhoe, Slowhoe among others, and every time someone dove for the ball or slid into a base that was known as a Hoedown. I use it because my first name is almost always taken (Crystal), and well, no one calls themself Probonohoe. :blink:

IrishKelly Contributor
IrishKelly
Posted
I know I should probably start a new thread but oh well.

Corey's family doctor ordered blood tests yesterday-get the results in 2 weeks. Yah, he WAS NEVER tested for Celiac disease-and I thought that his old GI was a really smart guy. :angry:

We cleaned out most of the cupboards and went grocery shopping, he was quite disappointed in all the things he couldn't buy, but did he ever get excited when he found gluten-free cookies!!

Last night he was still VERY sore, but he said that he didn't get his usual 1:00 am attack, when he usually likes to snack on crackers and such. I know that he wasn't up all night, and he was sleeping soundly when I woke up.

And about the GI problem, it isn't that he can't find a doctor who is taking patients, he can't find a doctor who will take HIM. Its a terribly long story, but his old GI won't take him back because his receptionist doesn't like him, and everyone else doesn't want him because he's just too much work. Even the "temporary" Vancouver doctor doesn't want him back because he can't find anything wrong with him.(We live in Kamloops) His GP has been trying to get someone to take him, but doctors here don't have to if they don't want to.

Maybe the GI problem will change if he gets a positivie blood test. Then they will see that he IS treatable.

Yes, i understood what you meant by the dr's not wanting to take him...i was just hoping that maybe if you went further away and started fresh with a brand new dr., but i'm not quite sure if you need a referral where you live or not. Can you start all over again? If so, that's what i would do! It sounds like he needs to find a new dr. that will listen to ALL of his symptoms starting with many years back.

jerseyangel Proficient
jerseyangel
Posted
LOL you are not the first to ask. I used to play for a slo-pitch drinking ball team called the Halston Hoes. Everyone had to have a "HOE" name. There was Yo-hoe, Ivanhoe, Slowhoe among others, and every time someone dove for the ball or slid into a base that was known as a Hoedown. I use it because my first name is almost always taken (Crystal), and well, no one calls themself Probonohoe. :blink:

I was wondering about your username, too. I thought maybe you were a lawyer :D

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probonohoe Newbie
probonohoe
Posted
  • Author

"...but i'm not quite sure if you need a referral where you live or not"

yes unfortunately we do need a referral to see ANY specialist, and that doctor can ask for a new referral every 6 months. I'm sure if we move out of BC we would have an easier time. As far as I know, BC is the only province in Canada where the doctors are contracted instead of employed under the public system. They still bill the province for services though. According to the College of Physicians and Surgeons of BC, you REALLY have to prove abandonment, discrimination and emergency. The laws are set up to protect the doctors, and although the public system is great for not having to pay for services, you get the shaft in patient care more often than not. <_<

IrishKelly Contributor
IrishKelly
Posted
"...but i'm not quite sure if you need a referral where you live or not"

yes unfortunately we do need a referral to see ANY specialist, and that doctor can ask for a new referral every 6 months. I'm sure if we move out of BC we would have an easier time. As far as I know, BC is the only province in Canada where the doctors are contracted instead of employed under the public system. They still bill the province for services though. According to the College of Physicians and Surgeons of BC, you REALLY have to prove abandonment, discrimination and emergency. The laws are set up to protect the doctors, and although the public system is great for not having to pay for services, you get the shaft in patient care more often than not. <_<

Oh Wow, I always wondered what the circumstances and qualifications were in Canada regarding seeing the dr's...since we have health insurance circumstances here i can see how things are very different now. I would definitely just start the diet then...that IS THE BEST TEST available anyway, i bet he'll start feeling better within a couple weeks...but for his situation i would say it may definitely take one to two years of dollowing the diet. Good Luck and please let us know hoe things turn out for him ;)

Rusla Enthusiast
Rusla
Posted
Oh Wow, I always wondered what the circumstances and qualifications were in Canada regarding seeing the dr's...since we have health insurance circumstances here i can see how things are very different now. I would definitely just start the diet then...that IS THE BEST TEST available anyway, i bet he'll start feeling better within a couple weeks...but for his situation i would say it may definitely take one to two years of dollowing the diet. Good Luck and please let us know hoe things turn out for him ;)

Not only is the health care system different from province to province here but so is costs and seeing doctors. Alberta and BC are the only two provinces where we have to pay health care premiums.

micaldrew Newbie
micaldrew
Posted

Hi! I am new to this site. I started having problems in 1995, the year my first child was born. I was too embaressed and not sure of what was going on with my body that I did not seek a doctor until 2000. I was diagnosed with IBS. After having my 3rd child, I was really sick. I lost about 30 pounds in 2 months. I started getting migrains also. My doctor did everything he could think of but nothing was working. After about 3 months, he sent me to a specialist, who then sent me back to my regular doctor, who sent me to another specialst. They found out I have colitis but that is all under control and don't know why I am still having problems. In 2002, they suggested that I have signs of celiac in my stomach or somewhere. I went on the diet without much support and knowledge. I did not know I couldn't even touch the bread to make peanut butter sandwiches for my kids. I was tired of doctors and decided to just suffer. I have had enough of suffering now and went back to a different doctor in the same office. She is great! We are going to do that test where they put the tube down the throat and take another look. I think either way that turns out, I am going to try the diet all over again. I can not go on like this. I hate leaving my home anymore. Also, do any of you also suffer from having a lot of iron in the blood (hemochromatosis). We are doing another test with that to double check that. Didn't know if this was something common for ciliac.

lonewolf Collaborator
lonewolf
Posted
Hi! I am new to this site. I started having problems in 1995, the year my first child was born. I was too embaressed and not sure of what was going on with my body that I did not seek a doctor until 2000. I was diagnosed with IBS. After having my 3rd child, I was really sick. I lost about 30 pounds in 2 months. I started getting migrains also. My doctor did everything he could think of but nothing was working. After about 3 months, he sent me to a specialist, who then sent me back to my regular doctor, who sent me to another specialst. They found out I have colitis but that is all under control and don't know why I am still having problems. In 2002, they suggested that I have signs of celiac in my stomach or somewhere. I went on the diet without much support and knowledge. I did not know I couldn't even touch the bread to make peanut butter sandwiches for my kids. I was tired of doctors and decided to just suffer. I have had enough of suffering now and went back to a different doctor in the same office. She is great! We are going to do that test where they put the tube down the throat and take another look. I think either way that turns out, I am going to try the diet all over again. I can not go on like this. I hate leaving my home anymore. Also, do any of you also suffer from having a lot of iron in the blood (hemochromatosis). We are doing another test with that to double check that. Didn't know if this was something common for ciliac.

Welcome! I'm afraid that not many people will see your post here in an existing thread, so I encourage you to start a new thread introducing yourself. You will get lots of good advice and help.

I was diagnosed with "colitis" a long time ago too. Then they told me that the term was out of date and it was "IBS". These are both dianoses that mean the doctors don't know what's wrong with your digestive system.

I don't know anything about hemochromatosis, sorry. Maybe someone else does.

Good idea to try the diet again, no matter what the tests show. You might have a problem with gluten even if tests are negative for Celiac Disease.

IrishKelly Contributor
IrishKelly
Posted
Hi! I am new to this site. I started having problems in 1995, the year my first child was born. I was too embaressed and not sure of what was going on with my body that I did not seek a doctor until 2000. I was diagnosed with IBS. After having my 3rd child, I was really sick. I lost about 30 pounds in 2 months. I started getting migrains also. My doctor did everything he could think of but nothing was working. After about 3 months, he sent me to a specialist, who then sent me back to my regular doctor, who sent me to another specialst. They found out I have colitis but that is all under control and don't know why I am still having problems. In 2002, they suggested that I have signs of celiac in my stomach or somewhere. I went on the diet without much support and knowledge. I did not know I couldn't even touch the bread to make peanut butter sandwiches for my kids. I was tired of doctors and decided to just suffer. I have had enough of suffering now and went back to a different doctor in the same office. She is great! We are going to do that test where they put the tube down the throat and take another look. I think either way that turns out, I am going to try the diet all over again. I can not go on like this. I hate leaving my home anymore. Also, do any of you also suffer from having a lot of iron in the blood (hemochromatosis). We are doing another test with that to double check that. Didn't know if this was something common for ciliac.

Hi, if you go to the "view net posts" and look on page 2 or 3 find the topic titled

Could Pregnancy Have "triggered" Celiac?

This will answer alot of your questions and give you lots of support :)

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      Son's legs shaking

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    • lizzie42
      Son's legs shaking

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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