I Feel So Helpless Now...

[num1habsfan]

Today I went in to see my family doc, to talk about what the guy in Regina said. Well, I read the letter from the specialist in Regina--he still claims its IBS, and in fact, accused me of not even having Celiac!!!!

In order for me to go on the IBS diet to clear it out, I'd have to go off gluten-free for around 4 months (thats what the specialist had told me, and my family doc didnt disagree)...but I'm so sensative to gluten that coming in contact with a few crumbs makes me sick for at least 2 days...I honestly think it would kill me if I tried the IBS diet

Then family doc also said all those test they did on my stools for infections came back negative...

THEN my family doc accused me of all this just being "in my head" and told me I should see a psychiatrist ... what wtf for?? I dont suffer from depression, I DONT think negatively, i DONT give up hope on things...its NOT a mental problem!!

He said to keep taking Buscopan...but all that does is knock me out and maybe give an hour or 2 relief...

I told him to send me for allergy tests again, and he says he will, but thinks it will be a waste of time...

I asked about being sent out of SK (to maybe Calgary) and he had no clue how that could be done, but he'd find out how I could get to Calgary...and again, told me I'd be wasting my time since they wouldnt be any more advanced than the specialists in SK and they'd tell me nothing (his words, not mine)...my parents would kill me probably if I actually eventually get accepted to see a dude in Calgary, because even tho it was their idea at first, even THEY are accusing me of not being sick now, so if I do get to see someone in Calgary my guess is that they wouldnt even drive me...

If I honestly have to live in this pain for the rest of my life, theres no point of even trying to make a career the way I am trying. i am falling behind a bit in school because of the class time I miss by being in the bathroom, but I manage to catch up. But there is NO WAY I could ever have a career if I have to live with this...NEVER. I'd be better off becoming a bum now...

I totally feel so helpless... *cries*

~lisa~

[Ursa Major]

Dear Lisa, you must NEVER give up. Just because all those doctors and your family are in the majority doesn't mean they're right. There is no such thing as IBS, and if you get a terrible reaction to gluten, the so-called IBS diet is utterly ridiculous for you. Don't give in to all those clueless people, it's your body, they can't force you to eat gluten!

Have you tried a lectin free diet? You may be intolerant to lectins. Follow the link in my signature to find out more.

I was told by stupid doctors and my own husband that my problems were psychological, too, for many, many years. I knew they were wrong, and it took me 52 years to figure out what was making me sick.

You have already figured out part of the puzzle (the gluten). If you persevere, I am sure that in the end you'll figure out the rest.

I suggest to forget about conventional doctors (including specialists), and to try a naturopath. There must be somebody who has better suggestions than putting you back on gluten and seeing a psychiatrist!

Sorry if I sound angry, but I am awfully angry on your behalf. I can imagine how upset you are by all of this. I wished I could go and yell at a few people! Hang in there, and don't give up on a career quite yet. I will pray for you.

[Nantzie]

{{{{Hugs}}}} Lisa...

I wish I could make it better for you.

No matter what, you've GOT to keep going on your career. Life has a way of making a path for things even if you can't see it now. If you give up on your career, you will always be dependant on your family.

There is never a time in your life where you're less in control of things than when you're in school. In an office environment, if you have a medical problem where you have to leave your desk quite often, there are other people who can pick up the slack for you. And since you're such a hard worker, most people won't mind doing it. I used to own a business, and you wouldn't believe the people who wanted a job but didn't want to actually DO any work. The ones who came there to work were priceless. And this happens in any business, big or small.

You speaking about your dedication to your classes says volumes about your character to me. And when co-workers and bosses see that, they will have the same respect for you that I do.

I call it being a worker bee. I'm like that, so is my husband and so are my closest friends. My husband used to be so tired (because of med problems of his own) that when he got his current job which is a mid-sized multi-state company, he actually negotiated as part of being hired, that he would come in late in the morning. Sometimes he wouldn't even get there until 11am. But he worked his @ss off when he got there, sometimes working until 6 or 7 at night just to get something done. He also worked here and there on the weekends from home. So even though he may have appeared to not be the best employee from one perspective, the truth was, he was. Now, 7 years after being hired there, he is actually head of the whole multi-state department and reports only to the owner of the company. All because, despite his "negative" employment qualities, the company knows that they can count on him to get the job done.

So don't give up. Just put one foot in front of the other and things will open up in front of you.

More {{{HUGS}}}

Nancy

[brizzo]

All doctors have a problem with Celiac Disease for several reasons...

1. It is a new disease that wasn't spoke of in med schools before mid 1990's. any doctor who graduated prior to this was never taught this.

2. The few doctors who do know this disease learned about it through med journals that ALWAYS show the most severe cases. I have DH that looks NOTHING like DH pictures on the internet. But I was tested potive.

3. For a Doctor to admit that you "could" be right would require him to humble himself enough to admit that he could have overlooked something that you didn't. This goes against everything taught in medical school. Dr's are taught in medical school that THEY are the top of the food chain and EVERYONE ELSE is beneath them. This is honestly taught!

Do yourself a favor, go to enterolab.com, at least get the fecal antibody test done, bring your results to your doctor. Then , if he refuses to believe, then he is refusing medical science. Dr's are NOT taught to dismiss medical science... EVER!!!! good luck, and remember.... No one cares more about your medical well being more than YOU. Be proactice...not reactive!

[num1habsfan]

All doctors have a problem with Celiac Disease for several reasons...

1. It is a new disease that wasn't spoke of in med schools before mid 1990's. any doctor who graduated prior to this was never taught this.

2. The few doctors who do know this disease learned about it through med journals that ALWAYS show the most severe cases. I have DH that looks NOTHING like DH pictures on the internet. But I was tested potive.

3. For a Doctor to admit that you "could" be right would require him to humble himself enough to admit that he could have overlooked something that you didn't. This goes against everything taught in medical school. Dr's are taught in medical school that THEY are the top of the food chain and EVERYONE ELSE is beneath them. This is honestly taught!

Do yourself a favor, go to enterolab.com, at least get the fecal antibody test done, bring your results to your doctor. Then , if he refuses to believe, then he is refusing medical science. Dr's are NOT taught to dismiss medical science... EVER!!!! good luck, and remember.... No one cares more about your medical well being more than YOU. Be proactice...not reactive!

Well dont forget that its not even Celiac they are looking for (and the only proof I even have that I do have Celiac is by starting the diet...and the only proof that I have DH is by going on Dapsone and it helping me out)...

Theres still a few other ideas to throw at the docs...Who knows, maybe its even refractory sprue?? But the problem is that none of them are willing to listen to any of the other suggestions I have to say, they are all just assuming "no further testing" and thats it...

BLAH.

~Lisa~

[rinne]

I dont suffer from depression, I DONT think negatively, I DONT give up hope on things...its NOT a mental problem!!

I believe you. I think that doctor is abusive and it makes me very angry because they get away with this kind of stuff way too often. This is medicine! Let's see, gluten makes you really sick and you have told them that but that is not enough they want you to damage yourself so that they can see for themselves. It's like telling someone you have a headache and they hand you a crowbar and ask yourself to hit your own head so that they can see that there is a reason.

This is just my opinion but I think you need a new doctor, there are good ones out there though they may be rare. One positve thing about our system is that you can shop around and you don't have to pay to "interview" every doctor.

Please trust yourself.

I am going to a private clinic in Calgary and they will do the Entero lab test for me, also other tests. If you want the name of the clinic PM me.

[num1habsfan]

This is just my opinion but I think you need a new doctor, there are good ones out there though they may be rare. One positve thing about our system is that you can shop around and you don't have to pay to "interview" every doctor.

Yeah see my problem is that I've known seen....5 doctors, including 2 specialist...but like I said, they dont listen to anything I ever have to say/suggest!!

~lisa~

[mda10]

Yeah see my problem is that I've known seen....5 doctors, including 2 specialist...but like I said, they dont listen to anything I ever have to say/suggest!!

~lisa~

I'm not too familiar with your history and am just returning after 2 years off and lots of experimentation. I have celiac confirmed by biospy and Ab tests. I would also say I have IBS in addition to other autoimmune issues (Hashimotos, ITP, leukopenia, etc):

1)I think they should rule out IBD. My wife has Crohns and I'm all too familiar with the diagnosis here. Ulcerations usually are in the terminal ileum but could be elsewhere and not detected with the endoscopies.

2)I think seeing a psychiatrist might be good or someone (an internist) that can prescribe SSRIs. Believe me, I objected to this as well, but kept an open mind. I have a very strong science and medical background. Dont let the psycho stuff bias you. 90% of the body's serotonin receptors are in the gut. You may not be depressed, but an "off-label" use of an SSRI like Lexapro may calm your intestines. But be careful of the side effects. We're talking low dose. I used 10 mg. Lexapro and it takes 6 weeks to work.

I used to feel spasms in my gut and many of the symptoms you mention even after going gluten-free. I currently took myself off of Lexapro cause I was tired but I think this may be my Hashimoto's/thyroid. And all my GI symptoms have come back. I think I will try Lexapro again 5-10mg dose which is pretty small. It takes about 4-6 weeks to work and it impacts everyone a little differently. Admittedly, not for everyone, and I was VERY anti-SSRIs and think they are overprescribed.

3)I also like your allergan approach. I believe in that as well. I am sensitive to other foods as well. Plus you can be one of the 20% of the population that is "sensitive" to gluten without having celiac.

Good luck. It'll all work out. But be wary of the mind-gut relationship. There is truth to that with the serotonin receptors in the gut.

[Nantzie]

90% of the body's serotonin receptors are in the gut.

I remember reading a paper about this. I'll try and find the link for it. I'm sure I've got it bookmarked somewhere.

I know that a lot of my glutened symptoms are psych and neuro, so that has always made a lot of sense to me. If I get irritable and emotional, it's a pretty good indication that I've been glutened. But that's different from a doctor suggesting that basically it's all in your head just because he doesn't have any answers.

If your doctor would just look you in the eye and say I don't know what's causing your symptoms. I don't know. I wish I did. But I don't.

If your doctor had said something like, Hey, I believe you have all these symptoms and I haven't been able to figure out what's causing them. It's got to be hard to live with that kind of pain/uncertainty/frustration all the time, so you might want to find someone to talk to about all that you're dealing with. THAT I would consider appropriate.

Because sometimes things just suck and you need to talk to someone who isn't going to roll their eyes at you. Ya know?

Now that the holidays are coming up, I'm starting to take St. John's Wort, research grade, through HBC Protocols. www.hbcprotocols.com I have a hard time with the holidays because both my parents died (12 years apart) in December. My kids are 4 and 2 this year, and my 4yo daughter is already talking about it. I insist on enjoying Christmas.

St John's Wort also has the side benefit of being anti-viral, which cuts down on the winter colds and flus. (Bonus!). It also doesn't make you feel foggy or not care about things. It really just takes the edge off. I still get sad, angry, frustrated, scared, lonely about my parents (and various other things that life brings) when I take it, but I'm not overwhelmed by them. It really, really helps me a lot.

But, if I remember your symptoms right, your symptoms are quite physical and something to take seriously. If I remember right you've actually been having blood in your bowel movements right? I think I remember that right. I remember thinking at one point that if I was your mom, I'd be parked in the waiting room at the doctor's office until I got some answers.

{Hugs}

Nancy

[chgomom]

IN my opinion lots of docs all they do is push IBS, GERD, excercise more, take a pill this that or the other thing. My new GI doc laughed, when I said they tried pushingh anti depressants on me, and she said...well...from what I seeof your records...eveytime you've gone to emergency its been within 4 hrs of a meal....its been all GI....and frankly there are "colleagues" that are still in the old school of thought.

If you haven't already, talk to a rhuematologist...thats how I ended up finding out with the blood work. I went...layed it all out for him and said tell me what I don't have and he ran 27 different labs....including a celiac panel and all the nasty inflammation levels. Had I not pushed, and had I not basically fired my GP....I would have suffered and been on more medication.

Now....after letting him blow me off for nearly 4 yrs...I have osteoporosis in addition to the Celiac and I'm only 28.

Don't EVER take no for an answer, and don't ever back off until you have a piece of paper with atleast a lab test saying definitively.

I hate to see this happen.....it echoes all too familarly with me.

[Guest nini]

Oh Lisa, don't ever give up... I agree that a naturopath might be a better option at this point, but you have to be careful and find a really good one. Also, Ursula's suggestion about lectin intolerance may be something to explore too.

[mythreesuns]

Today I went in to see my family doc, to talk about what the guy in Regina said. Well, I

THEN my family doc accused me of all this just being "in my head" and told me I should see a psychiatrist ...

NO EFFIN WAY!?!?!?!??!!?

Sweetie, whose permission do you need to eat a gluten-free diet? If you know what it does to you, then just stay off it, and don't worry about who thinks you're crazy. When you stop running to the bathroom all the time maybe they'll realize it was all in THEIR heads and not yours.

Hang in there, we're behind you!

If your doctor would just look you in the eye and say I don't know what's causing your symptoms. I don't know. I wish I did. But I don't.

This is why I love my GP.....he has said this to me several times and each time he has referred me to a specialist. I LOVE that about him! He knows he's not god, and doesn't pretend that I don't know he's not god too.

I agree----find another GP if you can!