[turner]

Well I had this whole letter typed pushed submit and poof whole thing disappears. So heres the long story short.
My dr thinks that I have a psychiatric disorder, my neuro convinced him I do. Wants to send me to see a neuro psychiatrist, I did want to see a psychiatrist to help me deal with the emotional problems of being sick. I use to be a really active person and now I been reduced to a snails pace. Hard to handle that, I have to slow down, when all I want to do is be my healthy self.
So I see the head shrink, he has me dx'ed before I even get to tell him my side of the story. He tells me I have a "conversion disorder" and its all because of my poor up bringing, ya my mother apparently is to blame for my health conditions. And even though I told him that my health condition improved with the elimanation of glutten, milk and soy, he didn't want me to persue any more testing. Even though my husband concured that my diet helped immensly.
I have a GI dr that believes me, I get to see him in a couple of weeks. My blood test were normal. He did a IgA deficiant test on me, and a biopsy that I know is normal. So you might think, who cares what the other drs think, you know that glutten makes you sick forget about it. Heres the kicker, being sick has made me disabled, I still am not able to go and work, and no work no money and being sick and poor really sucks. I need a dr to fill out a disability form, but I don't want to be dx'ed "conversion disorder". The only way for me to prove once and for all is to get testing done my enterolabs. I can't afford the big one, would the IgA test be best or the one that test specifically for glutten. Any help would be appreciated, thanks Patricia

[loisba]

So sorry you're having this go round in diagnosis limbo, Patricia! Doctors can sometimes be a real pain. I've got no advice for you on the Enterolab tests, just lots of sympathy.
What does your GI doc think about the Enterolab test? I almost hate to suggest it, but if he does feel gluten is involved despite all the negative tests, maybe he could do a gluten challenge and use the results as a diagnosis.
Hugs,

[darlindeb25]

One other point being--most doctors do not accept Enterolab results as conclusive--probably falls under that doctor heading of, "If I didn't find it, it isn't so!" Celiac disease in itself, isn't usually considered to be grounds for diability. What are you disabilities, do you mid me asking?

[turner]

Thanks lois for the hugs
The GI drs suggested a glutten challenge when we talked in Dec. I told him that glutten really made me sick and doing that seemed to me almost barbaric He kinda agreed, I do get to see him on the 13 so I will ask if he will except Enterolabs testing, he seems to be very knowledgable about what glutten can do to you, beside the stomach ach, which I'm hoping is not just a show.
I never had this problem with drs before, its just this last year because I moved from a different province and new drs that don't know me that well.
I had a dr in Calgary that suggested MG and order blood test, they came back borderline and it was suggested that I get futher testing for that. Which I did, they lost the blood test and so I have know idea what was on that, and of course my dr won't do any more testing.
I have chronic fatigue, muscles spasms, and really poor strenght. I went from being able to carry 50 lbs or more easily to now getting that jug of milk out of the fridge takes two hands. I can't walk for more than 1/2 block without becoming short of breath and very tired. All I want to do is go home and nap. Now things have GREATLY improved since going glutten free, so much so that I don't need a nap, I can walk a good block, I don't have hardly any pain. No more stomach aches, the big D and the migrains have all gone. This is what I don't get. So much improvement yet apparently, the head shrink thinks that I'm being dramatic about it, and that I don't need to be so stict with this diet. I feel like I am going crazy, my dr looks at me like I found all this info in some science fiction novel.
I am on the mend, just its taking so slow and I'm really one that just wants to push myself. I wasn't cut out to be a couch potatoe. And pushing just makes things worse, not to mention the stress from drs. I figure that if my GI drs has some brains he will tell my GP the I do have glutten sensitivity and that it has caused all these problems, and that hopfully I stopped eatting the stuff soon enough that my body can repairs itself. If not then I guess I just have to suck it up till I get better enough to go back to work. Which seems to me like a very long time from now.
So is the IgA test the better one or the IgT. I would like to have as much info as possiable to make my case. Because if I don't get someone to believe me then I won't get any further help. And I won't be seeing any more drs. Thanks so much, Patricia

[mistofviolets]

(((Hugs)))
No input, but I know what you mean...many years ago my drs thought I was "just stressed" and strongly urged me to stop looking for work, and take time off from school (I'd just earned my AA and wanted to transfer, but couldn't imagine it with the pain).
Somehow a few weeks turned into a few years...and this is about 7 years later, gf for just over a year, and starting to heal. The concept of returning to work seems overwhelming, at least when you have that experience of your body physically baling out on you. Esp when there was no real treatment. (Other than avoiding the offending food. I don't know about you...but any meds they gave me made me so much worse!)

Since your GI believes you, perhaps you could get him to fill out the form? Slow recovery from debillitating illness caused by food sensitivities might be the best he comes up with though. And I have no idea how the disabilities office will accept that. Chronic fatigue seems a better bet.

[diamondheart]

Hi Patricia,

It sounds like it's time to fire your neuro and psychiatrist. It also sounds like you should try to pursue the disability through your GI. Once you go gluten free, I think the blood tests and endoscopy become much less reliable for diagnosis. What were your results of the IgA deficiency test? If you are not IgA deficient, then the Enterolab results should give you some answers. Also, you can have the genetic testing done to see if you have one of the celiac genes. I personally don't put too much faith in the gluten sensitive genes until Dr. Fine publishes his research on it.

I had the Enterolab test done myself for my own peace of mind. I think I may be IgA deficient, but also I had been off gluten for 7 months, so nothing showed up.

It sounds like you are getting positive results from a gluten free diet. I think that's really the only way you are going to know, is seeing how you feel giving up the gluten.

Claire

[turner]

Thanks for the support.
I will have all my result back on the 15 of March. I just pray that I didn't read this GI dr wrong. He is consulting with my neuro
I'll let you all know how it goes, thinking postive that he will help me.
Is genetic testing taken seriously?
There has to be something that I can do that will be taken seriously.
Thanks again, Patricia

[concerned lady]

Dear Patricia,

Don't let them make you crazy! You're the sane one!

You wrote:

"....So I see the head shrink, he has me dx'ed before I even get to tell him my side of the story. He tells me I have a "conversion disorder" and its all because of my poor up bringing, ya my mother apparently is to blame for my health conditions. And even though I told him that my health condition improved with the elimanation of glutten, milk and soy, he didn't want me to persue any more testing. Even though my husband concured that my diet helped immensly.
I have a GI dr that believes me, I get to see him in a couple of weeks."

I agree with all the good advice others have given you.

This head shrink sounds like HE needs a shrink, himself! What a nerve, and how wrong he was (in ignorant denial), to tell you not to pursue any more testing!

I agree with getting help from your GI doc.

I urge you to find another shrink, one who can give you emotional support, while you're fighting your way back to health, from your physical problems (gluten sensitivity, etc.), and one who "gets" it, that being sick, causes a lot of stress!

Carol
http://cantbreathesuspectvcd.com