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    Do you have questions about celiac disease or the gluten-free diet?

Lynnie

Went To My Doctor This Morning

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I had a doctors visit sceduled for this morning. The last time I saw him, about a month ago, he set up an appointment for me to come in for fasting lab work.

He gave me my results today, which I was surprised about. My cholesterol was normal, my thyroid was normal, my heart numbers were all good. The only thing that didn't look too good was my glucose level. My number was 105. I guess 25 to 99 is the normal limits. I was just a little over, but still not good. The funny thing is I don't have much of a sweet tooth and I never have. I love food, but sweet, eh, I could take it or leave it. I know that my gluse is a little high because of the drinks that I drink every day. For months now, I have gotten into a habit of making and drinking my own Iced Tea. You have to put sugar in it or it just doesn't taste good. I also drink those vitamin waters and those Starbucks Frappacino's that you get at the convenience stores in the bottles. All of these are loaded with sugar, so I have to figure out something else to drink.

But, other than that, my tests were ok.

For the first time, I brought up the subject of Celiac Disease to my doctor. The way he reacted to it did not surprise me at all. I could tell that he doesn't think that I have it, or...I am thinking tat maybe he doesn't know an awful lot about it. Doctors never want to admit when they don't know about something, that is for sure. After we talked about it for a very short time I asked him if I could get tested for it. He told me that I can get tested but it will cost some money. I found out that it will initially cost me $178. If the test comes out negative, that is the cost. But, if it comes out positive, it will be another $71 dollars for more tests. He said, he wouldn't mind me getting tested for Celiac because it would be another thing that he could rule. out... :rolleyes:

Normally, this would not bother me at all, but I am not working, no health insurance and totally broke. So now I have to figure out a way to come up with this money. Maybe I will have a few yard sales or something.

Also, I am supposed to be going on Enbrel. I am waiting for them to tell me whether they can get it for me or when. There is something here called Best Chance. It's for people like me, not working and no health insurance. I know that they will probably get it for me, because they have gotten other meds for me in the past through Best Chance.

They set up two more appointments for me in July. One is for yet another set of fasting blood tests, I guess for the Enbrel. And after that, I have another appointment to see that doctor again, and hopefully I will be getting the Enbrel at that time.

I keep thinking, if I do have Celiac Disease, I probably wouldn't even need the Enbrel...

I have been eating Gluten Free now for almost a week. I have to honestly say that I don't notice a difference yet.

How long do you guys think it would take to see a difference? Should it be immediately? Or will it take some time?

Since I have sooo many health issues going on and I am dealing with so much chronic pain, it will probably take a while...I hope.

So, I just have to get up the money for the Celiac Test and I plan on getting tested.

In the meantime, I will just continue to do what I would normally be doing until I get the Celiac results.

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Depending on your age and severity of the damage in your intestines should you have celiac disease, it can take from 1-2 years to feel better again...and that's with a strict gluten-free diet.

I was told by my doctor after being biopsied that I would feel better immediately after going on a gluten-free diet. HA! It just shows you how much these doctors sometimes know. And with all my symptoms, which were not typical of celiac disease, my doctor didn't even think of the disease until I mentioned I wanted to get tested for a wheat allergy.

If your doctor appears unwilling to help you, then get a new doctor. Otherwise, raise the money somehow and get tested. (Can't family help you?)

The problem with not having the money and feeling awful is that you are going to continue to feel awful if you don't find out what the problem is. What's more important to you? Your health? Or not being able to pay for something. Try and get a loan, put the payment for tests on a credit card, ANYthing, but find out what's wrong. I think, in the long run, it will be worth your while.

Btw, be sure you're on a gluten diet should you opt for biopsy to see if you, indeed, have celiac disease. Otherwise, you may have a negative result.

Good luck!

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*Hugs* Im sorry your having so much trouble persuading your doctor to do the testing.. they can be such a pain sometimes cant they!! Good on you for standing your ground though :)

How long you take to recover depends on the amount of damage the coeliac has already done.. some start to feel better within a few weeks and are fit and healthy in a year.. others can take up to 2 years to get completely better.. some like me dont even get noticable sypmtoms until after diagnosis when they make a mistake..it really depends on the individual

I agree with fox on the unsuportive doctor issue... if they wont help you then get rid of them.. they arent doing their job properly if they are letting pride (not admitting to knowing little about coeliac) get in the way of patient care

as for the testing issue.. try to get it done if its viable but dont let it stress you out, that'll just make you sicker.. also bear in mind that you need to be eating gluten for the tests to be acurate.. so if you do start to feel better gluten free you may want to just go for the bloods and not do the biopsy.. most people do have the biopsy as its more acurate than the bloods.. (mine was negative though,, with very positive bloods about 6 times .. so my gi ended up ignoring my biopsy anyway)... if you can afford somehow to do the bloods but cant manage the biopsy, at least you will have something to work with

good luck hun, feel free to pm me if you ever need me

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Before I moved to SC and was living and working in Massachusetts, I had great health insurance and I had the best doctors. I loved my doctors up there. They were so open minded about things and so progressive.

This doctor that I am seeing now really does irritate me. It's easy to tell someone to just go and get a new doctor but it's just not that easy to do, for me at this point of my life that is. Like I wrote I am not working and no health insurance. Not much here in this state for people like me. This doctor that I am seeing now, I have been seeing him for about 5 years now. Where I see him, it's a government funded clinic. I am on a sliding scale. I pay $30 for my visits when I go there. It used to be only $5 but the price has gone up. The only reason that I continue to see this doctor is because while I am seeing him and going to this clinic, I can get my yearly mammograms for free, which I have done every year, I get gynecological exams for free, I can get exrays for free, blood tests for free, etc. Also, this doctor that I am seeing is trying to help me get disability. It was actually his idea for me to apply for it and he told me he would back me up. So, as you can, it's so involved and I really need to go to this place to get my health care taken care of.

And, I really do kind of like this doctor. He's pretty good when it has to do with going by the medical book. The only thing that bothers me is that he is just not open minded at all to more things. Like when I try to talk to him about eating organic, or holistic alternative treatments for things, he just laughs at me and acts like that stuff is just a bunch of mumbo jumbo. I'm really not used to that. The doctors I had up north were so open minded to things like that. So, I just accept him for what he is, and I just do my own research for things on the side and just try to stay on top of things. When or if the day ever comes that I do get Disability, I will be able to get health care, and at that point, I plan on definitely getting another doctor. I just have to hang in there with this one right now.

I really have no choice.

I am living with my girlfriend, and she is the Manager of a retail store. I feel so guilty sometimes, because right now she is paying all of the bills. She makes decent money, but it all goes like I said on the bills. I wouldn't mind, but she is dealing with her own health problems now. I don't know if any of you guys know what Cataplexy is, but she had her first Cataplexy attack about 3 years ago and has been diagnosed with Narcolepsy and Cataplexy. She is having quite a time of it dealing with this condition.

Brother, I have to say, we are quite a pair. That is for sure.

Both of us are dealing with so much. Sometimes I just can't believe that we have been together for 8 years considering everything that has been going on. I think a lot of other couples would not have made it to this point. But, somehow we are hanging in there. It's not easy, but we are trying.

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I just thought of something that I wanted to mention.

It's about my doctor that I saw yesterday morning. Or most doctors in general.

When I initially brought up the subject of Celiac...and my doctor looked at me like I was crazy, he then asked me why I thought I had this. I told him that I had been looking it up and found out that I had all of the symptoms. Or most of them. Then he said to me..."Well...do you have Gastro Intestinal problems...???, do you get constipated???" And looked at me like I didn't. I then said to him..."Well, yea....I have IBS..., remember???" "I don't get constipated, but I deal with diahrea an awfu lot!" I said to him..." You have been prescribing me Bentyl, (this is a medication for IBS) for years now...(I felt like saying...duhhhhh) lol

I swear these doctors are nuts. I have been seeing this guy for five years. He didn't even remember that I have IBS. Even though he has been the one that has been writing me my prescriptions for Bentyl.

Unreal.

You know, I really do wish that more doctors would get onboard with holistic and alternative treatments. But, that will never happen. Because then the FDA, the medical associations and the doctors would just not make all of the money that they are making now.

It just really pisses me off.

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