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gluteninva · Joined: 07 Apr 2005 Posts: 3 Location: madison, va

Hi all:
I am new to the forum and I have some questions. I am a 25 yr. old female that was diagnosised w/ Celiac Disease in 2002. I am still having alot of problems. First off I am currently applying for disability because of the CD and my diabetes have severly prevented me from working. When I go to my doctor he tells me that I am not sticking to the diet and I should see the nutritionist. When I see her she tries to get me to buy a book and tells me to stick to the gf diet and buy all the gf products. The problem with that is that the gf products are so very expensive that I can't afford it. I also live with 5 others that are very country and live by the rule fry it in oil with fatback and flour. And they are not to pleased when I try to use the gf products I have bought. Oh and we have ONE kitchen. I also believe that I am allergic to other foods and my doctor won't send me to a allergist and due to insurance reasons you have to have a referal and he won't do it and I can't see another doctor. I have also mentioned to him that I have lost controls of my bowels and do not know when I need to use the restroom and I end up having accidents so therefore I must wear depends. How embarassing. He doesn't seem to think I have a problem and does no further testing. I have had one scope test and that was when I was first diagnosised. He just seems to think that since I have gained weight (8 lbs) in 3 years that I am doing much better. So if any one can help please respond with suggestions.
Thank you
cori
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cori in virginia

aklap · Joined: 02 Oct 2004 Posts: 12530 Location: WI, USA

Hi Cory,

Welcome to the board!!

It's fairly common to have both CD and Diabetes. Sorry to hear you have them and that it's forcing you to go on disability Sad

By your description of your kitchen, it doesn't sound like a GF paradise. I suspect your doc is right - you are probably getting contaminated by your fellow housemates. Studies are showing that the number 1 reason people don't get better on a GF diet is that they are still getting gluten *somewhere in their diet. Either by contamination (crumbs, people double dipping in the mayo jar, pots & pans) or by hidden gluten. If a food product is processed - it may have gluten in it. Companies can hide gluten in things like Modifed Food Starch or Natural Flavors.

Yes the specialty GF foods are expensive. But - there are many foods that are naturally GF. Fresh fruits, veggies, plain meat, chicken, & seafood (no marinades!!). If you strip your diet back to "whole" foods - it becomes much easier to be GF (that's not looking at the contamination issues that you maybe facing).

In the Proper Foods forum there are some lists of GF foods. One is called "Chicago Mainstream GF Food list". It lists mainstream foods that you should be able to find just about anywhere. The other thing to check out is the "Safe & Forbidden Food Ingred. list." This will tell you what ingredients are safe and which are not. Print this list out and take it to the store with you. Check EVERY label if you find an ingredient listed in the Forbidden list - set it back on the shelf and back slowly away from it. Yes it will take awhile to get groceries. Now do you see why I talked about whole foods? Smile

Are for your housemates...boy...I don't think there much I can tell you about that. Other than, if they are not going to support you in this, you need to try to get to a place that will. This is doing nothing more than polluting your system. You are seeing a decline in your health - it maybe time you try to see if you can turn that around. Think about this...how well do you think you'll be in another 3 years?

Hope you stick around, there's lot to learn!! Good luck in your journey to health!!
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

WheatFreePDX · Joined: 29 Mar 2005 Posts: 91 Location: Portland, OR

For follow up, your doctor should be having the Celiac panel bloodwork done every year to make sure you are not still ingesting "hidden" gluten. (This is, of course, if the blood test & biopsy was the means of your intial diagnosis. Many gluten intolerant doesn't show up on this test.)

The panel should be covered by insurance (only one per year though) and would tell you if your issues are Celiac related (Al's right, that's the likely problem!).

Sounds like you're going to have a tough time trying to be truely GF with your current living situation-best of luck!!

Erica (Portland, OR)
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Diagnosed with celiac disease (bloodwork & biopsy). GF (again in my adult life) since March 2005.

maria1223 · Guest

cory I sgree with u it is expenisve but u have to do it I also am out of work I have cd, i'm also aborderline dieabetic, I have crohns & a hiatal hernia. My GI dr. was jerking me around & so was my cancer Dr due to insurance I'm limited but My mother in law found me a good GI dr. & my neighbor has breast cancer so she asked me to call her cancer Dr & he took me I have an appt. in 2 weeks with both of them. U have to keep pushing with ur insurance. Because I also applied for disability and it will take 1 yr for u to be out of work & u to be sick for u to get anything from them than they usually turn u down than u have to hire a lawyer to fight for u to get it. I use to weigh 99 lbs. before i got sick since I've been out of work & sick I now weigh 210 lbs Embarassed

my nutrritionst wants me to eat 6 small meals a day. I never did that before I got sick I ate 2 times a day which was enough for me. I hope that u can voice ur opinion to ur dr's or to the insurance co good luck

gluteninva · Joined: 07 Apr 2005 Posts: 3 Location: madison, va

Thank u for replying everyone. I am still confused about a few things. I have to go to a state hospital and have patient financial assistance through them and i can't switch doctors and my doctor is not helpful at all but i am stuck with him. I truely feel that there are other things that are wrong with me but he hasn't even seen me in six months and i can't seem to get an appointment with him he has the theory that if i have gained weight than i am doing fine but i spend most of the day in the restroom and i was wondering if (this is embarassing to ask) anyone else with cd has or had problems with controling their bowels and not having the feeling of having to go and end up having accident? I am really not sure what to do. Someone told me to contact John Hopkins Hospital in maryland i think does anyone know how to do that
thanks
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cori in virginia

aklap · Joined: 02 Oct 2004 Posts: 12530 Location: WI, USA

Hi Cori,

You may have mulitple things wrongs. Have you told your doc about your bowel issues? (I supposed you would if you could get an appointment, eh? Smile

)

I know some of this stuff might be embarassing - but I think you're safe here. Hey - we talk about all sorts of medical conditions here. We just want help anyway we can. Ask only what you are comfortable asking. Smile

I'm not a doctor (nor do I play one on TV), but there is a condition that affects the nerves in various parts of the body. On section it can affect is the gastro tract. It's called Autonomic Neuropathy. I have often wondered if it hasn't affected my cardio system (I have pulse & blood presure issues). I thought of this when you said that you can't always tell when you're going to have a bowel movement.

As for getting refered to John's Hopkins...you might call the hospital. I suspect they'd have a patient services department that might be able to get you started in the right direction.

I wish you luck. I hope you get some answers!
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

Professor · Joined: 19 Oct 2005 Posts: 757

Al is right . . . you can eat GF quite inexpensively. I've been diagnosed for about 20 years, and so "back in the day" there were no GF foods except what is naturally GF. So my diet was very basic -- potatoes, rice, beans, beef, chicken, fish, veggies, fruits, eggs . . .

As far as the household situation, I can only imagine how bad it is as far as cross-contamination. What you might have to do is thoroughly clean the kitchen one day a week, thendo all of your own cooking, then seal it all up tightly and refrigerate it, and microwave to reheat and eat. ALso, I think it's important to buy your own pans and a few dishes/utensils, and keep them all in something like a plastic laundry basket that you can stash away and no one else can contaminate. YOu can do this reasonably cheaply -- just get the basics. (When I used to live in a non-GF-household, I did similar. Even had my own dish sponge and towels, scrubbies, etc. But it worked! I just had to be very vigilant. FInally, I have a GF house!)

I hope you can work this out. Good luck,

Lexi