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Overwhelmed!

fujiwabbit

By fujiwabbit
in Coping with Celiac Disease

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fujiwabbit Rookie
fujiwabbit
Posted

This is my first time posting and i jus happened to stumble upon the website while trying to find gluten free christmas cookies. A combination of this website and i think the holidays has put me almost over the edge.

i guess i shouldl start with some history

Im 21 yrs old.. and 6mths ago my health services doctor at Univeristy of Toronto and i had come to the conclusion that i could possibly have celiacs. She didnt kno much about it (had to look it up in a medical book/do research herself) and had suggested that i go home and talk about it with my family doctor in my home town..since health service doctors arent really there for long term medical service. I came home and told my family doctor..she kinda rubbed it off like it was not really something serious and when i requested to see a specialist and maybe a nutrientionist she said she wanted to see my file from the health services doctor first and she would contact me later. That was in september havent heard from her..and i have not been back since i kinda felt as tho she didnt beleive me anyways. (this has happened before with me and my mother about medical conditions) Regardless of not having the tests done.. i KNO i have celiacs.. i have every single symptom listed. I sleep 13..14 hours a day... i eat and eat and eat and continue to lose weight.. i think im down to 96lbs.. i have pain in my lower right side (by my hip) sores on my hands and in my mouth after eating flour...constantly sick...my hair falls out in clumps...my dentist has commented many times on the loss of enamel on my teetth.... not to mention the mental symptoms..mood swings..depression...anger.

since i've kinda been self diagnosed and have had no advice on food i've kinda been doing it on my own..and after reading things posted on this website i jus feel overwhelmed..i've been eating things i shouldnt have been eating and it seems like the last 6mths have been a waste of effort. Im still currently enrolled in univeristy (partially failing cuz most of hte time im too exhausted to make it to class or study when i was a A+ student my entire life) and having a really hard time affording the food i need to eat.. HOwever... i can get financial help from disablity services if i can get a doctors note ... ;)

over all i jus feel completely swamped in the stress of it all ...lack of family and friend support....lack of a doctors support...lack of the financial means to live the lifestyle required. Is this normal?? and how have people found doctors that beleive them and are willing to help? is it jus trial and error? how do u get over the feeling like ure alone and the whole world is jus trying to crash down on you??

sorry for the length of this post.....it jus felt good to get it all out

thanks

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Guest schmenge
Guest schmenge
Posted

I was diagnosed about two weeks ago and have been looking at this board and the posting every day since. You'll find that there are a lot of supportive people here and you may even find some advice for finding more support around you. I've been fortunate that my doctor seems pretty knowledgeable and my family quite supportive. If you look through this board you will find links to some recent newspaper articles. Perhaps you could direct family members towards some of those for education.

If you've been eating the wrong things for six months, you've been eating the wrong things for six months. It is water under the bridge and today is the first day of the rest of your life. I've Been putting food into one of three groups:

1. Food I know to be gluten-free.

2. Food I know to contain gluten.

3. Foods for which I do not know.

You eat only from group one (which of course if not quite as simple as it sounds, but yet it is that simple).

As I have said, I've only been following the diet for a couple of weeks. It does not have to be expensive. There are all kinds of foods with no gluten, but you do have to search. There are several posts on "Top 5" foods that I think you will find helpful.

Stick with it and things will get better!

jerseyangel Proficient
jerseyangel
Posted

Fugiwabbit--Hi, glad you found us here! Sorry that you're feeling so overwhelmed. It sounds as though your symptoms point in the direction of Celiac. If your family Dr. won't give you a referral, could you call a few Gastroentrologists in your area and ask if they have experience with Celiac? Its terrible that you don't have any support from the people around you. The diet does not have to be expensive. Fresh meats and fish, veggies, fruit, nuts, eggs--you could buy a loaf of gluten free bread and keep it in the freezer and it would last you a while. Its taken many of us a long time to get a DX. Some are self DX through a diet challange. You could just go completely gluten-free for 3 weeks or so and see how you feel. You don't need a RX to eat the way that makes you feel good. If you want to be tested, stay on gluten until after the tests to get an accurate result. Visit the board anytime for advice or just to hang out with people who have "been there". Best of luck!

Rusla Enthusiast
Rusla
Posted

First of all everything you eat, drink put on your body, skin, hair has got to be gluten/wheat free. Read everylabel and I have emailed many companies. If you go gluten-free and you begin to feel better and have more energy and things change for the good then you have your answer. Some people are not Celiac but gluten intolerant, which does just as much damage as Celiac disease.

The loss of enamel is almost a dead give-away. It was my dentist who discovered mine because I lost 11 teeth in 5 years. I can empathize with doctor problems because I have had the same fight on my hands in Alberta. If I didn't have DH, they would have totally poo poo'd the idea.

You have come to the right place. There is lots of support and help on here and tons of recipes.

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