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gluteninva

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gluteninva Newbie

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 celiac disease 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 gluten-free diet and buy all the gluten-free products. The problem with that is that the gluten-free 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 gluten-free 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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sdore Enthusiast

I don't know much but I feel that you should seek a second opinion!!! 25 is way too young to be having all of these problems.

I am sure that you are not sticking to the diet due to the fact that the people in yoiur household don't support you. I am sure you are receiving a lot of cross contimination from their food.

Do you stull live at home or do you live with roomates? You may want to move out if you can afford it.

I have found that this disease needs much attention! and support from others!

My boyfriends family is true country too. They deep fry everything. His mother always maks it easy for me to eat when I come over for dinner by fixing things I can eat too. She always ahas a baked potatoe ready for me

It can be done. You have got to take charge

KaitiUSA Enthusiast

You really need to stick to the diet. Not following the diet puts you 40-100 times more likely to get cancer then the normal population and the mortality rate is nearly double when not following it.

It does not have to be expensive. By fruits and veggies and that kind of thing. There is alot of normal foods we can have at the regular grocery store. Look at these brands who will not hide anything...unless it says wheat,rye,barley,oats on the label then it is ok.

Aunt Nelly's

Balance

Baskin Robbins

Ben & Jerry

Betty Crocker

Blue Bunny

Breyers

Campbells

Cascadian Farms

Celestial Seasonings

Country Crock

Edy's

General Mills

Good Humor

Green Giant

Haagen Daz

Hellman's

Hershey

Hormel

Hungry Jack

Jiffy

Knorr

Kozy Shack

Kraft

Libby's

Lipton

Martha White

McCormick

Nabisco

Nestle

Old El Paso

Ortega

Pillsbury

Popsicle

Post

Progresso

Russell Stover

Seneca Foods

Smucker

Stokely's

Sunny Delight

T Marzetti

Tyson

Unilever

Wishbone

Yoplait

Zatarain's

You really need to let your roomates know how serious this is. If you breathe in flour that can get into your digestive system which then can cause damage and symptoms. You also need to check things such as lipsticks. Until you are really dedicated to the diet you will not feel better

Carriefaith Enthusiast

It is hard to change your eating habits but in order to get better you must be 100% gluten free. In order to prevent cross-contamination you must get a separate toaster (if you plan on eating gluten free waffles, bagels and bread), a separate deep fryer, and use your own peanut butter, butter, mayonnaise...

There are a lot of gluten free meals that you can make without buying gluten free products such as, curried veggies/chicken/beef with rice, stirfry, chili, meat+potato dinners, soup, salad, cabbage rolls, tacos, veggie or meat casseroles... If you really like fried food buy yourself a separate fryer and cook gluten-free french fries, and you can make your own fried fish/chicken if you use gluten-free flours.

Some gluten free foods such as Tinkyada brown rice noodles are not that expensive at all! with these noodles you can make, spaghetti, lasagna, macoroni+cheese...

Don't hesitate to ask if you have any questions about gluten-free products, gluten-free mainstream products, or recipes.

ianm Apprentice

I don't eat any processed foods. I only eat meat, veggies, nuts, cheese, yogurt and fruit and have really developed a taste for buckwheat. After being on a gluten-free, low carb diet I found that I eat far less than I used to and ended up losing 80lbs. I was on the verge of diabetes. I've tried the processed gluten-free stuff, didn't like it so I just eat "real" food now. You will find LOTS of good info on this website, probably more than that book the nutritionist is trying to con you into buying. All of my experiences with doctors and this disease have been very negative and of no help.

tarnalberry Community Regular

Yep, if you're not 100% gluten-free, you're not likely to get better. It may mean finding another place to live, or doing your cooking on your own pots/pans at non-normal times, but if that's what it takes for you to be healthy, you've got to do it. I'm sorry your doctor isn't listening to you - do consider getting a second opinion. (Your insurance should cover the costs of a second opinion, and even if they don't, consider that it may be worth it for your health and your quality of life to save up the money to pay for a doctor's visit on your own.)

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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