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roxie

Confused And Frustrated

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I have a question. I have been trying to stick to my gluten free diet since March. One week I will feel great, and the next week I will feel terrible again. I never know how I am going to feel when I wake up. When I first started the diet, I had so much more energy, and felt pretty good most of the time. I was so happy. However, now, I go through many days of extreme fatigue, muscle soreness, and other crazy things. For example, tonight, my feet are freezing to the point that they are burning. Also, my whole body is sweating. Does anyone else experience this? Am I always going to have to worry about how I am going to feel each day because I have celiac disease, or will life be normal again at some point????

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Did you also give up dairy? That could be a problem at first, better to give it up for 6 weeks & then re-introduce.

Also, did you add in any foods that you have never eaten before? Like some gluten free bread etc? If you did it is also better to wait on that.

Pay attention to what you are eating & make sure you get enough protein. You could also have another intolerance. nighshade veggies, dairy, soy, eggs, nuts????????

& yes, it gets a lot better, just takes a little detective work.

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I have a question. I have been trying to stick to my gluten free diet since March. One week I will feel great, and the next week I will feel terrible again. I never know how I am going to feel when I wake up. When I first started the diet, I had so much more energy, and felt pretty good most of the time. I was so happy. However, now, I go through many days of extreme fatigue, muscle soreness, and other crazy things. For example, tonight, my feet are freezing to the point that they are burning. Also, my whole body is sweating. Does anyone else experience this? Am I always going to have to worry about how I am going to feel each day because I have celiac disease, or will life be normal again at some point????

It really does get better. I am past the one year point, and finally feel great! I did give up dairy for a year, and now am only eating some aged cheeses, butter and homemade yogurt. When I eat whole foods, I feel wonderful. The gluten-free specialty items are great for a treat now and then, but good ol' fruits, veggies, and meat are the way to go in order to achieve healing. It really depends on how damaged you were in the first place.

Has your doctor checked for vitamin deficiencies or anemia? That can happen as well as a newly diagnosed celiac from all of the time that your body was not absorbing nutrients.

Best wishes.

Molly


Diary free 11/06-6/08

Now using a small amount of low-lactose dairy such as aged cheeses and yogurt. Yum!

Gluten-free since 4/07

"When you row another person across the river, you get there yourself."

- Fortune Cookie

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As the others mentioned above, you may have other allergies along iwth the celiac disease. Another problem may be hidden gluten in medications, cross-contamination, dining out, etc.

Cross contamination: Utensils, pots and pans, cooking surfaces, etc., may harbor crumbs or other traces of gluten. For example, you need a separate toaster that is dedicated only to gluten-free. If you dip a knife into peanut butter or jelly and spread it on bread, the knife is contaminated and must not be placed back into the jar. A fork used to stir wheat-based spaghetti must not be placed in a pot containing gluten-free spaghetti (by the way, Tinkyada brand rice pastas are the closest in flavor and texture to wheat-based pastas).

Eating out is probably the riskiest thing a celiac can do. Restaurants, delis at food markets, homes of family and friends, school cafeterias, snack days at work, etc., are all good sources of gluten. You have to ask a lot of questions and even try to read product labels, if they're available. There's a joke that illustrates the point: At a dinner party, do you know how to tell who the celiac is? It's the person in the kitchen digging through the trash to read labels.

You must confirm that your prescription and over-the-counter medications are also gluten-free. Call the manufacturers or visit the website www.glutenfreedrugs.com. I have had to change medications twice to find versions without gluten.

Another thing to remember is that food and medicine manufacturers sometimes change the product formulations. A product that is gluten-free today may not be tomorrow, so you must be careful every time you make a purchase.

The worst thing you can do is cheat and occasionally ingest gluten, even a trace. I don't remember where I found this paragraph, but it clearly explains why you should never, never, never cheat: "The gluten-free diet must be carefully and continuously followed. When untreated, the disease can cause life-threatening complications. A delayed diagnosis or non-compliance with the diet places the patient at risk for developing associated conditions such as infertility, miscarriage, osteoporosis, fractures, certain types of intestinal cancer, lymphoma, or other autoimmune disorders. Continued consumption of gluten increases the chance of gastrointestinal cancer by a factor or 40 to 100 times that of the normal population." You must get on a 100% gluten-free diet and remain on it for the rest of your life.

Learning to live a gluten-free lifestyle is overwhelming at first, but once you learn what is safe and what isn't, life gets much better. After six years, it just seems pretty normal to me except for eating out at restaurants or someone's home. Then I am very aware of how careful I must be.

There is good news! Food manufacturers and chefs are becoming more aware of gluten-free, so it's getting easier to find safe foods. Even so, cross-contamination at restaurants continues to be a concern.

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