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Newly Diagnosed And Feeling Lousy!

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I spent 5 days in the hospital after months of diarrhea, dizziness, and 2 fainting episodes. While in the hospital, I had many tests...colonoscopy which was negative, X-rays, ultrasounds, all negative. The EGD, however, showed blunted small intestine villi and flattening. The gasto says it is "early Celiac Disease". I went on a gluten free diet and when I first came out of the hospital, I felt great. More energy, less dizziness, bloating lessened. I had been on all kinds of IVs in the hospital (glucose, antibiotics, antifungals). That was in min-April. I have been religious about my diet but suspect I have been glutened while eating out. Now I am again having occasional diarrhea, indigestion, nausea, and dizziness. One day I feel great, the next day I can hardly get out of bed. Should I get the DNA test to make sure I have the gene(s) for Celiac? What do you fellow Silly's eat when your feeling lousy? In pre-Celiac days, I would turn to my comfort foods, chicken soup, Cream of Wheat...now I'm afraid to eat anything! I have just about every symptom of Celiac (except weight loss!!!). And now I am adding depression to the list. My quality of life is not great right now. From one day to the next, I never know how I'm going to feel and it is impossible to make plans to do anything. Sorry for the rant....just had to get it off my chest. I am 67 years old and I suspect I have had this for a long time. Over the years, I've been diagnosed with irritable bowel, Chronic Fatigue Syndrome, GERD. I think I need a hug!!!

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There are very few diseases that cause villi issues. Plus the fact that you felt better after eliminating gluten from your diet should assure you that this is the issue. I've been gluten free for 5 months and still have many issues that come and go. So it does take a lot of time and patience.

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Have you also cut out dairy? At first you may be lactose intolerant due to the villi damage. Once your body heals though you can try adding it back in. I've been gluten free for almost 7 months now and I can just tolerate yogurt and some low-lactose cheeses, but non it large quantities or else I get cramping and D. Some other Celiac's have problems with casein and have to go dairy free for good.

If you don't think it's dairy you might try keeping a food log and recording how you feel each day as well. Many people have additional food intolerances they need to cut out to really feel better. The problem is that some symptoms can show up 24-72 hours after eating, so you really need to keep a log to figure out what's bothering you. Also try to eat a whole food diet as much as possible. Put aside the processed gluten-free stuff until you can figure out what foods you are reacting to. I had to cut out soy as well as dairy. Had I not figured that out before delving into gluten-free baking I would have tried a bunch of products with soy-flour and I wouldn't know why I was getting sick from eating gluten free food.

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((( hug )))

I agree with cutting out dairy. Lots of celiacs react to it at first. You could also be getting into hidden gluten if you're eating out or using a lot of processed foods.

Has your doctor tested your thyroid and B12 levels? Those are both problems in celiacs and can make you tired.

As far as comfort food, I eat chicken soup when I'm feeling lousy. The kind that starts with a whole chicken in a pot and is guaranteed to be gluten-free. ;) If I'm too tired to make soup I throw some rice in the rice cooker and have it with gluten-free chicken broth. (Check labels on the broth as not all are gluten-free. My favorite is Pacific brand. HerbOx bullion is gluten-free as well.) Another comfort food is Progresso Lentil soup.

Don't be afraid to eat. Fruits, rice, veggies, potatoes, home-cooked meats, plain seeds and nuts are all naturally gluten-free. It's much easier to make yourself a salad with a little oil and vinegar than to try and decipher labels at first. Cook for yourself for a while and try to limit eating out to places with gluten-free menus.

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One of my favorite comfort foods is Cream of Buckwheat. I use the Pocono brand which is grown in dedicated fields, harvested with dedicated equipment and processed in a plant that only processes buckwheat. It is very similiar to Cream of Wheat but has much more digestable protein.

You might want to avoid restaurants for a while and you may want to avoid soy and dairy for a bit. I thought I was being CC'd alot in the beginning but much of it turned out to be the soy I was getting in so many gluten free foods. In a couple months when you are feeling better challenge both one at a time for a week or two and that should help you figure out if you need to drop them from your diet.

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