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Welcome! Not necessarily a club you wanted to join, but it is better than the alternatives! Firstly, I am so sorry that you suffered so long. How awful and scary. I started getting the neuropathy in Feb 2010 but it got REALLY BAD REALLY FAST and by July I was sure that I was going to end up in a wheelchair. In addition, crippling anxiety and depression. A neurologist that I saw ran a ton of autoimmune tests to rule them out and they came back screaming high for Celiac antibodies and here I am!

Regarding food shopping, the one piece of advice that I wish that people gave me is don't try to replace the gluten filled foods with alternatives. I find most don't taste very good. Try to stick to whole foods, meat (if you eat it), fruit, veggies...Things that have one ingredient are not going to have gluten in them. If the list of ingredients is too long, put it down, you probably don't need it anyway. It WILL get easier and then you can start to explore the options available to you.

The other piece of advice is to be kind to yourself. There will be good days and bad days. You have been ill for a long time, it will take time to get better.

Your wife sounds great, very supportive, she will be happy to get her husband back. I know my husband is so happy to have his wife back!

Read away, ask away, no questions are dumb and hopefully you are on the right track to good health!!!

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In the beginning, it can seem overwhelming....but, really, all you need to do is eat natural foods. Most of us have become so accustomed to eating processed foods, we've forgotten what real food is! If you buy natural foods (e.g., fruits, vegetables, meats, nuts, beans, rice, eggs, etc.), you'll be just fine. If you feel that you need a gluten-free substitute for bread and pasta, some excellent brands are Against the Grain, Udi's, and Rudi's for bread....and Tinkiyada and Glutino for pasta. Gluten-free crackers that can be found in the regular cracker aisle that are quite tasty are made by Crunchmaster, and some "regular" cereals that are gluten free include Cocoa Pebbles, Fruit Pebbles, gluten-free Chex varieties, and gluten-free Rice Krispies. You can substitute gluten-free Tamari Sauce for soy sauce, and there are a number of gluten-free beers on the market.

If you feel you MUST have some "regular" foods, here's a list of grocery products that you can find anywhere that are gluten free:

http://homepage.mac.com/sholland/celiac/GFfoodlist.pdf

Hope this helps lower your stress level...and welcome to the Forum!

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Thank you for the welcome and support. I really didn

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Thank you for your response Marilyn. You know I think one thing that still frustrates me is that none of these neurologists ever asked about other symptoms until the doctor from the Mayo Clinic. It seemed like an afterthought in his notes, but at least he thought outside the box. I have read some of the same things concerning healing. Peripheral nerves can grow back, but they do it very slowly and I know I

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I appreciate the link to the mainstream products. I used to love Wheat Thins and hummus and I soon discovered the Blue Diamond brand Nut Thins. That was my snack weakness for the most part. I am getting more used to the whole foods thing. It

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If you feel you MUST have some "regular" foods, here's a list of grocery products that you can find anywhere that are gluten free:

http://homepage.mac.com/sholland/celiac/GFfoodlist.pdf

Hope this helps lower your stress level...and welcome to the Forum!

Please note:

This product guide appears to be 6 years old. Products change constantly. While some may still be gluten-free many ingredients and manufacturing practices have changed since 2005. For example, Chex gluten-free cereals would not be listed on something from that time.

Reading ingredients is more helpful. In the US and Canada, wheat will clearly be listed. Many big companies like Con-Agra and Kraft will be sure to include if an ingredient is derived from any gluten source including barley.

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Welcome! Like you, my symptoms also were nuero and I was sent thru a battery of tests. At first it looked like something else and thought I was heading to surgery but then goping gluten-free changed everything. Good thing when I reflect is not only were they able to eliminate but in the process of testing they were able to link all the tests together and after 7 months I had a diagnosis, just 2 weeks ago. Anytime with neuro damage is a long time so I am glad they found the problem so you can get the proper care.

I am 48, teach music, and like you feeling unable to work with your hands much longer, my eyes could not keep up with the music, they were jumping. I was having trouble comprehending the theory I had taught for years. I had to let a couple of my advanced students go before I realized what was happening. It is debilitating.

The longer you work with the diet, the easier it becomes. I had to do ALOT of healing and am still on a low acidic diet as I had so much GERD and the diet is supposed to help me recover my bone loss. It's helped alot!

Probabaly the biggest thing I have had to learn is asking questions at a restaurant. I don't live in the US....visited this past summer and found it wonderful to find so many restaurants with gluten-free/dairy-free menus!!!! I have not found it as easy in Germany but I have learned to ask. Another thing is the kitchen iself. Neither husband or teenager in house are gluten-free so I am sharing with gluten eaters which means everyone has to learn how to use products like jelly, mayo......do dipping after the knife has hit the bread.....slicing the cheese on a plate with clean hands so it doesn't pick up crumbs. That is how careful you have to be. Toss the toaster if you use it. Pitch the wooden spoons and the strainer. Check your cooking spray, some have wheat.

What symptoms are you still dealing with?

You'll find great help here as you journey thru this.

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Please note:

This product guide appears to be 6 years old. Products change constantly. While some may still be gluten-free many ingredients and manufacturing practices have changed since 2005. For example, Chex gluten-free cereals would not be listed on something from that time.

Reading ingredients is more helpful. In the US and Canada, wheat will clearly be listed. Many big companies like Con-Agra and Kraft will be sure to include if an ingredient is derived from any gluten source including barley.

Oh yes, reading labels is what has caused the length of time to buy groceries to increase so much. Even then sometimes I hit the internet with my iPhone to double check some things and when we cannot get a clear answer we leave it. I understand how ingredients change so we try to be updated whenever possible. I have downloaded lists from local grocery stores such as Publix and Winn Dixie that list all of their brands that are gluten-free, which is helpful and I have the latest copy of the Gluten-Free Shopping Guide and that has also come in handy.

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Welcome! Like you, my symptoms also were nuero and I was sent thru a battery of tests. At first it looked like something else and thought I was heading to surgery but then goping gluten-free changed everything. Good thing when I reflect is not only were they able to eliminate but in the process of testing they were able to link all the tests together and after 7 months I had a diagnosis, just 2 weeks ago. Anytime with neuro damage is a long time so I am glad they found the problem so you can get the proper care.

I am 48, teach music, and like you feeling unable to work with your hands much longer, my eyes could not keep up with the music, they were jumping. I was having trouble comprehending the theory I had taught for years. I had to let a couple of my advanced students go before I realized what was happening. It is debilitating.

The longer you work with the diet, the easier it becomes. I had to do ALOT of healing and am still on a low acidic diet as I had so much GERD and the diet is supposed to help me recover my bone loss. It's helped alot!

Probabaly the biggest thing I have had to learn is asking questions at a restaurant. I don't live in the US....visited this past summer and found it wonderful to find so many restaurants with gluten-free/dairy-free menus!!!! I have not found it as easy in Germany but I have learned to ask. Another thing is the kitchen iself. Neither husband or teenager in house are gluten-free so I am sharing with gluten eaters which means everyone has to learn how to use products like jelly, mayo......do dipping after the knife has hit the bread.....slicing the cheese on a plate with clean hands so it doesn't pick up crumbs. That is how careful you have to be. Toss the toaster if you use it. Pitch the wooden spoons and the strainer. Check your cooking spray, some have wheat.

What symptoms are you still dealing with?

You'll find great help here as you journey thru this.

Hi and thanks for responding. I turn 48 next month. The loss of fine motor skills and hand strength because of the neuropathy has been very annoying to say the least. Some things I simply cannot do when it involves using my fingers. Sometimes I have trouble just buttoning up a shirt. When I was in law enforcement the thing that was worrying me the most was firearms training because we did some at night in low-light conditions. It

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Hi and thanks for responding. I turn 48 next month. The loss of fine motor skills and hand strength because of the neuropathy has been very annoying to say the least. Some things I simply cannot do when it involves using my fingers. Sometimes I have trouble just buttoning up a shirt. When I was in law enforcement the thing that was worrying me the most was firearms training because we did some at night in low-light conditions. It

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I was finding the diet difficult. Since diabetes is in the family history and I expect to get it I asked Kaiser if I could take the diabetes class to learn to eat right. Conquor both diets at the same time, this will avoid going through the diet change shock again later. And may delay diabetes.

I learned a lot. Substitute brown rice for bread. That's ok except I still want white rice with Chinese food. The food on the diet works very nicely with the gluten-free diet.

I found canola oil to be very bad for me many years ago, and now I suspect olive oil, so none of that for me. Aspartame nailed my yesterday, as did oats and soy once gluten-free.

My preferred fat is AVACADO anyway, but I was told only a half an avacado a day. Ok I'm doing that.

I highly recommend a diabetes class, and at Kaiser the dietician didn't have to ask my doctor.

Food has become less important to me know on the gluten-free diet. I have lost most of my appetite and have lost a pound a month for the last 7 months on the diet. :D:):D;):rolleyes:

I don't get hunger pangs(pains) now and I have to remember to eat. If I don't remember I get low blood sugar and I have to monitor(like a diabetic) those times now, if it is not one thing it is another. :blink:

Sometimes I wish I had never started the diet but rather quickly I think, "but I feel so much better now, I'll put up with the inconveniences"

gailc

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My neuro stressed the importance of exercise too. I don't work out like I used to, but if I'm brushing my teeth in the morning and I feel pretty good, I get in some squats. When I wake up I do some leg lifts (in bed, not that tough) and some push ups against the wall. You'll have to be really diligent with the diet, because if you have a little slip up you'll be smacked and it frumps you out from from wanting to do anything. Based on your grocery stores, I guess you live in the South. If you BBQ often, if you're using the same one you used before gluten-free, you should cook anything you grill in foil, or buy a new grill. I'm serious, and I'm seriously a scrubby Dutch person. (Clean and cost consciense.)

Good luck, wish you well.

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I have a quick question since I am still new at this. Since it also appears I am lactose intolerant after having some problems with Lactaid (even if I take a couple of the tablets with the milk) I am thinking I may also have a problem with casein or perhaps whey proteins. My attention has been so focus on gluten-free products that I have overlooked some that say

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I have a quick question since I am still new at this. Since it also appears I am lactose intolerant after having some problems with Lactaid (even if I take a couple of the tablets with the milk) I am thinking I may also have a problem with casein or perhaps whey proteins. My attention has been so focus on gluten-free products that I have overlooked some that say

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    • Do you mean something like a protein powder you could mix up?  A lot of them in the US seem to be gluten free.  Maybe just go to your local store and read all the labels?
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    • Hi, I've gained so much knowledge on this forum over the past few months, which I am so thankful for. I can see how much hell people are going through with this disease and it's so lovely to see how much support and advice people give to others on here. I'd like a little bit of reassurance and advice myself from anyone that can help. I've been gluten free for six months. Two weeks after going gluten free I realised I also had a problem with corn so cut out processed food. Over the following weeks and months I continually had problems with food; fruit, dairy, a lot of vegetables, nuts, soya....it's basically dwindled down to just eating potatoes (not white potatoes), cucumber, lettuce, small amounts of red onion, spring onion, sprouts and beetroot. There may be more things I could be okay with but to be honest I'm too scared to try.  Is this all normal? Am I an extreme case? I've been taking some digestive enzymes and probiotics for about six weeks, my acid reflux has dramatically decreased but I always have a lot of loud noises going on in my guts, I'm guessing this is the probiotics working.  I've lost nearly 3st in weight since this started - which I'm not complaining about as I was overweight due to thyroid problems. I've had loads of blood tests done recently, all organs are working 'great' according to my doctor, the only thing they've picked up on is ketones, I seem to be having a glucose problem, which might explain my exhaustion and weight loss. I also have permanent numbness and sometimes tingling in one of my legs and sometimes hands and one shoulder, I thought it could have vitamin B12 deficiency but that's okay according to blood tests. I would be greatful for any replies. Thanks for reading.
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