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New And Stressed


John6307

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John6307 Newbie

I


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adab8ca Enthusiast

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!!!

Marilyn R Community Regular

I

rosetapper23 Explorer

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:

Open Original Shared Link

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

John6307 Newbie

Thank you for the welcome and support. I really didn

John6307 Newbie

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

John6307 Newbie

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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kareng Grand Master

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:

Open Original Shared Link

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.

AVR1962 Collaborator

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.

John6307 Newbie

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.

John6307 Newbie

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

AVR1962 Collaborator

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

gailc Newbie

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

Marilyn R Community Regular

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.

John6307 Newbie

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

AVR1962 Collaborator

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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    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
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    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
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