Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New And Stressed


John6307

Recommended Posts

John6307 Newbie

I


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    3. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    4. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

    5. - Scott Adams replied to Silk tha Shocker's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Help


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,480
    • Most Online (within 30 mins)
      7,748

    Randi44
    Newest Member
    Randi44
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Flash1970
      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
    • trents
      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
    • Roses8721
      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    • Ginger38
      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
    • Scott Adams
      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.