• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

New And Stressed
0

16 posts in this topic

Ads by Google:
Ads by Google:


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!!!

1

Share this post


Link to post
Share on other sites

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!

1

Share this post


Link to post
Share on other sites

Thank you for the welcome and support. I really didn

1

Share this post


Link to post
Share on other sites
Ads by Google:


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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,332
    • Total Posts
      935,528
  • Member Statistics

    • Total Members
      64,994
    • Most Online
      3,093

    Newest Member
    Daisy Charlize
    Joined
  • Popular Now

  • Topics

  • Posts

    • Former lifeguard and competitive swimmer here. There could be some potential issues, but I think it's pretty unlikely. Here's why I think that: 1. The water volume in a standard 25m pool is enormous (hundreds of thousands of liters). Assuming there are people swimming in the pool, any hot spots are likely to get dissipated pretty fast, so you'd have to swallow a lot of water to get a serious gluten hit. 2. By law (at least in Canada), the water inflow and outflow rates must be such that the volume of water that makes up the pool must be replaced every 24 hours in public pools. There are always some dust bunnies, bandaids and whatnot trapped in the corners at the bottom of the pool, but the main volume you're interacting with gets replaced regularly, so no build-up. Public pools are also vacuumed on a regular basis. For cleaning agents, typically on bleach and baking soda are used in my experience. Private pools are another story and there no guarantees. 3. Most public pools prohibit food on deck due to public health regulations and/or wanting to avoid cleaning up messes. This limits potential sources of gluten to personal care products on other people's skin. Considering the volume of a pool, I'm having trouble imagining this resulting in a significant exposure, but I have also swam in packed outdoor pools that taste like sunblock, so who knows. I would definitely worry if people were eating hot dogs or shotgunning beers in the pool though (definitely a thing at backyard pool parties). 4. Pool chlorine can be either tablet based, liquid based or gas based depending on the pool. Either way, it is bleach-based (sometimes literal bleach gets dumped in smaller volume bodies like hot tubs when the chlorine is off). The pool I worked at, which was newer used liquid injection, and I would imagine this is true of most newer facilities (gas is undesirable as it can leak and kill people because it is odourless - some older pools still have this set-up though). Tablets are more common in backyard pools, and it's possible that these might contain gluten in some form (I have no idea and have never checked).  For reference, the concentration of chlorine in a swimming pool should be between 0.5-5 ppm, depending on the pool temperature and your region (lower for colder pools, higher for hot tubs).  So, I guess my opinion would be that a public pool is most likely pretty safe from a gluten perspective. Chlorine (or rather, the volatile gases resulting from the reaction of chlorine with biological waste in the pool) is an irritant though - occupational asthma rates in lifeguards and swimmers is quite high. Some people are more sensitive to this than others. My dad cannot swim anymore because he becomes ill for a week with severe upper respiratory symptoms (open water swimming is ok). I get similar, but less severe symptoms (part of the reason I don't swim anymore, sadly). Not sure what symptoms you experienced, but something to consider. http://www.ncceh.ca/documents/practice-scenario/pool-chlorination-and-closure-guidelines
    • I look back at photos from a few years ago now and can see the inflammation in my face. I spent decades with my body fighting constantly without my really being aware. Freaked me out when I realised! Few things to think about: If up to 1% of pop are celiac, at much as 6% could be NCGS - further reading here: https://www.celiac.com/gluten-free/topic/117969-non-celiac-gluten-sensitivity-a-resource/ NCGS can present in the same varied ways as celiac - Not just or even primarily gastro related. I get back pain, chest pain, skin problems, eyesight problems, anxiety, depression, balance issues, nerve tremors and twitches etc. etc Try to treat these next months as a special case. Dial your diet back and eat really basic and simple. I lived on omelettes filled with veggies, huge green salads with olive oil and cider vinegar as dressing and a very simple evening meal with maybe some meat and rice. I ate as little processed foods as I possibly could. So try and avoid sauces, anything in a box really.  Your aiming to help your body heal and to reduce the amount of ingredients going in to the basic safest foods. Eat clean and healthy and avoid any possible gluten source. Spend a bit of time learning about hidden sources of gluten too. This thread will help:  https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/   Final point. You may like me eventually have to live life without gluten and without the comfort of a diagnosis that says precisely why. This is not always easy, but what you learn about your body in the next 3 months of this trial could help you to do this. Keep the diary, note your reactions and hopefully when you see the Rheum in 3 months you'll have conducted your own science experiment and have the data you need to make a good decision. Best of luck Matt  
    • Newly diagnosed, who do I tell? I'm not talking friends & family. I am normally private about health matters but I feel it seems I need to tell so many people. Does anyone have a list? Some are obvious like doctor and dentist but one came up for me the other day when my massage therapist asked if I'd had any changes in my health and I said no but halfway through the session realized that, "Duh I should have mentioned Celiac! Clearly the lotion used could be an issue." So who is on your list to tell? Here's who I have so far: Doctor(s) Dentist Restaurant Servers Massage Therapists Hair Stylist Babysitters, Petsitters or Housesitters (anyone who might bring or prepare food in my home)      
    • Hey, I am learning also...make sure you are taking a good multi-vitamin...gluten-free of course.  I have had a few "charlie horse" pains in my thighs and am taking an extra B12 tablet...If you have an ALDI grocery store nearby they have lots of gluten-free items snacks and frozen.  Vitamins will help...you are not getting enough nutrients with what you are eating.
    • I feel the same way! Newly diagnosed (gluten-free since July 1) and never had major GI symptoms mostly neurological issues and other very random stuff. So no red flags to tell me, "You just glutened yourself!" Or at least I haven't identified them yet. I'm not sure if I'm feeling better or not yet. I do have more energy but lots of anxiety and random symptoms that might be celiac related... but who knows. I'm just not sure if this is what "feeling better" is yet. I can't imagine what that is like... or will be like. And I keep reading about people "getting sick" when they are glutened but that is so vague. For me, I'm not sure I'll know if I've actually been glutened or not. I feel like I'm extremely careful but I'm not sure if I'm being over the top, or if I'm doing it right, or not enough and need to do more. I'd just like to get to a nice gluten-free baseline and note what that is like so that I can compare how I used to feel and how I might feel if glutened so that I'll know! Sorry, didn't mean to hijack your thread and provide no answers. I can just relate, that's all.
  • Upcoming Events