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AVR1962 last won the day on December 11 2013

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About AVR1962

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  1. Give it all time for your body to heal. The first year is the big year for healing. You may be able to add back some things after that first year but when the system gets so broke down we have to have that healing time. I too was not able to eat dairy, oats or any gums the first year. I now can have dairy and oats but do avoid cow's milk even still after 2 1/2 years.

  2. Keep with the diet. I was actually diagnosed but my daughters were not and all have gone with a gluten-free diet. If they have any gluten they will feel ill so they know not to eat it or pay the price. Your body is telling you something and no one else has to be on-board with it and you do not need a diagnosis. If it makes you feel better to be on a gluten-free diet, go for it!

  3. To all of the newbies, stick with the diet strickly, it is worth it! I have been gluten-free now for 2 1/2 years. If you read my bio you know I was suffering bad when I first come to this site. It's hard for me to believe now how much pain and how stressed my system was. It took me a good 2 years of recovery, the first year being the hardest. Now I am back in the gym lifting heavy weights and no longer feeling the aches in my tendons, joints or bones!! I can jog again. Not only do I have energy for workouts but I can sleep at night too....I know how rough that was. Stick with it, don't cheat....embrace what you can do and what you can have, it will make the difference!



  4. I too was in denial and actually avoided the gluten-free diet for a while because I didn't think it applied to me, I have no idea now even why. Your mom must have seen something in order for her to push for this test. You are saying you didn't feel symptoms but I am wondering what your mom picked up on.


    No, you do not have to go as far as a biopsy.....if going gluten-free will improve your well being then go for it!!



  5. Just wanted to pop in here, especially for the newbies wondering if they will ever get better, and say it is nice to have my life back! When I look back to that first year when my body was so badly broken it's like looking back at someone else's life. For those who are struggling, keep working for your health, it will all come together.


    For me- no more itching, no more inflammation, dizziness gone, buzzing in my ears went away, balance is back, I have energy once again. Even my sciatic pain is gone. I am living a normal life once again and it feels great!


    I did it and you can do it too!

  6. I did not read the other replies, however I had trouble with sugars. I went thru this time (about a year after being off gluten) when my body was terribly sensative to sugar, even natural sugar. I would get dizzy, break out in sweat clear down to my ankles (and I do not sweat), I would be sick to my stomach and felt like I could pass out. I went thru testing. First doc said I had pre-diabetes which totally floored me but I went on a restricted diet. Even the tiniest amount of ice cream was sending my blooed sugar too high, it was really weird. I was on a no grain, no sugar diet fro 6 months. Went to a new doc that looked at all my previous lab results, had my A1C retested and she told me she felt my pancreas was not working properly, that I did not have diabetes. So what I did, is I looked up how to eat to repair the pancreas. I wa scared but I did allow some grains back in my diet, no more than a 1/2 cup per meal and limiting that and careful with all sugar. I then started juicing, lots of veggie drinks with just enough fruit to sweeten the drink, problem solved and I am serious. I still drink at least one veggie juice drink a day, I load my diet with veggies and on days I don't I just do not feel right. I can actually eat a little bit of ice cream now but I keep all grains and asugars to a limit. I hope that helps, that is what worked for me.

  7. I'm also getting my hearing check, because I've had awful tinnitus for the past year or two. I just wish I could have some "peace and quiet".

    There's a variety of things that can cause ringing in the ears and not everyone is the same. Mine finally went away when I went off all grains and sugar. I currently allow a little grain and a little sugar but I have to be very careful or the ringing comes back.

    It is not always easy not getting support especially from a spouse. When I was first diagnosed it was not by tests, it was by a doc who decided to call it celiac based on symptoms, going off wheat and then going back on and getting terribly sick. So husband would tell people "we weren't sure it was celiac, that maybe my system just needs time to heal."

    After reading so much about how bad wheat is for you I convinced my teen daughter to go off and my husband even gave it a try. My daughter noticed a difference, said she felt so much better. Husband said it made no difference to him and went back to his gluten stuffing. I still have a hard time watching him fill his mouth and plate with gluten as I truly it is bad for people in general.

    I used to tell everyone my story and I used to hard about wheat but I have finally gave up, people don't want to hear it, they don't want to try it and they don't think it applies to them. One of my last straws was with my husband not that long ago. He said, "I am sure glad I don't have issues with wheat." I didn't do well with that statement. I really don't think he gave a real good honest try so how would he know and that was the last for me to talk about gluten.

    My friends have been great, my daughters wonderful.

  8. After over a year off wheat I was still having trouble with inflammation....it was like my body was on fire and I never knew what was going to happen next....it was like my body was still being attacked by something.....so I went completely grain and sugar free. It made a huge huge difference for me. I found when I was completely grain free though I would after a good length of time have to almost binge to get my carbs or I would find myself very tired. Now I allow 1/2 cup grain from time to day, not even every day. I had to find the right balance for me. I do allow some sugar but again very little. I went to juicing, replacing one meal a day with freshly juiced veggies with some fruit and that has helped my energy levels a great deal. So I think it depends on each person and what they are dealing with as to whether grain free is good for you. Grains are important if they are not causing the body issues.

  9. wow thats amazing! What is nettle tea? Is it like an herbal tea? also, can you just get it at the grocery store? or health food stores?

    Skittles, nettle tea is made from the weed/plant, nettle. Have you ever heard of stringing nettle? It is a tall green plant that grows wild at least in Europe, not sure where all it grows. There are some teas that come mixed but I actually like the one that is nothing but nettles.

    After my first week of more of daily nettle tea I backed off to 1-2 cups per week only steeping the tea for approx 1 minute (otherwise it is too strong for me) and I have not had any inflammation issues since. My body is no longer on fire and I am no longer chasing the next health issue. I actually feel normal now.

    My husband has problems with gout and has been using the tea as long as I have and is reaping the benefits himself. We ran out at one point and he noticed he started having cramping in the arches of his feet which he had not even realized had gone away. He feels the tea keeps the cramps in his feet away. He drinks the tea almost daily but my body is super hyper sensative so I have to be real careful.

  10. IrishHeart, you are so correct about the pain I was in, it was terrible! I feel for all of the newbies with the same issues. What I can say is 'don't give up, don't stop trying, continue to find what works for you body.' I think people thought I had lost my mind, a real freak but I had to do what made me feel better. I have learned an awful lot in the last 2 years. Feel better now than I have in many years. My husband even mentioned he sees a huge difference in me.

    Wanted to share this link also. I have been doing yoga and have finally got rid of the nerve pain (pins and needles) in my feet due to 2 bulging discs in my back but I was also having a different type of nerve pain in one of my feet...podiatrist said the nerves were inflamed....he tried various treatments including a cortizone shot to the foot which lasted about 6 months and then the pain came back. I am also finally noticing a difference in this pain and I don't think it is from the yoga, I could be wrong. I think it is from the nettle tea. http://www.livestrong.com/article/17727-natural-treatments-peripheral-neuropathy/

  11. Wow, amazing to have any doc actually tell you this. I have had issues with neuropathy for 2 years now, had all kinds of tests done, have done lots of reading. Make sure you are taking a very good B complex as the B vits feed the nerves. B12 is very hard to get into the body so we have to take it in greater quantities but a complex has it in the proper purportions. Keep taking your vitamin C as well, as good for the nerves. Are you having actual pins and needles pain? I have had them in my feet. I used L-carnitine, 1000 mg daily for the first year and then was able to reduce it to 500 mg daily.

    Just over 2 weeks ago I was able to go off the L-carntine. After repeated visits to various docs and lots of blood tests and you name it, a doc finally figured it was my back that was causing me issues. I ahve been doing yoga now almost daily for 2 weeks (this is after some treatments on my back) and now the left foot is good and only an occasional twing in the right foot.

    I would hate to see you go down the road I went. I would make sure this is not coming from your back before you decide for sure it is gluten related. I have 2 bulging discs in my back. 2 different docs said my back was fine but I finally had an MRI and it showed the problem.

  12. Yoga, that"s what a gi recommended for my ibs. I thought he had lost his mind ! I need something for lower back pain, i just may give this yoga a try. I"d do anything at this point to stop my back from hurting all day everyday. Did you take a class or figure out how to do yoga online?

    I bought a 3 disc set of DVDs for BEGINNERS, lol! I knew my back was too stiff to even touch my toes and I sure did not want to make a fool out of myself in a class. I am actually very amazed the difference this has made for me and I highly suggest it for anyone dealing with back pain. My husband, retired Air Force, has been doing it with me along with my teen and we are all seeing benefits!

  13. I so get it! I too would see people eating gluten and not understand why it was effecting me and not them, ugh! But you know once you get used to the diet, get used to asking waiters and waitresses all the needed questions the diet becomes part of your evry day life and that resentment kind of goes away. We learn there are so many more foods to eat, much healthier foods infact! I normally don't even eat gluten-free breads or cakes. The other day I made some rolls and had a half of one and reaized while eating it I really don't miss bread in my diet at all!!

    Accidentally glutening? We have all done it. All I can say is learn and forgive yourself rather than kick yourself. I normally go to pretty much liquids to pass it as quickly as possible. I also take activated charcoal tabs which I have found help a great deal for me!

  14. No supplements, teas, or herbs (or making sacrifices to the gods) seem to help me.

    I have decided to just do it full throttle --after doing is "sort of", I went full paleo 4 days ago.

    No grains, dairy, legumes, sugar , soy (those last three were easy--I don't eat soy at all, sugar whips me up like a 3 year old

    on Christmas Eve and causes insomnia and except for chili and soups, beans are not a big part of my diet. Hate peas. Peanuts are not a big deal to me either). Cheese, rice, white potatoes--these are tough to sacrifice. sigh.

    But anyone who has gone full paleo --AVR included--has reported a reduction in inflammation, so I have to do it. The pain is maddening.

    I'll keep you posted. (..........but cavemen drank gin, right? :unsure: )

    Yes, grains and sugar are culprits for my inflammation and so staying away from them has done wonders for me. I do however eat aged cheese and white potatoes but very limited on the potatoes. The potatoes don't seem to give me issues.

  15. Tomorrow will be two weeks of drinking a cup per day, some days two. Positive things that I cannot prove are connected to the tea, but I am hopeful.

    Accidental glutening symptoms were less severe than in the past. The gluten was from almonds packaged on the same lines as gluten and was obvious within half hour of ingestion. My symptoms are usually severe for five days. This time they were slightly less severe and lasted for 3 or 4.

    I have had far more "vertical" time over the past two weeks. I was feeling quite ill one day and skipped the tea - the following day my joint/muscle pain was much worse.

    Again, nothing conclusive - but everything promising. Off to drink my morning tea biggrin.gif


  16. Trying to follow the thread best I could. It's good to hear some of you all have had good results. I ran out of my initial box I bought from the US and found a couple diffrent types here in Germany. Neither were as strong or as effective. My husband noticed the same, his cramps in the arches of his feet came back. So I have more from the US on order. Glad some of you are getting some relief from symptoms, and I will try the ginger tea myself.

  17. Here's my unscientific results so far:

    I have had 1 cup a day (from tea bags). I was noticing that some stiffness in joints seemed less. Yesterday, I didn't have any. Woke up several times with pain in hips and shoulders. My feet and fingers are stiff this morning.

    I'm drinking some right now!

    YAY!!!!!! My daughter also has trouble with inflammation especially from corn. Recently she ate something with corn, started feeling the inflammation, drank the nettle tea and it went away!!!

  18. UPDATE: Well, I think I FINALLY have an answer to my pins and needles pain that I have had for the past 2 years!!! It was my back as my last doc suggested. I have been doing yoga every day and am loving it! I have not taken my L--carnitine for the pain for over 2 weeks and have only an occasion lil twing now in one foot only!!!!

    Also, I am connecting sugar to the spasms in my legs. I have been even more careful with the intake of sugar and I have had many restful nights. Had a small dish of ice cream a couple weeks ago and had a absolutely miserable night of spasms.

    Thought I would share in case this might help anyone esle!