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How Long B-4 Brain & Body Working?


Tom2

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Tom2 Rookie

Self Diagnosed Celiac November 2010 thanks to brother #2. Hi everyone, New here to the forum.

At age 54, after 4 doctors and 12 long years of suffering, I had to quit my stressful job almost 2 years ago for what I know now is celiac. Was unable to work, think or even get out of bed most days. Had Severe Chronic Fatigue, Sleeping 20 hr. a day, Severe brain fog, blurred vision, migraines, Candida, Joints, muscles & bones in pain, tooth enamel gone, ruptured disc in neck, toward end had minor vomiting, GI, etc. Discovered from research after quitting job that adrenals seemed to start shutting down toward the end, as Cortisol levels were low. Been gluten-free for almost 1 year and most of these problems have left except for some fatigue and Neuro issues. After 1st week of being gluten-free, it was as though my body was No longer in 24/7 survival mode but rather felt like brain and body had completely shut down to repair. This has lasted for several months as I am learning about cross contamination.

Mother (76) was diagnosed with celiac over 30 years ago after suffering several years, but doctors did not tell her it was hereditary and to have kids and siblings checked. Her symptoms were totally different than mine and she is gluten-free but not educated about CC.

Anyway, I thought maybe some one could tell me when I would feel like working again as I feel that everyone here (except for brother with celiac) doesn


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CR5442 Contributor

You sound like you have had a really tough time. I would just listen to your body with regard to how soon and how much work you take on. Your body and mind are exhausted for some time after giving up Gluten. It takes the adrenals a long time to recover too. How do you feel physically and mentally in yourself now? Do you feel ready to up the gears a little (not to workaholic status that's for sure!).

AVR1962 Collaborator

Tom, like you, my search took too long all the while my body suffering from something that is completely preventable....too bad testing isn't more accurate. I am 48 and what finally got me was the neuro issues, I was losing my hair, I was bearely able to function. It felt like I had Alzheimer's and I was afraid I had MS, crazy what gluten can do for you.

I have been gluten-free now for over 6 months. My body was terribly deficient in vit and minerals and my gut was tore up. I went to a low acid diet and have been supplementing since June. My last symptom to fix was my vision issues which was due to a lack of vit A. With all I have done I can say I feel almost normal again....lol, but if you looked at my med cab you'd think I was nuts!

To answer your question, I think it is depends on many factors as to how long a person takes to get back on their feet. For us who have neuro issues it seems to take longer. Any symptoms left for you at this point? Are you supplementing?

ravenwoodglass Mentor

It can be difficult to reenter the workforce when we still haven't fully healed. I don't know what your occupation was but there is a possibility that someplace like Vesid might be able to help you reenter the workforce in an occupation that you can handle. For myself I do volunteer work that has showed me how much stamina I really have and part time is really all I can physically do so I am doing work over the internet to supplement my income. Sometimes it is hard to get others to understand that no matter how much we want to go back to our old hard working days it just isn't physically possible. That can be really tough on our selfesteem especially when friends and family don't understand. Then we have to rethink how we are going to be productive and make enough money to survive. It isn't easy and I wish I had some magic bullet for you and for myself. If you are not taking supplements then it would be a good idea to get your vitamin and mineral levels checked by your doctors as some of us can be deficient even after the gut has fully healed. Supplementing what we are low in can help us feel better. Also be really careful to avoid CC and eat as much whole unprocessed food as you can.

Tom2 Rookie

Thanks for the all the help & advice. My medical issues are a lot more than I listed but I strongly believe that I will find a way to conquer this disease. I have been supplementing with more vitamins and supplements than I can type but down to a few now. In the last 10 years I have spent more than 15 thousand $$$ on vitamins, minerals & supplements and anything else I thought would help my mysterious illness. I have found over the past few months that a lot of the vit. & sup. I was taking was cross contanimated after ups and downs and quit taking them. Also been trying to balance my PH and get it to 7.0 but is difficult to get past 6.5... I have also done liver flushes & ionic foot detoxes.

Sometimes hard to get out of bedroom much less the house and I believe I have been getting cross contamination on a daily basis. The measures I have read you go through to prevent CC is much more than what I have been practicing. I think a lot of my neuro issues involve depression as I don't feel much like going outside or being around people and may be from the CC.

Thanks again for all your help. I have read many post in past few weeks and feel I have learned more here than all the books and articles I have read in last year.

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    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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