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Morgan925

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Morgan925 Newbie

Hey Everyone~

Believe it or not, this is my first forum post ever. I wanted to see if any or all had any insights into what I might be going through. I moved to the San Francisco area 4yrs ago from Hawaii. I started a new job and as the new job got underway, I began noticing I was having a lot of fatigue. I waved it off at first, just thinking this is probably related to the stress and anxiety of the job. 4yrs later I still have the fatigue, just significantly worse. I've taken all the necessary steps and tests due to having a healthcare background. First started with the good old sleep study, which of course showed sleep apnea...I'm a big guy~250lb...not obese, athletic. I started the CPAP at night which at first seemed to help, but after a short week or two, same fatigue setting back in. Next, was regular lab tests at PCP..Vitamin D was low...started taking 2000U VitD daily. Fatigue still present...now to the endocrinologist...thyroid all normal...but, testosterone on low normal side and I'm young (30yrs old). Start on testosterone replacement therapy. Began the injectables because I have a young child I don't want to get into the gel as many would understand. Fatigue is still there, not as bad, but there. I started a gluten-free regimen about 1week ago b/c the more I read, the more I feel there is one common denominator to all this fatigue. I've really never had to many GI problems, friends and family would say I go a lot through the day, but never diarrhea or constipation; however, I have had problems with acid reflux now for some time. As you can see, this is becoming a laundry list for me, and up until the last 3-4yrs I have been in great shape, health, and mind.

Does anyone have any insights into this? I like the gluten free regimen so far, and have stuck to it tightly. I actually like the way I'm eating much more now. I stick to raw foods and cook them with light seasoning. Oh and for the caffeine and alcohol question...gave those up when I started gluten free. Hopefully things improve, but in the meantime...any suggestions or advice are very welcome.


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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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