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Feeling Insane, Pre-Diagnosis, But On Track
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4 posts in this topic

Hi! I'm Jen and I might not be crazy.

I've been struggling with weird symptoms for years and years, I'm 31 now and strange things have been happening since I was a little baby. As a baby I was treated as though something was wrong, the older I got the more I was told I was nuts and my symptoms didn't make sense.

Over the last couple of years I've been feeling worse and worse. Test after test after test after test. Testing for lupus, rheumatoid arthritis, thyroid disorders and much more.

I was tested positive for Hashimoto's disease, and I thought I finally found the answer, but I met with an endocrinologist and he told me that regardless of having incredibly high anti-thyroglobulin antibodies, that my thyroid function is normal and that none of my symptoms are related. However, today he ran the blood tests to see if I have Celiac disease.

Now I'm just terrified that this isn't the answer and I don't know what else to do.

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Hi Jen, and welcome, and you probably are not crazy :) However, you are amongst many who have been told in their former lives that they were crazy. Fortunately, most of them did not believe it and went on to find out what was really wrong.

I am afraid you just have to sit tight and hold on for the test results to come back. You might try reading about how to do the gluten free diet in the meantime because I have a sneaking suspicion that this is information you might need.

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Hi Jen, and welcome, and you probably are not crazy :) However, you are amongst many who have been told in their former lives that they were crazy. Fortunately, most of them did not believe it and went on to find out what was really wrong.

I am afraid you just have to sit tight and hold on for the test results to come back. You might try reading about how to do the gluten free diet in the meantime because I have a sneaking suspicion that this is information you might need.

Well, at least I've discovered I'm very patient ("Patience" is tattooed across my knuckles). I've had to wait years just to have the appropriate thyroid tests run, what's another couple of days waiting on blood results?

I just can't believe how many "ah ha" moments I've had by reading articles on this site and by browsing some posts on this forum. I feel like I finally have a doctor going in the right direction.

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Well, at least I've discovered I'm very patient ("Patience" is tattooed across my knuckles). I've had to wait years just to have the appropriate thyroid tests run, what's another couple of days waiting on blood results?

I just can't believe how many "ah ha" moments I've had by reading articles on this site and by browsing some posts on this forum. I feel like I finally have a doctor going in the right direction.

You are going to need that patience, both with yourself and others, if your tests come back positive, or even if you trial the gluten free diet if they are negative. And the Ah ha moments continue - I still have at least one new one every day :rolleyes: Yes, patience is a virtue designed especially for celiacs, and those without it have a hard time. Bonne chance on your test results.

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      Update: I am about at my wit's end. I won't be able to see my new doctor until July 17 to get a referral to a GI doctor, so I continue to eat gluten and the effects continue to worsen. Today my boss, whom I have been working with for 12 years, and I had a meeting where he said he's noticed a change in many things, such as speech, not articulating well, forgetfulness, and other things that are affecting my work product. I finally told him I know there is something wrong with me medically and I've been trying to get to the doctor to no avail. I recall those four weeks early in the year when I tried out gluten free and was beginning to feel much better- more present, more sharp, and then went back on gluten in preparation for the blood test.  I just don't think I can do this gluten thing any longer and am thinking of going cold-turkey gluten free.  I'm 54 years old, am beginning not to care about a diagnosis because I just want to feel better and be able to do what I need to do. Because of how I felt going off of gluten earlier in the year, and eating gluten free when I was on the McDougall plan years ago, and how I feel while doing this gluten challenge, I am pretty convinced that my issue is gluten.  Any words of encouragement would be welcome.  If you've done gluten free and never looked back, tell me about it. 
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    • Gluten does WHAT to the brain?
      "Wondering what kind of life my brother could have had - if  he had celiac - constantly haunts me" My sympathies that is just tragic, as this story is.  I hope you are at peace knowing you are aware of your celiac and help so many lost, scared, and confused celiacs here. It can never bring back your brother but I hope it can give soften some of what you feel that was/is beyond your control. His suffering and your loss has made you a better advocate to yourself and in your work helping us. I don't like my body or my  brain on gluten either. I do fear that people overlook the toll inflammation takes on the brain. It likely may explain decades of mental illness that was brain based inflammation unknown until changes in technology advancement catch up. However consuming gluten to study how one enters psychosis may not be the best method. Do no harm.  
    • Gardasil
      I got this vaccination in 2009 when I was 20 and it completely altered my life. Made my celiac disease so much worse, sleep 15-18 hours a day, SIBO, it has completely altered my life since getting this vaccination. My doctor has two twin girls about my age and they both have digestion problems after receiving gardasil
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