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Feeling Insane, Pre-Diagnosis, But On Track
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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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    • hey! Wondering if I can get some good info/help from you guys! I just signed up for this website couple weeks ago. Whenever I would Google things this was always the first to pop up and I always found info on things I googled. I am pretty new to the gluten free thing. I had a hernia surgery back in Jan and after that I kept throwing up after eating, the DR. told me it was probably acid reflex caused from surgery but all the meds I tried nothing helped. I went back and was told to cut gluten out. I have been doing so since. When I first started I felt like I had it under control and didn't throw up for 3 weeks, now I find it happening more often. I do buy gluten-free things and read labels to the best I can. My frustration comes from not knowing what its from. How do you know if its from the day before or what you just ate? I hate not knowing. Especially when I haven't had gluten (or so I think) I have been keeping a journal but I just find it so hard. I get this feeling in my stomach and can feel it in my throat. Sometimes I puke once sometimes 5 times! Yesterday for lunch I made an omlet with chicken mushrooms and feta cheese. I threw up almost 20 min after. I have also tried the no dairy thing and it doesn't seem to make a difference so I don't think dairy is an issue as well.
    • I have been on a gluten-free diet for exactly one-year. During that time, I have had no stomach issues or problems when I inadvertently ingested gluten. The other day, I had GI discomfort (no vomiting or diarrhea) and my blood pressure spiked t0 200/98 (normally 119/75). As my GI discomfort subsided, my pressure crept back to normal. This took about 16-hours. I know that I ingested something with gluten, which I had thought was gluten-free.  It never bothered me before. Should I expect that the longer I'm gluten-free, the more susceptible I will be to having a pronounced reaction to inadvertent gluten exposure? Has anyone else had similar experiences with blood pressure spikes?
    • If this is helpful: My local public library had a copy of Breaking the Vicious Cycle by Elaine Gottschall.  There is a Facebook group, I believe it is easily found by searching SCD Diet, and it's a closed group.  If you go directly to the official website of Breaking the Vicious Cycle, there's lots of information for free available, including the basics about the intro diet and beyond.  I would go to the original source of this diet rather than go to other groups/books who have perhaps veered away from Elaine Gottschall's fundamentals. Best wishes to you!
    • AdrienJ, thank you so much! I dream of traveling more one day. I have spondylitis too. I'm so glad that a gluten free and casein free diet is helping you feel your best!
    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
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