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Doing a gluten challenge, getting more miserable each day... is testing worth it?

redclover22

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redclover22 Newbie
redclover22
Posted

About 9 years ago, when I was 27 years old, an old friend of mine moved in with me and I learned that she was really sick and suspected celiac disease. She turned me on to the paleo diet and learning about auto immunity, and I started reading everything I could get my hands on. I didnt really know WHY, because at the time I wouldnt say I was SICK, but I didnt feel WELL either. I had constant lower back pain, upset stomachs from time to time, had pain in my joints, was tired a lot, and had a lot of symptoms that were hard to peg like ringing in my ears and constant dental cavities despite brushing and flossing very regularly, and I had continually GAINED weight despite being active and "watching what I ate" (which back then meant veggies, fruits, and whole grains - big mistake!). Once I started learning about auto immune diseases it seemed like something clicked, and over time I felt like I could tell that gluten and coffee were having an especially bad affect on me. 

I hit an especially stressful time of my life about 3 years later (age 30) and my whole system went haywire. My ear ringing increased, and seemed triggered by food, I started getting heart palpitations and anxiety when I ate gluten and sometimes other things, I had terrible brain fog and felt like I was losing my memories, I sometimes had issues with holding onto things with my hands... like a disconnect between my brain and hand function. I occasionally had digestive issues too, but in hindsight, the lower back pain was most likely digestive issues and constipation, but it just felt like pain that made it difficult to stand up straight. My hips hurt and I felt like I was literally falling apart. My bones ached like they were empty shells. My heart wold race when I would eat gluten, and once I made that connection I knew I had to make a change. Because I didnt know much about how testing worked at that time in my life, I just decided to stop drinking coffee and eating gluten, and I felt immensely better. So I have lived gluten free about 80-90% of the time since then. I just figured it bothered me and I would mostly avoid it. Through all of this doctors failed me at each turn, never checking for the right things and leaving me to figure it all out for myself. 

Last summer (Aug 2017) about 1.5 years after having my daughter, I still hadnt lost most of the baby weight, my hair hadnt grown back (new moms often lose hair so I waited and waited thinking it would come back), and some of those extreme issues were starting to creep back in... so I started to research auto immune diseases again looking for answers and on a gut feeling decided to test myself for hashimotos thyroiditis. I didnt think it would be positive but I just had a feeling I should check... and guess what? It was positive! I started reading about it and read about the high link between hashi's and celiac and I had recommitted myself to 100% gluten free living because of the hashi's, but recently I started to think about getting tested for celiac once and for all just to know, so I started a gluten challenge. The first couple weeks werent too bad, and I thought maybe it was alll imagined a few years back. Slowly though the lower back pain has been creeping back in. My stomach had a dull ache in it constantly. Im starting to have anxiety and my heart races each time I gluten myself, and the brain fog and clumsiness is coming on. I never had that classic celiac reaction that some people have where Im in gut wrenching pain immediately after eating gluten, but rather this slow creeping affect that is cumulative over time, so I have been suspecting celiac but with a less typical reaction it has left me doubting myself... 

So what I really want to know is... 1) Does this sound like any of you that have celiac? I would love to hear from anyone who has less "typical" reactions to assure me that this gluten challenge isnt for nothing and 2) Is testing worth it? How has it benefitted each of you? I am about 3.5 weeks in, and according to what Ive read, I need to go 6 weeks minimum, and ideally 8-12 weeks of eating gluten for proper testing. Thoughts? Thank you all! 

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cyclinglady Grand Master
cyclinglady
Posted

It sounds like you really want to have a formal diagnosis. If so, stay the course, as you can not tell by symptoms alone as they often overlap with so many illnesses.  

How do you know you have Hashimoto’s?  

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