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About Bananasbananas

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  1. Bananasbananas

    Thoughts on my first few weeks gluten free

    And there’s that brain fog. I went gluten-free the day of my biopsy. The doctor said to keep eating gluten up until then even though we knew it was damaging based on the blood work.
  2. Hi again everyone. I’ve been gluten free for 27 days now, and was officially dx late March with celiac. I received the diagnosis from a nurse over the phone, and my follow up isn’t til late June. I’ve been doing pretty well with everything but have so many questions. When I got my blood work back in December, I upped my gluten intake quite a bit— last time having all my favorite Christmas cookies, special holiday beers etc. I developed a really itchy rash around my mouth and nose bilaterally, which is still kicking around. Should I have this checked by a dermatologist or give it some more time to potentially respond to the gluten-free diet? At the same time in December, I really relaxed my workout regimen. I have felt for a few years now that I’ve been making less progress than the effort I was putting in. My iron has been an issue since early childhood, and I’ve been on supplements but it doesn’t make much difference. Now that I’m on the diet, I am trying to get back into a workout routine, but I’m left feeling very achy and fatigued after. So I’m wondering if I should just keep taking it easy and hold off on higher intensity workouts? The last thing I’ve really been struggling with is brain fog. I have an intellectually demanding job, and even the most basic words can be tough for me to recall. My focus has been terrible. Outside of work, I find myself starting different projects and never completing them, jumping from one hobby to the next in quick succession. On top of that, I’ve been pretty emotional and feeling like I just do not know how to properly care for myself. I feel like a complete space case. Are there supplements I could take to remedy this? sorry in advance for the long post. It is so nice to have this forum to seek advice. My family has been supportive, but they usually just say “it’ll get better, you’re doing your best..” etc without really knowing how to help. And I’m really eager to get back to my doctor, but he is a gastroenterologist and really only seemed interested in my GI symptoms the first time around.
  3. Bananasbananas

    The Nightmare Continues

    Yeah I used true health labs. My state actually was one of the blacked out states, but I drove an hour to a draw center out of state. Then I brought he labwork to my primary care and he wrote the referral for the gastro right away.
  4. Haha my husband calls me face blind. There are so many actor pairs that until I saw I side by side I had through they were just one person. Although I think I was thinking Matt damon was Mark walhberg? Lol I would need to see quite the large, multi-ethnic case control study to believe it had anything to do with celiac tho..
  5. Bananasbananas

    The Nightmare Continues

    This is why I chose a direct to consumer test. I’m sure my doctor may have been open to ordering the test based on my symptoms, but if they weren’t that’s a $300 office visit down the drain, while the test only cost me $200. Hoping for the best for you.
  6. @cyclinglady thanks for the reply, doctor finally called me back shortly after I posted- they think the doctor has the results for review, but they’re changing locations next month and everything’s a mess. When you say put it in writing- do you email your doctor, or physically send a letter? My docs office said they don’t have a secure email and I don’t have a fax.. I also did a bit more research on the endoscopy and will definitely be making sure it’s covered. I was spoiled with a great plan growing up and now that I’m on my own I’ve got a far worse one. Even with the referral I’ve heard people not getting covered because they didn’t make enough effort to “shop around.”
  7. Hello all- thanks so much for all the kind words on my first post, and hopefully I’m putting this in the right forum! I got my blood work back mid December, and still have not gotten the proper referral from my doctor to proceed with more testing. At first I was going wild eating all the gluten, because I figured I might as well say a proper goodbye, but my symptoms have gotten SO. MUCH. WORSE. I barely ever eat more than one meal a day lately because I just have no appetite. My face, knees and hands are flaring up with eczema, and I just have feel so blah. I think what’s toughest is just being in this mental limbo. I was thinking of starting something like a whole 30 or Fasano diet now (well, with the exception of including a “dose” of gluten a day). Is there any point? Do you think eating less gluten, but still eating a small amount would make a difference? Also does anyone have an idea of what the cost would be for me to just skip insurance and pay out of pocket? I pay for insurance but I swear it’s such a waste of money given the hoops you have to jump through to get anything covered :-/ thanks in in advance for any feedback! I really do feel like this is the first place I’ve been listened to since starting this process.
  8. Bananasbananas

    Just looking to talk

    Hi Matt! I think the reputation of being ~gluten free~ is what I’m most worried about. Other than beer I’m not super attached to gluten laden foods, so the diet doesn’t scare me as much , but I’m not always the best at advocating for myself. Hoping overall this experience will be positive and maybe I’ll improve on that skill set now that it’s more of a necessity.
  9. Bananasbananas

    Just looking to talk

    I definitely will! I had a positive ema iga (among other out of range antibodies) so unless my blood was swapped with someone else’s, i think the diagnosis is fairly eminent, but I do see the utility in the biopsy.
  10. Bananasbananas

    Just looking to talk

    I’m still wrapping my head around bread making me sick! I’ve always been a carb girl- although rice is my favorite, and I never liked pizza or sandwiches until the past few years. I guess it kind of explains why I’m such a bottomless pit haha.
  11. Bananasbananas

    Just looking to talk

    Thanks for redirecting me! Right after I posted I realized I might not be in the right forum. Until having blood work done this past year I thought I had outgrown the anemia, only to find out iron wasn’t my only deficiency. I am a runner though, so I am looking forward to hopefully seeing some changes with that once my nutrition improves. thanks so much for the reply!
  12. Bananasbananas

    Just looking to talk

    Im so sorry to hear about your family’s reaction. I think if I approach them differently next time I get a bit more understanding, but it is so nice to hear you’ve found a bit of family here i couldn’t imagine dealing with ataxia, is gluten ataxia reversible? I’ve found the most embarrassing symptom (at least I hope it’s related) is my loss for words. I think it’s mostly brain fog. I have a very academic job and find myself saying “excuse my layman’s terms, but..” pretty often. I’m actually 28 also and I’ve been told my grasp on sarcasm is fairly comparable to sheldon’s nice to “meet” you!
  13. Bananasbananas

    Just looking to talk

    I think I’ve been a little overly emotional lately, but your reply is really nice to read! I do think once the biopsy is over and I start making some real changes Things might set in a bit more and it all just becomes more.. normal? thanks for the reply!
  14. hello! Earlier this month I got my blood work back and it was unambiguously positive. I have my endoscopy next month,so I’m still eating gluten. I feel like this has both upended my life and has been so clarifying for me, but my issue is that none of my friends or family wants to talk to me about any of it. I’m really excited to finally be finding a root cause for so many of my quirks, like being so small as a kid I asked my parents if I was a dwarf, or my lifelong struggle with anemia. I tried to talk to my family recently and they basically just laughed at me. This is the first time I’ve gotten a major diagnosis like this and I just feel like I have so much to say and no one will listen.