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New With Many Symptoms

jhol

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jhol Enthusiast
jhol
Posted

hi my names jill an ive been waiting for results for endoscopy for 4 weeks now. ive been reading these threads for weeks but have been waiting to be diagnosed before joining. i cant believe how much your post (eclara) sounds like my experience.i phoned my docs (yet again to see if results had arrived) finally they said a fax had been sent- results showing within normal range-wotever that means -no mention of celiac. ive got an app on jan 10 to discuss with doc. im absolutely gutted cos id convinced myself they were gonna be positive.i suffer with brain fog- to the extent that i forgot where the light switch was in my living room!! peoples names are a complete no no and even following a simple conversation is a chore.i have terrible pains in legs and feet - stairs are a nightmare.i have a problem with anxiety and dark repetetive thoughts- even when im thinking them i know they,re not right and struggle to get them out of my head. your comment abt thinkin you were a ghost really struck a cord with me - i think i see things in my periforal vision -sorry abt spelling, and think i hear my name being called and have a sense of being watched. id started to think i was nearer the other side than here!! just realised that i sound like a nutter lol but i consider myself very normal ha! ive had a small blistering rash on the palms of my hands for abt 16 years now and a rash on my face for abt one year that started as a small red patch and has spread across the whole of my face.(not noticeable with makeup on) its now started to get pimpley like acne. the palm rash id put down to palmoplanter pustular psoriasis( by lookin on google)cos id read you cant get dermatitis hepeformis on your palms, but i found some pics the other night showing dh on the hands. ive put on loads of weight that i cant lose, am exhausted all the time an ive had more things done to my teeth these last 2 years( to the extent that my dentist asked if there was anything wrong with me) than ive had done in the last 20! i dont suffer with the gastro problems so am still eating wheat, but had a major problem with coleslaw for some reason. i actually thought i was dying i was in so much pain. think its either the vinegar or the raw cabbage - been to scared to try either of them as a test. my vision changes - think its food related- thought i needed glasses but then its perfect. struggle to see with dim light and think ive a problem with oral allergy syndrome with fruit especially melons and citrus. which was what sent me to docs in first place.i have extreme bloating, which i affectionately call my baby belly, that has just recently started to gurgle quite a lot. sound like a proper hypochondriac!! dont really know what im saying or asking but any imput will be appreciated. its a bit of a chore at docs and feel family are just "going along" with what im sayin to them. im hoping to get some answers at docs next week an maybe sent for allergy tests. oh forgot to say my hands improved a bit when i cut out dairy for a while and the rash on face has just this week become irritatingly itchy. if anybody reads this - ta! sorry its so long and have a happy new year!!! ( cannot believe im in on new years eve sat im front of a computer.)!!!! if i get no joy from docs im thinkin of cuttin out gluten anyway and seeing what happens...

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Eclara Explorer
Eclara
Posted

hi my names jill

...

Hello, Jill!

I can definitely relate to a lot of the issues you're describing. I'm constantly seeing things out of the corner of my eye and whipping around to check if there's anything there. It's very disorienting! I have difficulty remembering things, too- I once forgot my own first name in a conversation and had to flounder for a painfully awkward 20 second silence until I remembered what it was. I also get disturbing thoughts stuck in my head and had chalked it up to anxiety, but they actually went away when I was gluten lite and came back during my challenge. I can understand feeling off the wall bonkers- every time I try to describe my mental symptoms to anyone I get flustered because it sounds so frightening when you put it into words, probably more frightening than it actually should be.

As for the coleslaw, could it have been really awful gas pains? Cabbage is cruciferous and a notoriously gassy food. I had an issue like that once where I drank tart cherry juice before I went to bed, and I actually got woken up in the middle of the night by agonizing stomach cramps. It scared me half to death!

I don't really know anything about DH, my experience with facial rashes is mostly in the rosacea department. With rosacea the rash generally flushes hot at times, especially with triggers like stress or heat, and tends to be painful.

You might want to consider starting a new thread in this forum, I think a lot of people have already checked mine and you might get more (and better informed) responses if you start a new one!

I hope you can get all of this sorted out, I know it's no fun to feel like your body is punishing you.

jhol Enthusiast
jhol
Posted
  • Author

hi thanks for replying i,ll think abt starting new thread once i get the hang of this forum and posting stuff . im not good with computers, especially with this brain of mine not workin like it should. thanks.

kareng Grand Master
kareng
Posted

I just split this out for Jill so she could get some comments on her own situation.

kareng Grand Master
kareng
Posted

I think 4 weeks is too long to wait for your results! When you go to the doc and get them ask for a copy of any blood work and the pathology report from the endoscopy.

This thread might be a good place to start your reading.

For myself, I was so anemic that I could barely breathe. I think I wasn't getting much oxygen to my brain and it made it hard to think. Once I got the anemia partially taken care of ( twice a day iron pills, taken on an empty stomach and don't eat for 2 hours after) in 3 weeks, I was thinking better.

GFinDC Veteran
GFinDC
Posted

Hi Jill,

Welcome to the forum and to the year 2013! :)

I agree with Karen, 4 weeks is plenty of time to get your test results. Getting a paper copy is very handy for your own records. Did they test your thyroid also? And vitamin and mineral levels? Blood glucose? Those are all basic things to have tested.

Regardless of how your celiac test results come in, it is worthwhile trying the gluten-free diet for a few months. The gluten-free diet won't hurt you, and it may help, so it is not bad bet to give it a shot.

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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