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New With Many Symptoms
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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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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.

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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.

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

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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.

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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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    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     
    • So far dairy seems to be OK, as are eggs. I like canned chickpeas so will carry on with those. Beans I had ruled out at one point with the doctor's recommendation to go with the low FODMAPs diet but will reintroduce those now I know it probably wasn't that causing the problems.
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