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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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    • It starts as a piercing itch and the skin turns reddish with a few tiny red bumps. Then tiny watery vesicles appear and itch like crazy. The whole process from start to finish is about 3 weeks and the lesions leave a purplish skin tone and scab. I get them on the back side of both knees near the bend.  Sometimes it's just a few scattered vesicles in the same area. I've had Drs say eczema or herpes. My next step is to find a dermatologist familiar with dh. Thanks for the input.
    • DH can look like that but other things can as well. It would help if you described the way it acts/presents. You can get a dh biopsy. Read threads in this section to find out how the biopsy is done correctly. 
    • my celiac was triggered by pregnancy.  had no clue.  symptoms creeped up (started with indigestion, deemed as 'colitis' or 'ibs') but eventually all the ones you mentioned above all joined the party.  sounds like you are headed in the right direction.  one of the points of diagnosis is the reaction to the gluten-free diet.  keep digging.  half the people on here don't have a firm diagnosis (science really needs to catch up with this disease)  and a false negative blood test is fairly common, for whatever reason - if you've not been eating gluten every day for like 8 weeks, it may not detect antibodies, which is what these tests are measuring.  sorry you're having this dilemma!  hope you find some answers.
    • tom & chee!  good to know   they grill the sandwich on a separate pan?  or do you just order soup and salad.  so cool to find more places to eat out!!
    • Hi everybody,  I have had symptoms of Celiac since mid pregnancy and they have gotten worse over the last 5 months post partum. I have constipation, periods stopped, extreme fatigue,  joint pain, weak muscles, dizzyness, migraines, light sensitivity,  pins and needles in hands and feet, elevated TSH, depreason and anxiety. Was put on thyroid meds but it didn't help any of my symptoms. My doctor told me to try gluten free and reintroduce it. I tried it for 2 weeks and started feeling quite a bit better, then reintroduced it and felt worse than ever! It's definitely a gluten problem. She suggested I get the Celiac panel run so I got tested for Ttg iga, DGP igg and EMA all came back NEGATIVE! by this point I had only reintroduced gluten for a few days. She said my antibodies shouldn't go down by much in this time frame. Should I push for a referral to a GI doctor? I don't know why I feel the need for diagnosis? Probably my mother in law laughing when I said I can't eat gluten anymore and she tried to offer me things like donuts, saying it's just a little.  She just doesn't get it. So now, do I suffer for 6 weeks to get the biopsy or just stop eating gluten and be done with it.  I have also noticed while introducing new foods to my baby that he throws up whenever I give him anything wheat based. I doubt they can diagnose a baby and I refuse to damage his intestines for a diagnosis.  Maybe I should get my daughter tested as well? She is 3 and has been complaining of upset tummy and is frequently constipated. She is growing well though but is also quite thin. She is not a big eater. She may be constipated because she holds it. She is afraid to poop on the potty. Since I have had symptoms for only about 10 months, could there not be much damage yet? Sorry for the long post! 
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