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Jillian From Uk Not Diagnosed Celiac.
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7 posts in this topic

hi everyone,

im new here, i was waiting until i was diagnosed properly before joining but things havent gone to plan lol. heres a quick overview of whats been happenin. im a very healthy (as in never catching anything -not even chicken pox, measles as a child - nothing) person.at 18 i got a bad dose of pleurasy - had never even heard of it, then had allergic reaction to the antibiotics. got through my twenties with no major problems, but then i hit my thirties - put on loads of weight ( goin from a size 16 to size 22-24 at my biggest. i was falling asleep all the time , no energy and my periods became erratic.thought my hair was thinning at the front but nobody else could see it!! went to the docs saying, its thyroid probs or early menapause.they said blood tests fine - no problems at all. this went on for a few years untill eventually i was put on anti-depressants (which i never took because i felt they were just masking the problem. i also started with a rash on the palms of my hands( ive had it for over 18 years now - steroid creams do nothing)

by 36 i was suffering earache which seemed to come on a monthly basis( felt it was connected to my periods - doc dismissed this as he,d never heard of such a thing!) eventually diagnosed with ear infection - possibly due to me poking them lol.then had another allergic reaction to the antibiotics. soon after i began having what i thought was conjunctivitis- again on a monthly cycle. left them for a while untill i woke on day to find i had proper devil red eyes -went straight to a walk in center and was sent straight to hospital. docs didnt seem to know what it was and on the 4th app was told it could possibly be scleritis. didnt know what it was and by this time i was so fed up i didnt go back. ive since googled it and dont remember being in severe pain - rather extreme discomfort. i dont get the red eyes now but they,ve never been the same, always feel dry and scratchy.

then last year put a stone on in 6 weeks and have never lost it. im now 16 1/2 stone and feel awful. by now im suffering from extreme pains in legs and feet and lower back. im worse when ive been sat down for a bit. i look like 90 year old woman in the morning, staggering about untill i get my feet under control lol. i creak and crack for abt 30 mins untill my body has warmed up!! the docs have just told me all my problems are due to my weight !! ive even tried them fat binding diet pills- they did nothing coz i wasnt eating enough fat anyway! last time i went to docs i said i think all my problems were connected ( i started with odd food intolerances) think she only took notice coz id kept a food diary of the symptoms. it was her that mentioned celiac - blood tests negative, endoscopy - need to see her for a chat - but receptioist said results were within normal range!! im gutted.!!! ive been reading abt celiac and have convinced myself it is what i have, ive been crying and feel an absolute idiot - hate feelin ill...

anyway if youve managed to get this far - thankyou. i dont suffer from the gastro problems so im still eating wheat for now. my problem seems to be excessive bloating, the joint pains and repetetive thoughts and anxiety ,dark thoughts by the way that i struggle to get out of my head,see thing in my periferal vision and feelings of being watched- i feel like a complete nutter lol. i can assure you im not, i regard myself as boringly normal.haha! my latest symptom is a rash on my face that started as a small red patch along my hairline and has now progressed all over my face. its unoticable under makeup but has just started to get " pimply" like acne. the other night i got extremely itchy on my face thats never happened before. ive googled dermatitis hepiformis- but my rash is nowhere near as bad!! im seeing my doc next week for the results - explained properly . im sick to the stomach that shes gonna say - nothing wrong, as i,ll be in the same position as i was 5 months ago. do my symptoms sound like celiac- or more like food intolerances. would really like some input from the long term members. im thinking of doing a gluten free trial if things dont go to plan with the docs. thanks - all input welcome!! im a pretty happy person despite what ive wrote here!!! honestly lol...

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Jillian welcome to the boards :)

I am in the UK too, and have also been regarded as a nutter for suggesting my many symptoms might be linked. I moved and my new doctortook me seriously. I couldn't eat enough gluten for testing so have negative blood and biopsy. However, based on history and reaction to eating gluten and gluten-free diet my GI diagnosed non celiac gluten intolerance, cannot rule out celiac.

I gave up gluten before this anyway.

It would really be worth having a go gluten-free if your reading about celiac symptoms is ringing so many bells for you. There is a list of 300 symptoms, and you can have any combination of them or none and have celiac. The NCGI is only just being recognized, so maybe you can join us pioneers...

That is some history, I hope you find some relief.

Hang about here and ask lots of questions :)

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Hi Jillian,

I replied to your other thread also. Anyway, celiac can affect your brain and nerves in a couple ways. Mal-absorption of vitamins can affect nerve function and cause symptoms. Gluten ataxia is another example. In Gluten ataxia brain cells are damaged and people lose motor control and have difficulty walking. Gluten peptides are supposedly able to link to some brain cell receptors like natural body chemical signals, but of course they aren't natural body chemicals, so that's bad. If you do a search on gluten and opioids or opiates there are several articles about it. Gluten has been linked to schizophrenia, depression and anxiety symptoms also. The short temper thread below talks about people being easily angered due to celiac affects. I had that issue. Another common complaint on the forum is brain fog, where people feel confused or are forgetful. We tend to think of our brains as being isolated from the rest of the body but they are not totally immune to things happening in the body. But the good thing is that going gluten-free and healing the gut can go a long way towards resolving those kind of symptoms. Nuerological symptoms are reportedly slower to respond to the gluten-free diet than digestive symptoms, so it may take a while. 6 months to a year and a half perhaps for some people. We are all individuals and heal at different rates.

If you can find some sub-lingual B vitamins it may help. Or take a B vitamin complex. Getting your vitamin and mineral levels tested first is a good idea so you know what may need supplemented.

Short temper thread

http://www.celiac.co...per-depression/

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Hi Jillian,

I replied to your other thread also. Anyway, celiac can affect your brain and nerves in a couple ways. Mal-absorption of vitamins can affect nerve function and cause symptoms. Gluten ataxia is another example. In Gluten ataxia brain cells are damaged and people lose motor control and have difficulty walking. Gluten peptides are supposedly able to link to some brain cell receptors like natural body chemical signals, but of course they aren't natural body chemicals, so that's bad. If you do a search on gluten and opioids or opiates there are several articles about it. Gluten has been linked to schizophrenia, depression and anxiety symptoms also. The short temper thread below talks about people being easily angered due to celiac affects. I had that issue. Another common complaint on the forum is brain fog, where people feel confused or are forgetful. We tend to think of our brains as being isolated from the rest of the body but they are not totally immune to things happening in the body. But the good thing is that going gluten-free and healing the gut can go a long way towards resolving those kind of symptoms. Nuerological symptoms are reportedly slower to respond to the gluten-free diet than digestive symptoms, so it may take a while. 6 months to a year and a half perhaps for some people. We are all individuals and heal at different rates.

If you can find some sub-lingual B vitamins it may help. Or take a B vitamin complex. Getting your vitamin and mineral levels tested first is a good idea so you know what may need supplemented.

Short temper thread

http://www.celiac.co...per-depression/

hi thanks again for your imput, ive read the short temper thread - was very interesting, some things rang a bell although thats not really me . im more anxiety, deep thinking, turning things over and over in my mind. i look at people sometimes and wonder -why are you so happy, is that normal to be so happy all the time??? why am i not happy all the time!!!!. no answers just the same old questions over and over.when out with friends havin a meal i listen while they oooh and ahhh over the absolutely gorgeous food they,re eating, my food is just ok!!! i so want it to be absolutely gorgeous but its not. and that just about sums up my life. god the depression has struck again lol.

when the receptionist told me my results i threw a bit of a wobbly and decided- why am i eating this restricted diet ( due to my food intolerences) im gonna eat what i want. well i bought some sugar puffs and milk - got sick of toast for breakfast - 3 days later im havin a major nobody loves me , everybody hates me moment!! my lifes crap, what am i here for- blah blah blah¬!! luckily im rational enough to realise these are passing thoughts and not serious!!! one of the reasons i was hoping for a diagnosis is because my oldest niece- aged 8 is showing signs of extreme anxiety. she has always been very serious,worried about doing the right thing ect, needs to know whats happenin, when, whos going to be there, will u be staying, leaving,how long will u be gone!! the list is endless. we thought she would grow out of it but its got to the point where shes going to see a child psychologist. i feel my sister could stop this by asking about celiac - but she said she would if i was diagnosed with it. i dont want my niece growing up feeling like i did and im now thinking i wont get the diagnosis i want.

thanks again and hope i havent been too melancholy again ha!!

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Hi Jillian,

I don't know if you have DH or not. I do know DH is not always the same. Some people have rashes that start on knees or elbows or other places. And sometimes it is on the scalp, back, etc. It is not always the full blown worst condition of it when it starts either. It can start small and progress and get worse over time. People with the DH rash tend to have fewer GI symptoms also. At least at first, they may develop worse GI symptoms later. There is a section of the forum dedicated to DH where you might get more knowledgeable help on it.

There is also NCGI which acts like celiac but they don't test for it right now.

Non-celiac wheat sensitivity article

http://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

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Hello Jillian

Where about in the UK are you?, I'm in the south about to move to Bournemouth.

Sorry you're having a crap time, you're in the right place though, these guys on here are wonderful. I've just been diagnosed, gluten-free for 3 months. I had a rash very minor though compared to other pics. Mainly on hairline down the sides... A little bit in the middle of my back and my chest and shins. Only say 5 -10 spots in each area if that, but im sure it was prob dh. I also have had fewer gi symptoms. And the also the depression! I actually thought I was bipolar tbh, swinging from suicide to mania. Thankfully all gone now...

I knew it was the gluten after going gluten-free for 2-3 days, my body sighed relief!

Good luck with it all, you'll get there, and remember that alot of health probs are caused by what we eat... A lesson I am still learning and experiencing! Hugs

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Hello Jillian

Where about in the UK are you?, I'm in the south about to move to Bournemouth.

Sorry you're having a crap time, you're in the right place though, these guys on here are wonderful. I've just been diagnosed, gluten-free for 3 months. I had a rash very minor though compared to other pics. Mainly on hairline down the sides... A little bit in the middle of my back and my chest and shins. Only say 5 -10 spots in each area if that, but im sure it was prob dh. I also have had fewer gi symptoms. And the also the depression! I actually thought I was bipolar tbh, swinging from suicide to mania. Thankfully all gone now...

I knew it was the gluten after going gluten-free for 2-3 days, my body sighed relief!

Good luck with it all, you'll get there, and remember that alot of health probs are caused by what we eat... A lesson I am still learning and experiencing! Hugs

hi there, im in manchester

goin to docs on thurs to go through results, which i think are gonna be clear - dont know if i should laugh or cry! any how i commented on a thread the other day about rash on face. ive got a feelin its coz ive been using a natural , free from range of vitamin e oils and moisurisers. i think i got the rash after using hairdye - then i gave up all the expensive anti wrinkle stuff for this natural range . ive come to realise - think ive read it on the net somewhere- that most vitamin e is sourced from wheat!!!! im gonna try to find out if the problems i had with my eyes could have been caused by nourishing wheatgerm oil in mascara!!! if so maybe im wheat sensitive, with a possible dairy intolerence - the rash on palms is worse since drinking milk again.

gonna try to get allergy tests done - but you know what doctors are like - i might have a fight on my hands lol. thanks for replying.

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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