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needtobebetter

Hello ..do You Remember Me..i Need Your Help Guys..

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Hi,

Dont know if anyone remembers me I was on here some time ago..

I fell ill two years ago had seizures, distention, fungal infections, sick all the time..

I went to a homeopath who said i had candida did her diet felty better but when came off diet was ill...

My docto wanted to test me for celiac so i had to eat for 5 weeks to do teh biopsy..was very ill and during taht time my skin started changing..had no moisture to it, pale, very dry and my cheeks wheni smiled were like crepe paper..I also have decreased elastcity in my skin ( iam only 31)..

After the biosy they sid no you havent got it, so a nurse at my department told me to keep eating it i was malnourished so i did i was so ill..I got extremley depressed and anxious as id had enough of it all..

Then I decided to try and antidepressant as i was in a sucicidal state..i took it on the friday felt very strange and was eating wrong so felt very ill..and on the sunday i dont really remeber what happened..but I had some sort of brain injury..my right side face dropped, wry neck, right sided muscl weakness and wasting..lost quit a bit of weight as well..and was on another planet..didnt know what was going on..

Ive now got a new doctor because the last wasnt helping me and wouldnt refer me where specialists wanted me to go (london hosp).

My new doctor thinks i have some syndrome neurologicla..but i went to a ciropractioner and he said you have either had a stroke or somesort of neuroliogcal disease....so iam waiting for a brain scan (happened 7 months ago) its taken so long as i went into depression and wasnt me if taht makes sense..i am trying to hold myself together because I did nearly go mad..

Even now I do the diet tw days then get down and have a peice of bread I did it last night and today swollen belly, feel like i jhave a hangover, constipated, nauseous..

Question: Do you think that may be I am malabsorbing which is effecting my skin..as the changes in my skin happened when i went back to eating normal??

I also saw another doctor who said just because it was negative biopsy iots not 100% he thinks that the antidepressants could of caused a reaction as the had maize starch in them ..??

I feel better when i have no carbs.

I also found out i have PCOS..which is autopimmune diseasee and I have blood sugar problems i think ..I put on weight very easily with carbs..and if i eat e.g. rice cakes I have massive fatigue within half hour..I think insulin is linked with pcos so taht could also be plyiong a part..

If it is malaborbtion ..if i stick to the diet can skin go back to normal once its lost some elastcity ..and if i have muscle wasting (ciropractioner said i have) would this cause slihgtly saggy skin..

I just dont know what to do about anything any more..its bad enough with the food bit but now I have a whole new problem..I have had a couple of people who think i have MG disease..which involves sudden paralysis, weakness muscle wasting etc..

Thanks for listening

If you can advice it would be very nice of you coz I feel like giving up at th moment xx

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Celiac.com Sponsor (A8):

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Hi,

Dont know if anyone remembers me I was on here some time ago..

I fell ill two years ago had seizures, distention, fungal infections, sick all the time..

I went to a homeopath who said i had candida did her diet felty better but when came off diet was ill...

My docto wanted to test me for celiac so i had to eat for 5 weeks to do teh biopsy..was very ill and during taht time my skin started changing..had no moisture to it, pale, very dry and my cheeks wheni smiled were like crepe paper..I also have decreased elastcity in my skin ( iam only 31)..

After the biosy they sid no you havent got it, so a nurse at my department told me to keep eating it i was malnourished so i did i was so ill..I got extremley depressed and anxious as id had enough of it all..

Then I decided to try and antidepressant as i was in a sucicidal state..i took it on the friday felt very strange and was eating wrong so felt very ill..and on the sunday i dont really remeber what happened..but I had some sort of brain injury..my right side face dropped, wry neck, right sided muscl weakness and wasting..lost quit a bit of weight as well..and was on another planet..didnt know what was going on..

Ive now got a new doctor because the last wasnt helping me and wouldnt refer me where specialists wanted me to go (london hosp).

My new doctor thinks i have some syndrome neurologicla..but i went to a ciropractioner and he said you have either had a stroke or somesort of neuroliogcal disease....so iam waiting for a brain scan (happened 7 months ago) its taken so long as i went into depression and wasnt me if taht makes sense..i am trying to hold myself together because I did nearly go mad..

Even now I do the diet tw days then get down and have a peice of bread I did it last night and today swollen belly, feel like i jhave a hangover, constipated, nauseous..

Question: Do you think that may be I am malabsorbing which is effecting my skin..as the changes in my skin happened when i went back to eating normal??

I also saw another doctor who said just because it was negative biopsy iots not 100% he thinks that the antidepressants could of caused a reaction as the had maize starch in them ..??

I feel better when i have no carbs.

I also found out i have PCOS..which is autopimmune diseasee and I have blood sugar problems i think ..I put on weight very easily with carbs..and if i eat e.g. rice cakes I have massive fatigue within half hour..I think insulin is linked with pcos so taht could also be plyiong a part..

If it is malaborbtion ..if i stick to the diet can skin go back to normal once its lost some elastcity ..and if i have muscle wasting (ciropractioner said i have) would this cause slihgtly saggy skin..

I just dont know what to do about anything any more..its bad enough with the food bit but now I have a whole new problem..I have had a couple of people who think i have MG disease..which involves sudden paralysis, weakness muscle wasting etc..

Thanks for listening

If you can advice it would be very nice of you coz I feel like giving up at th moment xx

Every symptom that you described is on the list of over 200 Celiac Symptoms. But I don't think that you should concentrate on just Celiac. A biopsy can be hit and miss and is not always accurate. I would pursue the diet (and do it 100%) while you continue to seek other medical answers.

Maise starch is not gluten related.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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You do sound like you could be one of us. I hope you are going to give the diet a good try. It sounds like you have neurological impact and it can take a long time for some of us to get enough damage to show up on a biopsy. The biopsies can also be hit and miss and it sounds like your doctors may kill you while you wait for a positive one. Do give the diet a good strict try, the only tests being on the diet will effect is the ones for celiac itself. You don't need a doctors permission to do the diet. And the results you see from it can be diagnostic in themselves. They sure were for me and my family.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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You do sound like you could be one of us. I hope you are going to give the diet a good try. It sounds like you have neurological impact and it can take a long time for some of us to get enough damage to show up on a biopsy. The biopsies can also be hit and miss and it sounds like your doctors may kill you while you wait for a positive one. Do give the diet a good strict try, the only tests being on the diet will effect is the ones for celiac itself. You don't need a doctors permission to do the diet. And the results you see from it can be diagnostic in themselves. They sure were for me and my family.

THANK YOU...

Thanks guys ..i know i prob sound silly i should just stick to it anyway..its the depression kicking in i dont think and just eat..and forgett how ill i am after..

hope your all well..

xx

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THANK YOU...

Thanks guys ..i know i prob sound silly i should just stick to it anyway..its the depression kicking in i dont think and just eat..and forgett how ill i am after..

hope your all well..

xx

Of course you don't sound silly. Being ill is VERY frightening, especially if you don't know why. Try the diet and take some time here to brush up on your gluten free skills. It's often that we hear from people whose depression lifts after some time on the diet. I hope it works for you.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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I'll give another plug for The Paleo diet (or any sort of evolutionary diet). It really helps a lot of people with their autoimmune diseases. Sounds like you could possible have one. Google "paleo diet" and read up.

I have a form of autoimmune arthritis that it helped me with immensely. I found that all grains (rice not so much) were giving me issues and dairy too. I'm 100% gluten free, 95% dairy free and probably 90% all grain free (the occasional bit of rice) and pretty much 99.5% free of sugars. I feel really good!

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THANK YOU...

Thanks guys ..i know i prob sound silly i should just stick to it anyway..its the depression kicking in i dont think and just eat..and forgett how ill i am after..

hope your all well..

xx

Try and keep temptation away for as long as you can. For many of us there is a bit of withdrawl involved, make sure you keep some special gluten free treats on hand for when you need a 'fix' the worst. Once your brain has a chance to clear from all the neurotoxic effects you may very well find that depression is no longer an issue. Be sure to check any meds your on, OTC as well as script. When depression is a part of our picture even a little bit can trigger that effect.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Hang in there... I don't have a lot of faith in doctors much anymore, or medical science for that matter. I know they want to help, but often the right answer is not something they can "prescribe"

My oldest son came down with a Staph Infection at age 1 that his peds let run amock because they didn't know what it was, nor did they have a way to test for it (even though it is the 2nd most common bacteria on our bodies)

My second son had vomitting and diaherria for a whole month when he was two, landing us to discuss matters with an infectious disease doctor who told us "I don't know what is wrong with him, but hopefully he'll just get better and we'll never know what was wrong." He did, but what a frustrating situation.

I have had two late miscarriages for no apparent reason. After the second, a doctor of neonatology suggested that I see a Traditional Chinese Medicine practioner.

I'm not even 100% sure if I have celiac disease, everything points to it, except the one blood test that is used for a benchmark.

So, moral of the story is to hang in there. Doctors are just people, they aren't gods, and they can't figure everything out. In my case, they can't figure anything out. However, the Traditional Chinese Medicine is not a bad idea, it helped me anyway. And they don't run tests, they take your pulse, look at your tongue, give you herbs with no side effects, and then poke you with needles. It can't hurt anyway.

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Bell's Palsy is the name of what happened to your face (that term gives you another term to Google ;)). You might also check out this thread. http://www.glutenfreeforum.com/index.php?showtopic=36163 Many of your symptoms also fit in this discussion.

Whatever it is, it's something systemic .... those are usually hard to diagnose.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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