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needtobebetter

Hi Do You Remember Me? Really Need Some Advice Guys

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Hello ..

I was on here over a year ago trying to get diagnosed for celiac and I am still struggling as was diagnosed not celiac carried on eating and fell apart..

Mine started about 2 years ago massive distention, impacted feaces, heartburn, nauseous, flu feeling, seizure, atrophie side of nose ..anxiety..

I had a blood test at the begining apparently, which was negative and they just wrote me off with IBS and I knew I didnt have IBS..so I got in a state complained to hospital and was advised to see a homeopath as I got much worse after an operation two years ago with loads of antibiotics. I was told taht I could have candida so I went, she said I had a bad case stuck me on a diet pretty much celiac apart from ryvitas..

I didnt know about celiac but knew when i had ryvitas my stomache would start..so at the end of 8 months homepath said right you can introduce foods now..I got ill again...someone mentioned celiac so I went back to doctors. He told me I would have to eat normal for 5 weeks. So I did..but I was doing low carb so only had porrige in the am and sandwich at lunch time maybe i didnt eat enough????

Turned out I wasnt celiac from biposy but I cant eat:

Wheat, Rye, Vinegar, Fruit, Sauces, Pasta, Sunflower Oil, Chocolate, Peanuts, Dairy..Alchahol..

It is so celiac the amount of things I cant eat apart from the sugar but I was advised that if celiac you would get candida until tummy is healed...??

Any way so I carried on eating normally as I was told I was too thin (apart from massive belly) I had muscle wasting ..I fell apart..I started getting this dark line down my right side of cheek..I was suicidal by this time Id had enough

Then I was so sick of being ill one weekend I came home took an antidepressant and felt strange, there had been alot of stress at home as dad left my mum so she was very upset and shut us all out...they had a fight and she came running in my room at 3am screaming which scared the life out of me..

next evening I woke up at about 3am with a really bad pressure headache and in my nose and my right side of face felt strange..I went out to my car to have a cigarette and noticed my face looked weird ..it did freak me out as I was on the antidepressants which made me feel weird anyway..I asked my mum to help I said my face is falling off ..she just went back to sleep!!!

My heart was pounding couldnt stop going to the toilet and lost half a stone very quickly ...

My Right side of face is flat and drooping, my neck is locked in a spasum rigid, my tri cep has muscke weakness or wasting I dont know..and back of my right bottom and hamstring and my right calf...

The feeling in my right arm and leg is: When ive tried to do a small bike ride when not sick..the area that is flat really hurts after a few minutes on level 1 like it fatigues straight away..and my neck looks twisted and ligaments are very taught ..its all teh same and its been a year..but I am sure my leg feels worse when i ve eaten wrong..and i feel like my body swells with water..

I went to a doctor on teh monday and he was a different one he said you could still be celiac stop those tablets they have maize starch in them ..(Thought that was okay)..

Since then Ive bee on and off the diet as so depressed and Ive had 3 blood tests and one biopsy all say no celiac Ive had dietitains making me try and eat normal..

Could celiac cause right sided muscle weakness ?? I also have wasting of right side of nose, around my eye and in my right hand...

Things have got pretty bad as I am struggling with the diet as not just celiac but fruit, fats, dairy so I started to think no celiac..but may be I have but with candida...and does anyone have a problem with cooking oil????

My right breast tissue is also wasting and my skin in general has shriveled like Iam dehydrated..no moisture to it looks a bit like crepe paper and iam only 32..but if malabsorption maybe its affecting my skin???

I ve now got teh MP involved and they are sending me to a teaching hospital ..they also think I could have a few things going on from complications from something thats been missed in the begining..

They also think I have Parry - Romberg Syndrome ..which is one side of face and neck and limb wasting fat, muscle and bone which also causes seizures..

I have a speckeled patten ana 1:80 which is autoimmune..Ive read that other diseases are also affected with gluten maybe its not celiac..I dont know ..

Parry Romberg is very very rare..and has been said its an autoimmune disease so maybe eating gluten has truiggered it ...

Thanks for listening just wondered what you thought..I am just struggloing to do celiac diet as well as

no fruit (I get impacted) sugar, yeast, vinigar, alchaol, sunflower seeds, oils hemp/sunflower/olive oil ..its so hard as all celiac foods are packed with sugar sunflower oil etc..all i have to eat is rice potatoe and meat and veg..

THANKS GUYS XXXXXXXXXXXXXXXXXX

Hope you are all well sorry not been on and said Hi ..I ended up in Basildon mental health as so ill and know one was helping me ...but I am not going to give up Iam just so upset when i see my self as I look so different like its aged me and a droopy face and now I cant even excersise anymore..

xx

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Wow. So sorry that you've been having such a horrible time.

It does sound to me like there are multiple things going on. While I cannot offer an "official" explanation or "expert" advice, what I'd say is massive malabsorption and candida. Both seem likely due to Celiac. I don't know what supplements you might be taking, but if I were dealing with the issues you've mentioned, I'd start with magnesium, a sublingual methylcobalamin (B12), vitamin D3, zinc, B-complex, and perhaps a multi-vitamin. Also coconut oil, which can be used for all cooking, and in place of butter or margarine. It would also help to take caprylic acid to help fight the candida, even though the coconut oil has it too. A digestive enzyme and probiotic supplement would probably help too. Limit complex protein intake, but try to get all the essential amino acids elsewhere, like perhaps a supplement. This will help limit undigested proteins building up in body tissues, such as around the ankles.

I'd have to do a bit of research to make further suggestions. I'm sure others will have some helpful ideas for you.

I hope you feel better soon!


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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Hello ..Thanks Rice Guy..

It has been awful and I am worse than ever thats for sure..

I am not taking any supplements apart from cod liver oil ..I got so down and doctor kept saying your viatmins are fine..i dont think so though..my stools have lots of foods in them all the time..

Ive also noticed that certain foods give me bad nausea..peanuts, chocolate so iam wondering if I have gallbladder / liver problems as I cant have oils either ..well I cant have sunflower oil, hemp oil..I am starting from scratch again from now so have brought some linseed but dont know how I will tolerate linseed..

I get this other thing thats really getting me down where my palms of my hands shrivel like ive been in a pool, they go all wrinkly and then dry out so my hands are tight and then the skin flakes off..I am sure its dehydration but I do drink water so I dont understand..

Ive also seen oral surgeon said I have TMJ..he also said my skin has atrophied..he was looking at cushings but couldnt get tests as not his dept. Basically southend hospital have cocked up some where and now I have complications ..or may be this celiac has triggered Parry Romberg..trust me to get something so awful..

I ve also seen the only bells palsy specialist in the uk who does reconstruction and he said its not bells palsy and the oral guy said its not bells its muscle weakness..and now I am in teh process of being sent to Parry Romberg Specialist ..its very rare..maybe thats why they keep thobbing me off coz they dont blimming know whats wrong..some consultants have just said we dont know!!..

When i saw neuro the 1st time i had no reflexes when i saw her the next time i did BUT I was not on diet the first time and I was on diet the second time..so maybe the diet will help with the muscle weakness???

My bum has gone flat i think thats wasting???

Thanks for the tip Ive made a note and i am going to make a note and get them I just havent got alot of money as been signed off ..

Nice to hear from you any input would be great thanks...Iam sure we know more than the doctors!!!!!!

x Mand

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Hi, maize starch is gluten-free but a few people are allergic to maize, see the cornallergy web site somewhere.

I wondered if Dr. Hadjivassiliou is in the UK, he specializes in gluten ataxia and they can run antigliadin and gene tests. They found that 20% of their gluten ataxia patients are DQ1 whereas the normal celiacs are DQ2 and 8.

Added: Yes, you find him in the UK, do a search.

You are in the UK, otherwise an Enterolab test would seem logical because they detect far lower levels of celiac and gluten antibodies but they obviously only can diagnose gluten intolerance, not celiac.

For celiac one has to eat much gluten (I did the maths and it was about 6 slices of bread here a day) for at least five weeks, not just porridge and ryvita.

One can get a celiac diagnosis by responding well to the gluten-free diet, sometimes. My daughter did.

Antibodies to various autoimmune illnesses are known to be triggered by gluten.

LDN (low dose naltrexone) can help with all autoimmune illnesses, check the web.

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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Well, I don't see anything in what you've said that would rule out gluten intolerance or Celiac. Just keep in mind that Parry Romberg Syndrome, like IBS, has no known cause. That's basically the way it is for most if not all systemic diseases (stuff not caused by and invading organism). So even if they say you have Parry Romberg, it gets you no closer to resolving it, but only being lead down a path with no resolution.

If it were me, I'd stay gluten-free, dairy-free, soy-free, corn-free, peanut-free, take the supplements regardless of tests, and consider the advice of the members here and use Google to see what else turns up as you research.

If you do have TMJ, I'd suggest a glucosamine supplement. Get the vegetarian kind to avoid possible problems with shellfish. This supplement has helped me a lot with TMJ.

What you describe with your hands could be related to Celiac too. My impression is it sounds like your electrolytes are going bonkers. The supplements I mentioned should help there too.

If you see any doctors, perhaps you can get them to at least give you a B12 shot. I'd bet it gives you a boost, in which case it helps confirm malabsorption. I don't know the medical system in your part of the world - how does one usually get supplements? Please keep in mind that drugs only address symptoms, and will not get you any healthier.

I sure hope you get the help you need!!


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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