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Andy_oh

Hello, Some Opinions Please

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Ok my story is a long one so i'll strip it down, in 2000/01 i was told i had anxiety and depression and put on anti-depressants i was on and off them up until around 04 and i didn't really experience any phycial syptoms except palpatation dizziness, fast forward to september 2005 and i had what is called a derealization attack went ot the doctors and he put me back on medication for depression (which i only went back on for short period) but ever since i have suffered from GI symptoms such abdominal bloating, pain on and off in the lower right abdomen mainly when pressed, Gas (on and off), soft stool, puntuated by periods of constipation and diarria, severe fatigue on and off sometimes overwhlming, just recently i thought i might have been suffering from lack of fibre so started to eating weetbix etc for breakfast and it seems my symptoms have got worse since doing this, muscle twitches, muscle weakness in one side of my body and face, stomach growling after eating, sometimes my right eyelid is sticky and my brow feels droopy, insomnia, waking early with palpatations, feelings of spaciness, apathy, easily irritated, pallor, bloodshot eyes coming and going.Basically a mixture of physical and mental problems., obvioulsy this could be anything but my symptoms seem to fit to a T with ciliac disease.

Is it possible that i have had ciliac disease all along ? but at first it manifested itself as anxiety and depression and now it's worsened to all the physical symptoms ? can it be mild to begin with and then progessivly get worse ? i was thinking of beginning a diary to keep tabs on what i'm eating and when i feel...well whne i feel like a zombie to see if it coincides with.

Any thoughts/opinions would be appreciated.

thanks

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It's even a better fit with Lyme Disease. Check out the symptoms at www.canlyme.com. The derealization, palpitations, bell's palsy type symptoms, insomnia, etc. are what's making me say this. Many of us with Lyme also have the GI symptoms including gluten intolerance/celiac.

It could be celiac ... get tested before you go gluten-free.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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It's even a better fit with Lyme Disease. Check out the symptoms at www.canlyme.com. The derealization, palpitations, bell's palsy type symptoms, insomnia, etc. are what's making me say this. Many of us with Lyme also have the GI symptoms including gluten intolerance/celiac.

It could be celiac ... get tested before you go gluten-free.

Thanks for the reply, i'm thinking as my symptoms have gotton worse since having weetabix and bran flakes for the past week that it's more likly i have ciliac disease, i also seemt oget ill after eating things like pizza and spagehtti, indian foods which makes me even more convinced.Ive litrelly just started eating weetabix and bran flakes for the past two weeks and i think it excaserbated my problems, i'm depressed/anxious/fuzzy head/fatigued/abdominal noises/i also feel confused sometimes/nauseous, the weekness in my right leg seems to have gotten worse aswell.

I'm going to get off the weetabix/branflakes and try a bowl of friut for breakfast to see what happens, also try and stay away from gluten as much as possible see if my mood/symptoms change in severity over the next few days, it can't be a coincidence that everytime i feel depressed/anxious i get the stomach noises/bloating/lower abdominal pain/flatulence.

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You probably have the gluten intolerance genes. It usually minifests with at least some neurological stuff. Well if you have gluten intolerance you can get the villi damage also, it is just not well documented, but it happens. A lot of people that have villi damage do not get the gene test.

I am double DQ1 - you might want to do a search on here for the DQ1 threads & see what everyone has to say - most not good at all. all of us DQ1 people have at least depression when we are eating gluten, at least all the ones in my family do, & a few friends that I know & some people from my celiac support group...

You need to also start taking a B12 everyday - make sure it is gluten free. Just take it even if your levels test okay - the set levels are too low anyway. trust me, you will need to take B12 everyday for the rest of your life if you want to be at your best...

I would say to test thru Enterolab.com if you want to know what is going on...

keep us posted on your progress....

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I, too, felt better off gluten. After about six months I got worse again, and it took another six months to get diagnosed with Lyme. So, keep it in mind if you don't get better on the gluten-free diet and stay better. Many Lyme patients have food sensitivities.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Thanks for the replies.

I'm going to avoid gluten for a week to see if my symptoms improve, a diet of fruit and veg, i know they won't entirly go away in a week but just to see if they improve, i just find it to much of a coincidence that i get the depression/anxiety/fatigue etc whenever i get the GI problems., also with it getting worse after having things like weetbix/spaggehhti, both of which are high in gluten.I'm thinking maybe i can tolerate gluten to a certain point but when i have to much i get bad, is that possible ?.

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Andy, if you have celiac disease that is not possible. If you have gluten intolerance that is bordering on celiac disease, it is also not possible.

If you have a slight wheat allergy .... for example, I have a slight mold allergy and can tolerate limited amounts of fruit juice and peanut butter ... then you might be able to tolerate it once in a while after you eliminate it completely for several months.

I eliminated gluten 100% for 18 months. Now that I've been treating the Lyme Disease for 9 months, my gluten intolerance has diminished. I still eat 100% gluten free at home, but I don't worry about it when I go out once a week or so. This is because my gluten intolerance is secondary to another disease.

There is no easy answer to this question.

However, as sick as you are, I'd get the blood test for celiac. My guess is you either 1- have celiac or a pretty strong gluten intolerance or 2- have something else going on making you sensitive to gluten. With your extensive, systemic health issues, a slight allergy would not explain it.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Andy, if you have celiac disease that is not possible. If you have gluten intolerance that is bordering on celiac disease, it is also not possible.

If you have a slight wheat allergy .... for example, I have a slight mold allergy and can tolerate limited amounts of fruit juice and peanut butter ... then you might be able to tolerate it once in a while after you eliminate it completely for several months.

I eliminated gluten 100% for 18 months. Now that I've been treating the Lyme Disease for 9 months, my gluten intolerance has diminished. I still eat 100% gluten free at home, but I don't worry about it when I go out once a week or so. This is because my gluten intolerance is secondary to another disease.

There is no easy answer to this question.

However, as sick as you are, I'd get the blood test for celiac. My guess is you either 1- have celiac or a pretty strong gluten intolerance or 2- have something else going on making you sensitive to gluten. With your extensive, systemic health issues, a slight allergy would not explain it.

Well as of saturday ive kept away from gluten products, and have had a bowl of fruit for breakfast each day and mainly vegtables for dinner and tea and i do seem to have had a lift in energy levels and my mood has also lifted slightly, i'm less anxious and nausous, bit to ealry to say wether cutting out gluten has made any difference just yet so early into my experiment though.

p.s

i was thinking of buying some b12 vitamin suplements as gfpaperdol syggested above to see if they help too.

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Sorry for bumping this thread, but i'd like to add another thing, sometimes when i feel bad i try to do some exercise to releive some of the depression/anxiety after which or during the exercise my eyes go blood shot, this only happens when i have all my symptoms at a more severe level, usually i can function well but it just sometimes it gets bad, i wonder if i'm glutened petty well all the time but sometimes i'm super glutened ? can symptoms vary with the amount of gluten you digest ? i suppose everyones different in that respect, for insatnce since i started having weetabix for breakfast my symptoms worsened 10 fold.

Anyone heard that before ? eyes going blood shot or blood vessels more pronounced with exercise.

I guess the only way to say if i'm gluten intolerent is to go to the doctors again, he'll probably just tell me i'm depressed like last time, but i will suggest to him giving me the test for celiac disease.

p.s

Ive just found this of a wheat allergy website-

http://www.scienceinafrica.co.za/2005/july/gluten.htm

"Wheat-dependent exercise-induced reactions: Exercise within 3 hours of wheat consumption can induce an adverse reaction in susceptible individuals. In some cases, this can also occur when wheat is consumed directly after exercise. Typical symptoms experienced include asthma, urticaria, angioedema, dyspnoea, syncope and anaphylaxis"

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Just to check in, Ive been gluten/wheat free since sunday (kept well clear of the weetabix etc) and i have seen improvements but still feel a bit weird and the depression is still lingering, obviously it's going to take longer than a few days to really tell if it's having a real impact but i think i may be slowly getting better already, i began taking some B12 vitamins today so i'll see how that goes.

Did anyone else feel a bit strange in there first week ?

I have mostly been eating fruit/veg, mostly bananas/oranges/apples/grapes/, veg-potatos (with gluten free cheese slice)-tomatos - brockley - green beans - cucumber etc, drinks water and grape juice.

could anyone tell me if it's ok to drink tea ? i'm British and haven't had a brew in a week, please tell me it's ok to have tea :)

to summarize i do feel as though something is changing, but still don't feel right yet.

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It's ok to have tea, the only thing you need to check is some herbal teas have barley malt for flavour but that will be listed in the ingredients. Ordinary black tea is safe.

Gosh I would feel weird just from going without tea for a week... :lol::D

Pauliina

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It's ok to have tea, the only thing you need to check is some herbal teas have barley malt for flavour but that will be listed in the ingredients. Ordinary black tea is safe.

Gosh I would feel weird just from going without tea for a week... :lol::D

Pauliina

Phew, i'm gagging for a nice hot brew :lol:

thanks very much for the advice, i think the mist is beginning to lift.

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If you have a gluten allergy, it is normal to go through a withdrawal period, you can actually feel worse for awhile.

That seems to happen with some celiacs too.

Patience and persistence is the key to finding out.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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Well i have had the best day up to now today since going gluten free, i'm definatly beggining to think i could be on to something, ive been gluten free for a week and i feel i'm slowly getting back to some normality in regards mentally and physically, there was even a moment where i felt so "normal" that i felt almost like crying, has anyone else experienced this ? on the flip side these moments of normality make the down moments feel much worse, but It does seem the periods of the day i'm feeling better are getting longer, i still feel a bit weird at night, i have been on the b12 vitamins for only a couple of days and i think they are also helping.

p.s

sorry if i'm boring anyone.

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You're not boring anyone, that's what this board is for!

...I mean I didn't mean this board is for boring people... :D:P It's 1.13am here...

Glad you're feeling better, and yeah for me it was the same in the beginning, a lot of ups and downs but the ups got slowly longer and more frequent. But it will take some time so keep at it and be patient.

Pauliina

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I am so glad that you are taking the B12 it is very important - just hope you made sure it was gluten-free.

are you vegetarian? I did not see any meat listed as part of your diet. keep us posted, we like to see how you are doing & progressing along. I think you have made amazing progress in just one week - enough to notice a difference. be careful you might have a diary problem for awhile, that is fairly common...

London is one of my favorite cities... I have been there only 4 times but have enjoyed every trip!!!

Do you go to the theater? I love the London theaters!!! oh & the fish & chips - oh darn that was before I was gluten-free. But it seems to me that I remember that at the corner sandwich shops that you could get gluten-free bread. I was always so skinny when i was there, it seems that someone ask me if I wanted gluten-free bread... & I love all the toppings they have for the sandwiches like grated carrots...& I loved the little fruit stands everywhere.

I was not overly fond of the tiny little refrigerators that are in most of the flats. I do not know how you fit any food in there!!!

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I am so glad that you are taking the B12 it is very important - just hope you made sure it was gluten-free.

are you vegetarian? I did not see any meat listed as part of your diet. keep us posted, we like to see how you are doing & progressing along. I think you have made amazing progress in just one week - enough to notice a difference. be careful you might have a diary problem for awhile, that is fairly common...

London is one of my favorite cities... I have been there only 4 times but have enjoyed every trip!!!

Do you go to the theater? I love the London theaters!!! oh & the fish & chips - oh darn that was before I was gluten-free. But it seems to me that I remember that at the corner sandwich shops that you could get gluten-free bread. I was always so skinny when i was there, it seems that someone ask me if I wanted gluten-free bread... & I love all the toppings they have for the sandwiches like grated carrots...& I loved the little fruit stands everywhere.

I was not overly fond of the tiny little refrigerators that are in most of the flats. I do not know how you fit any food in there!!!

Hi

I'm not a vegatarian, although i feel a bit like one at the moment :) i'm going to start adding meat to my new diet, think i'm relying on potatos a little to much,but i'm trying to keep it simple to begin with, .... i still feel a bit strange but i think the cloud is lifting, still a bit up and down though.My energy levels have increased and that feeling i used to get after meals of having a balloon under my ribs has subsided.I feel as though i'm on a bit of an emotional rollorcoaster at the minute, hopefully that will strighten out soon after ive been gluten free for awhile longer, i haven't done any exercise for a couple of weeks so i'm going to get on my exercise bike tomorrow to see if that improves my mood, or makes it a bit more consistant.I definatly feel different as a consequence of a diet change so makes me even more convinced i have a problem with gluten/wheat, i'm even more convinced after reading through the forum and reading peoples symptoms which are identical to mine.It's little wonder my symptoms got worse 10 fold after starting to eat 2 weetabix for my brekfast, is there a worse thing to eat if your sentsitive to gluten ? it must be up at the top of the list for worse things to eat.

Ive been taking B12 vitamins but not the subligual ones, just the swallow straight down ones, does it make much difference ?

here is the ones i brought -

<a href="http://www.naturesbest.co.uk/product.asp?pf_id=619" target="external ugc nofollow">http://www.naturesbest.co.uk/product.asp?pf_id=619</a>

I don't actually live in london, i'm from northern England, nearer to Manchester, we have plenty of chip shops or "chippies" as we call them, but don't think i'll be visiting one anytime soon :) or should i say :(

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Ive been taking B12 vitamins but not the subligual ones, just the swallow straight down ones, does it make much difference ?

Yes there is a difference and you do need to get the sublinguals. The reason for this is simple, the area of your intestines that is damaged by celiac is the same area the forms the intrinsic factor that is need for your body to absorb and utilize the B12. B12 can be absorbed directly into the bloodstream by the mucous membranes, gluten can be absorbed this way also by the way. In some more advanced countries they use mucous membrane biopsy to diagnose as it avoids poisoning us for months and still risking a false negative. Anyway you can not OD on too much B12 and there is no risk to taking the high amount that you will see on the sublingual bottles. Even if you take a multi there is no problem with adding in a sublingual on a daily basis.


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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Yes there is a difference and you do need to get the sublinguals. The reason for this is simple, the area of your intestines that is damaged by celiac is the same area the forms the intrinsic factor that is need for your body to absorb and utilize the B12. B12 can be absorbed directly into the bloodstream by the mucous membranes, gluten can be absorbed this way also by the way. In some more advanced countries they use mucous membrane biopsy to diagnose as it avoids poisoning us for months and still risking a false negative. Anyway you can not OD on too much B12 and there is no risk to taking the high amount that you will see on the sublingual bottles. Even if you take a multi there is no problem with adding in a sublingual on a daily basis.

Thanks for the advice ive just ordered some super strength sublinguals B12's, hopefully they will be more effective than the ones i'm taking now.The ones ive been taking for a couple of days are glutn free, i e-mailed them to ask just to makes sure, i'll check on the new ones too.

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I now have been Gluten free for aprox 5 weeks. i was diagnosed on Sept 4th.. Before i went gluten free I had sever depression, palputations, anxiety, annemia, insomnia, basially all the things you listed. The first few weeks I really did not feel better.. However now i feel soooo much better. I still am tired but not cronically.. The depression is lifting and I feel over all much healthier. i realize and you must to that it will take time to heal. That your body needs to filter out all the gluten that has been stored and heal any damage. So stick to it, read labels carefully, and get tested! I am glad i did and so is my immediate family!! :P

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Could somebody tell me if it's normal to feel a little strange when you first begin ? can't really describe the feeling but i feel almost asthough i feel different everyday, since i began gluten free my energy has certainly gone up, i'm not very good at explaining my feelings but i was wondering f anyone else got this feeling that things were changeing mentally, could this be because i'm lacking B12 ? ...if so then hopefully the sublingua b12's ive just ordered will help stabalise my moods.It really feels as though something is changing though, which definatly makes me think i have a problem with gluten or wheat or both.

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Hi Andy, yes, I think being gluten-free at first makes you feel a lot different. You should start to feel so good that you might even notice that colors look brighter...

I think you should go ahead & add some meat into your diet. It is important to get that protein. I think especially for us gluten problem people.

I have a friend that is taking two 5,000mcg B12 everyday & I am taking 2,000mcg everyday & about to up that to the 5,000mcg sublingual. I cannot go without my B12 everyday... I think you will notice a huge difference on the sublingual.

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Hi Andy, yes, I think being gluten-free at first makes you feel a lot different. You should start to feel so good that you might even notice that colors look brighter...

I think you should go ahead & add some meat into your diet. It is important to get that protein. I think especially for us gluten problem people.

I have a friend that is taking two 5,000mcg B12 everyday & I am taking 2,000mcg everyday & about to up that to the 5,000mcg sublingual. I cannot go without my B12 everyday... I think you will notice a huge difference on the sublingual.

Hi paperdoll,

Thanks for replying

Thanks for the advice, I will add more meat to my diet, i had quite alot of pork yesterday and am going to buy some plain chicken breats etc soon, are eggs ok too ? one thing ive noticed one week in is that my eyes feel wider and i think the rings under them are beginning to clear a little, i also have some wrinkles there too which i think are linked to this, i'm only 27 so i shouldn't really have any at all, my skin is quite pale too, i'm hoping the colour will begin to come back soon.

I know ive not had a proper diagnosis but i'm allmost 100% certain my problems are linked to my diet, and from reading this board over the last week and researching gluten intolerence i have many similar problems to a lot of people here, even down to having no half moons on my finger nails and only on my thumbs, which i think can be due to lack of B12 too ? ....thats something else ive noticed over the last week, i am alomiost certain that they are returning, on my right hand two of my fingers now have small half moons appearing, sounds a bit silly but i'm sure they are coming back.

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