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I'm glad it was work that kept you quiet,
I was wondering if you had worsening "glutened" syptoms and were down.
How are you feeling now?
Cheers Lori T.
That is exactly what we though we had in he UK.
That is exactly what I found in both myself and hubby due to the absence of half moons on our fingers, so I have started supplementing.
I have massive nerve damage and this is where I am thinking it has come from.
What I know is that I have managed to start mine repairing, when there is almost no remission.
I just have to know How I got there to prevent a re-lapse.
The rest of your post makes my heart warm.
If you are getting remission and I am following the same treatments, maybe, just maybe I am on the right track, at last.
No other treatment for the nerve damage worked for me but stellate ganglion nerve blocks.
The drug treatment they gave me made me worse.
Nothing in "tablet" form worked Until I got l-carnitine, which has a similar action to B12.
I FELT the difference with L-carnitine OVERNIGHT.
Which is astonishing. I still have a feeling of "Disbelief" about it after 7 years of trying but like all my other theorys I am running with Effect rather than doctors help or diagnosis.
I am going to chase down the chestnut connection cheers.
because that, the opening of the bood flow is the same sort of effect as B-12 and the carnitine has.
and I think yolo has hit it right on the head with the "Cold" theory.
Everything she has mentioned to do with the cold, exercise, drinking warming things like ginger,
and sauna all have a similar effect.
Excercise increases the blood flow (to get to the extremities)
Ginger and chillies all open the blood vessels (to get to the extremities)
Sauna warms up your core temp dilating your blood vessels (to get to the extremities)
B12, carnitine, and horse chestnut all do similar..I think we are developing a theme here..
I also did say I had a feeling that it maybe wasn't the vit D because even in winter we have the best sunlight levels in europe
well what we Do have is a distinct Temperature Crash.
I have plants, so I watch temp changes and this years was one of the worst we have had.
We dropped our night temps by 15 degrees over 1 weekend.
The Sunshine was still there but the temperatures weren't.
Now if you have a body that is massively undernourished because of the celiacs and it suddenly has to work Extra hard just to Warm itself up..
an engine with no fuel?
it has to Stop something,
so it cuts out non-vital bits and puts the energy it does have to protect your core functions,
heart and brain and cuts off the extremities.
ie, Cold hands and feet, peripheral nerve damage are your body shutting bits off.
The total lack of energy because it has to use what it has managed to get for your Vital functions.
(I bet if I google mild hypothermia, I am going to find the symptoms of seasonal crash)
You have cold hands and feet because your body hasn't the energy to protect them, so it is shutting them down.
It doesn't just feel like hibernation..it is one.
I have always said come winter,
"hibernate or emigrate"..
"Close Down or Warm Up"..
my body was telling me all along,
I just hadn't lifted the brain fog enough to listen.
I cannot wait to test the theory out when we get back from the UK,
yolo, even glutened Hon, you are a Genius.
I feel as if I have certainly got One Step in the right direction.
I will let you know how it works.
That was my second question, if you weren't ingesting it,
was it possible that being "up to your elbows" in it for work might be having a beneficial effect.
I said it was an obscure link clicked in my head,
but once I realised that I was "self-medicating" undiagnosed celiacs,
I got a book called Wild Health about animals and how they maintain their health in the wild.
Animals have something akin to celiacs and one of the links I picked up lead back to Clay.
I will explain when I get back from the UK because I don't have time before I go.
It is a marvelous feeling to have Hope.
I Knew it..our celiac symtoms sound very similar, now the Taz connection, we Must be sisters.
I Love this idea. Could you do it for you younger brother too?
I will tell you why.
The more I discovered my problem the more I could register the same symptoms in my husband.
He was very cynical about the wheat being so dangerous..I don't think anybody Without our problem does.
Anyway, he is 65 and a dedicated wheat drinker and eater.
It is a massive part of his diet.
Everything in a sandwich or pastry person.
When I spotted his symptoms I realised that it would be a simply cruel twist of fate if he was because so much of his pleasure is attatched to wheat.
No Doctor in 65 years has told him that there might even be a possibility he had a wheat problem
Despite the fact that he had 2 years of intensive tests looking for a mystery immune disease that was playing havoc with his body and a cancer.
(I think most people with celiacs will appreciate that they match Some of the symptoms of Most of the most common Immune diseases, I certainly do)
Anyway I couldn't see a way to get the bread/pastry out of his diet so he comprimised by changing his usual Lager (wheat yeast and sugar) to red wine.
(Before I discovered its yeast killing properties)
It took him a bit to get used to but when he did he noticed an improvement, enough to give the
wheat-free diet a try, even though I am sure he wasn't really convinced.
He was on the wheat free diet for 4 days and fell off the wagon. He had a sandwich.
1 sandwich .
As soon as he walked in I knew he had been wheated because the top of his belly where he has a hiatus hernia was out like a balloon, rock hard.
When he got up next morning he had full-blown flu syptoms, absolutely wiped out.
I told him it was the wheat syptoms and he laughed at me, told me not to be stupid, he knew what the flu feels like etc..etc..
I am sure we have all heard it before. Wheat couldn't do this...pure denial.
Then I got him to pick the paper out from under the seat that I had put there the night before...
and I had written down his flu syptoms, his rash, his acid reflux and his odema swelling and the
way they were going to appear over the next 4 days.
ALL of them proved correct.
At the end of the 4 days, He was Horrified.
He couldn't believe how ill it made him.
I don't think he appreciated anything I had said to him about it until he felt the results.
Needless to say,
We are Both on the wheat-free diet now and I HONESTLY do not think he will ever touch wheat knowingly again.
65 years of eating wheat....4 days off it completely..1 complete cynic totally convinced.
Once I managed to get his withdrawl syptoms under control he actually says being wheat free is making him feel like he did 20 years ago.
He has even started getting up in the mornings singing, having a little jig and doing superman impressions, (shakes head in disbelief) honestly..
which keeps me well amused.
(I just hope the neighbours don't see him )
He is starting to feel alive again.
It makes me so glad that I pushed the issue.
Even if I didn't appreciate the Massive difference it would make.
I am going to the UK at the end of the week, visit everyone before christmas but as soon as I get back I am going to force the issue.
I think you are totally correct.
Even though I don't Feel like it, I think I am just going to have to force us Both to get back to our morning beach walks etc.
Bring us out of hibernation.
I will let you know how it goes.
Bea, when you have time, tell me about your art, it sounds so interesting.
When I was thinking about it something clicked in my head because I am not really artistic but there is something about working with clay that has an almost magnetic draw for me, even if my end results are rubbish.
But it clicked off a most Obscure Link in my mind.
You will think I am daft But..
have you ever been tempted to taste the clay?
It is no more than you have done for me Hon.
You are Welcome.
One of my ex-boyfriends used to call me TAZ.
(You know the tazmanian devil off the cartoons.)
He said I was the most laid back person he ever met but once, every 4 years, I would lose my temper and when I did..I was like the TAZ in a tailspin.
All snapping teeth and venom.
I plead the wheat...
I hate anti-depressants too, but I had to have them before they would move me through the treatment program and get me onto something that worked.
Plus, I was in desperation trying to stop the pain so I had to try them incase they worked.
None of them did and if I was told by the docs to take them again, I would just flush them down the toilet and LIE.
I Think that is the only way you are going to be Safe but it is such a Shame.
Ah, just a though, before I go to do my homework..
When I came into the threads I asked about seasonal crash.
When I was looking at the threads yesterday I noticed nearly everyone saying they dreaded this time of year and the felt ill and depressed, spotty and down,
the whole tone of the forum seems to have changed.
I think we collectively suffer a seasonal crash, I am not the only one who hates the winter because it makes me feel bad.
Wish I could find a Cure for it,
or at least a way to minimise the syptoms so I didn't have to dread it coming around.
I was distracted last night worrying about you, you sounded like you were in a real bad place.
Looks like I was right to fret!
How are you feeling now and how long do your symtoms usually last?
I believe that the longer you are off the wheat and the more you cleanse your system the harder an accidental glutening hits you.
Your reaction is certainly extreme...but, I hate to say it, probably not unusual because you are not the first I have seen with the same reactions.
My Dad used to flip-out.
All my siblings got out of the family home as soon as they were legally old enough because of his nasty temper.
It wasn't until I realised that I had the wheat problem and read some of the effects associated with it,
particulally bi-polar and schizophrenia that I now think he probably flipped when he was being over glutened.
I think he probably died from the effects of untreated celiacs, he was certainly exhibiting a lot of the classic syptoms before he did.
But it was never diagnosed.
My brother is certainly exhibiting the same symptoms as my dad.
Talking to him about wheat is a waste of time, he takes absolutely no notice.
(That is brothers huh! same the world over)
He cannot see the repeating pattern and increasing symptom matches that say he is slowly killing himself.
He gets more like my dad every day.
I wish I could make him see it.
My first husband was similar.
I knew he had an alcohol/temper problem.
I just didn't realise that it was the wheat in the alcohol that was causing the problem.
Funnily, you are right,
I can see the similar behaviour patterns especially in my first husband, because he to just loved to smash things when he was in a wheat rage.
He found it cathartic too.
Simple as that really isn't it but as different as night and day.
Maybe you could get little bro to read this thread.
If he realised your whole persona/life and the lives of those around you are so badly affected by his actions he would be feel so guilty, he would be more considerate.
I would hate to think that I was responsible for making anyone feel so bad.
I think you may still be feeling a bit down, so keep your pecker up.
After all that you have been through in your life you certainly must be Fighter.
Keep it up girl, you know it will pass once your body starts to get it's balance back.
My heart goes out to you.
Not just for now but for the other things you have been through.
I was asking about the nerve damage because in the UK the standard treatment for nerve damage is to give you an anti-depressant, then an anti-convulsant then an anti-spasmodic Before you are refered to a pain specialist.
I reacted really badly to them ALL.
they made me feel worse, not better.
My body and certainly my head could not tollerate them.
When I was looking into the thyroid threads last weekend I found that at least one of the ones I had is an iodine supressor which could have made a hypothyroid problem even worse and explain my "swinging" thyroid theory.
I wondered if you had gone through similar treatment and had similar reactions.
I am obviously going to have a much closer look at the thyroid threads as soon as I get some homework time.
I will let you know what I find out.
Take care hon and try not to make any firm decissions about your future while you are in the throes of your gluten reaction, however much your mind is racing.
Aw yolo honey. I feel so sorry for you I wish I could give you a big hug.
It is SO soul destroying.
I can feel your distress and I am gutted for you.
I think you should have serious words with your brother but not at the minute because I can hear that you have really hit a downer and when you feel like that things get said that would be better left unsaid.
Wait 'til you feel at bit better, then try a logical rather than emotional/glutened argument.
(If you feel the need to yell or rant in the meantime feel free to come in and yell at me.
I don't mind.)
You Need your family my friend.
Sad but true, this damn disease robs you of so many things that most people consider normal for living that you cannot afford to let it rob you of your family too.
I have the same problem with my family.
When I first suspected what it was and stopped the wheat for myself.
My husband was still eating it and he thought I was being stupid and over exagerating the effects of cross contamination when he was leaving crumbs all over the chopping board and work surfaces.
Being honest, when I first read the facts, I couldn't believe them myself but I Know I was suffering from the effects.
I Think, that if it was something like cigarettes or alcohol, people would take a lot more notice because they know that They are dangerous.
But nobody has ever warned Me about wheat, not the government, not the doctors..not even a hint
(and if it is so dangerous they certainly should have been.)
What I know about it now I want to Shout from the roof-tops, I want to make Everyone realise that it is Poison.
But no-one is listening.
I am sure your brother would never dream of feeding you rat poison..
(although..you know brothers..maybe he would. Mine might try )
but he doesn't understand, especially when you are not even in the house, that through his actions, he may as well.
It has the same effect.
I hope you are feeling a bit better.
Come rant to me and we will see if we can think of a way between us to sort him out.
It will take your mind off your symptoms.
One thing you have to tell me, your nerve damage.
When they found you had it, did they give you any treatment for it
I am thinking if your nerve sheaths were damaged you had to be having massive pain and I am wondering if they gave you any of the standard nerve damage treatments?.
Net Hug for you hon, through the phonelines.
Feel better soon.
regarding the soup.
I have been wheat-free for ages
but I made chicken soup from scratch the other day and got glutend.
I never thought about the stock-cubes having wheat in them and I am supposed to know what I am doing.
I have just done it that long I forgot.
Old habits are hard to break
second, Poultry labelling.
I am not sure at all if I am correct at all about this..but it is worth thinking about.
If the bird was killed and something,
say a preservative was Added to the carcass that contained wheat,
that would have to be added to the Ingredient List
what if the bird was raised on wheat feed, would that be classed as an additive and listed?
I think not.
Would a bird fed regulaly on wheat actually accumulate the wheat in it's flesh?
I don't know
Certainly if you see a corn-fed chicken, the flesh/fat is bright yellow so it kinda suggests it could be possible.
I have just picked up some cod liver oil capsules and it says the capsule shell is modified starch,
is modified starch Wheat?
artselegance, I never really had a DH rash until I came Off the wheat.
My Mom always had it.
The Docs told her it was psoriasis.
I picked up a link in a celiac spure site that said if you had the typical butteryfly DH rash you had celiacs 100%.
From then on, everytime I got the rash or felt the sting of it I thought I was being glutened
so I was looking everywhere to see how I was being accidently glutened.
but I just couldn't find the wheat.
That is why I was asking if the DH rash Only appeared when gluten was present because my rash is appearing when I am certain I have no wheat in my diet.
I think mine is appearing when my yeast problem is high.
Sorry I have been a victim of my own ineptitude and cut the thread off mid flow.
skinnykid, just to finish, I started b12 about 3-4 weeks ago and all the signs have been positive,
energy and lighter thoughts definite improvement.
hope it helps you feel better too but get it on it's "own" if you think you may have a yeast problem.
(To soon to know yet but I suspect a mixed b complex pill may be responsible for setting my yeast reaction off.)
yolo..so much valuable information.
Thank you so much.
I don't normally need so much hand-holding but I have found this disease to be so flaming contradictory I seem to take 3 steps forward and 2 steps back every time I fit another piece into the jig-saw.
But when I got to the hypo/hyperthyroidism info I felt as if I Galloped.
Suddenly so many links fell into place. It felt like recognising ME.
I can actually See how I have taken myself into the disease and assisted it and also how I probably cause it to lift, (without any supplements )
If I can see that, IMO I am well on the way to being able to avoid the worst bits of it.
so I have to explain.
When I got my nerve damage my body was at its lowest point.
Overwhelmed by celiacs, compounded by hypothyrodism.
My appetite disappeared almost completely but I was still putting on weight and I had no life.
I think my body was actually slowing down to a stop.
Like hibernation. (Hypothyroid)
I accident I took a massive slug of Wheat and Yeast out of my diet.
and all of a sudden weight started to literally drop off me.
It was so bizarre.
I had always had trouble losing weight and then suddenly for no reason my body fat started to melt.
Along with the fat melting, my nerve probs eased off but best of all my energy/mood started to lift.
I slept and felt refreshed.
I got my JOY back.
Like a lease of new life.
I lost 40-50 lbs eating chocolate, chips and chinese.
(I will come back to this point)
Up to this point I was taking NO supplements
Now this is where I started to get the Wheat connection, cut the wheat out completely and got a further lift in symptoms and further weight loss including a flat stomach, which I can never really remember having, mine always protruded.
When I read about the malabsorbtion associated with celiacs I thought better try some supplements
(and I think this is where I went wrong)
I took calcium because I could see the damage to my teeth
and a B complex.
Within a short while I noticed my tummy start to protrude, although there was no immediate weight gain, it wasn't long to follow.
With the weight gain, came more pain, less refreshing sleep, tired all the time less energy.
(going back towards hypothyroidism)
I picked up on the swollen belly connection straight away so put it down to the wheat, thinking I was being accidently cross-contaminated and the swelling was indicitive of an immune reaction to the wheat...
but what I think now is the swollen belly is indicating a Yeast problem
(and there are links to say that you cannot lose weight while you have a systemic candida infection.)
I supplemented yeast back in with the b-complex and set off the chain reaction/thyroid swing.
I think, if I stop the yeast reaction my body will start to balance out again.
What do you think..does that sound vaguely plausible?
Back to the chocolate, chips and chinese diet.
unless you look at it from the point of view of the "get rid of candida naturally" diet
and realise that Good animal fats are Yeast killers.
Chocolate..fat laden..plus magnesium.
Chips, cooked in Palm Oil..one of the only beneficial non-animal fats in the candida diet.
I only ate Duck and fried rice..(without the pancakes,) that gives me no wheat and the
pure animal fats needed to kill the yeast.
It starts to make a lot more sense now..to me at least.
The more I learn, the more I worry about That specific point.
I started looking at my family, then my friends and picking out recognisable celiac symptoms in them and it is damn scarey.
It suggests a lot more than a simple genetic magnification of the fault.
I checked out those links over the weekend and so many things fell into place.
I think that I probably have hypothyroidism which has probably given me low adrenal function.
Plus I think I have set off a bad yeast infection winter last year and that is why I have put weight back on and have such bad sugar cravings.
(I thought I was being accidently wheated but I couldn't identify where..maybe I was being over yeasted and was craving sugar to feed it)
Reading suggests that I have to sort the yeast infection out before anything else falls into place...
so I am psyching myself for the fight.
That "cure candida naturally" diet is Not for the faint-hearted
(The fermented cabbage juice idea especially is having a strange effect on my resolve and that is just the thoughts of it)
Did you do it..and if you did, did it make a difference?
Also I was thinking that my DH rash comes up to show when I have been accidently "wheated"
and have always taken it as a sign of accidental wheat contamination
does anybody think it is possible that a DH rash is sensitive to Yeast ingestion rather than just wheat?
I seem to feel the effects of the DH rash from processed/salted "dusty" nuts
which I cannot find any wheat contamination in
(except maybe cross over contamination in the processing plant)
I noticed if I have the nut "dust" on my fingers and touch my face I can feel the DH prickles within a short time.
If the "dust" on the nut is a natural dried yeast it could explain a lot for me.