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quack

Seasonla Crash

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Quack: Ditto to everything in your original post. I have gluten sensitivity. I have been gluten-free for the most part since August and CF since first of October. I have pernicious anemia and do the B12 supplements, injections, etc. as you mentioned. I took one bottle of the L-carnitine and didn't reorder, I guess cause I didn't really know if it made a difference.

The seasonal change makes so much since. Mine was so bad I started an antidepressant two weeks ago...soon as I did my skin, especially face, broke out so bad, I mean with little sores. I thought only Celiacs experienced DH, but I guess just the gluten is enough for an outbreak. And why after being off the gluten for this length of time does it happen.

I do hibernate, but I have been doing this for one year, since the pernicious anemia diagnosis December, 2007.

This has all been a drastic lifestyle change for me and I'm not sure I like it. But now its seems necessary for survival. I feel like I require so much rest.

I used to get together with friends every weekend and have cocktails. I usually have a couple big parties a year that was oh so much fun and now NOTHING. I have always been a wonderful SOUTHERN cook, not anymore.

Like one my dad's favorite songs: "Some days are Diamonds, Some days are Stone."

Have a great day!

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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.

(lager)

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.

(Hyperthyroid)

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.

So unbelievable,

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.

and

Chinese meals.

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.

Does it sound remotely plausible to you?

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A Quick ask before I do myself any more damage.

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.

And why after being off the gluten for this length of time does it happen.

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.

Could that be true for you too?

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yolo, have you read the thread about babies being given a sort of immunity from celiac disease in the Mothers milk/flora.

The link I picked up said the protection is most esential in the first 3 months of the infants life.

You crashed at 4 months.

We start weening babies at 4 months and a lot of us start with toastie soldiers, bead and butter etc

It also said that children meeting an "antagonist"

(wheat or maybe in your case the anti-biotics or indeed the radiation)

early on in life were much more likely to suffer the Worst celiac effects?

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yolo, have you read the thread about babies being given a sort of immunity from celiac disease in the Mothers milk/flora.

The link I picked up said the protection is most esential in the first 3 months of the infants life.

You crashed at 4 months.

We start weening babies at 4 months and a lot of us start with toastie soldiers, bead and butter etc

It also said that children meeting an "antagonist"

(wheat or maybe in your case the anti-biotics or indeed the radiation)

early on in life were much more likely to suffer the Worst celiac effects?

Hi Quack,

No I haven't read that thread. Could you tell me the title? It sounds both interesting and useful. It turns out I wasn't breast fed since too much was going on and my mom didn't produce enough milk for me. there was also a lot of stress (as in shouting matches etc.) going on between my parents. My mother at that point had a love/hate relationship with me and my older siblings.

Bea

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yolo, I picked it up in one of the links I was in at the weekend but I was in a lot so don't worry if I cannot find it straight away.

When I do I will bring the link for you.

There was not much info but it clicked in my head because I think I did something similar to my son by stopping breast feeding early.

Funnily enough, I was in a similar situation as your parents with my marriage.

My son cried all the time and my husband seeemed to resent him so home life was hell at the time.

I kept the Son and ditched the Husband ;)

but I wonder if the stress contributed to the condition.

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Another important factor was the overall amount of gluten in an infants diet, and a direct correlation was found between increased gluten consumption and an increased incidence of celiac disease. According to the researchers, the protective effect of breast feeding was even more pronounced in infants who were breast-fed beyond the introduction of gluten. Ultimately the teams findings indicate that breast feeding infants through the period of gluten introduction can significantly lower their risk of getting celiac disease. More research needs to be done to determine if this protective effect will extend over a lifetime.

This wasn't the one I am looking for but I came across it so I thought I would pop it in for you.

Still looking.

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yolo, I picked it up in one of the links I was in at the weekend but I was in a lot so don't worry if I cannot find it straight away.

When I do I will bring the link for you.

There was not much info but it clicked in my head because I think I did something similar to my son by stopping breast feeding early.

Funnily enough, I was in a similar situation as your parents with my marriage.

My son cried all the time and my husband seeemed to resent him so home life was hell at the time.

I kept the Son and ditched the Husband ;)

but I wonder if the stress contributed to the condition.

They say stress is what brings out the genetic potential. I am sorry that had to happen to you and your son by the way.

Speaking of stress and seasonal crash, right now I am trying not to hate my youngest brother whom I overall really like. However he broke my trust by making 7 glutenous pies for Thanksgiving in my mothers kitchen yesterday when I had made a ban on that. What happened is that my mother told him nonsense and go right ahead. The two of them were making glutenous pies all afternoon and then didn't bathe or change their clothes for dinner. I tried hard not to get exposed to the gluten, and suffered the ignominy of having to sit separate to everyone else, however it seems it didn't work probably due to the gluten particles in the air.

Today I woke up with the beginnings of a migraine headache. Earlier on in the night my stomach was upset and I had congestion. I am taking what herbal and other remedies I can. Of course my brother thinks I am nuts to be so sensitive. I am certain he thinks I am just exaggerating my condition. About half my family does. Most of them choose to live a little miserably so they can fit in. None of them have it as bad as I do except for my eldest sister whom they also think is crazy and my other younger brother who has Down's Syndrome. For my brother with Down's he doesn't understand the connection when he gets D and all puffed up and sleepy. My mother gets affected too however she is in total denial since "all she gets" is DH and mental confusion plus eye problems and an increased tendency to get the flu or a cold.

My eldest sister and I are more fit and strong than any of them except for when we get glutened. Ditto with my brother with Down's -- who also lost weight, except for now that is all gained back overnight from eating those stupid pies as well as of course D.

In future I am not going to spend any holidays with my family that is for certain--especially dinners. For now what really worries me is all that blasted gluten in the house from yesterday's extravaganza. I don't feel safe living here when stuff like that goes on. I live in the apartment below but do go up there to help out as well as to do my laundry.

I feel like blasting my brother but am holding myself in check. I will have to let him know how I feel, but I figure I shouldn't lay down world war three. Or should I? What would you do?

I am very tempted to move out, however the timing isn't right. However I am really considering it strongly for the future (like this coming summer) and plan to get rid of a bunch of excess belongings... If they don't care, why should I? It seems like a huge energy sink.

Bea

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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.

Everybody does.

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.

Neurotoxin..Brain 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 :D)

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.

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Hi Quack,

Thanks for being so supportive. Its too late though, I already yelled at my younger brother and my mother. I actually called her a selfish jerk and slapped her face, not only for her not caring about my (read "our") condition now but also for me as a child since I have had this since I was an infant, but she never told me until last spring! I am now 59 years old...

However I was just yelling and screaming in my apartment by myself first, smashing cups and jars I didn't really care about. It was coming out of a really deep part of myself, like some kind of gutteral animal. It actually was very cathartic. I don't normally ever do this. Its actually why my mother came down to see what was going on. She thought I was having a fight.

It really is out of character although it has happened (very rarely) before. People think I am such a do gooder carpet and figure they can ride over me. That isn't going to happen anymore. I think maybe this will garner me more respect in my family ironically. I am done with trying to force their awareness. However my eldest brother has just moved into the spare bedroom in my apartment and will act as my lieutenant so to speak. He too has celiac, it mainly affects him with depression and muscle/tendon pain. As a child he had neurological problems...and probably still does.

As far as my younger brother, I will talk with him again. He told me he feels awful about what he did. He told me he is an jerk. Though at the time I was venting I didn't really care. He said lots of people have dsyfunctional families. True I said, but this is so stupid and easily preventable. It was like the three sillies waiting for the axe to fall on someone's head. I told him I wouldn't mention it again. That they could all just suffer and die early whereas I, the one the family tried to kill in effect so many times (not only did they not tell me about the early celiac but also did nothing after a wall fell on me at age 6 which broke the prongs off my L5 vertebrae and twisted my sacrum, plus did not get me much needed glasses and have discouraged me from trying to figure out the relationship between diet and health despite past severe health problems, making me feel like a hypochondriac), am ending up being stronger and more vital than any of them when I am not glutened.

Now the story in addition is I am mismanaging the family business of rental cottages. Yet another reason to hate me since the economy is going south. The truth is its about to take off despite the economy since for years I have been plowing back our extra income from them into much needed renovations. Now people really need places to live and want to live there in these renovated turn of the previous century cottages and small houses. Previous to the renovations they were the bane of their neighborhood with druggies and prostitutes. All of whom I kicked out. I did it all with monies we earned so we owe no one anything.

Due to this glutening I had to delay putting two places up for rent yesterday but will do it tonight. Here in the Bay Area at least people are thirsty for places such as these so I figure we will do quite well.

My eldest brother says he will do the cleaning upstairs so I can go up there. I don't know if he has had time yet or not since he literally just moved here and put his belongings into storage yesterday and today. My plan is to put up the rental notice on Craigs list and then retire to my art studio and work on clay.

I figure this was a transformative experience for me. I have held off my internal anger and strength from my family for years. I think maybe this was a mistake. I don't know. I moved here to help clean up the mess and get things to a better more functional and loving level. I have poured in so much love. But instead I have gotten resentment. The moths will fly to the flame and there is nothing I can really do about it.

However along the way I have showed some of my siblings that there is a better way. My eldest sister is all gung ho and got rid of her "fibomyalgia" by being entirely gluten free even though her kids think she is nuts.

My eldest brother can carry the torch here now, as well as have a place to discover what its like to truly be off the trace glutens since he still is suffering with achey tendons and depression although he has improved being largely off the gluten this last year.

My sister the nurse is grudgingly respectful and sees how our brother with Down's has been improved being off the gluten even though she has yet to acknowledge our 93 year old mother's need to be off it. She by the way still gets D and depression and has soft bones and teeth.

My youngest brother is the least affected even though its clear his eyes get red from eating gluten and he says he gets some stomach distress and has difficulty healing broken bones. He chooses to ignore it and of course made all those wondrous pies... I guess his cavalier attitude just really got to me in addition to the family thinking I am doing such a bad job with the houses... They all look at me like I am some kind of pariah who is out of her mind.

Right now time will soon tell and show them who is right and who is wrong. I wash my hands of trying to convince them otherwise.

About the nerve damage, I beleive I am steadily improving on that level. I saw a naturopath who did extensive testing including lipid blood work with this outfit that is supposed to be the best that way in the country. They were the ones that said my myelin sheath was down to 50%. Trouble was he was trying to help me detox, using methods that had gluten in them. Of course they didn't work. He finally did this other test that discovered I had low B-1. He didn't tell me what that meant. However I looked it up on the internet and discoverd that low B-1 reduces one's ability to use carbohydrates and proteins. It also gives one Beri Beri, which creates neurological degradation as well as heart and brain difficulties. Two weeks on the co-enzyme B's and my heart stopped racing. I also became much healthier and began to avoid colds etc I normally would have gotten. Since then I have gotten rid of anxiety attacks. Coincidentally the pain in my lower legs and feet went away, as has the pain in my lower arms. I had these pains since I was a child, especialy at night when I'd lie down--which contributed to my becoming a night owl. All classic Beri Beri symptoms. That and the earlier occasional hallucinations I used to get as a child and young adult before taking B vitamins at all. Back then as a young adult I read a book called The Schizophrenias, Yours and Mine which suggested taking the B vitamins. It helped but wasn't enough to get rid of the nerve pains and migraine headaches and eventually the racing heart.

I have taken herbs to help build up my nervous system such as skullcap and the detox herbs to help along the way plus marshmallow root to soothe and heal the villi. I also take nattokinase and bromelain/papain to reduce inflammation and scar tissue. When I can afford it I take E-zorb. Otherwise I use calcium citrate. I also use magnesium citrate with apple cider vinegar and eat lots of organic unsweetened yogurt. I always take liquid sea minerals and extra zinc and A & D fish supplements.

I don't think I could have handled what I expressed yesterday before this...Have it be cathartic rather than crazy making. I called my mother a selfish jerk since she didn't care about my health either now or as a child. I slapped her firmly on the cheek with mental intensity but also fairness and did not go over the line. I told her not to be afraid I wasn't going to beat and kick her like she did me and my siblings as children. Instead I kicked over my potted plants and broke some of the clay pots. I told her I wasn't going to go upstairs until the place was thoroughly cleaned.

My family can't get rid of me right now nor can I leave them. However I do plan to leave in a year's time. I plan to get my ducks in line with a plan first and save money now that the business is at last doing well.

I appreciate your concern and hugs! And hug you back!! I am just betting my story is not just mine but like so many others and perhaps lights a few memories in you as well. This season opened up a few things. I choose to make it work for me rather than against me. It makes life better and a bit easier in actuality not to pretend things are otherwise than they really are.

And yes the migraine finally passed this morning. Last night into today I slept almost 14 hours.

Bea

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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.

The moths will fly to the flame and there is nothing I can really do about 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.

I am just betting my story is not just mine but like so many others and perhaps lights a few memories in you as well

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.

However I was just yelling and screaming in my apartment by myself first, smashing cups and jars I didn't really care about. It was coming out of a really deep part of myself, like some kind of gutteral animal

Wheated You.

It really is out of character although it has happened (very rarely) before. People think I am such a do gooder carpet and figure they can ride over me.

Un-wheated You.

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.

I send you Sunshine. :D

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Ah, just a though, before I go to do my homework.. :D

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.

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Thanks for your continued support.

I do feel a lot better today. I don't at all feel ashamed at how I reacted even if it was pretty extreme. For once I showed my family they can't just walk all over me. They deserved it. Nevertheless it is not how I choose to act normally. It takes pretty extreme circumstances to get me there. I haven't done the same during other glutening episodes. Its just that I was so very bloody angry at my mother and youngest brother's complete lack of consideration and utter selfishness. Their attitude that I just am inventing all this like some kind of hypochondriac made me really mad even though its patently clear I am so much healthier now overall than I ever used to be. Ditto with my eldest sister whom they also think is crazy for being so careful to avoid all gluten even though now she can work hard doing physically demanding labor and has obviously gotten over her supposed fibromyalgia that she had for many years. Not to mention how much better Donald (the brother with Down's) has been doing, Etc. That plus the whole attitude about my work really got to me. I think rightly since their attitudes are very unfair.

I never took antidepressants. I discovered fairly early on that my diet plus exercise really helped plus writing and doing art. Most antidepressants are hard on the kidneys and liver. I lost half my kidney as a young adult and don't want to take any chances at losing any more of it. Further I don't tend to go into rages. This particular rage that I allowed myself for once the other day however was good for my soul. I really am not going to put myself at risk again by eating with my family; I will only eat with them if the food is entirely safe -- which mainly means in my kitchen at this point. At other events I just bring my own or go to a restaurant that has a gluten-free menu.

Overall if I avoid gluten and keep exercising and doing my writing and art plus keep up my social circle I am pretty good during the winter.

Am off for a walk.

Bea

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Thanks for your continued support.

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... :rolleyes:

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 will only eat with them if the food is entirely safe -- which mainly means in my kitchen at this point

I Think that is the only way you are going to be Safe but it is such a Shame.

Enjoy your walk.

I am off for a bit more homework :D

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Taz-that's pretty good. My grandmother, by the way, was born in Tasmania-- LOL!

My blow ups have not been as frequent as yours. I usually go cool rather than hot. But anger is anger and this time I allowed it to blow. And certainly being glutened added both to the rationale and I admit, my crazed emotion. Much like the old Vikings would purposely eat moldy rye bread to go A-Viking on a bloody rampage.

Ironically I can eat at my ex boyfriend's. He and I are good friends now. It turns out he has celiac too. I have helped him a lot on his road to recovery, especially with herbal knowledge as well as diet--and now this advice to exercise vigorously. It has helped him deal with the change of the season crash he usually has had. He now is out digging dirt creating a new garden despite the cold weather whereas before he'd be in bed miserable with no energy for anything.

I went on that walk down the hill with my sister the nurse. She wants us to make more meals etc. for my mom -- which does make sense given that our Mom is really starting to lose it. If we are going to do that however all the gluten has to go...since both my older brother and I have celiac as well as the younger brother with Down's -- as does our dear Mother even though she doesn't want to pay attention to it. She is willing however to grudgingly go along with it if that is all there is to eat. So it hasn't ended. Oh well!

I got a snug face mask from my studio to clean upstairs later. But not now. I actually get time off not having a migraine or recovering from it or having to work. Its beautiful out so I plan to enjoy it and do some carving on my sculpture at last...

And you are right. I am not as angry as I was. However I just can't let this happen to me again when it is so obviously avoidable...

Bea

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My grandmother, by the way, was born in Tasmania-- LOL!

I Knew it..our celiac symtoms sound very similar, now the Taz connection, we Must be sisters. :D

She wants us to make more meals etc. for my mom

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 :P )

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.

especially with herbal knowledge as well as diet--and now this advice to exercise vigorously

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.. :rolleyes:

have you ever been tempted to taste the clay?

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Hi Quack,

Don't have much time to respond since its the work week for me. My brother with Down's however is slow to get going no doubt due to having been glutened several days with all that pie.

I suggest that with your relatives and friends insist on what you need for you and your husband; the rest you can't make them do and they probably won't appreciate it if you try. If they are truly interested and open that's one thing. But more than likely they will be incredulous at least at first. If you can send them some reading material first that might help; say its to help them understand your condition. I even have gotten my mom to start reading Dangerous Grains as well as Dr. Green's Hidden Diagnosis book.

It is a much better known condition in England and Europe -- so on that level it might be a lot easier. They have a lot of gluten-free foods available more commonly at stores and restaurants -- and though many have minute amounts of gluten for most its OK since supposedly the gluten has been removed. (Knowing me though I probably couldn't handle those gluten-free foods however since I can't take kissing someone who has drunk distilled and supposedly safe whiskey etc. -- but then I have had this condition since infancy.) You still might have to cook your own food when at "home" however just to be on the safe side.

Eating the clay isn't as stupid as it sounds. It acts as a draw for poisons. However its easier on a body to put it on your hands and feet for twenty minutes with a bit of apple cider vinegar as well as water in it. You make a paste. Best to use a wooden spoon they say... Food grade Bentonite is the best form. One brand I have seen is Indian Healing Clay found in natural food and supplement stores etc.

Am glad to hear you plan to start exercising again. The mitochondria slow down especially in the Fall and Winter. You have to kick start them to get them going especially as you get older... And then usually you are fine. Just make sure you wear lots of layers. Its very important to stay warm...

Wish I was going to the UK too!

Bea

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I didn't have time to read everyones posts, but for the "cold" issue try getting some "horsechestnut seed extract" its great for anyone with a "deep down cold" in the hands feet etc as it strenghtens the blood vesels in those areas. Last time I purchased some "nature made" brand had some that was gluten free.

Also this is good for anyone with diabetes as it works primarily in the extremities opening up blood flow, be cautious with other drugs you may be taking however

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Cheers Fiddle-Faddle.

I thought it was vit D problem when I lived in the NE UK, winter light levels were low but I expected to see a difference when I emigrated to spain because it has probably the best light levels in europe..but it is just as bad.

I am not supplementing vit D. Maybe it is something I should look at.

Cheers MSAU22

I have been spreading the supplements taking some with breakfast and some with lunch.

I will watch for colour changes throughout the day.

I feel more comfortable that it is just the B vits now.

I should have mentioned that I have my husband on the same tablets and it is having the same effect on him.

I should also mention that I am self-diagnosed..hence the "quack".

I found the site while researching massive (systemic) nerve damage I have.

Eliminating the wheat seemed to partly aleviate the symptoms, so I have been wheat free for about 3 years.

(Apart from accidental contaminations.)

Finding the link on site about the acetyl-l-carnitine helping nerve damage was my first foray into supplements and they have worked so well I thought I would try the B vits too.

Cheers yolo.

I love my exercise.

When I first went wheat free I lost about 50 pounds without dieting but my skin was still the same size and baggy.

Once my pain specialist signed me off for physio I started using the toning tables and I love them

(plus long walks and saunas)

They have toned my whole body up and increased the muscle density I had lost with the nerve damage but as soon as I hit this time of year it all falls apart.

Last year I was off for 6 weeks..this year I am into week 5.

It is the only time I have to stop because I just feel so wrecked.

What is the problem with the cabbage?

Because I have stepped up the leafy green vegetables trying to increase my natural vitamins and cabbage is something I eat a lot more of.

I was going to make myself a melissa rub to try to pep myself up..so thanks for the heads up.

Cheers GlutenWrangler..

that is me exactly.

It is worst when winter first hits..then it subsides.

It hits again going into spring but nowhere near as bad.

It makes me dread winter.

Thanks everyone for the imput..you have no idea how good it feels to talk to people who have the same problems with this bizzare genetic problem. :blink:

Just noticed something in your reply to the woman with the seasonal issues. I get them too with the change of season. Seasonal Affective Disorder is the name given to me for it. Get in the sun, with SPF on to protect of course, up the D with doctors o.k. and check the B vitamins. B12 was lacking so severely in my body, I thought I was having a nervous breakdown in the beginning. Vitamin A was through the roof toxic levels. The lack of B12 created a lot of the nerve damage that I have. Diabetes did the rest. But since taking the B12 supplements, alot of the damage is repaired and the nerves still need outside meds sometimes, but overall there has definately been improvement with vitamin management. I get the seasonal allergies too but they have improved with removal of offenders that the allergist found. Get a thorough vitamin panel done. It can make the difference in season changes and nerve damage. Lots of luck to you.

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cheers yolo.

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.

Seasonal Affective Disorder

That is exactly what we though we had in he UK.

B12 was lacking so severely in my body, I thought I was having a nervous breakdown in the beginning

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.

The lack of B12 created a lot of the nerve damage that I have. Diabetes did the rest.

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.

.

loco_ladi

I am going to chase down the chestnut connection cheers.

Also this is good for anyone with diabetes as it works primarily in the extremities opening up blood flow, be cautious with other drugs you may be taking however

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. :o

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.

Eating the clay isn't as stupid as it sounds. It acts as a draw for poisons. However its easier on a body to put it on your hands and feet for twenty minutes with a bit of apple cider vinegar as well as water in it.

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.

Cheers everyone. :D

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(I bet if I google mild hypothermia, I am going to find the symptoms of seasonal crash)

First quick google gives malnutrition as a likely contributor TO hypothermia.

Obviously more homework to be done.

People most likely to experience hypothermia include:

Very old or very young

Chronically ill, especially with cardiovascular disease

Malnourished

Exhausted

Intoxicated with alcohol or drugs

Mental impairment, e.g. Alzheimer's disease

Underlying medical conditions, e.g. hypothyroidism, stroke, severe arthritis, Parkinson's disease, trauma, spinal cord injuries, burns

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