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Need help/advice with symptoms

Snowdrop

Rebel without a biscuit
Messages
2,933
A little gluten still causes me to get high antibodies
on my stool test so it's out for me. Imho, it's best to just
avoid it completely. There's a ton of info on the web
now about how it affects our bodies. Those of us with
chronic illnesses are by far the most affected from what
I've seen. People with ms, lyme, anxiety, autism, etc
are seeing improvements by avoiding gluten, dairy,
corn, soy, chemicals, etc.

There are gf certified foods that are safer than those
that aren't certified. Or at least that's the goal.

tc ... x
Hi X

I was quite surprised at how easy it was to go without gluten (I mean from a food selection POV).
That was my reason for not trying it sooner. The GF bread we like is even made locally.
If you don't mind my asking: what are the improvements you are aware of that people have experienced gluten-free?
regards,
snowdrop
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
rats. i long lost my post. quickly, theglutenfile will
give you this info. a gluten summit is going to take
place in November that has all the best
people I know of. Googling gluten summit
will retrieve that info.

My list of improvements is long. Ataxia, white lesion
on brain, right foot drop, improved myoclonus, narcolespsy,
floor rolling under feet when standing, etc etc.

hth. x

ps. local bread are great but beware of the gluten
cross contamination. Paleo diet is best for avoiding
all cc but a real pita for a pwc, esp in a small town
with only 1 health food store.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
rats. i long lost my post. quickly, theglutenfile will
give you this info. a gluten summit is going to take
place in November that has all the best
people I know of. Googling gluten summit
will retrieve that info.

My list of improvements is long. Ataxia, white lesion
on brain, right foot drop, improved myoclonus, narcolespsy,
floor rolling under feet when standing, etc etc.

hth. x

ps. local bread are great but beware of the gluten
cross contamination. Paleo diet is best for avoiding
all cc but a real pita for a pwc, esp in a small town
with only 1 health food store.


It seems that the symptoms you refer to most are neurological in nature. I have many of this type of issue too so I hope I too find relief.
Thanks for the response. And I am beginning to wonder about the issues of cross contamination. Slowly, slowly, that will have to be sorted too. I hear you on the Paleo we were mostly meat and veggie eaters dinner wise so hopefully a change will not be too much of a shock.
healthy wishes sent your way,
SD
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
A lot of my digestive problems cleared up too. I was
too late for the toilet many times if you catch my drift.
I'm still shocked when I think about my doctors suggestion
for this. All I can think of is that he probably had
stock in Imodium. : 0

My endoscopy and colonoscopy post gfcfsfefcf + chemical
free diet showed my previous diagnosises of hiatal
hernia, gerd, gastroparesis, polyps, etc were gone.
: ) I still have symptoms at times but nothing
like I had prior to that diet. I was eating gf whole
grains and legumes back then.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
paleo is just organic meats, fruits and veggies. Not
high protein or low gi. Dr cordain has good info on this.

basically it's just what a caveman could've eaten. He could've
eaten fruit all day if he hadn't killed an animal.

Those of us with glucose problems can't function
on high fruit diet but some can.

tc ... x

but because you are eating a lot of meat and fishand less grains you are ipso facto getting more protein an less fructose/gluten/lactose in your diet - it I not originally organic I thought..... though that is always a good idea IMO

it is not just what a caveperson would eat - though based on that kind of diet - pre a high grain diet that was introduced post agriculture


A
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
A lot of my digestive problems cleared up too. I was
too late for the toilet many times if you catch my drift.
I'm still shocked when I think about my doctors suggestion
for this. All I can think of is that he probably had
stock in Imodium. : 0

My endoscopy and colonoscopy post gfcfsfefcf + chemical
free diet showed my previous diagnosises of hiatal
hernia, gerd, gastroparesis, polyps, etc were gone.
: ) I still have symptoms at times but nothing
like I had prior to that diet. I was eating gf whole
grains and legumes back then.

BTW gerd and gastroparesis and hernias are all very common in EDS - no sure about polyps but skin tags are so possible

low FODMAPS allows some gluten though not too much- it is the fructose that is the issue

A
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
lost my post I thin k again - but low FODMAPS des not just mean fruit - it I thte fructose to glucose ratio in foods so things like broccoli cauli watermelon apples and pears are high up on the avoid list while stone fruits and berries are usually fine
A
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Back in the days when the "caveman" or "paleo"
or "hunter gatherer" diets were first being recommended
to me, the only foods allowed were meats, fruits and
veggies. Aka what our bodies immediately recognize
as sources of available nutrients.

There are a couple of exceptions but to keep it
simple it was described this way. If you can eat
it raw, it was paleo. Dr Cordain was the expert at
that time.

I like simple easy to understand diets. And based on what
I've seen those with chronic illnesses shouldn't be
eating any gluten. There's a gluten summit coming
up in November where the best of the best explain
this.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Just a progress report for those who offered their help and for those who might be considering gluten-free.

I continue to feel better in terms of cognitive functioning. Clearer mind, more stamina.

But I'm crawling out of a hole that felt like nearly brain dead so while the gains might not make me a rocket scientist they are small but significant. The down side to the GF state has been anxiety and mental buzzing. I start thinking about something and at night I can't turn my mind off.

The anxiety is mild and comes and goes (mostly at night) and the mental buzzing I have found I can manage by (and here I realise my GF isn't quite true any more) eating a small amount of gluten food just before bed. It's not purist but it works for me and I'm not coeliac and have no ill effects from doing it.

I may consider other changes as per suggestions but I am in the midst of packing as we are obliged to move our landlord has lost her job in the states and is moving back home ~ so now it would be really good to find some simple way of avoiding PEM ~ and don't we all wish that. ;)

SD
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
The enzyme dpp-iv may help you. I use either enzymedica
or country life brands. Be sure whatever brand you get
is gf.


The results on this were still being debated the
last time I looked but I know some people who swear
by it. I think it lessened my reaction to gluten cc
but there's no way of accurately measuring this.

Theanine is good for anxiety. The capsules I bought
were 100 mg. At one pointment I needed 1 every hour but
at other times I had to split it down to 1/4 - 1/3.

Good luck on your move. I'm going thru the same thing.

btw gluten has been found to damage more than the
digestive tract. I first found this on the web in 2005, but
I'm not sure how long this has been known. theglutenfile
is the best resource so far for this info. The gluten
summit coming in Nov will be interesting too.

tc ... x
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Fwiw even the fda recognizes the dangers that low levels
of gluten can cause. Being a purist isn't unreasonable considering
the scientific data accumulated on this. When the fda
was researching the level of gluten they would allow food
they did a great job of pulling together current
research. This info was on their website under
determining standards for gf. They mostly reported
what the doctors involved in the gluten summit had
found.