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I have a 10 year old son with DS, ASD, ADHD and Oppositional Defiant Disorder.

We've been on the diet since about February? I guess that's when we started it.

I saw immediate results in a lowering of hyperactivity. He was also not as

easily distracted, which was sometimes a bad thing, as I couldn't distract him

from things he wanted either. After about a 3 weeks, he went through a sort of

withdrawal where he got worse, but it didn't last very long. At first when he

got something with gluten in it, I knew immediately. After a couple of months,

a small fall didn't matter.

's diet was extremely limited. He ate cereal or oatmeal for breakfast,

preferred things that ended in a vowel for the rest of the day - you know,

macaroni, spaghetti, ravioli, etc. He also wanted bread all the time. He

didn't really eat pizza, but loved breadsticks dipped in sauce. He at no

vegetables that we didn't practically force feed him. The only meat he ate was

hot dogs (the cheap kind that probably had fillers).

When we started the diet, I got rice substitutes for the noodles that he ate

(rice macaroni, rice spaghetti, rice twisty noodles for pasta salad, etc.), and

started making my own rice/potato starch/tapioca flour bread (in a bread

machine, I don't have a lot of time), and basically ignored the little

infractions. I made the macaroni and cheese using the same cheese as we used.

I guess that helped with the transition. After a week, I started reading

labels, to discover he couldn't have Doritos, a reward staple.

Now, he eats most meats (with mustard, but oh well, he eats them), he eats some

vegetables (mostly garden fresh, like tomatoes and cucumbers - maybe it's a

texture thing), and loves his bread (rice).

We've seen a lot (bordering on tremendous) advances in the last 4 months or so.

Our church even noticed an improvement. He is starting to answer questions

(other than yes and no). Before the diet he talked in 1-4 word sentences, main

topics only. On the second day of the diet he spoke his first grammatically

correct sentence: I hate grits. Now I'd say he uses 1-6 words sentences (he

still tries to get away with a main word meaning a whole sentence).

We have recently added cod liver oil also (even though I know you didn't ask

about that) and have seen even more improvements in concentration. calls

it his thinking pill.

Loriann

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Hello Beth, is 13 and has been GF/CF for 16mths,he was never a picky

eater so we did nt have too many problems making the change and took

everything out at once,I have seen it advised to take out one element at a

time to lessenwithdrawal. showed some withdrawal he was incontinent of

urine and a bit agitated for about 10 days.I have nt seen a dramatic change

in his behaviour,he is able to concentrate for longer and seems a little

calmer,the big improvement has been GI no more bloating or diarrhoea.I did nt

have him tested for opiods but you can send urine samples to get an idea if

this diet will help,I live in the UK so cant help with specific labs,

will be on this diet for the forseeable future Pat

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  • 8 years later...

Hi Jane, I have been tested for a gluten allergy, but the test came up negative, yet I am definately sensitive to wheat gluten so I have avoided it (mostly) for 18+ months now. It doesn't really affect my samters, but does make me exhausted and affects my digestion. Does wheat affect your Samters? BeckyJane Marino <janesmarino@...> wrote: How many of you out there in Samters World have had food allergy testing? Also, how many of you have been tested as having a

gluten allergy? Has anyone had success with symptoms by following a gluten-free diet?Jane

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Dear Jane,

I am currently following a gluten-free diet. When I eat gluten-

containing products, I get congested and my airways get constricted

(this goes for beer too, bummer), so it must help me not to eat

gluten. I have found that I have no problem with oats (and oat flour,

so I can still bake), and there is a rye bread that they sell at

Vitamin Cottage and Whole Foods called " Dimmer's " that is low-gluten,

and I seem to be able to eat that.

Good luck with being GF. Let me know if you have any questions, and

happy holidays! Hope you're enjoying the break!

Becca

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Becky,

I have been food tested in years passed and twice have been told I have a wheat allergy. I don't however, avoid wheat as I should. I have had some significant symptoms lately that make me wonder about a gluten allergy. I am dealing with fatigue and headaches and I have had a chronic sinus infection for about 3 months now. I am now on my third course of antibiotics and Prednisone. It is sooooo depressing. I've gained weight from the Pred again too. Hate that. I also have a mysterious rash all over my abdomen and have had the rash for a couple of months. Docs can't tell me what it is. So, I am having all of my foods tested again. How were you tested for a Gluten allergy? My respiratory doctor said he can test food allergies but does not test for Gluten. I am thinking of going to a Naturopath to get tested for gluten.

Thanks for your response.

Jane

How many of you out there in Samters World have had food allergy testing? Also, how many of you have been tested as having a gluten allergy? Has anyone had success with symptoms by following a gluten-free diet?Jane

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Thanks so much for your response Becca. I am planning to start the gluten-free diet right after Christmas. I am reading as much as I can about what I can and can not eat. I may write you with questions. I am suspecting that I too get very congested from wheat/gluten. We'll see how this goes.

Jane

From: rebeebit <rebeebit@...>Subject: Re: Gluten-free dietsamters Date: Wednesday, December 24, 2008, 7:00 AM

Dear Jane,I am currently following a gluten-free diet. When I eat gluten-containing products, I get congested and my airways get constricted (this goes for beer too, bummer), so it must help me not to eat gluten. I have found that I have no problem with oats (and oat flour, so I can still bake), and there is a rye bread that they sell at Vitamin Cottage and Whole Foods called "Dimmer's" that is low-gluten, and I seem to be able to eat that.Good luck with being GF. Let me know if you have any questions, and happy holidays! Hope you're enjoying the break!Becca

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Hi Jane, I'm sorry to hear of all your troubles - i hate rashes, so can sympathise. I was just tested with a simple blood test for Coeliacs, which I don't have. But I am clear I have some wheat/gluten allergy, so I just avoid it. i find t's not too difficult to be fairly careful. best of luck...and Merry Christmas! BeckyJane Marino <janesmarino@...> wrote: Becky, I have been food tested in years passed and twice have been told I have a wheat allergy. I don't however, avoid wheat as I should. I have had some significant symptoms lately that make me wonder about a gluten allergy. I am dealing with fatigue and headaches and I have had a chronic sinus infection for about 3 months now. I am now on my third course of antibiotics and Prednisone. It is sooooo depressing. I've gained weight from the Pred again too. Hate that. I also have a mysterious rash all over my abdomen and have had the rash for a couple of months. Docs can't tell me what it is. So, I am having all of my foods tested again. How were you tested for a Gluten allergy? My respiratory doctor said he can test food allergies but does not test for Gluten. I am thinking of going to a Naturopath to get tested for gluten. Thanks for your response. Jane--- On

Wed, 12/24/08, Bannister <beckyb256 (DOT) co.uk> wrote: From: Bannister <beckyb256 (DOT) co.uk>Subject: Re: Gluten-free dietsamters Date: Wednesday, December 24, 2008, 6:50 AM Hi Jane, I have been tested for a gluten allergy, but the test came up negative, yet I am definately sensitive to wheat gluten so I have avoided it (mostly) for 18+ months now. It doesn't really affect my samters, but does make me exhausted and affects my digestion. Does wheat affect your Samters? BeckyJane Marino <janesmarino> wrote: How many of you out there in Samters World have had

food allergy testing? Also, how many of you have been tested as having a gluten allergy? Has anyone had success with symptoms by following a gluten-free diet?Jane

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  • 1 month later...

I just realized, that after cutting out salicilates, preservatives, and food colorings, that I definitely have sinus problems and asthma when I eat wheat.

Have you seen this:http://en.wikipedia.org/wiki/Wheat_allergy

it says that people with aspirin sensitivity are more likely to have problems with wheat!

Michele

How many of you out there in Samters World have had food allergy testing? Also, how many of you have been tested as having a gluten allergy? Has anyone had success with symptoms by following a gluten-free diet?Jane

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Wow! How interesting! This was very timely for me. I am actually having testing this week for Gluten allergy. If it is positive, my doctor will test me further for Celiac disease. I know I have always been wheat sensitive, but I am having a lot more difficulty now as I have gotten older. (Age 50) I have had a rash all over my abdomen and breasts for about 6 months. It seems to get worse when I eat a lot of wheat. I hope I am not grasping here and will get some answers from this testing. Thanks so much for sharing this.

Jane

How many of you out there in Samters World have had food allergy testing? Also, how many of you have been tested as having a gluten allergy? Has anyone had success with symptoms by following a gluten-free diet?Jane

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I have been tested for a wheat allergy but it came back -ve. Maybe I have an intolerance rather than an allergy to wheat, but I definately can't eat it happily - just a small amount plays havoc with my digestive system. I haven't noticed what it does to my sinuses as I'm more preoccupied with my tummy after eating wheat!

Becky

How many of you out there in Samters World have had food allergy testing? Also, how many of you have been tested as having a gluten allergy? Has anyone had success with symptoms by following a gluten-free diet?Jane

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My interpretation of the Wiki article you sent the link to is

that wheat can be a trigger for exercise-induced asthma, just like aspirin can

be a trigger for exercise-induced asthma, and not necessarily that aspirin

sensitivity and wheat allergies are related. Having said that, I do think

there can be a connection. I know I feel better when I eat a low-carb diet

that is low in wheat (though by no means gluten-free). I was tested for a

wheat allergy but it came back negative. I don’t have the symptoms of celiac

disease (which is actually a food intolerance and not an actual allergy – it affects

the body in a different way than an allergy does), so why I feel better eating

low-carb is beyond me. But hey, if it works, then stick to it!

K.

From:

samters [mailto:samters ] On Behalf Of michele

Sent: Tuesday, February 03, 2009 10:10 PM

samters

Subject: Re: Gluten-free diet

I just realized, that after cutting out salicilates,

preservatives, and food colorings, that I definitely have sinus problems and

asthma when I eat wheat.

Have you seen this:

http://en.wikipedia.org/wiki/Wheat_allergy

it says that people with aspirin sensitivity are more

likely to have problems with wheat!

Michele

How many of you out there in

Samters World have had food allergy

testing? Also, how many of you have been tested as having a gluten

allergy? Has anyone had success with symptoms by following a gluten-

free diet?

Jane

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Hi ,Among other things, there is a definite link between insulin, glucose (and therefore high-carb diets) and leukotriene synthesis. Being worse off from a high-carb diet, from an inflammatory point of view, is the norm.------------- Diabete Metab. 1994 Mar-Apr;20(2):146-9.Links

Role of eicosanoids in biosynthesis and secretion of insulin.

Pek SB, MH.

Department of Internal Medicine (Division of Endocrinology and Metabolism), University of Michigan, Ann Arbor 48109.

PURPOSE:

The role of icosanoids, which are products formed from the metabolism

of arachidonic acid, in pancreatic islet-cell function was

investigated. PROCEDURES: Secretion and biosynthesis of insulin and

glucagon, biosynthesis of icosanoids, and biosynthesis of enzymes and

proteins necessary for icosanoid synthesis were studied in vitro, using

perfused rat pancreas, isolated and incubated islets, and

insulin-secreting islet-cell lines. FINDINGS: Certain exogenous

prostaglandins stimulated the secretion of insulin and glucagon;

leukotrienes stimulated insulin but not glucagon release. Leukotrienes

inhibited glucose-induced insulin release, but promoted insulin

biosynthesis. Islet cells produced prostaglandins. Although the

production of leukotrienes in islet cells could not be demonstrated

conclusively, glucose-responsive biosynthesis of 5-lipoxygenase and

5-lipoxygenase-activating protein was considered evidence for

leukotriene synthesis. Inhibitors of prostaglandin or leukotriene

biosynthesis attenuated hormone secretion. CONCLUSION: Icosanoids

produced in islet cells are involved in signal-transduction, in the

form of a fine-tuning amplification of biosynthesis or secretion of

insulin and glucagon in response to nutrient stimuli.> > How many of you out there in Samters World have had food allergy > testing? Also, how many of you have been tested as having a gluten > allergy? Has anyone had success with symptoms by following a gluten-> free diet?> Jane>

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Becky,

I've tested negative too. But they say, that some wheat allergies can not be found with Ige tests because that is not what is causing our symptoms. In us, it effects us at a different level. I believe it is in the stomach where Glu is coverted into Gla. And if Glu is not converted properly, it doesn't effect IgE levels. It effects our leukrotrine production, calcium ions, and digestion.

Michele

How many of you out there in Samters World have had food allergy testing? Also, how many of you have been tested as having a gluten allergy? Has anyone had success with symptoms by following a gluten-free diet?Jane

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What it does say is that they have found high amounts of gliadin in people who are having anaphalxis with aspirin or exercise. Gliadin is wheat related. They don't find high amounts of Ige in those people... but to have excess gliadin can cause problems on other levels. Like leukrotrine production.... digestion problems, joint pain,

How many of you out there in Samters World have had food allergy testing? Also, how many of you have been tested as having a gluten allergy? Has anyone had success with symptoms by following a gluten-free diet?Jane

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I sure wish I understood all of this. Any recommendation on how one of us could begin studying this for better understanding? I was just Gluten tested today. I'll get my test results in a week. Do you all feel that those of us with Samters benefit from a Gluten free diet even if we do not test positive for a gluten allergy?

Jane

How many of you out there in Samters World have had food allergy testing? Also, how many of you have been tested as having a gluten allergy? Has anyone had success with symptoms by following a gluten-free diet?Jane

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Considering so many of us have different symptoms and find

different things that work, I don’t think a general statement can be said

that a gluten-free diet will help all of us. However, it is relatively

easy to significantly reduce your gluten intake, a bit harder to go gluten-free

(there are a lot of weird things out there with gluten in them!) so therefore it

is worth trying for a couple of weeks or preferably longer to see how it

affects your symptoms! I actually think it is more the fact that I eat

low-carb and not that I eat low-wheat that makes me feel better. I do

have issues with my blood sugar when I eat high-carb. I’ve had

those symptoms my whole life though and the Samters is a lot newer. Of

course, the Samters developed after I started eating low-carb. Sometimes I

wonder if eating low carb most of the time and then flip-flopping back

and forth, which totally mucks up my blood sugar and stomach, couldn’t

have had some other affect on me? Every time I eat carbs and then go

through the hell that is going back low carb I swear I won’t do it

again. But those carbs are just so tasty! I actually really wanted

my doc to say I was allergic because then it would give me a reason to stick to

low-carb/wheat free other than “I think it might help some.”

K.

From:

samters [mailto:samters ] On Behalf Of Jane

Marino

Sent: Thursday, February 05, 2009 8:34 PM

samters

Subject: Re: Gluten-free diet

I sure wish I understood all of this. Any

recommendation on how one of us could begin studying this for better

understanding? I was just Gluten tested today. I'll get my test

results in a week. Do you all feel that those of us with Samters

benefit from a Gluten free diet even if we do not test positive for a gluten

allergy?

Jane

__._,_._

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Huh, interesting. Makes me wonder even more if going low-carb

was a bad idea. There are times I think I would have been better off dealing

with the blood sugar issues and not trying low carb. But at the same time I like

not having to eat every 3 hours during the day or face dizziness, shakiness,

light-headedness and severe stomach cramps… might explain why the Singulair

seems to help me a lot and why I feel best low-carb!

Are there many of you out there eating low-carb or gluten-free

(which are definitely not one and the same!!)? I know at one point some people

were discussing being vegetarian might help Samters symptoms too… any updates

on that also?

K.

From:

samters [mailto:samters ] On Behalf Of asfyso

Sent: Thursday, February 05, 2009 3:38 AM

samters

Subject: Re: Gluten-free diet

Hi ,

Among other things, there is a definite link between insulin, glucose (and

therefore high-carb diets) and leukotriene synthesis. Being worse off from a

high-carb diet, from an inflammatory point of view, is the norm.

-------------

Diabete Metab. 1994 Mar-Apr;20(2):146-9.Links

Role of eicosanoids in biosynthesis and secretion

of insulin.

Pek

SB,

MH.

Department of Internal Medicine

(Division of Endocrinology and Metabolism), University of Michigan, Ann Arbor

48109.

PURPOSE: The role of icosanoids,

which are products formed from the metabolism of arachidonic acid, in

pancreatic islet-cell function was investigated. PROCEDURES: Secretion and

biosynthesis of insulin and glucagon, biosynthesis of icosanoids, and

biosynthesis of enzymes and proteins necessary for icosanoid synthesis were

studied in vitro, using perfused rat pancreas, isolated and incubated islets,

and insulin-secreting islet-cell lines. FINDINGS: Certain exogenous

prostaglandins stimulated the secretion of insulin and glucagon; leukotrienes

stimulated insulin but not glucagon release. Leukotrienes inhibited

glucose-induced insulin release, but promoted insulin biosynthesis. Islet cells

produced prostaglandins. Although the production of leukotrienes in islet cells

could not be demonstrated conclusively, glucose-responsive biosynthesis

of 5-lipoxygenase and 5-lipoxygenase-activating protein was considered evidence

for leukotriene synthesis. Inhibitors of prostaglandin or leukotriene

biosynthesis attenuated hormone secretion. CONCLUSION: Icosanoids produced in

islet cells are involved in signal-transduction, in the form of a fine-tuning

amplification of biosynthesis or secretion of insulin and glucagon in response

to nutrient stimuli.

>

> How many of you out there in Samters World have had food allergy

> testing? Also, how many of you have been tested as having a gluten

> allergy? Has anyone had success with symptoms by following a gluten-

> free diet?

> Jane

>

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That is interesting, Michele...what is the implication of this?

Becky

How many of you out there in Samters World have had food allergy testing? Also, how many of you have been tested as having a gluten allergy? Has anyone had success with symptoms by following a gluten-free diet?Jane

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I've had the food allergy testing and it also came back negative, but

I feel that wheat exacerbates my sinus symptoms. Also, the food

allergy tests are NOT reliable--if you feel better not eating

something, then you probably have some sensitivity to it. That said,

I am finding that I can occasionally eat a small amount a wheat (a

bite of a cookie, for example) and be OK. I hear that with a true

allergy, you can build up a tolerance. However, it's interesting that

high carbs can increase leukotriene synthesis--this would be aligned

with Dr. Weil's anti-inflammatory diet, which encourages only whole

grains.

Man, props to for cutting out salicylates. I decided that

there was no point in being able to breathe or smell if all of your

food tastes bland. However, it's been 5 weeks since I went of

prednisone and I can still smell and breathe just fine, so I'm

pleased. This is a personal record for me!

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I’d

like to clarify my definition of “low-carb.” Dr. Weil’s

diet is in no way, shape or form low-carb! The website says, “On a

2,000-calorie-a-day diet, adult women should consume between 160 to 200 grams

of carbohydrates a day.” OMG if I ate that many carbs a day I’d

have blood sugar issues and have to eat every 3-4 hours. Eating low-carb,

in a typical day I probably eat fewer than 50 grams of carbs and usually I try

to eat closer to 30g, sometimes less. Whole grains are nutritionally

healthier but they typically have the same impact on blood sugar as regular

white bread. That statement is certainly true for me. Some whole-grain

breads may be slightly lower in carbs than white bread, but most aren’t.

If anything, the eating style I follow is counter to what Dr. Weil recommends.

However, I am pretty sure that the blood sugar issues I have sort of negate

what positive effects I might get from eating an anti-inflammatory diet.

Maybe inflammatory foods aren’t my issue too, because I do certainly feel

better and breathe better when I cut out the carbs!

K.

From:

samters [mailto:samters ] On Behalf Of rebeebit

Sent: Friday, February 06, 2009 9:31 AM

samters

Subject: Re: Gluten-free diet

I've had the food allergy testing and it also

came back negative, but

I feel that wheat exacerbates my sinus symptoms. Also, the food

allergy tests are NOT reliable--if you feel better not eating

something, then you probably have some sensitivity to it. That said,

I am finding that I can occasionally eat a small amount a wheat (a

bite of a cookie, for example) and be OK. I hear that with a true

allergy, you can build up a tolerance. However, it's interesting that

high carbs can increase leukotriene synthesis--this would be aligned

with Dr. Weil's anti-inflammatory diet, which encourages only whole

grains.

Man, props to for cutting out salicylates. I decided that

there was no point in being able to breathe or smell if all of your

food tastes bland. However, it's been 5 weeks since I went of

prednisone and I can still smell and breathe just fine, so I'm

pleased. This is a personal record for me!

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It sounds like we all have some different digestive issues that are

separate from the Samter's problems. Thanks for clarifying that about

the Dr. Weil diet--I don't think much about my carb intake. I only

find that my blood sugar gets a little wacky when I eat too much

sugar, but carbs in general don't cause a problem. Then again, since

I have a wheat allergy, the only grains I eat are rye, oats, rice,

barley, and quinoa. Not all people with wheat allergies can eat rye,

oats, and barley, I just kept a food journal and figured out what

bothered me and what didn't.

Vegetarian question: I'm a quasi-vegetarian, and I have Samter's. I

don't notice any problems when I eat chicken (which is less than a

couple times a month), so I don't know if that helps. I'm also taking

fish oil, and I haven't noticed any problem since i started those

supplements. In fact, I was hoping they might help the Samter's (see

previous posts of mine). The fish oil might be helping. I can see a

polyp back in my nose, but it's been 5 weeks since I stopped

prednisone, and I can still smell and breathe just fine. I'll keep

you posted.

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This is a good point, we should try to be precise on the notion of carbs. There are several ways to look at carbs.First, to set things straight, this extract from Wiki : ------------Classification

Carbohydrates can be classified as simple (monosaccharides and disaccharides) or complex (oligosaccharides and polysaccharides). The term complex carbohydrate was first used in the Senate Select Committee publication Dietary Goals for the United States (1977), where it denoted "fruit, vegetables and whole-grains".[9] Dietary guidelines generally recommend that complex carbohydrates, and such nutrient-rich simple carbohydrate sources such as fruit (glucose or fructose) and dairy products (lactose) make up the bulk of carbohydrate consumption. This excludes such sources of simple sugars as candy and sugary drinks.

The USDA's Dietary Guidelines for Americans 2005 dispensed with the simple/complex distinction, instead recommending fiber-rich foods and whole grains.[10]

The glycemic index and glycemic load

concepts have been developed to characterize food behavior during human

digestion. They rank carbohydrate-rich foods based on the rapidity of

their effect on blood glucose levels. The insulin index is a similar, more recent classification method which ranks foods based on their effects on blood insulin

levels, which are caused by glucose (or starch) and some amino acids in

food. Glycemic index is a measure of how quickly food glucose is

absorbed, while glycemic load is a measure of the total absorbable

glucose in foods.-----------A low-carb diet is a diet low in the sum of all carbohydrates, no matter what their subtype is.A low-glycemic-index diet is a diet which will lead to a more moderate glycemic index surge after a meal. It may be rich or not in carbohydrates, but these carbohydrates need to have a low-glycemic index. Typically, in this diet, one wil favor whole-grain foods over white-, processed-grain foods.The glycemic index is a notion developed by the University of Sydney in Australia. The following site has a definition of the glycemic index, as well as a food database : http://www.glycemicindex.com/From an inflammatory point of view, what one should try to have is a low-glycemic-index diet.>> I'd like to clarify my definition of "low-carb." Dr. Weil's diet is in no> way, shape or form low-carb! The website says, "On a 2,000-calorie-a-day> diet, adult women should consume between 160 to 200 grams of carbohydrates a> day." OMG if I ate that many carbs a day I'd have blood sugar issues and> have to eat every 3-4 hours. Eating low-carb, in a typical day I probably> eat fewer than 50 grams of carbs and usually I try to eat closer to 30g,> sometimes less. Whole grains are nutritionally healthier but they typically> have the same impact on blood sugar as regular white bread. That statement> is certainly true for me. Some whole-grain breads may be slightly lower in> carbs than white bread, but most aren't. If anything, the eating style I> follow is counter to what Dr. Weil recommends. However, I am pretty sure> that the blood sugar issues I have sort of negate what positive effects I> might get from eating an anti-inflammatory diet. Maybe inflammatory foods> aren't my issue too, because I do certainly feel better and breathe better> when I cut out the carbs!> > K.> > > > From: samters [mailto:samters ] On Behalf Of> rebeebit> Sent: Friday, February 06, 2009 9:31 AM> samters > Subject: Re: Gluten-free diet> > > > I've had the food allergy testing and it also came back negative, but> I feel that wheat exacerbates my sinus symptoms. Also, the food> allergy tests are NOT reliable--if you feel better not eating> something, then you probably have some sensitivity to it. That said,> I am finding that I can occasionally eat a small amount a wheat (a> bite of a cookie, for example) and be OK. I hear that with a true> allergy, you can build up a tolerance. However, it's interesting that> high carbs can increase leukotriene synthesis--this would be aligned> with Dr. Weil's anti-inflammatory diet, which encourages only whole> grains.> > Man, props to for cutting out salicylates. I decided that> there was no point in being able to breathe or smell if all of your> food tastes bland. However, it's been 5 weeks since I went of> prednisone and I can still smell and breathe just fine, so I'm> pleased. This is a personal record for me!>

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One thing this does not totally clarify is that low-carb (based

on the definition below) is pretty much going to be low-glycemic-index and

therefore good from an inflammatory point of view. I have looked into a low-glycemic

index diet and personally I found it was too much work. There are tables

online of various foods, including brands of the same type of foods, for

example whole-grain bread, and it is amazing how different the glycemic index

can be simply for different brands of whole-grain breads. Simply cutting

out carbs is much easier (at least for me). Read the label, if it has a

lot of carbs/serving, don’t eat it. Look at the fiber content too. Something

with a lot of fiber, you can subtract the fiber grams from the total grams of

carbs and overall reduce the impact on blood sugar. I friend of mine was

diagnosed as insulin resistant and was told she needed to go on a low-glycemic

index diet, originally described to her as “no white.” I helped

her find foods she could eat and explained to her things like corn were high in

carbs and technically considered a “white” food. She couldn’t

understand why she was still having problems yet eating no white food! She

got some books on low-glycemic index eating and now does very well controlling

her blood sugar. Another advantage of eating low carb is you tend to eat

a lot more fresh foods because most processed foods are high in carbs. People

like to say I can’t be eating healthy because I don’t eat fruit,

but I didn’t eat much fruit before I started low carb and now I eat a lot

more vegetables than I used to eat! And I also do eat a few fruits,

mainly berries, when they are in season.

Anyway, it is interesting for me to see there is an actual link

between low-carb/low-glycemic-index and inflammation. Thanks everyone for

posting the info!

K.

From:

samters [mailto:samters ] On Behalf Of asfyso

Sent: Saturday, February 07, 2009 8:40 AM

samters

Subject: Re: Gluten-free diet

This is a good point, we should try to be precise on the notion of carbs.

There are several ways to look at carbs.

First, to set things straight, this extract from Wiki :

------------

Classification

Carbohydrates can be classified as simple (monosaccharides

and disaccharides)

or complex (oligosaccharides and polysaccharides).

The term complex carbohydrate was first used in the Senate Select

Committee publication Dietary Goals for the United States (1977), where

it denoted " fruit, vegetables and whole-grains " .[9]

Dietary guidelines generally recommend that complex carbohydrates, and such

nutrient-rich simple carbohydrate sources such as fruit (glucose or

fructose) and dairy products (lactose) make up the bulk of

carbohydrate consumption. This excludes such sources of simple sugars as candy

and sugary drinks.

The USDA's Dietary

Guidelines for Americans 2005 dispensed with the simple/complex

distinction, instead recommending fiber-rich foods and whole grains.[10]

The glycemic index and glycemic

load concepts have been developed to characterize food behavior during

human digestion. They rank carbohydrate-rich foods based on the rapidity of

their effect on blood glucose levels. The insulin

index is a similar, more recent classification method which ranks foods

based on their effects on blood insulin levels, which are caused by glucose (or starch)

and some amino acids in food. Glycemic index is a measure of how quickly food

glucose is absorbed, while glycemic load is a measure of the total absorbable

glucose in foods.

-----------

A low-carb diet is a diet low in the sum of all carbohydrates, no

matter what their subtype is.

A low-glycemic-index diet is a diet which will lead to a more

moderate glycemic index surge after a meal. It may be rich or not in

carbohydrates, but these carbohydrates need to have a low-glycemic index.

Typically, in this diet, one wil favor whole-grain foods over white-,

processed-grain foods.

The glycemic index is a notion developed by the University of Sydney in

Australia. The following site has a definition of the glycemic index, as well

as a food database : http://www.glycemicindex.com/

From an inflammatory point of view, what one should try to have is a low-glycemic-index

diet.

>

> I'd like to clarify my definition of " low-carb. " Dr. Weil's diet

is in no

> way, shape or form low-carb! The website says, " On a 2,000-calorie-a-day

> diet, adult women should consume between 160 to 200 grams of carbohydrates

a

> day. " OMG if I ate that many carbs a day I'd have blood sugar issues

and

> have to eat every 3-4 hours. Eating low-carb, in a typical day I probably

> eat fewer than 50 grams of carbs and usually I try to eat closer to 30g,

> sometimes less. Whole grains are nutritionally healthier but they

typically

> have the same impact on blood sugar as regular white bread. That statement

> is certainly true for me. Some whole-grain breads may be slightly lower in

> carbs than white bread, but most aren't. If anything, the eating style I

> follow is counter to what Dr. Weil recommends. However, I am pretty sure

> that the blood sugar issues I have sort of negate what positive effects I

> might get from eating an anti-inflammatory diet. Maybe inflammatory foods

> aren't my issue too, because I do certainly feel better and breathe better

> when I cut out the carbs!

>

> K.

>

>

>

> From: samters [mailto:samters ] On Behalf

Of

> rebeebit

> Sent: Friday, February 06, 2009 9:31 AM

> samters

> Subject: Re: Gluten-free diet

>

>

>

> I've had the food allergy testing and it also came back negative, but

> I feel that wheat exacerbates my sinus symptoms. Also, the food

> allergy tests are NOT reliable--if you feel better not eating

> something, then you probably have some sensitivity to it. That said,

> I am finding that I can occasionally eat a small amount a wheat (a

> bite of a cookie, for example) and be OK. I hear that with a true

> allergy, you can build up a tolerance. However, it's interesting that

> high carbs can increase leukotriene synthesis--this would be aligned

> with Dr. Weil's anti-inflammatory diet, which encourages only whole

> grains.

>

> Man, props to for cutting out salicylates. I decided that

> there was no point in being able to breathe or smell if all of your

> food tastes bland. However, it's been 5 weeks since I went of

> prednisone and I can still smell and breathe just fine, so I'm

> pleased. This is a personal record for me!

>

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Yes, from a practical point of view, it is easier to be low-carb than

low-glycemic index. But, in fact, the glycemic-index diet can be

simplified to a core approximation :

- prefer whole-grain bread/rice/pasta to white, processed

bread/rice/pasta,

- be very moderate on high-glycemic index foods such as potatoes, corn,

- eliminate or be very moderate in " obvious " sugars such as glucose,

corn or maple syrup, honey, pop-corn, soft drinks, etc

- eat lots of vegetables, preferably green,

- eat fruits.

This simple approximation will be both " pretty low-carb " and " pretty

low-glycemic index " .

If you want an even simpler approximation of a " reasonable " diet, the

vegetable/fruit industry here has come up with a basic, interested but

very efficient advice : have each meal course or component be 50%

vegetables or fruits by weight or volume, at a glance.

Stop worrying, as they say, and just make sure about half of your plate

at any time of the day is fresh vegetables & fruits.

Eating half vegetables & fruits systematically will average whatever

constitutes the other half (provided this other half does not abuse

sugars & fats, otherwise this would be a case of your left hand ignoring

what your right hand is attempting to do).

The " 50% rule " is also an easy way to achieve the " 5-10 fruits &

vegetables/day " public health goal.

On the 5-a-day-goal, see : http://www.ifava.org/default.asp

> >

> > I'd like to clarify my definition of " low-carb. " Dr. Weil's diet is

in no

> > way, shape or form low-carb! The website says, " On a

2,000-calorie-a-day

> > diet, adult women should consume between 160 to 200 grams of

carbohydrates

> a

> > day. " OMG if I ate that many carbs a day I'd have blood sugar issues

and

> > have to eat every 3-4 hours. Eating low-carb, in a typical day I

probably

> > eat fewer than 50 grams of carbs and usually I try to eat closer to

30g,

> > sometimes less. Whole grains are nutritionally healthier but they

> typically

> > have the same impact on blood sugar as regular white bread. That

statement

> > is certainly true for me. Some whole-grain breads may be slightly

lower in

> > carbs than white bread, but most aren't. If anything, the eating

style I

> > follow is counter to what Dr. Weil recommends. However, I am pretty

sure

> > that the blood sugar issues I have sort of negate what positive

effects I

> > might get from eating an anti-inflammatory diet. Maybe inflammatory

foods

> > aren't my issue too, because I do certainly feel better and breathe

better

> > when I cut out the carbs!

> >

> > K.

> >

> >

> >

> > From: samters [mailto:samters ] On

Behalf

> Of

> > rebeebit

> > Sent: Friday, February 06, 2009 9:31 AM

> > samters

> > Subject: Re: Gluten-free diet

> >

> >

> >

> > I've had the food allergy testing and it also came back negative,

but

> > I feel that wheat exacerbates my sinus symptoms. Also, the food

> > allergy tests are NOT reliable--if you feel better not eating

> > something, then you probably have some sensitivity to it. That said,

> > I am finding that I can occasionally eat a small amount a wheat (a

> > bite of a cookie, for example) and be OK. I hear that with a true

> > allergy, you can build up a tolerance. However, it's interesting

that

> > high carbs can increase leukotriene synthesis--this would be aligned

> > with Dr. Weil's anti-inflammatory diet, which encourages only whole

> > grains.

> >

> > Man, props to for cutting out salicylates. I decided that

> > there was no point in being able to breathe or smell if all of your

> > food tastes bland. However, it's been 5 weeks since I went of

> > prednisone and I can still smell and breathe just fine, so I'm

> > pleased. This is a personal record for me!

> >

>

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Here is what I found:

Gluten-free diet helped my sinus issues (which were quite severe)

Salicialate and preservative free diet helped my asthma

My Samter's was really, really bad. I was taking 6-8 Zyfo CR a day and that was just to feel halfway ok. Now, on my diet, I take 2 a day and I feel great. Sometimes I forget to take it because I wonder if even the 2 are necessisary. More energy, and very little problems. In 2007, I was in the hospital once a month with severe asthma in which sometimes they kept me overnight.

I can't say this will work for everyone. But I do think that since we are not taking aspirin ... and yet our symptoms remain... there is something that is still causing our problems. For me, it is food related. I have had 4 allergy test and they all came back negative. This effects are system on a level that researchers have not yet discovered.

Believe me, this diet was not easy. But the alternative of feeling SO bad SO much and feeling SO good now... it's a relief. I, too, can eat small doses of it once in a while, but nothing daily or in large quantities. I usually go out to eat once a week and eat whatever I like and have some wine. I'll experience mild symptoms afterwards. I think it was the build-up of eating it every day.

Michele

From: Keefer <julie.keefer@...>Subject: RE: Gluten-free dietsamters Date: Thursday, February 5, 2009, 8:56 PM

Considering so many of us have different symptoms and find different things that work, I don’t think a general statement can be said that a gluten-free diet will help all of us. However, it is relatively easy to significantly reduce your gluten intake, a bit harder to go gluten-free (there are a lot of weird things out there with gluten in them!) so therefore it is worth trying for a couple of weeks or preferably longer to see how it affects your symptoms! I actually think it is more the fact that I eat low-carb and not that I eat low-wheat that makes me feel better. I do have issues with my blood sugar when I eat high-carb. I’ve had those symptoms my whole life though and the Samters is a lot newer. Of course, the Samters developed after I started eating low-carb. Sometimes I wonder if eating low carb most of the time and then flip-flopping

back and forth, which totally mucks up my blood sugar and stomach, couldn’t have had some other affect on me? Every time I eat carbs and then go through the hell that is going back low carb I swear I won’t do it again. But those carbs are just so tasty! I actually really wanted my doc to say I was allergic because then it would give me a reason to stick to low-carb/wheat free other than “I think it might help some.”

K.

From: samters@groups .com [mailto:samters] On Behalf Of Jane MarinoSent: Thursday, February 05, 2009 8:34 PMsamters@groups .comSubject: Re: Gluten-free diet

I sure wish I understood all of this. Any recommendation on how one of us could begin studying this for better understanding? I was just Gluten tested today. I'll get my test results in a week. Do you all feel that those of us with Samters benefit from a Gluten free diet even if we do not test positive for a gluten allergy?

Jane

__._,_._

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