How Sensitive Are You?

[ArtGirl]

I've been wondering if there is any difference in tolerance level with minute amounts of gluten such as CC in individuals who are celiac and those who are (only!) gluten intolerant.

Or do *intolerant* people's symptoms go the whole gammet that *celiac* folks do. I'm wondering because I am diagnosed as gluten intolerant (via Enterolab - two intolerant genes, no celiac genes) and don't seem to be nearly as sensitive as some of those on this board. Is it just me, or is it because of not being celiac?

[kabowman]

Well, I am in the intolerant group and the longer I was away/off of gluten, the MORE sensitive I became. I used to use my old pots and pans and not worry about changing out the teflon, now I have to keep them completely separate. I have found this is true with my other intolerances too...

[jerseyangel]

From a diagnosed Celiac point of view, I am more sensitive to minute amounts the longer I'm gluten-free. I've never knowingly eaten gluten since the Dx, but CC will cause a reaction within about 2 hours.

Having said that, I'm noticing that my gluten reactions are not as long as they were at the beginning.

[CarlaB]

I'm gluten intolerant, very sensitive. Three days into a reaction right now that will probably last 8 days. They almost completely disable me!!

[lonewolf]

I'm gluten intolerant, don't have the main celiac genes, so no official dx. I'm not as sensitive to small amounts of gluten as some on this board are, but I am sensitive. Getting glutened will cause major stomach cramping within an hour or so and then D for several hours and then on and off for 3 days. Then I'm usually fine. I don't seem to be as sensitive to cross-contamination as most, but even a small amount will set me off.

[happygirl]

Celiac diagnosis (and have one celiac gene and one gs gene), extremely sensitive, even to minute amounts of cross contamination. Often start to feel the effects within 30 min or less....the longer I am gluten-free, the quicker and harder they come. Last for days to 1-2 weeks.

Yuck.

[Nantzie]

Gluten intolerant, two genes, both DQ1 subtype 6.

My reaction is within about 15 minutes to half an hour. It runs everything from stomach pain and bathroom issues to irritability and headaches, and whole body pain that makes me feel like one big cramp where I can't even stand up straight. If I get glutened in the evening, I'll get weird insomnia and nightmares. Sometimes I'll even get like the inside of my ear canals hurt. Not like an earache. Just the ear canal. I've also gotten really itchy before. The worst parts of my reaction last just several hours and most of the time its gone by the next morning. Usually the next day or so I'm still tired, irritable and headachy, but that's about it.

I also get a weird skin reaction sometimes that makes my hands look super dry and leathery. It's not DH and doesn't hurt or itch, but it's definitely a gluten reaction. That part lasts about three weeks.

I haven't eaten gluten since I went gluten-free back in January. All my glutenings are from cross-contamination.

I don't think there's a whole lot of difference between being celiac and gluten intolerant. I think the difference is just that everyone has different reactions, whether they're diagnosed celiac or just gluten intolerant. It makes me wonder if maybe the intestinal damage that they check for with the biopsy may eventually be figured out to be just one of many possible symptoms in a group of gluten-related conditions. Like maybe classic celiac with the positive biopsy will be Type 1 Celiac and gluten intolerant will be Type 2 Celiac or something like that...

I do wonder if celiac might be worse than gluten intolerant, maybe the pain is worse, the reactions are longer or more intense, but it's hard to know. I just know that we all seem to be in the exact same boat with just everybody having a different set of reactions specific to them.

Nancy

[AndreaB]

I have one of each gene (celiac and gluten sensitive/intolerant). Since I was tested by enterolab I don't know which I have and always refer to myself as gluten intolerant. I never noticed any symptoms before but now if I get glutened I have tummy troubles and intestinal pain/diarrhea for about a day. The last time (my mother used white flour to braise meat) I had intestinal pain/diarrhea off and on for 3 days.

My oldest son has two celiac genes and has and active intolerance (through enterolab) so I would assume that he would be classified as celiac and not gluten intolerant, even though they seem to be pretty similar.

[taz sharratt]

I've been wondering if there is any difference in tolerance level with minute amounts of gluten such as CC in individuals who are celiac and those who are (only!) gluten intolerant.

Or do *intolerant* people's symptoms go the whole gammet that *celiac* folks do. I'm wondering because I am diagnosed as gluten intolerant (via Enterolab - two intolerant genes, no celiac genes) and don't seem to be nearly as sensitive as some of those on this board. Is it just me, or is it because of not being celiac?

i thought maybe the cc issue was over reacted but since being gluten-free im seroiusly sensetive the more im away from gluten the more sensetive i become and mre severe the reaction is

[Green Fingered Gaelic]

Ditto.

The more I adhere to a strict gluten-free regieme the more sensitive I become.

Some say keep it in your system and stay more tolerent, but I think that leads to serious damage. Lactose intolerence, Diabetes, IBS, Cancer and general unnecessary suffering.

The way I see it keep a gluten-free diet, when you break it by mistake, learn and move on.

Fool me once shame on you, fool me twice shame on me.

I'm becoming stricter and stricter on what I eat, because I know life will be easier if I'm well.

Its ironic when your immune system starts killing you isn't it.

[ArtGirl]

Thanks for all your replies. I can see that level of outward symptoms vary from individual to individual and don't appear to be the result of intolerance vs celiac. Must be something else that controls the type and severity of symptoms. I was just curious about it. My heart goes out to those who get really sick from such a small amount of gluten.

I'm rather new to the gluten-free life and have not intentionally ingested gluten for two months. I guess I can consider myself fortunate in that the last time I was glutened (about three weeks ago at a restaurant) I didn't get nearly as sick as I had before and the duration was about half the time (2 days vs 3-5 days). However, I've been "corned" often during this time (it's been another learning curve to rid my diet of corn!!) but even so, my symptoms are becoming less and less. I guess time will tell if later what I experience with CC after I've been gluten/corn-free for many months.

[oceangirl]

Thanks for all your replies. I can see that level of outward symptoms vary from individual to individual and don't appear to be the result of intolerance vs celiac. Must be something else that controls the type and severity of symptoms. I was just curious about it. My heart goes out to those who get really sick from such a small amount of gluten.

I'm rather new to the gluten-free life and have not intentionally ingested gluten for two months. I guess I can consider myself fortunate in that the last time I was glutened (about three weeks ago at a restaurant) I didn't get nearly as sick as I had before and the duration was about half the time (2 days vs 3-5 days). However, I've been "corned" often during this time (it's been another learning curve to rid my diet of corn!!) but even so, my symptoms are becoming less and less. I guess time will tell if later what I experience with CC after I've been gluten/corn-free for many months.

I'm gluten-intolerant (dx Enterolab), 2 genes HLA-DQ1, both, sub-types 5 and 6, respectively, and am VERY sensitive, moreso as I've gone on. A glutening (which I'm enduring right now, but can't find the culprit) lasts a few days to a week of severe abdominal pain (wakes me up at night), bloating, gas, constipation!!!(go figure) and general malaise and depression. No fun! I diligently avoid gluten like the plague- am beginning to think I may have to ban it from the house!

lisa

[eKatherine]

Keep in mind that the diagnosis of "celiac" really isn't all that firm. It depends on who your doctor is what your diagnosis is. For some doctors the only thing that's important is the biopsy, and a positive biopsy gets a "celiac" diagnosis, while nobody else even gets a "gluten intolerance" diagnosis, regardless of how serious their symptoms are. Others might get a diagnosis of celiac based on dietary response following and inconclusive blood test.

[Green Fingered Gaelic]

Lisa I would strongly recommend a gluten-free household, its tough, but you can make gluten-free food better just by trying a little harder. I'm finally living in a gluten-free household. Without cross contamination lifes easier, but I still am worried about trojan gluten protiens coming out of the woodwork. I live in an old house, there have been bags of flour thrown around here long b4 I was born.

Fortunately I'm nearly finished building my own home, which I know won't have any crumbs laying around ever.

As for corn free, thats tough. I can't imagine how much tougher that would make it.

Tho I would say this, I recently discovered Quinoa. Which is cool seeing as my name in Quin

I love quinoa grain. Makes me feel whole, like I evolved to eat it. Cooked with a fresh chilly, good stock and a tin of tomatoes; its great.

btw haven't fiqured out the tag line thangy, so I'll just quickly say:

Diagnosed Coeliac age 2, in 1982.

Attempting full gluten-free Diet since.

Aim to be realistically well forever in another six months when I begin a more extreme level of strict diet. No processed foods whatsoever, no plastics.

I've only recently discovered a number of things about myself and this disease. It takes 6 months to heal the intestine post gluten. I've never been well in my whole life. One day I hope to be. But right now my belly aches, my bones hurt, I'm nauseus and I'm so freekin tired I can't spell, let alone think coherently.

Good night,

Peace,

Q

[oceangirl]

Lisa I would strongly recommend a gluten-free household, its tough, but you can make gluten-free food better just by trying a little harder. I'm finally living in a gluten-free household. Without cross contamination lifes easier, but I still am worried about trojan gluten protiens coming out of the woodwork. I live in an old house, there have been bags of flour thrown around here long b4 I was born.

Fortunately I'm nearly finished building my own home, which I know won't have any crumbs laying around ever.

As for corn free, thats tough. I can't imagine how much tougher that would make it.

Tho I would say this, I recently discovered Quinoa. Which is cool seeing as my name in Quin

I love quinoa grain. Makes me feel whole, like I evolved to eat it. Cooked with a fresh chilly, good stock and a tin of tomatoes; its great.

btw haven't fiqured out the tag line thangy, so I'll just quickly say:

Diagnosed Coeliac age 2, in 1982.

Attempting full gluten-free Diet since.

Aim to be realistically well forever in another six months when I begin a more extreme level of strict diet. No processed foods whatsoever, no plastics.

I've only recently discovered a number of things about myself and this disease. It takes 6 months to heal the intestine post gluten. I've never been well in my whole life. One day I hope to be. But right now my belly aches, my bones hurt, I'm nauseus and I'm so freekin tired I can't spell, let alone think coherently.

Good night,

Peace,

Q

Quin,

What a cool name...

thank you for the perspective. It's funny- I JUST bought my first bag of quinoa yesterday! Now I'm just eyeing it on my gluten-free shelf thinking about what I might do with it. I'm scared of everything and the only processed foods I eat right now are Erewhon's Rice Krispies and Cape Cod potato chips. I have made no gluten-free substitute things at all and am skeptical of everything. I still seem to react to food in general, I don't know any other way to put it. But I look longingly at that quinoa, wondering if there is some recipe for something that would involve it with no other new substances. i.e.- no xantham gum, no baking powder, no carrageenan, no, no, no,no, no.....sigh. Thank you again.

lisa

[Mayflowers]

Dr. Fine said the only difference between gluten intolerant and celiac is that the celiac got the damage to the intestine that the gluten intolerant hasn't had yet. So I guess that means there's only degrees of sensitivity from mild to severe. I guess a "mild" would take much longer to get the damage but eventually will get it ??

I have one gluten intolerant gene and one of the celiac gene...I think. Someone on this board said I had two. I'm not sure how to read this lab report....

I'm reading about how some people are using separate pots and pans.. Gluten can't be in the teflon could it? It's going to take me time to rid my house of gluten. My teens don't want to cooperate. They want Hot Pockets. I use the same toaster for my rice bread, the crumbs go down, how can I get crumbs from wheat bread?

I first suspected wheat when, after I ate it, I would get burning in my stomach, gas pressure and pain in my esophagus. If I ate a lot of wheat, I'd get acid reflux. I also have had bad fatigue and I even had a blood test for all common food allergies egg, wheat, soy, dairy, citrus. It came back negative! I was shocked because I know for a fact citrus breaks out my face and I have increased migraine attacks. So lucky for me I found this forum and learned about Enterolab from the members.

[Green Fingered Gaelic]

Thanks Lisa you made me smile.

A recipe for Quinoa!

I'll type up this printout infront of me, but first a wee warning. I'm hypersensitive now. Its just getting more and more extreme. I found that one supplier of quinoa was using the same equipment for packing non gluten-free products. I found another supplier thats better.

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

'Fiery Quinoa'

Quinoa is a south american seed which can be used as a alternative to rice or couscouse. This is a tasty snack on its own with a green salad, or serve it as an accompaniment to grilled meats. Toasting the quinoa in a dry frying pan until it starts to pop enhances its flavour.

Serves 4

250g Quinoa

1 tablespoon of olive oil

two onions, peeled & chopped

3 garlic cloves, peeled and crushed

2 bay leaves

1tsp dried crushed chillies

400g tinned chopped tomatoes

4tablespoons of freshly chopped parsley.

Put the quinoa in a non stick frying pan and dry fry over a medium heat. stirring frequently until it starts to pop.

Meanwhile, heat the oil in a frying pan and tsaute the onion until lightly golden, if it starts to stick ad 1 or 2 tablespoons of cold water.

add the garlic, bay leaves, chillies and tomatoes to the onions and equal quantity of water, bring to a simmer, stir in the quinoa. Cover and simmer for 20 minutes until all the liquid has been absorbed and the quinoa is tender. Stir in the parsley.

Serve.

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

Quinoa is about 15% protien so its excellent for rebuilding yourself. I serve it along side some pork steak, in egg and bread crumb and lightly fried. With maybe a green salad with a vinnergrette and a glass of wine

Quinoa is difficult to grow, but I grew three of them this year. They were germinated from a bag of Quinoa for eating, so the seed would have been poor and it was a bit of a joke. The plants are almost dead from neglect, but one of em produced some seed Next spring I want to sow some proper seeds and maybe next autumn I'll have my own guaranteed gluten-free quinoa.

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

About the teenage kids not getting with the programme thats difficult, but at least in a few more years they will be out of the house! Then you can get seriously gluten-free

[oceangirl]

Thanks Lisa you made me smile.

A recipe for Quinoa!

I'll type up this printout infront of me, but first a wee warning. I'm hypersensitive now. Its just getting more and more extreme. I found that one supplier of quinoa was using the same equipment for packing non gluten-free products. I found another supplier thats better.

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

'Fiery Quinoa'

Quinoa is a south american seed which can be used as a alternative to rice or couscouse. This is a tasty snack on its own with a green salad, or serve it as an accompaniment to grilled meats. Toasting the quinoa in a dry frying pan until it starts to pop enhances its flavour.

Serves 4

250g Quinoa

1 tablespoon of olive oil

two onions, peeled & chopped

3 garlic cloves, peeled and crushed

2 bay leaves

1tsp dried crushed chillies

400g tinned chopped tomatoes

4tablespoons of freshly chopped parsley.

Put the quinoa in a non stick frying pan and dry fry over a medium heat. stirring frequently until it starts to pop.

Meanwhile, heat the oil in a frying pan and tsaute the onion until lightly golden, if it starts to stick ad 1 or 2 tablespoons of cold water.

add the garlic, bay leaves, chillies and tomatoes to the onions and equal quantity of water, bring to a simmer, stir in the quinoa. Cover and simmer for 20 minutes until all the liquid has been absorbed and the quinoa is tender. Stir in the parsley.

Serve.

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

Quinoa is about 15% protien so its excellent for rebuilding yourself. I serve it along side some pork steak, in egg and bread crumb and lightly fried. With maybe a green salad with a vinnergrette and a glass of wine

Quinoa is difficult to grow, but I grew three of them this year. They were germinated from a bag of Quinoa for eating, so the seed would have been poor and it was a bit of a joke. The plants are almost dead from neglect, but one of em produced some seed Next spring I want to sow some proper seeds and maybe next autumn I'll have my own guaranteed gluten-free quinoa.

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

About the teenage kids not getting with the programme thats difficult, but at least in a few more years they will be out of the house! Then you can get seriously gluten-free

Quin,

Thank you! I am working up the gumption to try that recipe! Thanks for the warning about the cross-contamination. The quinoa I have is Keen.Wa Brand Ancient Harvest. It was nice to hear from you again!

lisa

[kabowman]

For corn, you really, really have to watch. It is in everything from paper products to your salt--depending on how sensitive you become.

As to the shared toaster, I wouldn't go there. I have seen toasting bags mentioned on this board but don't know where you could find them. My gluten-free, SF, CF, DF, YF bread doesn't hold together enough to toast so I don't have to worry about that.

I have completely separate pots and separate counter areas and 'fridge space and pantry space, etc. It just makes it easier - the boys love raman noodles and their sandwhiches and the hubby likes his sandwhiches.

[CarlaB]

Yea, definately no sharing toasters! You might think you're getting away with it in the beginning, but the longer you're off gluten and the more sensitive you become to it (like someone quitting smoking), the more you will notice you're getting contaminated.

As for the Teflon, it's not the Teflon itself, it's the when it's used and gets little scratches, you cannot get it completely, safely clean. Also replace wooden spoons.

[oceangirl]

Yea, definately no sharing toasters! You might think you're getting away with it in the beginning, but the longer you're off gluten and the more sensitive you become to it (like someone quitting smoking), the more you will notice you're getting contaminated.

As for the Teflon, it's not the Teflon itself, it's the when it's used and gets little scratches, you cannot get it completely, safely clean. Also replace wooden spoons.

Also, Quin-

That is so cool you grow your own seed. I am trying to grow more of my food, but we're in Maine so it's a challenge. My spousal equivalent is building me a cold frame for this winter- we'll see how we do.

lisa

[Mayflowers]

Personally I prefer Millet. I have a recipe for curried millet salad if anyone is interested.

And I'm Irish too.

[oceangirl]

Personally I prefer Millet. I have a recipe for curried millet salad if anyone is interested.

And I'm Irish too.

Cool. Someday I may try millet, too!

Thanks!

lisa

[ArtGirl]

Personally I prefer Millet.

Do you boil millet just like you woud quinoa or rice? Is millet seed something that you can get at a health food store (not bulk, but in a box?).

I have some puffed millet and puffed rice, which I mix in some honey for a sweet treat.

[Green Fingered Gaelic]

Personally I prefer Millet. I have a recipe for curried millet salad if anyone is interested.

And I'm Irish too.

curried millet salad sounds great. Tho I wonder whether curry powder is cut with wheat the way that turmeric is.

Anyhows yea would be interested in that recipe.

So far my experience with millet ain't been so good. Its just a matter of havin the right recipe. My first quinoa attempts were pretty watery and dull.

BTW Mayflowers I'm Irish too. South West.

BTW Lisa I meant to say that I allways use stock instead of water, it gives it more substance, more flavour. Quinoa cooked with just water is pretty dull. The fiery quinoa is better, but the fiery quinoa with stock is the best.