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Yenni

Who Else Can't Eat Any Grains At All (even Gluten Free)?

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I can't seem to handle anything but chicken, fish, ham, fruit and veggie and no matter what other gluten free grain (or potato for that matter). I get heartburn. Feel off.

Would be nice to chat with others that have the same issue.

Or am I alone?


One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).

Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)

Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

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Hi Jenny, I can't eat any grains, either, including rice, or nightshades (or a lot of other things). I bet my diet is even more restricted than yours! I can't eat any fruit other than peeled pears, and sometimes a peeled golden delicious apple. And a lot of veggies are out as well.

But hey, better a restricted diet than feeling as terrible as I used to.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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

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Guest LittleMissAllergy
Hi Jenny, I can't eat any grains, either, including rice, or nightshades (or a lot of other things). I bet my diet is even more restricted than yours! I can't eat any fruit other than peeled pears, and sometimes a peeled golden delicious apple. And a lot of veggies are out as well.

But hey, better a restricted diet than feeling as terrible as I used to.

Hi you guys...my sensitivities are actually a combination of both of your sensitivities, plus a few others. I can't have any grains, meat, poultry, citrus fruits, bananas (and a few other fruits), dairy, ANY kind of fat (especially oil) or ANY kind of sugar (besides sugar from a few fruits).

I know, it's hard :( What are your reactions like?

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Ugh, then I am not alone. This thing would have been easy if it was just gluten I feel.

All legumes are out for me and I have a lot of fruit allergies. I can handle Safflower and olive oil mostly.

Yeah..

I usually get heart burn and feel nauseas and out of sorts. Not as bad as I get when I get gluten, casein and soy in my system but it just doesn't work in the long run to eat the other stuff and I am tired of having bad days and heart burn so now I am gonna go hard core on no grains etc.

It is just nice to talk to others that have as many limitations.


One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).

Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)

Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

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I hear everyone of you and I feel for you. I keep saying, I just want to be a normal celiac. Other celiac's will say, "What's a normal celiac?" I would be so happy to just have to give up gluten! Giving up gluten was so easy for me! Giving up everything else has been so much harder and I resent it. More so at different times of the year. I miss food, I guess, after almost 8 yrs of being gluten free, I am greiving again.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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I feel I grieve too. I almost feel hate when my husbands family all sit and feast on their brownies, pizzas, cheese..and regular food.

Not their fault, but man it is hard to deal with.

Some days it feels like a bottomless pit and others I feel more ok about it.

I had a bad day today. People were eating Popcorn, the whole house was smelling from it. Husband came home and had candy and brownie.. I couldn't resist and had a few gluten free cookies and now I have paid all evening with stomach ache and heart burn. Hate myself now.

It would have been so nice to be a regular Celiac.. A dream.

How do you all travel? I feel completely stuck. I don't trust that I will be able to get feed safely on a plane...


One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).

Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)

Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

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I bring my own food on planes, because I know I can't trust them. I only had one problem, when in the Toronto airport they took away my little can of pears (still sealed, of course, because it had liquid). Well, they took the one I had in my purse, but left the one in my backpack! But they didn't take my nail scissors I had in my purse (forgot to take it out).

I am sure my 'pear bomb' would have made quite a splash. :wacko:


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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

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I bring my own food on planes, because I know I can't trust them. I only had one problem, when in the Toronto airport they took away my little can of pears (still sealed, of course, because it had liquid). Well, they took the one I had in my purse, but left the one in my backpack! But they didn't take my nail scissors I had in my purse (forgot to take it out).

I am sure my 'pear bomb' would have made quite a splash. :wacko:

Seems weird to take a can of pears that is unopened like that. I have heard them take stuff that doesn't make sense to me and leave things that seem more dangerous.

I wonder how it would work out flying internationally? My family is in Sweden.

So when you go on vacation, if you do, do you make sure to get a place with it's own kitchen? That is what I assume I'll have to do.

...and I am worried they'll take my food at the air port.


One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).

Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)

Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

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I keep posting about this but I am determined to get the message out!

Our biggest problem is not just gluten and dairy, but carbohydrates per se.

I have been doing a lot of research about this since my digestion collapsed and have figured out why. I stopped gluten and dairy, and although I got immediate relief from the awful stomach pain, I still had other issues - my problems were due to more than just gluten and dairy. I was still getting problems even with gluten-free flours and products and I knew it wasn't to do with hidden gluten. I was determined to get to the bottom of this, as I could not continue the way I was going.

I have always been aware that I had a problem with carbohydrates - I just didn't know what to do about it until now. It took the collapse of my stomach to really focus my mind on to the solution. We ingest a huge amount of carbohydrates - continuously, and it is killing us.

What I have discovered and just started is the Specific Carbohydrate Diet. It eliminates all di-saccharides (sugar and dairy) and poly-saccharides (grains and starches) which our bodies cannot process properly due to over-consumption and the consequent damage to our intestines.

It concentrates instead on simple carbs (mono-saccharides) - honey, very well fermented yogurt (over 24 hours which ensures that the lactose and casein is completely broken down and also provides a much higher concentration of good bacteria), fresh fruit, nuts and most vegetables (except potatoes and other root vegetables - carrots are fine) and proteins, fish, fowl and meat. Honey can be used for sweetening although it and fruits should be limited for a while until bacterial over-growth is under control.

I know there are one or two foods that would not come into this category that I also have problems with, but I also am aware that this is due to the damage to my gut. I will have to avoid those items for a while until my gut starts to heal and then I should be able to tolerate them. I could not cope with meat for a while but am managing to do that now.

Most find when they have been on this diet for a while that they can eventually cope with some more complex carbohydrates - unbelievably some who are Celiac have even been able to tolerate a limited amount of gluten-based. (This may sound controversial, but there is a school of thought that suggests that whilst gluten is a major factor in Celiac disease, the problem may be more to do with general carbohydrate intolerance of which gluten is only one aspect. That could explain why some who are diagnosed with Celiac do not develop the disease. Perhaps their bodies have either an in-built ability to cope with the carbohydrates, or they consume a diet that naturally limits carbohydrate consumption including gluten, so they are not developing damage to their intestines. It could quite logically also explain why so many Celiacs also have major problems with so many other foods - many of them either carbohydrates or foods that would be bacterial antagonists or support, like yeasts)

The trick, once healed, is not to go back to constant ingestion of these foods. They should be in their proper place as an occasional indulgence, not an all-day, every-day consumption. The sad thing is that many people are oblivious to the damage they are doing to their bodies. They would not know what a carbohydrate was even if it hit them in the face! They just carry on stuffing it in, and blow the consequences! Look at any community that does not consume a high-carbohydrate, high-sugar diet - they do not get anything like the sicknesses and diseases that we do.


Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

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Seems weird to take a can of pears that is unopened like that. I have heard them take stuff that doesn't make sense to me and leave things that seem more dangerous.

I wonder how it would work out flying internationally? My family is in Sweden.

So when you go on vacation, if you do, do you make sure to get a place with it's own kitchen? That is what I assume I'll have to do.

...and I am worried they'll take my food at the air port.

I was going to Mexico, so it was an international flight. I did take a lot of snacks with me in my backpack. Lara bars, nuts, chocolate, gluten-free macaroons etc., which was a good thing, because those are what I usually ate for breakfast, because our hosts had nothing in the house that was safe for me for breakfast.

They probably won't take your food unless it contains liquids. But if you take fresh fruit or meat, you will have to eat it on the plane, because it isn't allowed to be brought into other countries. I have taken whole meals of stir-fry, peeled pears etc. to eat on the plane (to Germany) and never had a problem.

Other times, when we would stay in a hotel or resort, we would take a room or cottage with kitchen, so I could prepare my own meals. I've always found that a safe meal is the McDonald's grilled chicken Caesar salad, which seems true for other countries as well. I ate that in Germany as well as here in Canada, and never got sick yet.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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

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I am very interested as to why some of us cannot tolerate carbohydrates - is it because our guts are so damaged? (I say this as I eat my bowl of rice for supper).... <_<

I have been gluten-free for 2 months now but have noticed something is not right after I eat grains, not rice so much, but more the gluten-free bread and stuff. I always thought I was glutenning myself but I'm so meticulous with my preparation, I couldn't figure it out. I think AliB is onto something, at least I think that is what my problem is. How come I can tolerate rice but not gluten-free bread? I don't get that.

Have I just not given myself enough time to get used to the new diet and so I am still feeling the effects (but considerably less burning).

Hmm, maybe I'll go off the grains for a while - but I crave carbs so much - I'm always hungry.


diagnosed January 2008 positive blood test

biopsy confirmed celiac February 2008

misdiagnosed with IBS for years!

bloating, constipation, migraines all disappeared with gluten-free diet

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Im sorry your having so many intolerances. Mine showed up about 1 1/2 years after going gluten free. I cannot eat meats, poultry, dairy, fish, oils, nuts, or seeds due to intestinal distress. I avoid beans and rice with other grains to avoid arthritis flair ups. Tomatoes and peppers along with onions seem to upset my stomach. I stick with potatoes, sweet potatoes, and winter squashes for my primary center meal and eat fruits and veggies on the side. Its hard sometimes but the bonus to it has been weight loss for me.

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My other intols (dairy, rice, soy, corn, yeast and all grains) also showed up 1 1/2 years gluten free. I avoid all grains, most legumes and potatos with other nightshades consumed very sparingly. Grain makes me feel yucky - not as bad as gluten and dairy but still bad enough to say "no thanks". Corn makes me feel horrible for days.

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By cutting out the carbs now I am hoping to cut straight to the chase. If I don't then I may also find that I eventually will end up with major problems at a later stage with other carbs and also other non-carb foods because my gut can't cope any more. I just don't want to get to that stage, where I cannot get proper nutrition from the right food sources.

I am fortunate in that I have continued to have problems straight away that gluten and dairy avoidance alone has not improved. Whilst it did solve some major problems I was still getting reactions from other foods and gluten-free products so I realised the problem had to go deeper than just gluten-free/DF. Finding the carb link has been a real revelation.

I thought I would get a reaction tonight to the first batch of SCD 24 hour fermented cow's milk yogurt I have made but so far, apart from a little gas it seems to be ok. I might make it with goats milk next time as I can cope with even commercial goats yogurt although so far that is the only dairy. Maybe my gut is beginning to be able to tolerate better. Time will tell.

But anyway, I digress. What I am finding is, the longer I avoid the carbs the less I crave them. I am finally getting to grips with the little beggars in my gut and I am refusing to feed them! Initially they make us crave the foods they feed on, but if we can hold out, after a few days the craving goes as they start to die off. I keep reminding myself that those foods have been killing me - that is enough to put me off wanting them and I am now beginning to enjoy the challenge of finding and creating tasty dishes out of what I CAN eat.

Your postings just so back up the thought that it is not just gluten that is the problem but carbs in general. I don't know whether anyone would have made a record of it, but it would be interesting to see in what order your new intolerances started. Were the carbohydrates mainly the first to react with other foods following later? A possibility that Elaine G mentions in her book is that when the damage gets too great, the gut is producing so much mucous in an attempt to protect itself that the enzymes can't get through to digest the different foods - that could explain why other types of foods are also affected, not just carbs.


Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

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I began to have problems with grains as soon as I went gluten-free over 2 1/2 years ago. I also found myself intolerant to tapioca, coconut, dairy, soy, legumes, and up until recently corn. Because of the coconut, I can't tolerate filtered water, so I drink only spring water.

I stayed off all these for 2 years--completely. I find that I can now eat corn and rice but none of the others. I'm also intolerant to citric acid and high fructose corn syrup. Those two are no problem--I don't need to be eating foods containing them anyway :P


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Guest LittleMissAllergy
Im sorry your having so many intolerances. Mine showed up about 1 1/2 years after going gluten free. I cannot eat meats, poultry, dairy, fish, oils, nuts, or seeds due to intestinal distress. I avoid beans and rice with other grains to avoid arthritis flair ups. Tomatoes and peppers along with onions seem to upset my stomach. I stick with potatoes, sweet potatoes, and winter squashes for my primary center meal and eat fruits and veggies on the side. Its hard sometimes but the bonus to it has been weight loss for me.

We have nearly the same diet/intolerances! :) Or perhaps I shouldn't have put a smiley face after that statement...I know how hard it can really be! It seems though that lately I'm even sensitive to my safe sweet potatoes and squash...does this happen to you? What else do you eat? I'd love to hear more about your diet and meals!

I began to have problems with grains as soon as I went gluten-free over 2 1/2 years ago. I also found myself intolerant to tapioca, coconut, dairy, soy, legumes, and up until recently corn. Because of the coconut, I can't tolerate filtered water, so I drink only spring water.

I stayed off all these for 2 years--completely. I find that I can now eat corn and rice but none of the others. I'm also intolerant to citric acid and high fructose corn syrup. Those two are no problem--I don't need to be eating foods containing them anyway :P

Hmm...it seems as though I have a problem with coconut, and I've been having a lot of trouble with water lately...would you mind explaining the connection? I feel silly but I have no idea what it is!

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I, too, would like to know what do you eat? What are your meals like? Breakfast and lunch would be the most challenging for me.

My digestive system seemed to shut down about a year ago after being gluten-free for 10 years. My weight plummeted to 84 lbs. I'm back up to 100 lbs (which is my highest weight in over 10 years); but I'm so afraid to start losing again. And, right now, I seem to be intolerant to practically everything, and I am not feeling well to put it mildly.

How do you give up carbs and keep the weight on? (I feel I'm addicted to carbohydrates.) I'm pretty much at my lowest point, mentally.


Diagnosed Celiac via biopsy '97/Gluten Free ever since

Diagnosed Hashimoto's 04/08

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We have nearly the same diet/intolerances! :) Or perhaps I shouldn't have put a smiley face after that statement...I know how hard it can really be! It seems though that lately I'm even sensitive to my safe sweet potatoes and squash...does this happen to you? What else do you eat? I'd love to hear more about your diet and meals!

Hmm...it seems as though I have a problem with coconut, and I've been having a lot of trouble with water lately...would you mind explaining the connection? I feel silly but I have no idea what it is!

Sweet potatoes and squash I am fine with. My meals are very basic. I eat potatoes by making homemade potato fries, non stick pan fried potatoes or on a non stick griddle, mashed potatoes, baked potatoes then I try and get a variety of vegetables on the side. I try and mix it up with a variety of seasonings. With sweet potatoes I like adding fruits to them and baking them ( I have a recipe if you want it). Grilled fruits are great too and get a carmelized affect to them. I like pineapple and peach slices on the grill and getting them lightly browned. For desserts I like smoothies. Usually some frozen strawberries with either bananas or kiwi and a little orange juice I also mix in a few spinach leaves and chop them up in the smoothies for the vitamins and they do turn the color green but you cant taste them in it since the fruit is so overpowering.

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As long as you totally avoid grain and starch-based carbohydrates and sugar and confine your diet to plenty of tolerated good protein (nothing processed), meat, fish and fowl, eggs, the carbs from fruit and vegetables (not potatoes or other root veg except carrots), honey, nuts and very well cultured (at least 24 hours to fully break down the lactose and casein) yogurt, you should not lose weight in general. There is a possibility of a little weight loss initially but this would normally restore quite quickly.

You will be getting carbohydrates, but a limited amount which is good because the reason we have these problems is because of the quantity we consume, and they will then also be in a form that is much more effectively utilised by the body. The gut will then be able to properly heal and we should then find that the intolerances to foods other than carbs will improve.

Some may say, well if it is only carbs that are the problem, why am I also intolerant of pork, eggs, chicken, whatever? That is probably because the gut is so damaged it is struggling to cope with ANY food. Because of inflammation it is also likely that the gut will over-produce mucous which could also stop enzymes from being able to break other foods down properly.

People who follow the SC Diet have actually found they have been able to gain needed weight when nothing else would work.

There are hundreds of communities out there who never or rarely eat carbohydrate and they are fit, healthy and slim!

If you are overweight or also have a problem gaining weight, or even if you are the right weight but have stomach problems, or even just a 'western' disease or illness, physical or mental, the cause is all the same - carbohydrate overload.


Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

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Hmm...it seems as though I have a problem with coconut, and I've been having a lot of trouble with water lately...would you mind explaining the connection? I feel silly but I have no idea what it is!

Don't feel silly :D It took me the longest time to figure that one out! I knew I had a problem with coconut, but the water connection didn't become clear until someone on this board told me that her water filters were primarily made up of coconut hulls. (she checked with the installer--it was a stroke of luck because we were thinking along the lines of charcoal possibly treated with wheat--and were surprised it turned out to be coconut)

I did some research, and found that most all water filtration systems use coconut hulls....at this point in time, I had been gluten-free for several months and was still having problems. We had bought a new refrigerator with it's own water filter a few months prior, and when I had a "light bulb" moment, and put two and two together, I realized that it was shortly after we bought the fridge that I began to feel sick again. I had been going nuts trying to figure out what else I was intolerant to! <_<

I immediately went back to drinking spring water (Poland Springs) and felt much better right away. You do have to be aware that a lot of bottled waters are simply filtered tap water, so if you indeed need to avoid coconut, you have to make sure to use spring water.

It might be worth a try to get yourself a gallon of spring water, use it for a few days and see if it makes any difference. In my case, it was apparent pretty quickly that it was the filtered water that was the culprit. I had already identified my other intolerances via an elimination diet.

Yep--we have to become food detectives! :lol:


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Finally, after all this time, this makes sense to me. I want to thank Ali for bringing some new thoughts to the board. I read Eileen Gottschall book several years back and walked away from it, thinking it a crazy concept, but I wasn't in the shape then, that I am now. This makes so much sense to me:

Some may say, well if it is only carbs that are the problem, why am I also intolerant of pork, eggs, chicken, whatever? That is probably because the gut is so damaged it is struggling to cope with ANY food. Because of inflammation it is also likely that the gut will over-produce mucous which could also stop enzymes from being able to break other foods down properly.

Anne Lee, one of Dr. Green's nutritionist's told me that they really do not know how quickly a person will heal, or if some will ever heal. She said there are too many varitables of the disease to know to what degree any one person will heal. I have never felt that I healed, I have always felt that each milestone brought a new change that wasn't such a good thing. Now, I wish I was just a regular celiac and not me.

Thank you Ali, you have given me so much to think about.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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