22 replies to this topic

[Songbird1976]

Hi... I've been following strict gluten-free diet and no dairy, no soy (as per kindly suggested by community). The suggestions I have received have been very helpful. I find myself feeling afraid to eat anything outside of the coconut milk, and I add fruit (which I freeze) and blend into shakes. That is a mainstay meal. I tried a sweet potato and became very itchy so I will eliminate that for now. Going to try to saute some lean natural chicken and fresh spinach. I am just so afraid to try even the gluten free rice. The week that I have been successful with no gluten has been great with the exception of those sensitive breakthrough things I wasn't aware of and have now eliminated so I read one person recommended no eggs, but another said eggs were okay. I don't eat any bread, dairy, soy, losing a lot of weight but I don't mind just getting scared not sure what to eat. Please help. Getting lost again.

[IrishHeart]

I know you are feeling scared because you find yourself having some inexplicable ( and possibly new? ) reactions to food, but the last thing you need is to become fearful of food. This will serve no purpose. You need nourishment and protein and drinking shakes will not give you enough of that.

You are not necessarily a super sensitive celiac. It is too soon for you to be worried about that. There is no chance you are being CCed, so it is not a gluten reaction you are having, correct?

That said, I can relate entirely to your feelings. At one point, no matter what I ate, I felt ill and my entire GI tract burned so much that even water was irritating. I started to balk at eating because it would either make me nauseous or come out one way or the other.

....until that all stopped.

I know you are just beginning this journey. It is difficult to remain patient when you feel yucky, I know. Take probiotics and drink a lot of water. Avoid gut irritants like coffee, tea and soda, vinegars, citrus.

May I suggest that you stay simple for a few weeks?
Plain brown rice. Chicken. Beef patty. Veggies and fruits and nuts that you enjoy. Not sure why a sweet potato would bother you as it is not an allergenic food, (that I know of anyway) but maybe it just did not agree with you?

Please do not become fearful of eating. Everyone is different, so what works for one person (many say eggs are okay) may not be for another (eggs made me nauseous). In fact, eggs did that to me all of my life (baked in things okay; alone, ugh! ) and yet, NOW, I can eat eggs once and while and not feel lousy! (yaay!)

There is much to be said for healing, hon. But, this is a process that TAKES TIME. You're going to get there, too. Hang in there.

[Skylark]

It sounds like you're just barely gluten-free. You will still have some reactions while your gut is healing because the gluten isn't even out of your system. It took a couple weeks for my constant diarrhea to stop and I was still having GI problems off and on for a couple months. This isn't like flipping a switch. There is a lot of inflammation to settle down.

Don't be afraid to eat! Most people with celiac are not super-sensitive. It's good to avoid the dairy. Other than that, have meat, veggies, fruit, nuts, eggs, rice, potatoes, beans, and any specialty gluten-free goodies that look good at the store. Let the gluten-free diet do its work and be patient.

A lot of people with tender stomachs find that meat/vegetable stews are the easiest to digest and it's super-easy to make a pot of soup that's gluten-free. Do you have a favorite chicken soup recipe?

[Songbird1976]

I know you are feeling scared because you find yourself having some inexplicable ( and possibly new? ) reactions to food, but the last thing you need is to become fearful of food. This will serve no purpose. You need nourishment and protein and drinking shakes will not give you enough of that.

You are not necessarily a super sensitive celiac. It is too soon for you to be worried about that. There is no chance you are being CCed, so it is not a gluten reaction you are having, correct?

That said, I can relate entirely to your feelings. At one point, no matter what I ate, I felt ill and my entire GI tract burned so much that even water was irritating. I started to balk at eating because it would either make me nauseous or come out one way or the other.

....until that all stopped.

I know you are just beginning this journey. It is difficult to remain patient when you feel yucky, I know. Take probiotics and drink a lot of water. Avoid gut irritants like coffee, tea and soda, vinegars, citrus.

May I suggest that you stay simple for a few weeks?
Plain brown rice. Chicken. Beef patty. Veggies and fruits and nuts that you enjoy. Not sure why a sweet potato would bother you as it is not an allergenic food, (that I know of anyway) but maybe it just did not agree with you?

Please do not become fearful of eating. Everyone is different, so what works for one person (many say eggs are okay) may not be for another (eggs made me nauseous). In fact, eggs did that to me all of my life (baked in things okay; alone, ugh! ) and yet, NOW, I can eat eggs once and while and not feel lousy! (yaay!)

There is much to be said for healing, hon. But, this is a process that TAKES TIME. You're going to get there, too. Hang in there.

Thank you very much for your reply. I am past digestive upsets at this point as far as reactions as I am not having gluten. When I was getting gluten most recently though the reactions were so severe allergically they were hospital material, trouble breathing, severe itching, rashes, just horrific severe immune attacks on my body. The trouble I am having now is that even if it's not gluten (as in the sweet potato) I am having an allergic reaction. Not as severe as gluten but the itching is awful. I am staying away from it because I fear it is compromising my system's immune function and strength at this point. I am and have been so allergic to so many things for so long it's becoming scary. That is why I say I am afraid to eat. Never was I not able to eat a sweet potato. I made natural, vegetable fed chicken tonight, 4 oz. with spinach sauteed in some olive oil and I feel wonderful. Real food. No reaction. Before the severe allergic reactions to the gluten I would get the gastric symptoms too but intermittently. I gave up 95% dairy a year ago only having a tiny bit of hard cheese sprinkled on something or milk in tea once in a blue moon, or butter and now realize I react badly to it so that is now out. Very itchy. Eggs do not bother me so I don't know what think. Thank you for your advice and experience Sure helps a lot to hear... keeps me going for sure!! I will try what I can.

[Songbird1976]

It sounds like you're just barely gluten-free. You will still have some reactions while your gut is healing because the gluten isn't even out of your system. It took a couple weeks for my constant diarrhea to stop and I was still having GI problems off and on for a couple months. This isn't like flipping a switch. There is a lot of inflammation to settle down.

Don't be afraid to eat! Most people with celiac are not super-sensitive. It's good to avoid the dairy. Other than that, have meat, veggies, fruit, nuts, eggs, rice, potatoes, beans, and any specialty gluten-free goodies that look good at the store. Let the gluten-free diet do its work and be patient.

A lot of people with tender stomachs find that meat/vegetable stews are the easiest to digest and it's super-easy to make a pot of soup that's gluten-free. Do you have a favorite chicken soup recipe?

Thank you so much for your reply! Yes just barely gluten free almost a week or so I think, give or take some mistakes and mislabeling. My doctor doesn't recommend red meat or a lot of meat for family history so I can have chicken or fish on the light side, bought some gluten-free broth and rice so I could try that I guess the goodies are what I'm afraid of and breads and things... a whole lifetime of it bringing me to a severe immune reaction I think I will try them but wait a bit and just go slow. Fear of another severe reaction must be fueling this I think. I'm so glad everyone has been so supportive in helping me figure this out. I will try the soup! Thanks again. Much appreciated.

[Skylark]

So you're severely and dangerously allergic to gluten? That's a little different from celiac. Most people with celiac do not have life-threatening reactions. I'm in a phase now where I cannot even reliably tell if I got a little bit of CC'd food.

I agree with your reluctance to try grain-based foods then. I'd suggest sticking to unprocessed foods. It's easier to tell that they are truly gluten-free. You might want to get an allergist to test you for cross-reactivity to other grains and then grind your own flour from safe grains.

There was also a board member who went on to Zantac because the histamine H2 blocking helped her very serious wheat allergy. That would be something else to talk to an allergist about.

Also have a look at the GAPS diet. http://www.gapsdiet.com. My asthma is much better controlled when I eat that way.

[pricklypear1971]

If you know you are ok with coconut, you can bake using coconut oil and flour. I know sweets and breads are sources of fear right now, but you should know you aren't far off from being able to bake - just differently.

If you can use baking soda and salt, you can bake something sweetened with fruit (assuming you don't react to fruit).

Check out this simple recipe. Just leave out the Stevia (maybe add a bit more date) and walnuts (unless you are ok with nuts).

http://www.elanaspan...walnut-muffins/

I tried this recipe and left out the stevia and it was a bit bland, but it was also very good and nice to have something that didn't give me the sugar willies (apparently I do better without grains and sugar, go figure). Would be nice with a bit of cinnamon and date sugar IMO.

I do hope your reactions lessen.

[Juliebove]

I know what you mean. When my stomach was acting up, I was sticking to mainly plain white rice with chicken and chicken broth. And then I found out I was intolerant to chicken! I also have issues with some herbs so even some vegetable broths are out for me.

For the time being you may have to stick to whole foods, trialing them out one at a time and in small amounts.

[diandliam]

I am seemingly alergic and intolerant to gluten. I have a typical allergic reaction to glutens ( asthma, sinus, cough, drippy nose etc etc) and I have DH and GI reactions associated with intolerance/celiac. I'm not officially diagnosed celiac but I have many allaments that have recovered since being gluten free. I think there are probably a lot of people like me.

[Songbird1976]

So you're severely and dangerously allergic to gluten? That's a little different from celiac. Most people with celiac do not have life-threatening reactions. I'm in a phase now where I cannot even reliably tell if I got a little bit of CC'd food.

I agree with your reluctance to try grain-based foods then. I'd suggest sticking to unprocessed foods. It's easier to tell that they are truly gluten-free. You might want to get an allergist to test you for cross-reactivity to other grains and then grind your own flour from safe grains.

There was also a board member who went on to Zantac because the histamine H2 blocking helped her very serious wheat allergy. That would be something else to talk to an allergist about.

Also have a look at the GAPS diet. http://www.gapsdiet.com. My asthma is much better controlled when I eat that way.

Thank you Skylark, I am definitely Celiac diagnosed but the allergy issue is undetermined. I am and have been going through doctors like tissues. I keep finding I'm allergic to Zantac and all it's generics. Will work on an allergist as I can thank you for that suggestion. Thank you too for the link and other ideas!!

[Songbird1976]

I am seemingly alergic and intolerant to gluten. I have a typical allergic reaction to glutens ( asthma, sinus, cough, drippy nose etc etc) and I have DH and GI reactions associated with intolerance/celiac. I'm not officially diagnosed celiac but I have many allaments that have recovered since being gluten free. I think there are probably a lot of people like me.

Thank you for your reply Diandliam, sure gives me "food for thought" lol Best of luck!!

[IrishHeart]

For what it is worth?

For many months before (and even after DX), I had what I consider allergic reactions to seemingly everything. Food, lotions, even the air I breathed. I was so uncomfortable and unhappy. I cannot tolerate Benadryl or any of the things that work for others.

I went to an allergist who ran all the IgG panels and IgE skin prick tests. As I sat there before him, eyes swollen and dry, dripping nose, a scratchy, burning, red throat, difficulty swallowing, swollen glands, my entire chest felt like an elephant was sitting on it, shortness of breath, wheezing, exhausted and my face/sinuses hurting from inflammation, he looked at me and said: "You have no allergies". I wanted to cry. "What the hell is it then?" I asked. "I don't know", he said.

All of that calmed down in about 7 or 8 months after being gluten-free.
For me, it was all about inflammation from gluten and celiac.

This was just my experience, of course, so you should investigate all causes of your symptoms.

I hope you feel better soon!

[Skylark]

I went to an allergist who ran all the IgG panels and IgE skin prick tests. As I sat there before him, eyes swollen and dry, dripping nose, a scratchy, burning, red throat, difficulty swallowing, swollen glands, my entire chest felt like an elephant was sitting on it, shortness of breath, wheezing, exhausted and my face/sinuses hurting from inflammation, he looked at me and said: "You have no allergies". I wanted to cry. "What the hell is it then?" I asked. "I don't know", he said.

All of that calmed down in about 7 or 8 months after being gluten-free.
For me, it was all about inflammation from gluten and celiac.

IH, that is the most incredible story. I had no idea gluten could give symptoms like that!

[Songbird1976]

For what it is worth?

For many months before (and even after DX), I had what I consider allergic reactions to seemingly everything. Food, lotions, even the air I breathed. I was so uncomfortable and unhappy. I cannot tolerate Benadryl or any of the things that work for others.

I went to an allergist who ran all the IgG panels and IgE skin prick tests. As I sat there before him, eyes swollen and dry, dripping nose, a scratchy, burning, red throat, difficulty swallowing, swollen glands, my entire chest felt like an elephant was sitting on it, shortness of breath, wheezing, exhausted and my face/sinuses hurting from inflammation, he looked at me and said: "You have no allergies". I wanted to cry. "What the hell is it then?" I asked. "I don't know", he said.

All of that calmed down in about 7 or 8 months after being gluten-free.
For me, it was all about inflammation from gluten and celiac.

This was just my experience, of course, so you should investigate all causes of your symptoms.

I hope you feel better soon!

Thank you IrishHeart!

[IrishHeart]

IH, that is the most incredible story. I had no idea gluten could give symptoms like that!

If I had not lived them myself, I would find it hard to believe. I had so many bizarre symptoms that I could not understand why it was NOT allergies. Crazy. Just crazy.

Until I read about the various immune and integumentary System symptoms related to celiac disease, then it made sense.

But they are all gone!

I still get puffy eyelids (blepharitis) and a scratchy throat (along with dreadful neurological symptoms) when I am CCed.

Just amazing what goes haywire from gluten .