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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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Afraid To Eat
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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. :(

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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. :rolleyes:

....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! :blink: ) 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. :)

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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? :)

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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. :rolleyes:

....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! :blink: ) 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.

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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. :)
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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.

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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.elanaspantry.com/banana-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.

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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.

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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.

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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!! :)
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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" :unsure: lol Best of luck!!

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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". :blink: 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!

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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". :blink: 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!

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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". :blink: 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!

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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 . :blink:

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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!! :)

You may look into a compounding pharmacy that could make a "cleaner" version of an antihistimine. You may have a temporary or permanent intolerance to the base - corn, etc. A compounding pharmacy should be able to switch bases and tell you what base it is - allowing you to figure out what works.

It may be worth your time to try it. Antihistimines are immune suppressants - so it may help to suppress your immune system a bit. Or not - everyone is different (I was in steroids and it had very negative effects, but antihistimines seem to help without permanent damage).

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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. :(

I strongly recommend keeping a food log. Write down what you eat, and note any symptoms you're feeling. Many food intolerances can have delayed reactions, so it makes it easier to put the puzzle of what you can safely eat together.

You may have had a bad reaction after eating a sweet potato, but it may have been that the starch was hard to digest? If you added a digestive enzyme, the sweet potato may be ok? Many of us find that we need the enzymes at first.

Also, take a good probiotic. It helps balance the gut flora, so you don't have reactions to foods because of that.

I get bad reactions to some foods, and then find they're ok if I try them again. Maybe it's from combining things that are harder to digest, or cause reactions when blended? I have to get a bad reaction several times before I remove it from my diet.

While in the healing process, your system will be constantly changing. That's normal. Don't be afraid to eat!

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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". :blink: 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!

7 or 8 months? Thank you for saying this IH. I am still battling with these symptoms 6 months in. It's nice to know it might yet settle down. Sorry to butt in on this thread. The OP is getting some good advice from you all.

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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 . :blink:

It is truly amazing, we learn so much from one another too. Thank you. I am so happy they are all gone for you :D

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You may have had a bad reaction after eating a sweet potato, but it may have been that the starch was hard to digest? If you added a digestive enzyme, the sweet potato may be ok? Many of us find that we need the enzymes at first.

Also, take a good probiotic. It helps balance the gut flora, so you don't have reactions to foods because of that.

While in the healing process, your system will be constantly changing. That's normal. Don't be afraid to eat!

Thank you so very much Bubba's Mom. This is most interesting. Makes a lot of sense to me. I will do the probiotics as I see many recommend this. Thank you for your post, some very helpful information. :)

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7 or 8 months? Thank you for saying this IH. I am still battling with these symptoms 6 months in. It's nice to know it might yet settle down. Sorry to butt in on this thread. The OP is getting some good advice from you all.

I am always reluctant to say how long it has taken me to even start to see progress because I never want my experience to be discouraging for others.

Healing is a unique time table.

I am gluten-free nearly 15 months now and I am still healing ....slowly. My doc and I know it may take me YEARS to be well and out of pain. I had dozens of symptoms and complications, though so I do not want anyone to think it may take them that long to heal.

I always strive to be encouraging to others, :) so I am hesitant to say how long my journey has been. But I see progress all the time (I can do simple things now that I could not do for 3 years--like drive, eat and keep food IN, tie my shoes, multi-task, etc ) and I remain ridiculously optimistic. :lol:

I know people want to feel great RIGHT NOW!!...and frankly, that just does not happen. We need to be realistic, too.

Best regards, IH

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Thank you so very much Bubba's Mom. This is most interesting. Makes a lot of sense to me. I will do the probiotics as I see many recommend this. Thank you for your post, some very helpful information. :)

I am a pain in the arse about recommending probiotics. :)

Celiac guts NEED these. Read this:

http://thefooddoc.com/probiotic_facts

If you are not on them now, I suggest you start them ASAP. ;)

Cheers, IH

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It is truly amazing, we learn so much from one another too. Thank you. I am so happy they are all gone for you :D

THOSE symptoms are gone in me , but I still have more to resolve.

My point is...they may not be Classical IgE-mediated allergies.

Get tested, so you cover your bases, but if the results reveal nothing, just know that gluten can cause them, too.

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      Hey ArtG, I saw the urologist today...unfortunately for me they can still see my stones on an xray.  Sigh.  The largest is 3x6 in my right kidney.  He does not believe I can pass this one on my own.   All of my bloodwork came back fine.  Nothing alarming in the urinalysis either. His recommendations...keep drinking tons of water.  I had 4.2 liters of urine output when I tested.  Add in a fish oil supplement.  Decrease sodium intake.  Limit meat to 10 ounces per day.  Increase dietary calcium.   Work at lowering oxalate consumption...my urinary oxalate was 45.  They want it between 20 and 40.  But he gets people that are over 100 so mine is not all that high. 3 options...1. watch and wait.  Recheck in a few months to see if there is stone growth.  2. Shock wave lithotripsy.  3. Let it come out when it decides to and see what happens. I just don't know.  I hate the idea of being put under as they would do for the shock wave thing.  I've had too many surgeries already.  It scares me to be honest.  I also don't want to deal with another episode.   I don't know what I'll do.  We've got a vacation planned at the end of the month and I just want to go and enjoy that.  Not worry about kidney stones. I'm sorry to hear about your upcoming surgery...it really is always something!
    • celiac disease is psychosomatic
      I know what food products are. Probiotics was a recent example I saw on the news about things labeled gluten free that were not gluten free. So, supplement labels in addition to food labels.
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    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
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    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
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    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
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