Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Afraid To Eat
0

23 posts in this topic

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. :(

0

Share this post


Link to post
Share on other sites


Ads by Google:

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. :)

1

Share this post


Link to post
Share on other sites

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? :)

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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. :)
1

Share this post


Link to post
Share on other sites




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.

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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!! :)
0

Share this post


Link to post
Share on other sites

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!!

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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!

1

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites

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).

0

Share this post


Link to post
Share on other sites

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!

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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. :)

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,099
    • Total Posts
      920,355
  • Topics

  • Posts

    • Thank you for going through my long post and responding. I have been both dairy and gluten-free free for 10 months now. Yes, even I was worried about other food allergies. I mentioned it to my GI doc and asked if I need food allergy test to eliminate other allergens. He said, food allergy tests give a lot of false positives and are not accurate. He said: not everything is because of food allergy and it's refractory celiac which is causing issues as the jejunum biopsy, done recently, is showing villous flattening.

      My doubt: 1. If I have so much damage in my small intestine (villous flattening) then how was I keeping fine for 6-7 months ( eating eggs, soy, rice and meat) - was constantly losing weight though - but was able to work out regularly - not much fatigue. 2. If it is other food allergens ( out of mentioned allergens, I take eggs, soy chunks, almonds only) why does it happen only few times and not always - I keep well for 7-8 days and then fall sick again - this without any change in diet.  
    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,134
    • Most Online
      1,763

    Newest Member
    Alinapep
    Joined