Been gluten-free and still feeling gross

[bekka12]

I have been gluten free since my diagnosis 6 months ago. I'm really careful about cross contamination, but my symptoms have gotten worse, not better over the last few months. Anytime I eat anything, I get super nauseous, and I ended up in the ER last week because I'm not retaining anything I put in my body. Any thoughts on what could be going on? Are there other allergies that usually go hand in hand with celiac? 

[GFinDC]

Hi Bekka,

Celiac is not an allergy, it is an autoimmune condition.  While there are not allergies that go with celiac disease, sometimes people do develop food intolerances.  That could be related to the irritation of the gut during the immune system attack.  It is possible to develop a food intolerance to any food.  Dairy is one additional food intolerance that is fairly common.

Learning the gluten-free diet can be a challenging thing.  You are still new to gluten-free, and you may have some issues with your diet or medicines or other things that you haven't found yet.  I don't think it is good to go too far looking for additional food problems at the beginning.  What kind of foods are you eating?

Oh, welcome to the forum!

[fergusminto]

You won't get any physician agreeing with this but in IMO yes but not necessarily "allergies ". I am coeliac but also have numerous other "intolerances" which I believe are related to celiac disease. Try laying off dairy (use coconut milk, cream and oil), eggs (use No Egg), oats (similar protein as gluten) and soya (filthy stuff!). 

Cook everthing from scratch - not difficult, and do not use stock cubes - keep all bones and boil them up to make your own stock. Not difficult and very healthy. Also use honey instead of sugar and no chocolate.

Your gut needs to heal before you try and reintroduce these foods. Be kind to it and try your best not to upset it.  

Very best of luck.

 

 

[bekka12]

36 minutes ago, GFinDC said:

Hi Bekka,

Celiac is not an allergy, it is an autoimmune condition.  While there are not allergies that go with celiac disease, sometimes people do develop food intolerances.  That could be related to the irritation of the gut during the immune system attack.  It is possible to develop a food intolerance to any food.  Dairy is one additional food intolerance that is fairly common.

Learning the gluten-free diet can be a challenging thing.  You are still new to gluten-free, and you may have some issues with your diet or medicines or other things that you haven't found yet.  I don't think it is good to go too far looking for additional food problems at the beginning.  What kind of foods are you eating?

Oh, welcome to the forum!

I've been eating a lot of rice, certified gluten-free pasta, gluten-free oats, chicken, veggies, eggs, cheese and some other dairy products. I've tried cutting dairy out of my diet, and I felt worse than when I was eating it, so I reintroduced it.  I'm a little discouraged and tired of feeling gross all the time, and I have an appointment with a GI doctor, but not for another month, so I'm trying to figure out if there's anything I can do to feel better. Thanks!

[RMJ]

Some people with celiac can't eat oats, and some gluten free oats are not as gluten free as they could be.  I'd try omitting those from your diet.

[Zodi1993]

Hi Bekka, 

Yes other allergies to food that you are not aware of need to be ruled out. My daughter is Celiac and is allergic to wheat, shrimp, yeast and seaseme seeds. All of these came apparent when she was still sick after going gluten-free. A simple blood test from your GI doctor should help. Once she eliminated these from her diet her overall health improved. 

Welcome to the forum 

[BlueTree]

Often when first diagnosed it's best to eat Whole Foods that are naturally gluten-free for the first 3-6 months. Agree with the no oats (even gluten-free) the first 6 months. Many people with celiac also have other food intolerances. And some have IBS. It will take time to figure it all out. Recommend seeing a dietitian knowledgeable of celiac. 

[Ennis-TX]

Everyone is different you can check my profile for my list of allergies and intolerance I ended up with . Try cutting all processed foods, oats, and dairy. Try a whole food diet of veggies, meats you cook yourself from raw unseasoned selection (might omit meats), eggs nuts and seeds. Try removing different foods for a  week at a time on rotation. A food elimination diet works great for helping identify your issues. I also suggest talking to a doctor/dietician and see about finding any deficiency you might have and build a diet around that and perhaps supplement what you need.

[Irene Joanne]

I would highly recommend you cut out oats- even dairy. I was diagnosed just over a year ago- I can't eat any kind of gluten free oats and have recently cut out dairy and noticed improvement. Mostly I try to eat grain free since I feel better that way. Lots of veggies, fruits, meat and eggs. 

[GFinDC]

On 11/20/2016 at 4:50 PM, bekka12 said:

I've been eating a lot of rice, certified gluten-free pasta, gluten-free oats, chicken, veggies, eggs, cheese and some other dairy products. I've tried cutting dairy out of my diet, and I felt worse than when I was eating it, so I reintroduced it.  I'm a little discouraged and tired of feeling gross all the time, and I have an appointment with a GI doctor, but not for another month, so I'm trying to figure out if there's anything I can do to feel better. Thanks!

Hi bekka,

When you don't feel like your diet is working for you, it's time to eliminate something.  If you eliminate all the processed foods and dairy for a month, maybe things will change for the better.  Don't forget to check your vitamin pills etc for gluten.  I can't say I know of any reason for feeling worse after eliminating diary.  Maybe that was a coincidence?

If you do eliminate things from your diet for a month, don't add them all back at once.  Add back one food at a time, waiting several days before adding another.  A 3 to 5 day wait is good.

You could also try some pro-biotics.

Recovery from celiac disease damage can take months to years.  It is good to give your body/gut an easy time of it for a while to let it heal as much as it can as quick as it can.  Meats, veggies, nuts, eggs, are good for you and your body.  Avoiding carbs and sugar is helpful too.

Pepto Bismol, aspirin, and peppermint tea can help with gut symptoms.

I hope you feel better soon bekka!

[Seasoned Sufferer]

Look into SIBO. Many people with celiac & other digestive disorders also have SIBO. Also, you could try going grain-free & try eliminating nightshades for a time to see if that effects you.

[Celiac Julie]

On 11/20/2016 at 2:13 PM, fergusminto said:

You won't get any physician agreeing with this but in IMO yes but not necessarily "allergies ". I am coeliac but also have numerous other "intolerances" which I believe are related to celiac disease. Try laying off dairy (use coconut milk, cream and oil), eggs (use No Egg), oats (similar protein as gluten) and soya (filthy stuff!). 

Cook everthing from scratch - not difficult, and do not use stock cubes - keep all bones and boil them up to make your own stock. Not difficult and very healthy. Also use honey instead of sugar and no chocolate.

Your gut needs to heal before you try and reintroduce these foods. Be kind to it and try your best not to upset it.  

Very best of luck.

 

 

I'm having lots of stomach aches myself!  Was diagnosed almost 8 years ago and was wondering why no chocolate???  I need to get back on track and try to figure out why I'm sick all the time!

 

[kareng]

i think that is just that particular person's theory or personal intolerance.  I eat chocolate.  Most Celiacs that I know eat chocolate..... cupcakes, cookies, candy, etc......as long as they are gluten free

[GFinDC]

14 hours ago, Celiac Julie said:

I'm having lots of stomach aches myself!  Was diagnosed almost 8 years ago and was wondering why no chocolate???  I need to get back on track and try to figure out why I'm sick all the time!

 

I agree mostly with not eating chocolate.  Most chocolate has both dairy and soy in it.  So it is those 2 ingredients that I am really avoiding, not the chocolate itself.  There are some chocolate products without those ingredients. like Enjoy Life brand chocolate chips, and Bakers Secret Dark chocolate bars for baking, or Hershey's pure cocoa powder.  Also there is a brand called Taza chocolate that is ok but very expensive.  Another option would be some carob powder products.  Carob isn't chocolate but is somewhat similar tasting.  People who can eat dairy and soy shouldn't have a problem with most chocolate.  There has been some mention of gluten cross contamination related to some chocolate production lines, but I don't remember which ones or know if it is still a problem.

[fergusminto]

I have trird (oh how I have tried!!!) to eat chocolate but as Julie, above, says, much if it contains dairy and dots and other flavours/chemicals that I csnnot, obviously eat. Neither can my wife who is not a coeliac but wheat intolerant. Everyone will be different is many ways. Also just now reading up on Zonulin which looks interesting.

[Ennis-TX]

59 minutes ago, fergusminto said:

I have trird (oh how I have tried!!!) to eat chocolate but as Julie, above, says, much if it contains dairy and dots and other flavours/chemicals that I csnnot, obviously eat. Neither can my wife who is not a coeliac but wheat intolerant. Everyone will be different is many ways. Also just now reading up on Zonulin which looks interesting.

Hershey Dark Cocoa Unsweetened is gluten-free (and can be mixed with a bit of coconut oil or water and a sweetener to make chocolate, I have a great recipe that makes a frosting out of almond milk, cocoa, avocado, and agave) , GERBS Allergen Friendly Foods make a dairy free chocolate chip. and Enjoy Life Makes a Dairy Free chocolate chip. Lilly's Makes a Dairy Free and Sugar free version, NuNaturals Makes a Sugar Free, Dairy Free chocolate syrup.