Feeling Better But Still Not 100% Since Going gluten-free

[Timguy86]

I posted a while ago about my symptoms. Lots of digestive issues, feeling sick in the stomach all day long, etc...

 

It's been about 5 months since I've gone gluten free and I'm feeling much much much better.

 

I was tested for celiac, my IGA IGLA IGGGGG or whatever the heck they all are, they were all normal. So the doctor said I didn't have celiac disease.

 

I started eating gluten again, felt really sick again, stopped and felt better again. So I figured I would just stop completely and see how I go in case I had gluten intolerance.

 

Well I definitely have gluten intolerance. Since I've gone gluten-free if I have even a little tiny bit of gluten I feel really sick in the stomach to the point where I just want to sit down and not move because I feel so bad and that lasts for up to 4 or 5 days after eating gluten.

It's been a slow process of figuring out what has gluten in it and eliminating it. My wife cooks and she's been doing a great job, but occassionally there's little mysteries like why I got sick every single time we would have soup. She would make it all gluten free, I wouldn't have any bread with it, etc... but still I would get really sick every time. It turned out to be the vegitable stock she was using, it had wheat in it. Wheat just hides in everything!

 

Anyway apart from the occasional unintentional slip up which has resulted in really bad symptoms, I've been pretty good, I'd say 90%. I don't feel sick in the stomach any more, but my trips to the toilet aren't pefect, with bowel movements not being solid. But occasionally they will be, maybe twice a month. They have improved though since going gluten-free.

 

I'm wondering why it is that I'm still having this issue? Could I still need more time for my digestive system to heal fully and get back to normal? It's only been in the last month that I've been able to have soda drinks again, they used to give me really bad heart burn even if I just had half of one. I figure that's because my digestive system is healing now and it's not so sensitive any more.

The really severe sickness I felt in my stomach has stopped, so I'm up and about without a problem now. It's just this one last thing that's got me stumped.

 

And the weird thing is that some foods I really shouldn't have a problem with at all, but I do! I'm also completely dairy free, because I'm lactose intolerant as well. So I'll have 70% coco lindt  chocolate which apparently is dairy free and yet that will still make me really sick in the stomach just like gluten does.

 

Other foods that make me sick: Rice Milk (dairy and gluten free apparently), macadamia nuts,  and doritos salsa (dairy and gluten free apparently). And I think maybe potatoe chips make me sick as well, but they are supposed to be dairy and gluten free too...

 

I'm able to eat rice and potato fine when it's homemade... I really don't understand what it could be. Maybe an additive they use? Could it be msg or something like that? Could it be something that happens to the food when it's processed? Could I have a nut intollerance as well?  Or could it just be that my digestive system is still healing and is still ultra sensitve?

 

Any ideas?

 

Anyway right now I'm just avoiding all of those foods and am feeling very good, but just not quite back to 100% yet.

 

Thanks

[nvsmom]

Sounds like you are on the right track. It can take months for things to get better. It took me a good year to feel like most things were better. As you get into a longer period of not being glutened, I bet you'll noticeably feel better.

Are you using Rice Dream for rice milk? There as been a lot of talk around the forum as to whether it s actually gluten-free. I avoid it just because it seems questionable.

Avoiding one brand of salsa, macadamia nuts and chips isn't too bad. Perhaps try chips with minimal ingredients or those from a dedicated gluten-free facility. Try them again at a later date.

I hope you keep getting better.

[1desperateladysaved]

I am glad to hear that you are feeling better. I find it easier to make from scratch instead of reading labels.   Rice milk can be homemade.  One can just google a rice milk recipe.  I make chicken broth by adding chicken bones and scraps to a pot full of water.  The longer one simmers it the better it will taste. I often put it in a crock pot overnight.   One can add vegetables for added nutrition.  When finished run it through a sieve and add salt while making your dish if desired.  Neither rice milk or broth takes a lot of effort, just cooking time with a little planning.

 

I believe all of your possible explanations for problems may be right.  It sounds like you are doing excellent detective work.  More time we help you to finish healing and figure even more out.

 

 

D

[dilettantesteph]

I think that you may be having problems with something called cross contamination.  In your house, if baking has happened recently,  there may be flour in the air, some of which may get in your food.  The same thing can happen with bread crumbs, or pasta stuck in a colander, or gluten on a sponge used to wipe counters.  The same thing can happen in manufacturing facilities if lines aren't cleaned well enough between running a gluten containing item and a gluten free item.  You may get really bad symptoms from a really big slip up and these smaller symptoms from regular small cross contaminations.

 

As far as the Lindt goes, this is what they say: Open Original Shared Link

As far as the rice milk goes, it is rice dream?  Some have problems with that one: Open Original Shared Link

 

Keep track and don't eat the things that seem to give you symptoms and you should improve.  I hope that you feel better soon.

[Bella11]

I agree with the previous poster.. cross contamination could definitely be an issue.  

 

Another possible issue could be cross reactivity. This is the concept that some people who are extremely sensitive to gluten will have a reaction from eating foods which do not contain any gluten (such as cheese or chocolate) simply because they contain a protein which is considered similar and the body treats it as if it is gluten.   Open Original Shared Link  

 

Failing all else, it is possible that you have non gluten related food allergies as well.  With celiac disease, you are more likely to develop food allergies due to the damage done to the gut lining (however I understand you don't have celiac).  If you think you might have food allergies, it is recommended that you removed the foods you think might be causing issues then after giving your body a rest for at least a few weeks, add in the food items one at a time to see whether you notice a reaction.  Alternatively, you can get food allergy testing done however I hear mixed reviews as to the consistency of the results.

 

You said you don't have celiac disease.. did you have the genetic testing done?  If this is negative, then you definitely cannot get it, ever.. however you most certainly sound like you have at least a very strong intolerance.

[kareng]

I agree with the previous poster.. cross contamination could definitely be an issue.

Another possible issue could be cross reactivity. This is the concept that some people who are extremely sensitive to gluten will have a reaction from eating foods which do not contain any gluten (such as cheese or chocolate) simply because they contain a protein which is considered similar and the body treats it as if it is gluten. Open Original Shared Link

Failing all else, it is possible that you have non gluten related food allergies as well. With celiac disease, you are more likely to develop food allergies due to the damage done to the gut lining (however I understand you don't have celiac). If you think you might have food allergies, it is recommended that you removed the foods you think might be causing issues then after giving your body a rest for at least a few weeks, add in the food items one at a time to see whether you notice a reaction. Alternatively, you can get food allergy testing done however I hear mixed reviews as to the consistency of the results.

You said you don't have celiac disease.. did you have the genetic testing done? If this is negative, then you definitely cannot get it, ever.. however you most certainly sound like you have at least a very strong intolerance.

There is no reliable evidence, currently, that a Celiac reacts to another food as if it were gluten.

Open Original Shared Link

Open Original Shared Link

[Bella11]

There is no reliable evidence, currently, that a Celiac reacts to another food as if it were gluten.

Open Original Shared Link

Open Original Shared Link

 

Most of us do not have this issue but some of the super sensitive do.  I imagine it is not common (certainly I've not had the issue) but I know people who have had this issue.  I am putting the idea out there as an option as people have different symptoms and what most people can handle, some cannot.  Whilst I am no expert or Doctor, I am studying grad level nutrition and do research before making such statements.  You are certainly entitled to your opinion as well.

[kareng]

Most of us do not have this issue but some of the super sensitive do.  I imagine it is not common (certainly I've not had the issue) but I know people who have had this issue.  I am putting the idea out there as an option as people have different symptoms and what most people can handle, some cannot.  Whilst I am no expert or Doctor, I am studying grad level nutrition and do research before making such statements.  You are certainly entitled to your opinion as well.

It's not my opinion, it is the opinion of celiac disease researchers.

[Bella11]

It's not my opinion, it is the opinion of celiac disease researchers.

Not a problem.  I have read that from some sources and I have read the opposite from others - from celiac disease researchers and Doctors.  I am not saying I know 100% that my view is correct, however from my reading I think it can be an issue for some.  The original link I gave was written by a Doctor, however here is another example (see below).  

 

What it comes down to is that regardless of which researchers you believe, it is up in the air, and some people on gluten free diets do not get 100% better as we all know.  As everyone is different, it is worth considering cross reactivity, cross contamination and food allergies if eliminating gluten doesn't do it (ofc also considering how damaged the gut lining was to begin with).

 

Open Original Shared Link

[notme]

hey, timguy

i would think you are still healing - it's been over 3 years since i was diagnosed with celiac, and i am still healing.  certain things will absolutely irritate a damaged gut, although some mistakenly attribute this to cross reactivity (of which there is no scientific proof)  but i would bet that you will do better as you heal.  a good idea would be to use a food journal/elimination diet.  i was still limiting/avoiding certain things that i had documented as irritating to me, and now i am able to digest them.  are you taking a probiotic?  very helpful

good luck

[Timguy86]

Thanks for all the replies. Some really good ideas. I think maybe cross contamination could be a problem. I swear though it seems every processed food makes me sick. Last night I thought I would try something new and tried a gluten free, nut free, dairy free berry bar made with corn, rice, and soy. And 2 hours after eating it I started feeling unwell, I went to bed, and now all day today I've felt really sick in the stomach. The only thing I can think of is that maybe I'm allergic to soy as well. It's really strange.

 

And the rice milk which makes me sick in the stomach is the vitasoy rice milk: "Ingredient Declaration: Filtered water, whole brown rice (min. 13%), sunflower oil, calcium phosphate, sea salt". Open Original Shared Link

There is nothing in that at all that should make me sick... but it does. Again it's really strange.

And to answer the question about whether or not I got the genetic testing done, I didn't. However there does seem to be lots of food intolerances in my family. My mother also gets digestive issues and says after eating bread she feels sick, and she feels sick after eating the lindt chocolate too... My brother gets sick from drinking milk. And my sister has a really bad reaction to msg. Lots of skin allergies in my family as well. So I wouldn't be surprised if we are all just prone to certain food intolerances.

I think for now I'm just going to play it very safe and try reintroducing things again in 3-6 months time. So my list to cut out for now will be, gluten, dairy, nuts, soy, and pretty much all junk/processed food just in case it's been cross contaminated.

Can't wait to get back to 100% though, then finally I might be able to start putting some weight back on, I've dropped from 85kg (187lbs) to 70kg (154lbs) since having all these food intolerances. It really sucks.

[Gemini]

Not a problem.  I have read that from some sources and I have read the opposite from others - from celiac disease researchers and Doctors.  I am not saying I know 100% that my view is correct, however from my reading I think it can be an issue for some.  The original link I gave was written by a Doctor, however here is another example (see below).  

 

What it comes down to is that regardless of which researchers you believe, it is up in the air, and some people on gluten free diets do not get 100% better as we all know.  As everyone is different, it is worth considering cross reactivity, cross contamination and food allergies if eliminating gluten doesn't do it (ofc also considering how damaged the gut lining was to begin with).

 

Open Original Shared Link

As Kareng stated, there is no scientific evidence that cross reactivity exists and when you really read into the theory behind it, it sounds like something a crack pot doc made up to make more money off of sick people resorting to desperate measures to become well again. The reason that some people do not heal or improve on the gluten-free diet is because many do not educate themselves deeply enough after being diagnosed and make mistakes with the diet, they have additonal food allergies or intolerances (which is extremely common with Celiac) or have another underlying issue which is aggravating their gut.  Any of these could happen with Celiac and make it harder for healing to happen.  People can believe what they want and make this diet as hard as they want but it doesn't mean a "theory" is hard core fact.

[Bella11]

Nice to see everyone being open to different ideas.  I didn't say I was definitely correct just that it was a possible explanation.  I know people with severe food reactions in addition to celiac disease.  There is adequate support for cross reactivity - both for and against.  I believe when it comes to food allergies and celiac disease that it is better to be open minded and explore possible explanations when someone is not getting better.  As I said before people are entitled to their opinions.  I am not trying to make the diet "hard" just offer possible things to consider for someone having a difficult time.  Seriously didn't expect such narrow mindnessness from fellow celiacs.

[Bella11]

Thanks for all the replies. Some really good ideas. I think maybe cross contamination could be a problem. I swear though it seems every processed food makes me sick. Last night I thought I would try something new and tried a gluten free, nut free, dairy free berry bar made with corn, rice, and soy. And 2 hours after eating it I started feeling unwell, I went to bed, and now all day today I've felt really sick in the stomach. The only thing I can think of is that maybe I'm allergic to soy as well. It's really strange.

 

 

And the rice milk which makes me sick in the stomach is the vitasoy rice milk: "Ingredient Declaration: Filtered water, whole brown rice (min. 13%), sunflower oil, calcium phosphate, sea salt". Open Original Shared Link

 

 

There is nothing in that at all that should make me sick... but it does. Again it's really strange.

 

 

And to answer the question about whether or not I got the genetic testing done, I didn't. However there does seem to be lots of food intolerances in my family. My mother also gets digestive issues and says after eating bread she feels sick, and she feels sick after eating the lindt chocolate too... My brother gets sick from drinking milk. And my sister has a really bad reaction to msg. Lots of skin allergies in my family as well. So I wouldn't be surprised if we are all just prone to certain food intolerances.

 

 

I think for now I'm just going to play it very safe and try reintroducing things again in 3-6 months time. So my list to cut out for now will be, gluten, dairy, nuts, soy, and pretty much all junk/processed food just in case it's been cross contaminated.

 

 

Can't wait to get back to 100% though, then finally I might be able to start putting some weight back on, I've dropped from 85kg (187lbs) to 70kg (154lbs) since having all these food intolerances. It really sucks.

Hope you feel better soon.  The elimination diet is a good idea.  My boyfriend has not only celiac disease but multiple food allergies so it can be a challenge.

[greenbeanie]

Have you tried reducing sulfites in your diet? I have also reacted to most of the foods you mentioned, with worsening symptoms for decades. My daughter has celiac and I had so many autoimmune symptoms that both my GI doctor and I were shocked that my celiac tests came back negative. I've been gluten free for six months now and I feel better than I ever have in my life, with 30 years of rashes and 20 years of diarrhea gone, plus balance and coordination problems (which I'd been hospitalized for before) improving greatly. However, I still have clear allergic-type reactions to virtually all sauces and condiments, salad dressings, anything containing even a tiny amount of vinegar, chocolate, onions and garlic, most alcohol, dried fruit, and mashed potatoes at restaurants. I've had several doctors look at this long list of foods and tell me they have nothing in common, until recently an allergist noticed that they're all high in sulfites! It was a total revelation. I eat very little processed food, and I'd known sulfites were preservatives but had dismissed the possibility that sulfites were the problem before because I didn't realize that they occurred naturally in vinegars, onions, and garlic - which explains why I was reacting to homemade soups and salad dressings too. It also explains why I have trouble with restaurant mashed potatoes, where sulfites are often added to preserve their color, whereas mashed potatoes I make at home are fine. And it explains why I can eat dark raisins with no problem but get sick from other dried fruits...and the list goes on. Anyhow, if I totally avoid all foods high in sulfites PLUS anything with gluten, I have no symptoms at all! It does lead to a very restrictive diet, though, since there are small amounts of onion, garlic, and vinegar in so many foods. I pretty much avoid anything with "natural flavorings" even if those flavorings are gluten free.

Avoiding sulfites for a week or two might be worth a try if this sounds familiar. I thought for a while that I must be reacting to gluten cc, and I am very sensitive to that too (I've invariably been able to trace episodes of balance problems and night sweats back to something I ate that was processed on shared equipment with wheat), but for me the sulfite issue was a separate problem. My reaction to sulfites is different - coughing, runny nose, then steatorrhea. My allergist said there's no reliable test for sulfite sensitivity, and it's not necessarily a true allergy, but it feels just as bad. There is a known connection between sulfite sensitivity and asthma, but I don't have asthma, so go figure. Anyhow, reducing naturally-occurring sulfites in addition to eliminating gluten has been wonderful (though very inconvenient). I'm hoping I can add some onions and garlic back in after a while, though - I sure do miss the flavor!

[NoGlutenCooties]

Last night I thought I would try something new and tried a gluten free, nut free, dairy free berry bar made with corn, rice, and soy. And 2 hours after eating it I started feeling unwell, I went to bed, and now all day today I've felt really sick in the stomach. The only thing I can think of is that maybe I'm allergic to soy as well. It's really strange.

 

It seems that quite a few folks cannot tolerate corn very well either.  It is also really hard to digest.

I know I don't do well with soy - not an allergic reaction, it just doesn't sit well with me at all.

One other thing to consider... how much sugar was in the berry bar?  Any chemical additives, flavorings, or sugar-substitutes?  You may be particularly sensitive to these things as you're trying to heal.

[dilettantesteph]

And the rice milk which makes me sick in the stomach is the vitasoy rice milk: "Ingredient Declaration: Filtered water, whole brown rice (min. 13%), sunflower oil, calcium phosphate, sea salt". Open Original Shared Link

 

 

I see that vitasoy makes an oat milk product.  Around 10% of celiacs are also sensitive to oats.  If you are one, than you could be responding to oat contamination from shared facilities.

 

Not eating food that makes you sick is the thing to do no matter what the reason might be, cross reactivity,  additional intolerance, or cross contamination.  Just keep track and don't eat stuff that makes you sick.  Watch our for the delay effect.  Sometimes it can take a week before you notice the reaction.  Sometimes it starts out small and then builds up.  Sometimes you have to look at something that you added a week ago.  It really helps to write it down.

[bartfull]

Nice to see everyone being open to different ideas.  I didn't say I was definitely correct just that it was a possible explanation.  I know people with severe food reactions in addition to celiac disease.  There is adequate support for cross reactivity - both for and against.  I believe when it comes to food allergies and celiac disease that it is better to be open minded and explore possible explanations when someone is not getting better.  As I said before people are entitled to their opinions.  I am not trying to make the diet "hard" just offer possible things to consider for someone having a difficult time.  Seriously didn't expect such narrow mindnessness from fellow celiacs.

Bella, it's not narrow-mindedness, it's wanting to stick to the facts. All of the leading celiac researchers have stated that there is absolutely NO EVIDENCE that cross-reactivity exists. ALL of them. While a lot of us do have additional intolerances, they do not damage our villi, and if we were having cross-reations, they would. I would much rather heed the advice of the TRUE experts who have devoted their lives to researching this disease than those folks who have something to gain from their "theory". Almost all of the (mis-)information available on the internet about cross-reactivity come from people who are selling something. And because it has been all over the internet lately, the real experts HAVE done studies that have PROVEN the whole idea is false.

 

I think all of us "old timers" here get a little edgy about it because we don't want to see any newbies being mislead into giving up things they don't have to. We all recieved so much help when we first came here and we stuck around to pass it forward. Every time someone suggests cross-reactivity is a real thing, they are doing a real disservice to all of us here. I fear there may be SOME newbies who might read it and think the diet is just too hard, so they give up. Let's just stick to the things that are PROVEN, give help and advice where we can, and then sit back and enjoy the "I feel better!" posts these folks will be making soon.

[Bella11]

Bella, it's not narrow-mindedness, it's wanting to stick to the facts. All of the leading celiac researchers have stated that there is absolutely NO EVIDENCE that cross-reactivity exists. ALL of them. While a lot of us do have additional intolerances, they do not damage our villi, and if we were having cross-reations, they would. I would much rather heed the advice of the TRUE experts who have devoted their lives to researching this disease than those folks who have something to gain from their "theory". Almost all of the (mis-)information available on the internet about cross-reactivity come from people who are selling something. And because it has been all over the internet lately, the real experts HAVE done studies that have PROVEN the whole idea is false.

 

I think all of us "old timers" here get a little edgy about it because we don't want to see any newbies being mislead into giving up things they don't have to. We all recieved so much help when we first came here and we stuck around to pass it forward. Every time someone suggests cross-reactivity is a real thing, they are doing a real disservice to all of us here. I fear there may be SOME newbies who might read it and think the diet is just too hard, so they give up. Let's just stick to the things that are PROVEN, give help and advice where we can, and then sit back and enjoy the "I feel better!" posts these folks will be making soon.

I have given some examples showing where I got my information from.  As opinion is divided as to whether or not it is an issue I was simply suggesting it as something to consider.  I think when it comes to nutrition - as we are learning more and more all the time and NO ONE has all the answers - it would be nice if people can keep open minded and at the very least agree to disagree.  It has not been proven that cross reactivity either exists.  I came to this forum for support and to learn from others but it seems all I'm getting is narrow mindedness and not being allowed an opinion.

[kareng]

 It has not been proven that cross reactivity either exists.  .

Exactly! Which why we don't usually suggest it to new members looking for advice and facts.

Someone has started a thread to discuss Cross- reactivity theory. Perhaps you would find that a good thread to discuss these theories?

[bartfull]

There's no proof that there are no little green men on Mars, so should we all keep and "open mind" about that too? Or more to the point, should we tell people who are hearing voices in their heads that it just might be the little green men on Mars who are sending them messages? Don't you think it would be kinder and more productive if we sent them to a psychiatrist and got them on medication instead?

 

We need to be RESPONSIBLE. Telling people to consider something that has no scientific basis - NONE - is not being responsible, it is being reckless with OTHER PEOPLE'S health.

 

Rejecting this crackpot theory is not being narrow-minded, it is using common sense. This "theory" should NEVER even be suggested to newbies, any more than the little green men "theory" should be suggested to schizophrenics. It is cruel, it is dangerous, and it is wrong.

[Timguy86]

I don't think it's oats, because I drink oat milk and seem fine afterwards.

 

There's lots for me to keep in mind from here on out. I think it's just a matter of eliminating things and then re-introducing them one by one to see what gives me a reaction.

 

Is it worth getting a colonoscopy done to check to see if there are any other issues with my digestive system if my symptoms persist even after being careful with my diet?

[notme]

you don't do any digesting in your colon.  i am thinking of getting one, but i am old enough for it to be a good idea to monitor. 

 

how about:  did you de-contaminate your kitchen?  replace your (glutened) cutting boards, colanders, strainers, scratched plastic/wooden spoons, scratched non-stick pans, etc?  read the newbie 101 thread in the coping section, there is alot of good advice in there. 

 

also, in keeping your food journal, realize that some of us have a delayed reaction to a gluten hit.  mine will creep in (starts with headache and fatigue, etc then progresses on) but takes 24-48 hours to be 'full-on'  so, something to think about.

[dilettantesteph]

I think it's just a matter of eliminating things and then re-introducing them one by one to see what gives me a reaction.

 

That's what works for me.  It's a good idea to keep track by writing it down.  I get lazy and it can be hard to remember sometimes.  I wait a week before adding the next thing because it can take that long for a reaction to get bad enough to notice.

[Timguy86]

Turns out the thing that was still making me feel a little sick was soy. I've cut that out and now I'm feeling much better.  

 

So now the list is: no gluten, no dairy, no soy, and I'm not sure about nuts... I suspect they don't agree with me either. It limits my food, but it's pretty awesome feeling almost 100% again now.