Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Ohter Food Sensitivities


Guest Happynwgal2

Recommended Posts

Guest Happynwgal2

I have read several postings lately about people who have gone off gluten, but who still are having symptoms as if they were still eating gluten.

After I went off gluten, it took months before I had discovered all the other foods I am also sensitive to. The list is long, but now that I have cut out dairy, peanut butter, yeast, several kinds of veg's like broccoli and beans (produce lot of gas - and I get an achy stomach), mushrooms and most kinds of fruit, candy - I ate gummy bears for treats, but found the sugar made me very ill, so I have now cut back to almost no sugar.

What can I eat? Rice, many veg's, bananas, avocados, meat, poultry, fish, quinoa, and much else. I drink water and almond milk, and eat almond butter. I also take a vitamin and calcium supplement, plus another supplement that my naturopath recommended.

If you continue to have symptoms after you stop eating gluten, some other food is likely giving you similar problems to gluten. This is not uncommon for Celiac patients. Try to make a connection to what you eat and how you feel afterwards. If I get sick a short time after I eat (with sick I mean stomach ache, gas, bloating, and generally just feeling lousy) I can usually figure out when I ate the offending food and what it was. I know pretty much everything that makes me feel sick by now, thank goodness. The last offender I just found a few weeks ago: peanut butter.

Eventually I may go through more testing and find out why I get sick from so many non-gluten foods, but for now, I am content to know that I can just stay away from them.

HOWEVER, some days I would love a "normal" meal - thanksgiving is coming up and it will be an interesting challenge to make food for myself and the family that will please us all - and make nobody sick. :P

So this Celiac stuff is more involved than I thought to start with, but when I find myself feeling good and healthy several days in a row, and realize that this is possible all the time, it is SO worth the extra effort and the avoidance of a lot of tasty food that I can no longer eat...

I just like to feel good and be healthy! :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

My experience was much like yours. It took a while to figure it all out, but after 2 years, I'm feeling so much better.

I agree that the gluten-free diet coupled with the other intolerances are limiting--but feeling good most of the time (instead of the other way around) is so worth it.

Thanks :)

Sugarmag Newbie

That was me as well. I was gluten free for about a year, and still had some symptoms. But then all of a sudden, I was sick all the time again. I figured out it was soy. Then I was soy free for a bit, and still sick, and having rashes all the time. Then I cut out the casein, and things have been great ever since!

I definitely miss the convenience of eating on the go. Being gluten free wasn't too hard for me, you could go anywhere and get a veggie salad still. But with soy, almost all dressing has soy in it, so it's been really hard for me to eat out. :( But then I think of how great I feel, and realize it's all worth it!

Glutenfreefamily Enthusiast

I know how you feel. I cannot eat poultry, beef, pork, oils, nuts, seeds, dairy, salt, sugar (yeah this one sucks) no berries, no melons, and no grapes, no soy, and of course gluten ;)

Boring as heck especially when I still fix the other foods except gluten for my family and they limit dairy. You do get use to it after awhile but Im still bitter about it kinda <_< the only bonus its hard to have a weight problem when you eat this healthy ;)

jewi0008 Contributor
I know how you feel. I cannot eat poultry, beef, pork, oils, nuts, seeds, dairy, salt, sugar (yeah this one sucks) no berries, no melons, and no grapes, no soy, and of course gluten ;)

Boring as heck especially when I still fix the other foods except gluten for my family and they limit dairy. You do get use to it after awhile but Im still bitter about it kinda <_< the only bonus its hard to have a weight problem when you eat this healthy ;)

How did you discover that you cannot have all of that food? I cannot figure mine out!!! And I keep a very, very precise food log.

Aligray Apprentice

Hello! My name is frustrated...nice to meet u :lol:

Just kidding ;) But seriously, I had NO idea until a few days ago that i could develop more intolerances. I have been sick for two months and it is getting worse. I am going to eliminate casein/dairy first. I think i have to limit sugar too! I am so hoping i can still tolerate soy as it is in everything! Oh! and tomatos are bothering me too!

jewi0008 Contributor
Hello! My name is frustrated...nice to meet u :lol:

Just kidding ;) But seriously, I had NO idea until a few days ago that i could develop more intolerances. I have been sick for two months and it is getting worse. I am going to eliminate casein/dairy first. I think i have to limit sugar too! I am so hoping i can still tolerate soy as it is in everything! Oh! and tomatos are bothering me too!

What are your symptoms? HOw did you know? How did you know what to cut? Yeah...my name is FRUSTRATED!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Guest Happynwgal2
What are your symptoms? HOw did you know? How did you know what to cut? Yeah...my name is FRUSTRATED!

Hi FRUSTRATED! :)

It is not easy to find what you are also sensitive to, and I cannot tell you exactly how I did it. Over the last year, I have paid close attention to what I am eating; my diet is so simple that it made it easier to figure out what made me sick, or bloated or just feeling unwell. For example, after eating my home made pancakes made from "safe" grains, I felt like I had a rock in my stomach, and just did not feel good. So I now only use quinoa, which I love instead of rice (I CAN eat rice, but quinoa had double the protein), and quinoa flakes for a tasty hot breakfast cereal.

Every time I ate cheese, I got sick: boating, gas, painful cramping. Every time I drank milk (which I love), I felt unwell.

My diet has been very basic for the last year; I seldom eat already made meals or foods, even those that say "gluten free". Many of them still have ingredients that I wasn't sure of, so by knowing what I could eat, I slowly weeded out what I couldn't eat. The last one was peanut butter just a few weeks ago.

My naturopath has also been helpful. If you can pay for your own visits to a naturopath, or if you are lucky enough to have insurance that covers naturopath visits, go talk with one in your area. It is amazing how differently they approach Celiac than conventional doctors do.

Perhaps I have an advantage to many on here: I have been sick for over 50 years, since I was a little girl, and was desperate to find what foods made me so sick. Eating to me is still only a necessity; seldom do I eat to enjoy myself because eating has never been associated with pleasure to me. Sure, a few moments of pleasure because I loved the taste, but then, inevitably, the pain followed. I still hate cooking, but must do more because I need variety.

I must admit that eating is slowly becoming more pleasurable; I can now eat without getting sick. In fact, during the past few weeks I have been sick only a couple of times, and that was because I ate something I shouldn't have. Born and raised in Norway, I love what is called GJEITOST, or goat cheese - it's not the real goat cheese, but a mix between goat milk and cows milk; I love the stuff, and it is my favorite "treat". But I get so sick from it, and a week or so ago, I said: sick or not, I am going to eat it, and paid dearly for it... :angry::P

So the short answer to how do you find out: patience, and eating very simple foods so that you can easier figure out what you react to. It sounds boring and difficult, but the end result will be that you will know for sure what you can and cannot eat.

And once you know what you CAN eat, you can start enjoying cooking - and eating - again, if you enjoy cooking - and eating!!! :)

Aligray Apprentice

Happy! That is wonderful advice! I completely agree!

Jewi- Well, for 7 weeks i have beem sick and everyday i say the same things...what on earth did i get ahold of.....why am i still sick....yada yada....

But then a few days ago i get on here and start reading that i can develop more intolerances. Well, that certainly makes sense but boy does it make me frustrated. So for 3 days i have read and racked my brain. And so far i have come up with dairy makes me feel terrible. and tomatos are giving me heartburn. And i also read about oxylates and that may be it too. So im going to cut them out. I ate ice cream yesterday as a test and i was sooo sick.

Here are my symptoms:

bloating

diarrhea

constipation too

stomach cramps

itching

beautiful stomach noises

muscle pain again

The GI discomfort is the biggest problem right no1.

Oh! And for a couple months now I have been saying that can cokes and fountain cokes have been bothering me but yet they are supposed to be gluten free. I was reading on a casein free website last nite that caramal color has a MILK derivative in it!!!! Oh my goodness! So my devastated heart is still trying to deal w that! But i needed to kick them anyway! Besides being terrible for me, they make me sick!

Good luck!

-Ali :)

Guest Happynwgal2
Happy! That is wonderful advice! I completely agree!

Jewi- Well, for 7 weeks i have beem sick and everyday i say the same things...what on earth did i get ahold of.....why am i still sick....yada yada....

But then a few days ago i get on here and start reading that i can develop more intolerances. Well, that certainly makes sense but boy does it make me frustrated. So for 3 days i have read and racked my brain. And so far i have come up with dairy makes me feel terrible. and tomatos are giving me heartburn. And i also read about oxylates and that may be it too. So im going to cut them out. I ate ice cream yesterday as a test and i was sooo sick.

Here are my symptoms:

bloating

diarrhea

constipation too

stomach cramps

itching

beautiful stomach noises

muscle pain again

The GI discomfort is the biggest problem right no1.

Oh! And for a couple months now I have been saying that can cokes and fountain cokes have been bothering me but yet they are supposed to be gluten free. I was reading on a casein free website last nite that caramal color has a MILK derivative in it!!!! Oh my goodness! So my devastated heart is still trying to deal w that! But i needed to kick them anyway! Besides being terrible for me, they make me sick!

Good luck!

-Ali :)

Hi Ali,

I am glad you are finding out what is making you so sick. And I am glad you told me that caramel flavor/color has some milk stuff in it. I did not know that, but perhaps it makes sense somehow... :P

Keep it up - just don't give up until you feel better. I am still working on it, but have a lot more good days than bad days... Now my bad days are mostly when I KNOW I am eating something (NOT gluten, though!) that will make me sick... Dumb to do, but I am only human.... And there are just some goodies that I miss... However, my side stepping happens less and less frequently as I learn about and find alternatives, especially to satisfy my sweet tooth... B)

I have to go to work, so more later!

jewi0008 Contributor
Hi Ali,

I am glad you are finding out what is making you so sick. And I am glad you told me that caramel flavor/color has some milk stuff in it. I did not know that, but perhaps it makes sense somehow... :P

Keep it up - just don't give up until you feel better. I am still working on it, but have a lot more good days than bad days... Now my bad days are mostly when I KNOW I am eating something (NOT gluten, though!) that will make me sick... Dumb to do, but I am only human.... And there are just some goodies that I miss... However, my side stepping happens less and less frequently as I learn about and find alternatives, especially to satisfy my sweet tooth... B)

I have to go to work, so more later!

Thank you all for your advice. What will happen to me is either C or D. On top of it I usually suffer from EXTREME fatigue. But typically it only lasts a day. Saturdays are my days when I don't do strict dieting....and for some reason I always "mess up gluten and/or else-wise" on those days. I hate it, but because I eat so many different things on Saturdays (ie. soy, sugar, ect.) I can never pin what or why it is that on the following Wednesday or Thursday I'm miserable.

I get dry and irritated mouth...sides of my tongue and roof of my mouth. It only goes aways sometimes, but because I know I have delayed reactions I, for the life of me, cannot pin it on any food or day of the week it came from.

It's not fun to live this way, that's for sure.

And by the way...I gave up coke and dark-colored soda a long time ago because I reacted immediately to it....I would get like a lump in my throat and could barely swallow. I really try to stay away from anything caramel. I wonder what else relates to the coke and/or caramel that I really need to avoid?!

Guest Happynwgal2

I get dry and irritated mouth...sides of my tongue and roof of my mouth. It only goes aways sometimes, but because I know I have delayed reactions I, for the life of me, cannot pin it on any food or day of the week it came from.

Wow, that sounds pretty bad - and makes it difficult to figure out what it is you shouldn't be eating. I am afraid you've got me stumped on how to fix that one... Usually for me, the reaction comes within minutes or two-three hours, so it is not that difficult to figure out what the offending food is.

Perhaps there are some answers to your symptoms somewhere here on this web site? I never have the kinds of symptoms you describe in your mouth.

Keep searching, though, and you will eventually figure it out.

(Just came home from work, and I just can't think to write anything else to encourage you.... -_- )

codetalker Contributor
How did you discover that you cannot have all of that food? I cannot figure mine out!!! And I keep a very, very precise food log.

Having a food log will help a lot.

If it isn't clear which foods are causing a problem, the trick is to gradually eliminate one item at a time from your diet. This is harder if your diet contains lots of processed food. For example, soy and/or corn are in just about everything. Nonetheless, the idea would be to keep simplifying your diet until the problems stop. Then, gradually add one item back at a time and see which one was the last item added when the problem happened again.

When people post about additional intolerances, the most frequently mentioned items are soy, dairy, corn, grains, nuts, eggs. These would be a good place to start.

It has taken two years to determine my current list of additional intolerances. It is a very slow and tedious process.

jewi0008 Contributor
Having a food log will help a lot.

If it isn't clear which foods are causing a problem, the trick is to gradually eliminate one item at a time from your diet. This is harder if your diet contains lots of processed food. For example, soy and/or corn are in just about everything. Nonetheless, the idea would be to keep simplifying your diet until the problems stop. Then, gradually add one item back at a time and see which one was the last item added when the problem happened again.

When people post about additional intolerances, the most frequently mentioned items are soy, dairy, corn, grains, nuts, eggs. These would be a good place to start.

It has taken two years to determine my current list of additional intolerances. It is a very slow and tedious process.

I've decided NO SOY this week...starting today. I had to cut the tofu and the almond milk (there is soy lecithin in the almond milk) Anyways, this week here will be my diet:

1. Rice milk

2. coffee

3. Xlean turkey plain

4. plain grilled chix

5. apples

6. lettuce

7. quinoa

8. tea

THE END. How does that sound? We'll see what happens!

emcmaster Collaborator

I can't have corn (especially xanthan gum), broccoli, cane sugar (but I cheat sometimes), many legumes (I cheat on those too), sunflower seeds/sunflower butter, and eggplant. I "reacted" to more on the Lame Advertisement test but those seem to be the only ones that bother me enough to cut them out.

codetalker Contributor
I've decided NO SOY this week...starting today. I had to cut the tofu and the almond milk (there is soy lecithin in the almond milk)

Avoiding soy is tough. When I was trying to eliminate it, I ran into one source that surprised me. Apparently, mono- and diglycerides can be soy-based. I had a reaction after eating some ice cream. I went to the manfacturer's web site to check whether ingredients had changed. The ingredient list was the same as what was on the carton and there was no apparent soy. Some of the ingredients were clickable. When I clicked mono- and diglycerides, a little window popped up that said:

"mono and diglycerides:

These are naturally-occurring emulsifiers obtained from the fat of soybeans and vegetable oils. "

Best of luck this week. I hope you get a handle on the source of the problem.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Hmart replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

    2. - trents replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

    3. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      10

      Help I’m cross contaminating myself,

    4. - DebJ14 replied to Jhona's topic in Introduce Yourself / Share Stuff
      30

      Does anyone here also have Afib

    5. - Hmart posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,925
    • Most Online (within 30 mins)
      7,748

    Linda Stark
    Newest Member
    Linda Stark
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
    • DebJ14
      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
    • Hmart
      The symptoms that led to my diagnosis were stomach pain, diarrhea, nausea, body/nerve tingling and burning and chills. It went away after about four days but led me to a gastro who did an upper endo and found I had marsh 3b. I did the blood test for celiac and it came back negative.  I have gone gluten free. In week 1 I had a flare-up that was similar to my original symptoms. I got more careful/serious. Now at the end of week 2 I had another flare-up. These symptoms seem to get more intense. My questions:  1. How do I know if I have celiac and not something else? 2. Are these symptoms what others experience from gluten?  When I have a flare-up it’s completely debilitating. Can’t sleep, can’t eat, can’t move. Body just shakes. I have lost 10 pounds since going gluten free in the last two weeks.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.