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

Anyone Else Here Intolerant To Alot More Than Gluten?


OneScrewLoose

Recommended Posts

OneScrewLoose Rookie

Through testing at enterolab and process of elimination, I found out I'm not only intolerant to gluten, but also dairy, soy, eggs and nuts/peanuts. Although I can eat eggs in baked goods and small amounts of tree nuts, it generally sucks. I can't even eat the gluten free products at most places cause they have that other poop in it.


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



Celiac.com Sponsor (A8-M):



MELINE Enthusiast

Hello

well many celiacs cannot tolerate diary / casein until thier intestine is healed. this is normal. If you read my signature you will see that you are not the only one with many intolerances. When your intestine is healed, you will be able to re-introduce these ingredients . Me, after 1 year of gluten-free diet, I ate today chocolate and grapes. 1 year back, I would have awful stomach pain. Now, I am feeling great. So, just be patient and follow that gluten-free diet.

ShayFL Enthusiast

Yes, many of us have multiple intolerances. I can eat a little bit of nightshade now (chili spice and red pepper). Before I could not. As I get better, I will add more back in.

JNBunnie1 Community Regular

Y'know I figured out peanuts are a problem for me, and that was harder for me to give up than gluten! You know why? Peanut butter ice cream. I'm addicted. At least I found sunbutter, maybe I can try to make ice cream with it. I got off lucky though, thus far those are my only two things.

VioletBlue Contributor

You're not alone. My list seems to grow daily. It sucks, this is true. Hang in there. You may be able to reintroduce some things later and you may not. I personally haven't had a lot of luck with that, but I remain hopeful.

jerseyangel Proficient

I have a list of several other intolerances--all discovered after going on the gluten-free diet. I did an elimination diet with my allergist/immunologist.

After completely avoiding the foods for over 2 years, I have been able to add rice, eggs (in moderation) and corn back. I recently tried legume again, and had possibly the worst delayed allergy attack I've ever had--it was clear that I can not add those back in!

purple Community Regular
Yes, many of us have multiple intolerances. I can eat a little bit of nightshade now (chili spice and red pepper). Before I could not. As I get better, I will add more back in.

YAY!!! I am so glad for you Shay!! :)


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

Thanks!!....but I am not going to push my luck and eat tons of chili or red pepper. Just now and again.

sickchick Community Regular

I miss the chilis, B)

OneScrewLoose Rookie

I don't know about reintroducing caesin or soy, both of these turned up on the enterolab test. Isn't that a genetic thing?

Also, I am using L-Glutamine to help heal my gut. Does anyone else do this?

mftnchn Explorer

No, casein and soy are not genetic issues, Enterolab tests for intolerance, doesn't tell you why you are intolerant.

Most of the things you list are all harder to digest foods. That could be a clue.

Seems like it takes time and trial and error to figure things out. I went strictly Gluten-free Casein-free, then SF, plus avoided peanut, was corn/sugar light, eliminated coconut, most legumes, etc etc. But now it appears the main problem was that damage to the intestinal villi damaged my ability to produce digestive enzymes and I cannot break down carbs. Following SCD is REALLY helping. I have seen dramatic improvement like many people report going gluten-free.

OneScrewLoose Rookie
No, casein and soy are not genetic issues, Enterolab tests for intolerance, doesn't tell you why you are intolerant.

Most of the things you list are all harder to digest foods. That could be a clue.

Seems like it takes time and trial and error to figure things out. I went strictly Gluten-free Casein-free, then SF, plus avoided peanut, was corn/sugar light, eliminated coconut, most legumes, etc etc. But now it appears the main problem was that damage to the intestinal villi damaged my ability to produce digestive enzymes and I cannot break down carbs. Following SCD is REALLY helping. I have seen dramatic improvement like many people report going gluten-free.

That makes me quite hopeful. :)

mftnchn Explorer

I used L glutamine and many many more things to help heal but it didn't work. I haven't tested again since starting SCD, probably will next winter. But symptom wise I am pretty sure I am now on the right track.

  • 2 weeks later...
Amber M Explorer
I have a list of several other intolerances--all discovered after going on the gluten-free diet. I did an elimination diet with my allergist/immunologist.

After completely avoiding the foods for over 2 years, I have been able to add rice, eggs (in moderation) and corn back. I recently tried legume again, and had possibly the worst delayed allergy attack I've ever had--it was clear that I can not add those back in!

jerseyangel, I have to ask, I have been allergic to lugume for years, and recently am gluten free. My allergist tested the lugumes again and it came back negative. I tried 2 bites of beans last week to try it, and got sick with what appeared to be "gluten symptoms". (I'm quite sure I did not eat gluten) What do you mean when you say "delayed" attack? What were the symptoms? Thanks, Amber M

mysty Newbie
jerseyangel, I have to ask, I have been allergic to lugume for years, and recently am gluten free. My allergist tested the lugumes again and it came back negative. I tried 2 bites of beans last week to try it, and got sick with what appeared to be "gluten symptoms". (I'm quite sure I did not eat gluten) What do you mean when you say "delayed" attack? What were the symptoms? Thanks, Amber M

hiii there...i just thought i would add my 2 cents ..i have celiac disease...and when ppl say delayed allergic attacks...they usually mean u might have an allergic symptom similar to or very close to a life threatening episode either in a few minutes or more than 24 hrs after being exposed to a food.

i can attest to these attacks personally....after having been in the emerg twice after a few 24 hr delayed reactions to rice. (yep...rice lol) the doctors have put me in the severe auto immune category...lol i would have to say i am confusing to most of the physicians i meet lol. when i eat or touch a food i shouldnt have..its from 5 seconds to 24 hrs that i might react. between myself and a few specialists i now know if a food is related to the grass family...it cant go in my mouth without making me sick.

the funny thing is ...i didnt drink milk most of my life...and now after eliminating all the grains and starchs out of my diet i can drink milk with no problems ...which is great due to the health benefits of calcium etc.

one of the main staples of my diet is whey protein powder plain...with either water or milk added..a little maple syrup and some frozen fruit...plus a few vitamins .

i know i definitely cant eat legumes...i loved soy beans...but they seem to affect me the same as wheat.

i occassionally eat corn on the cob...like once a yr perhaps..but suffer a severe migraine afterwards ...so its a treat i pay for lol.

also i have to ask u....where did u get the beans u tried? were they in a can? or just beans u soaked and cooked urself..because most products already prepared can easily be contaminated with gluten and they dont have to tell u that on the label ...even tho alot of companies are now..thank goodness.

did u use a soup flavour that has gluten in it? or soup mix...so check all those...but if u reacted to beans in the past...and ur body has made antibodies...its unlikely u can ever eat them without reacting in some way.

i remember about 4 yrs ago i figured it had been 20 yrs since i hadnt consumed chocolate...so it should be safe for me to try...so i put a little sliver on my tongue..and i was green and couldnt stand in about 4 mins....lucky for me my daughter was there...and i almost put a chunk in my mouth lol...most of my reactions are under 4 mins ...so choc is on my never-to-eat list ...darn it all..lol

mysty Newbie
I don't know about reintroducing caesin or soy, both of these turned up on the enterolab test. Isn't that a genetic thing?

Also, I am using L-Glutamine to help heal my gut. Does anyone else do this?

i find that adding glutamine in a concentrated form just brought on alot of migraines for me...similar to eating MSG...since glutamine builds up in the brain...so be careful with that if ur a migraine sufferer. i do take protein isolate most every day....but that seems to be fine since the aminos are in a group. there has been quite a bit of research showing healthy gut linings were rich in glutamine...but i havent seen a ton of research proving that adding it to ur diets would increase the lining...but it cant hurt i suppose.

i would have to suggest u take a daily dose of healthy intestinal microbes (probiotics) ..since if u want a healthy gut lining to survive u need the bacteria there to protect it.....make sure u ask the retailer if its gluten and dairy-free.

make sure if ur reintroducing casein that its been at least 2 yrs after totally elminating gluten from ur diet.

ArtGirl Enthusiast
I can't even eat the gluten free products at most places cause they have that other poop in it.

I can certainly relate to that. I cannot buy any gluten free mixes because they all have at least one starch in them that I can't tolerate. And forget the lovely frozen gluten-free breads, pies or donuts. I am, however, finally finding some recipes for baked goods that have no egg and are actually good. But it's taken me a year of experimenting and tweaking recipes to get to this point.

My other sensitivities are not full-blown allergies. And the reactions are usually delayed until the next day. Some make my skin itch, but most give me intestinal troubles similar to gluten symptoms but not as severe and not lasting as long.

This forum has been a great asset to me. I "live" in the baking forum searching for recipes.

I've also been trying to retrain my brain to thinking...."eat to live" rather than "live to eat". Not there yet, though. But getting better.

Amber M Explorer
hiii there...i just thought i would add my 2 cents ..i have celiac disease...and when ppl say delayed allergic attacks...they usually mean u might have an allergic symptom similar to or very close to a life threatening episode either in a few minutes or more than 24 hrs after being exposed to a food.

i can attest to these attacks personally....after having been in the emerg twice after a few 24 hr delayed reactions to rice. (yep...rice lol) the doctors have put me in the severe auto immune category...lol i would have to say i am confusing to most of the physicians i meet lol. when i eat or touch a food i shouldnt have..its from 5 seconds to 24 hrs that i might react. between myself and a few specialists i now know if a food is related to the grass family...it cant go in my mouth without making me sick.

the funny thing is ...i didnt drink milk most of my life...and now after eliminating all the grains and starchs out of my diet i can drink milk with no problems ...which is great due to the health benefits of calcium etc.

one of the main staples of my diet is whey protein powder plain...with either water or milk added..a little maple syrup and some frozen fruit...plus a few vitamins .

i know i definitely cant eat legumes...i loved soy beans...but they seem to affect me the same as wheat.

i occassionally eat corn on the cob...like once a yr perhaps..but suffer a severe migraine afterwards ...so its a treat i pay for lol.

also i have to ask u....where did u get the beans u tried? were they in a can? or just beans u soaked and cooked urself..because most products already prepared can easily be contaminated with gluten and they dont have to tell u that on the label ...even tho alot of companies are now..thank goodness.

did u use a soup flavour that has gluten in it? or soup mix...so check all those...but if u reacted to beans in the past...and ur body has made antibodies...its unlikely u can ever eat them without reacting in some way.

i remember about 4 yrs ago i figured it had been 20 yrs since i hadnt consumed chocolate...so it should be safe for me to try...so i put a little sliver on my tongue..and i was green and couldnt stand in about 4 mins....lucky for me my daughter was there...and i almost put a chunk in my mouth lol...most of my reactions are under 4 mins ...so choc is on my never-to-eat list ...darn it all..lol

Thanks so much for your response. I had beans that were home made by a friend (2 bites). I did check out her other ingredients and it seems all was gluten free except possibly the pork fat? But I also discovered my gluten free lunch the next day made by a "gluten free" friend, contained soup with broth, a hugh gluten mix, I am sure, so between the 2 days, I was sick for 5 or 6 days following. I also am finding I can not tollerate any of the gluten free breads or brownies, ( as of this week end-not well with stomach) So, it is narrowing down to whole foods and milk. I also think chocolate hasn't been settling well, so off of that lately too. I am trying to keep a good attitude. I am scheduled next week for the endoscope. I have been gluten free for over a 5 weeks now, other that the "slip" so I suspect it may come back negative but I don't even care. I just want to make sure nothing more severe is going on digestively because I have so many stomach problems right now. My bowels are still screwed up too. But, the twitching, numbness, back ache and imbalance are improving a lot. I can not eat wheat, I have done the elimination and re-intro. twice, and I get sick imediately, so I know I have to stay gluten free to feel good.

I do get discouraged at the fact that the tests seem so inreliable. I don't think my insurance will pay for gene testing, which doesn't sound that great since U.S. only recongnizes 2 of 7 genes!!! Holy Bananas, this sucks!

mysty Newbie
Thanks so much for your response. I had beans that were home made by a friend (2 bites). I did check out her other ingredients and it seems all was gluten free except possibly the pork fat? But I also discovered my gluten free lunch the next day made by a "gluten free" friend, contained soup with broth, a hugh gluten mix, I am sure, so between the 2 days, I was sick for 5 or 6 days following. I also am finding I can not tollerate any of the gluten free breads or brownies, ( as of this week end-not well with stomach) So, it is narrowing down to whole foods and milk. I also think chocolate hasn't been settling well, so off of that lately too. I am trying to keep a good attitude. I am scheduled next week for the endoscope. I have been gluten free for over a 5 weeks now, other that the "slip" so I suspect it may come back negative but I don't even care. I just want to make sure nothing more severe is going on digestively because I have so many stomach problems right now. My bowels are still screwed up too. But, the twitching, numbness, back ache and imbalance are improving a lot. I can not eat wheat, I have done the elimination and re-intro. twice, and I get sick imediately, so I know I have to stay gluten free to feel good.

I do get discouraged at the fact that the tests seem so inreliable. I don't think my insurance will pay for gene testing, which doesn't sound that great since U.S. only recongnizes 2 of 7 genes!!! Holy Bananas, this sucks!

aww dont get too discouraged..it gets MUCH better with time hehe:)

in the long run u end up being ur own doctor and its pretty funny because the majority of doctors dont really care to get into depth with a celiac or anyone else with a chronic disease.

if u accidentally get food into ur tummy that doesnt fit there...u most likely will feel sick for a week or so but as ur body heals ...u get better faster.... always have a special diet for those times...simple foods and no new foods..and maybe a colonic to cleanse out the bad stuff and massage the gut lining to relieve the vascular congestion.

it is pretty frustrating to have no reliable testing ...but the endoscope is good if they check u out carefully to rule out any other problems...dont forget gluten can remain in ur system for about 6 months...so even if u have been gluten-free..u can have relapses with no cheating on ur diet.

i hope ur intestinal tract recovers to its full extent also...thats really the only thing that bothers me the most...i wish i could get some nerve transplants lol

  • 2 weeks later...
whitball Explorer

I have been having problems with rice and corn. Does this mean that eating both can cause the same damage to the intestine as gluten?

Mtndog Collaborator

I think you'll find a lot of us who, for different reasons, are intolerant of more than gluten. When I first went gluten-free three years ago, I couldn't tolerate dairy either. At all.

About a year in, I discovered I couldn't tolerate legumes either (bye bye peanut butter :( Now I like sun butter better though!).

In the last year or so, I can tolerate small amounts of occasional dairy and legumes. I purposely stay away from anything with soybean oil because it didn't sit well with me in the past.

jerseyangel Proficient
jerseyangel, I have to ask, I have been allergic to lugume for years, and recently am gluten free. My allergist tested the lugumes again and it came back negative. I tried 2 bites of beans last week to try it, and got sick with what appeared to be "gluten symptoms". (I'm quite sure I did not eat gluten) What do you mean when you say "delayed" attack? What were the symptoms? Thanks, Amber M

Amber, I am so sorry....I somehow missed your question until this morning.

When I say "delayed", for me that means the symptoms began about 2 hours after I ate the crackers that contained legume protein. I was ill for about 24 hours, and then felt better. The reaction I had was worse than a typical gluten reaction for me, stomach-wise--but was over quicker. My symptoms were severe nausea, stomach pain and some D--the nausea being the worst.

The last time I tried legume was several months ago--I had some peas and the same thing happened, only it took longer for the reaction to kick in.

I was skin-tested for many foods, and was negative to all of them--soy and peanuts also, but I don't recall being tested specifically for (all)legumes. (I'll have to check--I still have the test results filed away).

Like Mtndog, I missed peanut butter, but now I love almond butter as much or more :D

DinaB Apprentice

So this is getting very interesting...

I've been on here complaining about my stomach problems and kept asking myself why I haven't gotten any better (gastritis). So, after reading many posts I've decided to remove all grains from my diet and see what happens. Since last Thursday I have not had to take my Bella Donna (anti-spasmodic) at all. I was taking up to three, sometimes four a day. I felt like a zombie by the end of the day and the pain and bloating was still overwhelming. I keep telling myself one day at a time, right?

When you remove all grains from your diet you're always hungry. So I've been snacking on fruits and veggies almost every two hours. Because I have an almond allergy I've stayed away from all nuts for almost one year. All of my delayed allergy symptoms were pretty much the same...severe itching and hives/rash. Now, I have a new symptom which is Eczema. I only get it on my scalp and hairline. Within 24 hrs of me digesting anything related to wheat, eggs, casein, or soy I get eczema. It lasts for 2-3 days and then completely clears up. This is a true tell-tale sign if I've been glutened. Because I'm changing my diet again, I decided to add back in nuts. I started with Cashews and Macadamia nuts. I've always been able to eat them. Well now I can't. I don't understand? I am confused by this whole thing??? I never had a Soy allergy/intolerance, now all of a sudden I can't have soy or any nut for that matter. Is it safe to just live on Meats/Veggies/fruits? I feel like I am getting more intolerances instead of less. I do feel really good giving up the grains, though. I feel like the fog has been lifted and the pain and bloating in my stomach is gone. Is anytone else on the Specific Carbohydrate Diet? I haven't gotten the book yet and don't know how long is safe to be on it. I do feel as though I may have a carb intolerance. Last week I thought it was fruit. After removing the grains and adding back in the fruits I can honestly say it's the grains, of which I was only eating rice and potatoes. Sorry to ramble here, but this gets so frustrating. Getting another allergy test on Thursday...Celiac Gene test on 10/21.

Trying to figure this all out.

mysty Newbie

hi there dina..yes u might feel hungry more often on that specific diet...i happen to be on a similar diet..no grains or nuts whatsoever...no starch unless its the occassional squash or sweet potato...which still gives me diarrea...so i dont eat them much...i do find that adding a plain whey protein isolate with no additives or flavours etc has taken me thru some tough times..and keeps my blood sugar balanced nicely...i was having severe drops to 1.5 glucose till i added a daily protein drink (distilled water, maple syrup for sweetening, 2 tsps whey isolate,2 tsps of whipping cream or organic milk) which i use to swallow my vitamins...B complex(paba free), folic acid,vitamin E,B -12, B2, royal jelly, and L-arginine i also take separately tho on an empty stomach, plus my thyroid pills.

i eat veggies and fruit and meat for the main part... fruits i have to be careful with to not overindulge so i dont end up reacting to them and then it means eliminating it.

i always know when i eat something wrong..the first symptom is extreme itchyness...then i cant think...and my skin will break out in hives all over...then while i detox a horrible migraine for 3 or 4 days which makes life pretty miserable...but that only happens occassionally...im very careful with my diet and what i touch around me...but after a few yrs i have a routine lol

make sure u add a good regime of vitamins u can tolerate so u dont get deficient..watch ur blood sugar to help keep the food cravings down...and dont add any new foods while ur having a reaction..good luck and i hope ur tests help u out too...write back if u need any more help:)

So this is getting very interesting...

I've been on here complaining about my stomach problems and kept asking myself why I haven't gotten any better (gastritis). So, after reading many posts I've decided to remove all grains from my diet and see what happens. Since last Thursday I have not had to take my Bella Donna (anti-spasmodic) at all. I was taking up to three, sometimes four a day. I felt like a zombie by the end of the day and the pain and bloating was still overwhelming. I keep telling myself one day at a time, right?

When you remove all grains from your diet you're always hungry. So I've been snacking on fruits and veggies almost every two hours. Because I have an almond allergy I've stayed away from all nuts for almost one year. All of my delayed allergy symptoms were pretty much the same...severe itching and hives/rash. Now, I have a new symptom which is Eczema. I only get it on my scalp and hairline. Within 24 hrs of me digesting anything related to wheat, eggs, casein, or soy I get eczema. It lasts for 2-3 days and then completely clears up. This is a true tell-tale sign if I've been glutened. Because I'm changing my diet again, I decided to add back in nuts. I started with Cashews and Macadamia nuts. I've always been able to eat them. Well now I can't. I don't understand? I am confused by this whole thing??? I never had a Soy allergy/intolerance, now all of a sudden I can't have soy or any nut for that matter. Is it safe to just live on Meats/Veggies/fruits? I feel like I am getting more intolerances instead of less. I do feel really good giving up the grains, though. I feel like the fog has been lifted and the pain and bloating in my stomach is gone. Is anytone else on the Specific Carbohydrate Diet? I haven't gotten the book yet and don't know how long is safe to be on it. I do feel as though I may have a carb intolerance. Last week I thought it was fruit. After removing the grains and adding back in the fruits I can honestly say it's the grains, of which I was only eating rice and potatoes. Sorry to ramble here, but this gets so frustrating. Getting another allergy test on Thursday...Celiac Gene test on 10/21.

Trying to figure this all out.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,570
    • Most Online (within 30 mins)
      7,748

    lizz Z
    Newest Member
    lizz Z
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
×
×
  • 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.