Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

kenlove

Recommended Posts

kenlove Rising Star

Has anyone read anything on the number of celiacs that develop soy allergies after the celiac? 

After 9 years celiac I seem to have problems everytime with soy products like tofu.

thanks

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



1desperateladysaved Proficient

My functional Medicine Nurse has a blanket celiac diet that excludes Soy for everyone.   However, I do not know the reason for it.

 

D

Link to comment
Share on other sites
cyclinglady Grand Master

Soy is a common allergen. You can develop allergies and intolerances at any time. Perhaps by avoiding it for a while, you can eat it occasionally.

Since I am allergic to milk and nuts, I dread the day that soy starts to bother me. I use a lot of it!

Link to comment
Share on other sites
kenlove Rising Star

same here, I'm celiac and vegan so soy is a major part of what I can have.  Will just have to try to work it out

 

Soy is a common allergen. You can develop allergies and intolerances at any time. Perhaps by avoiding it for a while, you can eat it occasionally.

Since I am allergic to milk and nuts, I dread the day that soy starts to bother me. I use a lot of it!

Link to comment
Share on other sites
Pegleg84 Collaborator

Hi Kenlove,

 

I'm soy-intolerant. It seems to be a common intolerance for Celiacs, though no one really knows why. I also started noticing that tofu and such was bothering me, so cut that, but then any amount of soy bothered me. I get more neurological symptoms on soy: brain fog/dizziness, kind of like being drunk, and it gets my anxiety going. Doesn't affect my gut as much, and doesn't last as long, but it's still hell and I avoid it as much as possible. Even small amounts of soy lecthin will bother me.

My soy problems didn't really kick in until after about 2 years gluten-free (as did dairy).

If you're vegan and have to cut soy, yeah, it's going to be tough. I'd like to eat less meat than I do, but since I can't have soy, and my gut doesn't like when I feed it too many beans/chickpeas/lentils/etc, I really can't cut it completely.

 

In any case, if you're concerned about a soy intolerance/allergy, cut it out for at least a couple weeks, see if you feel better, then add it back and see if you get the same reaction (call it a soy challenge). However, if you think you might have an allergy (which is different from an intolerance) and are having problems breathing/rash/etc, you should get tested for it. (you can test for allergies but not intolerances). Also, they say eating too much unfermented soy isn't good for you anyway, so maybe not a bad idea to cut back on the tofu either way.

 

Good luck! Hope soy doesn't become the bane of your existence, like it is to me

Link to comment
Share on other sites
GFinDC Veteran

I don't know what % of celiacs are soy intolerant Ken.  But soy is one of the top 8 allergens, so it bothers a lot of people in general, not just celiacs.  I was vegetarian for 5 years, so I ate a lot of soy junk (ok products) during that time.  Now I avoid all soy protein, but I can tolerate soy lecithin occasionally.  And I tolerate real meat vs faux meat just fine.

Link to comment
Share on other sites
kenlove Rising Star

Thanks much, I do have to do the soy challenge.  So far the only reaction seems to be  heavy sweating and urination. no soy and it seldom happens unless I have tomato after 4pm.  Thanks much

 

Hi Kenlove,

 

I'm soy-intolerant. It seems to be a common intolerance for Celiacs, though no one really knows why. I also started noticing that tofu and such was bothering me, so cut that, but then any amount of soy bothered me. I get more neurological symptoms on soy: brain fog/dizziness, kind of like being drunk, and it gets my anxiety going. Doesn't affect my gut as much, and doesn't last as long, but it's still hell and I avoid it as much as possible. Even small amounts of soy lecthin will bother me.

My soy problems didn't really kick in until after about 2 years gluten-free (as did dairy).

If you're vegan and have to cut soy, yeah, it's going to be tough. I'd like to eat less meat than I do, but since I can't have soy, and my gut doesn't like when I feed it too many beans/chickpeas/lentils/etc, I really can't cut it completely.

 

In any case, if you're concerned about a soy intolerance/allergy, cut it out for at least a couple weeks, see if you feel better, then add it back and see if you get the same reaction (call it a soy challenge). However, if you think you might have an allergy (which is different from an intolerance) and are having problems breathing/rash/etc, you should get tested for it. (you can test for allergies but not intolerances). Also, they say eating too much unfermented soy isn't good for you anyway, so maybe not a bad idea to cut back on the tofu either way.

 

Good luck! Hope soy doesn't become the bane of your existence, like it is to me

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



kenlove Rising Star

my allergy to animal protein is pretty bad, just tasted my wifes chicken last night and was sick pretty much most of the night with heart trouble. the animal protein throws my heartbeat into a fib and/or a flutter

I don't know what % of celiacs are soy intolerant Ken.  But soy is one of the top 8 allergens, so it bothers a lot of people in general, not just celiacs.  I was vegetarian for 5 years, so I ate a lot of soy junk (ok products) during that time.  Now I avoid all soy protein, but I can tolerate soy lecithin occasionally.  And I tolerate real meat vs faux meat just fine.

Link to comment
Share on other sites
mamaw Community Regular

Hey Ken.... have  you tried  organic  free range  chicken &  grass fed to finish  beef? I'm not  a  vegan but  I find  I tolerate  these  meats well... I would not  eat  any meat  from a grocery store.....

Soy  is  a  problem  for  me in  several  ways...I understand  that  thyroidless  people  should  avoid  soy  like the  plague....

Years  ago  I loved  tofu    but  now  never touch it....

Link to comment
Share on other sites
GFinDC Veteran

my allergy to animal protein is pretty bad, just tasted my wifes chicken last night and was sick pretty much most of the night with heart trouble. the animal protein throws my heartbeat into a fib and/or a flutter

 

Sorry to hear that Ken.  Maybe fish or other types of meat would work?  Soy is bad for people IMHO.  It took me a while to learn that.  But there is plenty of information available about the problems soy causes in the digestive tract.  I just didn't bother to read it until my own soy intolerance popped up.  Dr. Mercola's page on soy has some links to other info on it.

 

Open Original Shared Link

Link to comment
Share on other sites
kenlove Rising Star

i cant handle any meats, my wife made organic chicken the other day and i was up most of hte night from it. Felt like I had that alien growing inside me..gonna stick to fruit until i sort this out and can do a soy challenge

Hey Ken.... have  you tried  organic  free range  chicken &  grass fed to finish  beef? I'm not  a  vegan but  I find  I tolerate  these  meats well... I would not  eat  any meat  from a grocery store.....

Soy  is  a  problem  for  me in  several  ways...I understand  that  thyroidless  people  should  avoid  soy  like the  plague....

Years  ago  I loved  tofu    but  now  never touch it....

Link to comment
Share on other sites
kenlove Rising Star

thanks, i'll check the link, i cant eat any meats without getting heart problems. The stomach acts up but its my heart that goes out of whack when i have any form of animal protein. I was in a clinic for 6 weeks before they figured it out.

Sorry to hear that Ken.  Maybe fish or other types of meat would work?  Soy is bad for people IMHO.  It took me a while to learn that.  But there is plenty of information available about the problems soy causes in the digestive tract.  I just didn't bother to read it until my own soy intolerance popped up.  Dr. Mercola's page on soy has some links to other info on it.

 

Open Original Shared Link

Link to comment
Share on other sites
GFinDC Veteran

Ouch!  6 weeks!  Not so fun and exciting stuff there Ken.  I suppose you've read about the tick borne illness that makes people allergic to red meats?  I think they found it in Texas first.

Link to comment
Share on other sites
kenlove Rising Star

hard not heard about the tick -- guess Texas seems an appropriate place to find it ..

 

Ouch!  6 weeks!  Not so fun and exciting stuff there Ken.  I suppose you've read about the tick borne illness that makes people allergic to red meats?  I think they found it in Texas first.

Link to comment
Share on other sites
GFinDC Veteran

hard not heard about the tick -- guess Texas seems an appropriate place to find it ..

 

 

Here's an article on it Ken.

 

Open Original Shared Link

Link to comment
Share on other sites
kenlove Rising Star

amazing-- they told me mine was from the animal protein molecules scraping the walls of my blood vessels throwing me into A-Fib. 

I think in  almost  5 years since i went vegan I cheated maybe 5 times. Sunday I ate a drumstick form  my wifes chicken -- went into  a fib with a loud pop at 248 am and have problems ever since. See the cardiologist  tomorrow.

 

Here's an article on it Ken.

 

Open Original Shared Link

Link to comment
Share on other sites
GFinDC Veteran

amazing-- they told me mine was from the animal protein molecules scraping the walls of my blood vessels throwing me into A-Fib. 

I think in  almost  5 years since i went vegan I cheated maybe 5 times. Sunday I ate a drumstick form  my wifes chicken -- went into  a fib with a loud pop at 248 am and have problems ever since. See the cardiologist  tomorrow.

I hope the cardio has some good ideas for you Ken.  Personally, I think eating soy leads to irritation in the gut and possible food intolerances.  But that's just a theory of mine.

 

Looks like the tick meat allergy is in Australia too.  So Ken, you tucked into a drumstick and had a reaction at 2 in the morning?  Been to Australia lately?

 

Open Original Shared Link

Open Original Shared Link

...

The cause of the allergy has been difficult to identify because symptoms can appear three to six hours after eating meat and could occur months after a tick bite.

"People may get a little reaction at the site (of the bite), usually a small lump but they don't think it's anything," Van Nunen said.

"Then they tuck into a lamb roast and at one or two in the morning they need an ambulance."

...

 

This site has more medical info on MMA.  Since chicken is not mammalian tho, it seems you have a different condition.  I thot you still might find it interesting.  It names the protein that the have identified as being the trigger in MMA.

 

Open Original Shared Link

Link to comment
Share on other sites
kenlove Rising Star

nothing really surprises me anymore with these allergies. We've added so many chemicals and hormones to what we eat that its just a matter of time before we start dropping like flies.  supposed to be down  under in march sometime  but will stick to the fruit while there.  This 80 -10-10 diet by doug graham seems to give my gut the least stress. 

 

I hope the cardio has some good ideas for you Ken.  Personally, I think eating soy leads to irritation in the gut and possible food intolerances.  But that's just a theory of mine.

 

Looks like the tick meat allergy is in Australia too.  So Ken, you tucked into a drumstick and had a reaction at 2 in the morning?  Been to Australia lately?

 

Open Original Shared Link

Open Original Shared Link

...

The cause of the allergy has been difficult to identify because symptoms can appear three to six hours after eating meat and could occur months after a tick bite.

"People may get a little reaction at the site (of the bite), usually a small lump but they don't think it's anything," Van Nunen said.

"Then they tuck into a lamb roast and at one or two in the morning they need an ambulance."

...

 

This site has more medical info on MMA.  Since chicken is not mammalian tho, it seems you have a different condition.  I thot you still might find it interesting.  It names the protein that the have identified as being the trigger in MMA.

 

Open Original Shared Link

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,500
    • Most Online (within 30 mins)
      7,748

    fine one
    Newest Member
    fine one
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
×
×
  • Create New...