I keep getting Glutened on trace AMOUNTs/Anybody else?

[zenith12]

I figured out that I keep getting glutened on trace amounts of gluten in the brownies. Both are certified. Aldis and Sweet street. I handled them before months ago it seemed.  Any I noticed my symptoms have changed. My head feels weird, and i didn't bloat this time. I just had a little pain in stomach. 

For many times in past month or so i lay down for the night for my last meal then start to feel SHAKEY and IBS, and then my brain is wired and I can't sleep  and  I start to sweat real bad. I also had brain fog this morning. I just got glutened last night but have felt this way many times but it was more minor.

I thought my body was trying to detox. 

So can I just NEVER eat processed foods again?  Or am i getting glutened by mimickers?   rice flour etc?

SO i am going to go to the doc to get antibodies test to make sure it is gluten.  Will mimickers make the gluten antibodies rise?   Thanks      Oh and my other symptom of course i have no appetite but have to eat anyway.

And i don't understand why ppl with celiac think they can eat gluten free processed food when it is NOT gluten free. I think the industry needs to PUSH that only for  gluten intolerant ppl . Or ppl who want to make it a fad to eat gluten-free.  Thanks       

That commenter was right your symptoms can change.

[cyclinglady]

Nope.  This is a certified gluten-free brownie mix.  It is gluten free.  I would eat them.  But I do not have any intolerances.  You might have a corn intolerance.  
 

Almost 98% of clearly marked gluten free products are really gluten free. Certified gluten-free has even a lower threshold less than 10 ppm but that means the top of the range.  There is no machine that can test lower.  
 

You either have something else going on, have a corn intolerance, or blood sugar issues.  Brownies are junk food.  The first ingredient is sugar!  They are not healthy.  

Consider seeing a Gastroenterologist and do a gluten challenge.  Find out of you really have celiac disease.  I know that you said you were diagnosed by an NP.  What if gluten is not the root cause of problems?  Because you sure seem like you are following the gluten-free diet well.  I would hate for you to have something else like cancer or Crohn’s.  

 

 

Edited June 22, 2020 by cyclinglady

[zenith12]

1 hour ago, cyclinglady said:

Nope.  This is a certified gluten-free brownie mix.  It is gluten free.  I would eat them.  But I do not have any intolerances.  You might have a corn intolerance.  
 

Almost 98% of clearly marked gluten free products are really gluten free. Certified gluten-free has even a lower threshold less than 10 ppm but that means the top of the range.  There is no machine that can test lower.  
 

You either have something else going on, have a corn intolerance, or blood sugar issues.  Brownies are junk food.  The first ingredient is sugar!  They are not healthy.  

Consider seeing a Gastroenterologist and do a gluten challenge.  Find out of you really have celiac disease.  I know that you said you were diagnosed by an NP.  What if gluten is not the root cause of problems?  Because you sure seem like you are following the gluten-free diet well.  I would hate for you to have something else like cancer or Crohn’s.  

 

 

Ok thank you very much. Yes sometimes it does feel like low blood sugar problems but I can tell the difference, when it is and when it is not.  Do I just go to an alergist to see if i have corn , soy, rice problems?  Should i go to a gastro first or  primary doc? Thanks

What are the symptoms of Crohn's? When i go to sleep for the night how come the symptoms come on right when i am about to fall asleep?

And if i do the anitbodies test won't it prove if i am NOT following the gluten free diet?

[cyclinglady]

You  have been gluten free since the Fall of 2019.  I am not sure if you will register any antibodies at all.  Small tiny amounts of gluten over the course of the last few months may not be enough to show on a test.  So, consider a gluten challenge.  

The only way to know for sure if your blood sugar drops is to use a glucose meter or have a lab test.  

Trying to diagnose yourself can be dangerous.  Symptoms are often meaningless with autoimmune disease because many symptoms overlap.  Best to see a doctor who can order lab tests.  

Based on your insurance or financial resources, or healthcare in your area, start with a PCP/GP.  They can refer you to a specialist.  

[zenith12]

On 6/22/2020 at 5:45 PM, cyclinglady said:

You  have been gluten free since the Fall of 2019.  I am not sure if you will register any antibodies at all.  Small tiny amounts of gluten over the course of the last few months may not be enough to show on a test.  So, consider a gluten challenge.  

The only way to know for sure if your blood sugar drops is to use a glucose meter or have a lab test.  

Trying to diagnose yourself can be dangerous.  Symptoms are often meaningless with autoimmune disease because many symptoms overlap.  Best to see a doctor who can order lab tests.  

Based on your insurance or financial resources, or healthcare in your area, start with a PCP/GP.  They can refer you to a specialist.  

ok thanks. What is a gluten challenge? what should we eat when we have flare ups? for lunch all i had was almonds, advocado and  beef/cheese and blueberries and it gave me the craps like 6 times. I think it slowed down now. Is my body still sensitive from a day ago when i had some weird reaction, like glutening response? do you try to eat 600 calories at every meal? Will going to an alergist still be beneficial?

[cyclinglady]

18 minutes ago, zenith12 said:

ok thanks. What is a gluten challenge? what should we eat when we have flare ups? for lunch all i had was almonds, advocado and  beef/cheese and blueberries and it gave me the craps like 6 times. I think it slowed down now. Is my body still sensitive from a day ago when i had some weird reaction, like glutening response? do you try to eat 600 calories at every meal? Will going to an alergist still be beneficial?

A gluten challenge, which should be supervised by a medical doctor, is consuming gluten daily for 6 to 12 weeks with the goal of getting antibody testing for celiac disease (only 2 to 4 weeks if going directly to endoscopy).  
 

if you do have celiac disease, and if you consume gluten, it sets off an autoimmune response.  This means your gut is being attacked.  It makes digesting anything, anything even gluten-free,  painful.  So, the foods you listed?  You either have a damaged gut from  some recent gluten exposures or you have an intolerance to some of those foods.  Best to keep a food and symptom journal to help identify food intolerances.  
 

Suspects?  Avocado, almonds, cheese, heck,  it could be any of those things.  
 

My opinion on allergists?  I see one.  Why?  Because I suffer from hives, severe swelling, vomiting, abdominal pain, passing out from exposures to things like insect stings, and medications. Severe enough to have anaphylaxis and get hospitalized.   I test positive to cat, horse, a bunch of weeds, nuts on standard allergy tests.  If you never get allergy symptoms, then maybe you do not have allergies.  An allergist usually is going to give you antihistamines, asthma medications or an EPI pen to save your life.    Your GP can help determine if you should see an allergist.  He or she can help you figure out why you many have intolerances.  Find the root cause.  It could be celiac disease, SIBO, gallbladder disease, Crohn’s, UC, Cancer, or an infection.  It can be many things.   If this is not possible, find another doctor.  
 

I eat until I am full.  I never count calories.  
 

Finally, you need to write this information down.  You tend to ask the same questions.  Do your own research, but do not try to diagnose yourself.   It can be dangerous.  I worry because you are still not feeling well after all these months.  There should be some improvement by now.      I know when you are sick, and this can be hard to do but do it on your good days.  

Edited June 23, 2020 by cyclinglady

[zenith12]

38 minutes ago, cyclinglady said:

A gluten challenge, which should be supervised by a medical doctor, is consuming gluten daily for 6 to 12 weeks with the goal of getting antibody testing for celiac disease (only 2 to 4 weeks if going directly to endoscopy).  
 

if you do have celiac disease, and if you consume gluten, it sets off an autoimmune response.  This means your gut is being attacked.  It makes digesting anything, anything even gluten-free,  painful.  So, the foods you listed?  You either have a damaged gut from  some recent gluten exposures or you have an intolerance to some of those foods.  Best to keep a food and symptom journal to help identify food intolerances.  
 

Suspects?  Avocado, almonds, cheese, heck,  it could be any of those things.  
 

My opinion on allergists?  I see one.  Why?  Because I suffer from hives, severe swelling, vomiting, abdominal pain, passing out from exposures to things like insect stings, and medications. Severe enough to have anaphylaxis and get hospitalized.   I test positive to cat, horse, a bunch of weeds, nuts on standard allergy tests.  If you never get allergy symptoms, then maybe you do not have allergies.  An allergist usually is going to give you antihistamines, asthma medications or an EPI pen to save your life.    Your GP can help determine if you should see an allergist.  He or she can help you figure out why you many have intolerances.  Find the root cause.  It could be celiac disease, SIBO, gallbladder disease, Crohn’s, UC, Cancer, or an infection.  It can be many things.   If this is not possible, find another doctor.  
 

I eat until I am full.  I never count calories.  
 

Finally, you need to write this information down.  You tend to ask the same questions.  Do your own research, but do not try to diagnose yourself.   It can be dangerous.  I worry because you are still not feeling well after all these months.  There should be some improvement by now.      I know when you are sick, and this can be hard to do but do it on your good days.  

Ok thanks. NO i defiintely have celiacs. I am NOT going to take any more gluten. I have the antibodies test to prove it. But i know i have other food alergies or getting glutened on trace amounts.  I am going to a food alergist. I guess i will call the doc to make sure she tests for that and not weeds. I think the person said she did.  A food alergies should be beneficial. I need to know if i need to stop eating corn, rice etc.  That appoinment is on the 6th of July. I do have psorisis , that is another autoimmune problem but mine hasn't flared up in a long time on my elbows. Onetime i broke out in guttate a long time ago.   NO i have been feeling great!!!!!!  I promise you.   But over the last couple months i was wondering where that WEIRD sensations were coming from. Then i knew it was from the brownies, cookies, and the Alids brownies. I don't think that sensation is normal. SO i KNOW i have other food problems that i need to stay away from then i will feel great from then on. I didn't realize other food problems can crop up after celiacs. I still just don't know if those sensations were from trace amounts or not so that is why i am going to see a food alergist  and my P C  doc.  And they can do that antibodies test.  Thanks so much. I will write this down.

[Rangerred]

I’m a very sensitive celiac and had issues last year with ongoing gluten sx, neuropathies, fatigue, foggy brain, bloating, constipation, increased liver enzymes, etc.  I was finally able to trace it to Oral B Glide dental floss. I had reviewed everything in my diet, I never eat out. I had researched the dental floss and multiple celiac friendly web sites listed it as gluten-free, but while traveling I hadn’t used it for several days and then when I resumed use it became obvious that it was the source. I switched to another brand and my symptoms resolved within a few weeks and my liver enzymes normalized in a few months. 

[zenith12]

1 hour ago, Rangerred said:

I’m a very sensitive celiac and had issues last year with ongoing gluten sx, neuropathies, fatigue, foggy brain, bloating, constipation, increased liver enzymes, etc.  I was finally able to trace it to Oral B Glide dental floss. I had reviewed everything in my diet, I never eat out. I had researched the dental floss and multiple celiac friendly web sites listed it as gluten-free, but while traveling I hadn’t used it for several days and then when I resumed use it became obvious that it was the source. I switched to another brand and my symptoms resolved within a few weeks and my liver enzymes normalized in a few months. 

Hello! I wondered about that too. I heard it could have gluten in it. I just wash my mouth out real good. Does that help?  Hopefully baking soda is gluten free. I try not to swallow any if it in case it is contaminated. I use that for tooth paste. Let me go see the floss i  am using. Well with me i am pretty sure it is the trace amounts in the Aldis brownies and the sweet street brownies. I was able to eat them months ago but i heard your body becomes more sensitive and my stomache is always sort of on empty since i am only eating low calories and pretty healthy. I gave up the brownies as of a few days ago. I am hoping i can still eat the Justins chocolate on occasion. I seem to do ok on that but haven't eaten it in awhile...the little or big cups. Almond and peanut butter. What kinda floss do i need to be getting??  thanks    Let me go see what i am using now. I am using Reached/Waxed unflavored. Is that a good one?   thanks    I am pretty sure it isn't that since i had been using that a long time i think with no problems.  I am going to find that site you are talking about now or i will do a search on this forum. Thanks for input.

[Bags]

I know I am having the same issue! Being a newbie to finding out that I have Celiac disease has made for a very uneducated person. It is scary to know how easily a cross-contamination can occur. The pain that I seem to get often if I have the tiniest bit of gluten is immense and makes me bedridden. The only things I am sure of that does not cause all sorts of gut-wrenching pain are bananas with almond butter then quinoa with raisins (made with avocado oil) and toasted pine nuts. I do not dare to stray away from that...

[Bags]

On 6/22/2020 at 3:02 PM, zenith12 said:

I figured out that I keep getting glutened on trace amounts of gluten in the brownies. Both are certified. Aldis and Sweet street. I handled them before months ago it seemed.  Any I noticed my symptoms have changed. My head feels weird, and i didn't bloat this time. I just had a little pain in stomach. 

For many times in past month or so i lay down for the night for my last meal then start to feel SHAKEY and IBS, and then my brain is wired and I can't sleep  and  I start to sweat real bad. I also had brain fog this morning. I just got glutened last night but have felt this way many times but it was more minor.

I thought my body was trying to detox. 

So can I just NEVER eat processed foods again?  Or am i getting glutened by mimickers?   rice flour etc?

SO i am going to go to the doc to get antibodies test to make sure it is gluten.  Will mimickers make the gluten antibodies rise?   Thanks      Oh and my other symptom of course i have no appetite but have to eat anyway.

And i don't understand why ppl with celiac think they can eat gluten free processed food when it is NOT gluten free. I think the industry needs to PUSH that only for  gluten intolerant ppl . Or ppl who want to make it a fad to eat gluten-free.  Thanks       

That commenter was right your symptoms can change.

I think that it might be in your best interest to get the bloodwork done. I had symptoms for about 7 years and had never done the bloodwork that tests for Celiac disease. Now, I feel less pain (providing I do not have anything gluten...hard to do it every time when it is all new to you) and can not worry about missing out on things. Sleeping has been without luck. I barely get rest because I am sweating (like from a run) then freezing cold the next minute. I was getting up every 30 minutes to an hour to run to the restroom then spending 3 or much hours there. It is a vicious cycle that occurs when I consume gluten.

In addition, I struggle with being lactose intolerant. I right away (maybe an hour) have IBS which is absolutely painful. Not only do I need to stay away from dairy, I have to do the same for red meat. Not sure why but it feels like red meat does not agree with me and I have similar symptoms as what having gluten is like.

I am going to incorporate a diet mainly of raw and whole foods. I feel safer this way when it comes to finding things to eat. I have lost so much weight because of this disease and my concern with eating. I went from 200lbs (approximately) to 148lbs now. Granted that is good for me to lose weight (suppose to be 130lbs for height and age).

Sincerely,

Bags 

[Awol cast iron stomach]

My immunologist that figured out all my issues did IgE allergy testing, had me do a food diary to determine additional intolerances, in addition to my gluten issues. You can have other food intolerance s or issues with additives/ingrediants.

 Good luck

[cyclinglady]

7 hours ago, Bags said:

I think that it might be in your best interest to get the bloodwork done. I had symptoms for about 7 years and had never done the bloodwork that tests for Celiac disease. Now, I feel less pain (providing I do not have anything gluten...hard to do it every time when it is all new to you) and can not worry about missing out on things. Sleeping has been without luck. I barely get rest because I am sweating (like from a run) then freezing cold the next minute. I was getting up every 30 minutes to an hour to run to the restroom then spending 3 or much hours there. It is a vicious cycle that occurs when I consume gluten.

In addition, I struggle with being lactose intolerant. I right away (maybe an hour) have IBS which is absolutely painful. Not only do I need to stay away from dairy, I have to do the same for red meat. Not sure why but it feels like red meat does not agree with me and I have similar symptoms as what having gluten is like.

I am going to incorporate a diet mainly of raw and whole foods. I feel safer this way when it comes to finding things to eat. I have lost so much weight because of this disease and my concern with eating. I went from 200lbs (approximately) to 148lbs now. Granted that is good for me to lose weight (suppose to be 130lbs for height and age).

Sincerely,

Bags 

Red meat?  We have a member who develop a meat intolerance due to a tick bite.  Google it.