Violent Response To Getting Glutened

[RebeccaMSL]

I used to get the big D every day before I was diagnosed. But I guess my body and I were used to it b/c although that was miserable and I never knew what was doing it to me, I at least was not getting as violently ill as I now get. I have been gluten free since November of 05. Now, if I get glutened I sweat, shake uncontrollably, have diarrhea and vomiting, and feel gravely ill. Why would my tolerance be this low after avoiding gluten? Has this happened to anyone else? It makes me very fearful when eating out b/c I get SO SO SO sick if I get gluten.

Another question, what I think did it to me is a caramelized bourbon sauce on my swordfish...But WHY? Bourbon is made from grains but the last thing I read said that the distillation process removes any gluten, so what gives???

Thanks for any advice or thoughts on the matter. Rebecca

[wacky~jackie]

RebeccaMSL,

Hi I'm a newbie - only gluten-free since 8/7/06. I have noticed that I am super sensitive to gluten since going gluten-free. I'm not sure if this is normal or not. I can't understand why - unless it's because my intestines are starting to heal and a minor amount of gluten triggers severe symptoms now. I guess I'm not much help -just wanted to let you know that you're not alone

[Kat-Kat]

I have a siezure if I eat drink anything because of the celiacs

[Ursa Major]

I used to get the big D every day before I was diagnosed. But I guess my body and I were used to it b/c although that was miserable and I never knew what was doing it to me, I at least was not getting as violently ill as I now get. I have been gluten free since November of 05. Now, if I get glutened I sweat, shake uncontrollably, have diarrhea and vomiting, and feel gravely ill. Why would my tolerance be this low after avoiding gluten? Has this happened to anyone else? It makes me very fearful when eating out b/c I get SO SO SO sick if I get gluten.

Another question, what I think did it to me is a caramelized bourbon sauce on my swordfish...But WHY? Bourbon is made from grains but the last thing I read said that the distillation process removes any gluten, so what gives???

Thanks for any advice or thoughts on the matter. Rebecca

Hi Rebecca, and welcome to this board. Well, I don't think the problem with the sauce was the bourbon (at least it probably wasn't, but who knows), but rather whatever it was thickened with.

Many people will get worse reactions from being glutened after being gluten-free for a while. Your body was in a constant state of being poisoned before, so wouldn't react all that violently on top of being weakened already. Now that you're well, your body really notices poison, and reacts violently. At least you never have to wonder if you got glutened! Personally, I think it's better than not reacting at all, because the poor people who have that problem can never be 100% sure if there isn't a source of cross contamination around that they overlooked.

[Guest Doll]

I used to get the big D every day before I was diagnosed. But I guess my body and I were used to it b/c although that was miserable and I never knew what was doing it to me, I at least was not getting as violently ill as I now get. I have been gluten free since November of 05. Now, if I get glutened I sweat, shake uncontrollably, have diarrhea and vomiting, and feel gravely ill. Why would my tolerance be this low after avoiding gluten? Has this happened to anyone else? It makes me very fearful when eating out b/c I get SO SO SO sick if I get gluten.

Another question, what I think did it to me is a caramelized bourbon sauce on my swordfish...But WHY? Bourbon is made from grains but the last thing I read said that the distillation process removes any gluten, so what gives???

Thanks for any advice or thoughts on the matter. Rebecca

Hi Rebecca. I also react violently, and unfortunately this has gotten worse since time goes on. Wish I could tell you it gets BETTER with time. I get the same sort of symptoms as you from cross-contamination alone. Like you, I initially had mostly GI symptoms (and fatigue) prior to being dx. Now, my symptoms from CC alone are much more severe. As soon as I ingest anything gluten contaminated: My blood sugar drops dramatically within 20 minutes (NOT good when you have insulin on board ), I get projectile vomiting, diarrhea, lightheadedness, seeing black spots, dizziness, racing heart rate, and numbness in my extremities. I certainly make for an interesting dinner date!

I suspect the last few symptoms are due to a drop in blood pressure, similar to what happens in an allergic response, like going into shock.

I read in your other post that you also have Type 1, that could explain why are reactions are more severe. People with true Celiac and especially those with additional autoimmune diseases have "leaky guts" that let in foreign whole proteins such as gluten. Since we more than likely have extremely large gaps, we may let in "more" whole gluten proteins as opposed to someone with Celiac alone.

OR although the genetics for Celiac and Type 1 are related, it could be that some Type 1's tend to have more additional genes that make them more sensitive than Celiac's without another autoimmune illness. Others may have "protective" genes making them less symptomatic even if they have extremely "leaky guts".

Anyway, if you are truly as sensitive as me, I would suggest trying to avoid going out to restaurants that do not have a gluten-free menu. I have tried to order plain meat, veggies, and potatoes (no sauces or spices) off of regular restaurant menus explaining I have a "wheat, barley, oats, allergy" but I still usually get sick. All it takes is for someone to accidentally touch your food with breadcrumbs on their hands, or not clean the grill, and you could get sick. Usually more upscale restaurants will have a chef that can prepare a gluten-free meal for you, if you call in advance. The local chapter of your Celiac Association usually also prints a list of Celiac friendly restaurants in your area.

It's been hard for me, since I didn't develop Celiac until I was an adult, but I am realizing that I have to look at it as a "severe deathly allergy" so that I don't keep trying to eat out in normal restaurants and keep CCing myself!

It's really hard going out with my friends now Bars, lounges, etc. don't cater to Celiacs!

[oceangirl]

Hi Rebecca. I also react violently, and unfortunately this has gotten worse since time goes on. Wish I could tell you it gets BETTER with time. I get the same sort of symptoms as you from cross-contamination alone. Like you, I initially had mostly GI symptoms (and fatigue) prior to being dx. Now, my symptoms from CC alone are much more severe. As soon as I ingest anything gluten contaminated: My blood sugar drops dramatically within 20 minutes (NOT good when you have insulin on board ), I get projectile vomiting, diarrhea, lightheadedness, seeing black spots, dizziness, racing heart rate, and numbness in my extremities. I certainly make for an interesting dinner date!

I suspect the last few symptoms are due to a drop in blood pressure, similar to what happens in an allergic response, like going into shock.

I read in your other post that you also have Type 1, that could explain why are reactions are more severe. People with true Celiac and especially those with additional autoimmune diseases have "leaky guts" that let in foreign whole proteins such as gluten. Since we more than likely have extremely large gaps, we may let in "more" whole gluten proteins as opposed to someone with Celiac alone.

OR although the genetics for Celiac and Type 1 are related, it could be that some Type 1's tend to have more additional genes that make them more sensitive than Celiac's without another autoimmune illness. Others may have "protective" genes making them less symptomatic even if they have extremely "leaky guts".

Anyway, if you are truly as sensitive as me, I would suggest trying to avoid going out to restaurants that do not have a gluten-free menu. I have tried to order plain meat, veggies, and potatoes (no sauces or spices) off of regular restaurant menus explaining I have a "wheat, barley, oats, allergy" but I still usually get sick. All it takes is for someone to accidentally touch your food with breadcrumbs on their hands, or not clean the grill, and you could get sick. Usually more upscale restaurants will have a chef that can prepare a gluten-free meal for you, if you call in advance. The local chapter of your Celiac Association usually also prints a list of Celiac friendly restaurants in your area.

It's been hard for me, since I didn't develop Celiac until I was an adult, but I am realizing that I have to look at it as a "severe deathly allergy" so that I don't keep trying to eat out in normal restaurants and keep CCing myself!

It's really hard going out with my friends now Bars, lounges, etc. don't cater to Celiacs!

Hi, Rebecca, Welcome to the Board!

I, too, have FAR more intense reactions now that I'm 5 months gluten-free. It seems to be the consensus of many people who write on this board that this response is common. Right now I am TERRIFIED of eating out because of cc issues and will only go every now and then to a friend's restaurant where I KNOW they are being careful for me. It's a bummer but worth not getting sick right now. (I'm dealing with a "glutening" that I can't trace right now! And that's with MAKING all my food!)) Hopefully, things will get better for you with time and as you heal. Good luck and better health to you soon.

lisa

[RebeccaMSL]

Hi Rebecca. I also react violently, and unfortunately this has gotten worse since time goes on. Wish I could tell you it gets BETTER with time. I get the same sort of symptoms as you from cross-contamination alone. Like you, I initially had mostly GI symptoms (and fatigue) prior to being dx. Now, my symptoms from CC alone are much more severe. As soon as I ingest anything gluten contaminated: My blood sugar drops dramatically within 20 minutes (NOT good when you have insulin on board ), I get projectile vomiting, diarrhea, lightheadedness, seeing black spots, dizziness, racing heart rate, and numbness in my extremities. I certainly make for an interesting dinner date!

I suspect the last few symptoms are due to a drop in blood pressure, similar to what happens in an allergic response, like going into shock.

I read in your other post that you also have Type 1, that could explain why are reactions are more severe. People with true Celiac and especially those with additional autoimmune diseases have "leaky guts" that let in foreign whole proteins such as gluten. Since we more than likely have extremely large gaps, we may let in "more" whole gluten proteins as opposed to someone with Celiac alone.

OR although the genetics for Celiac and Type 1 are related, it could be that some Type 1's tend to have more additional genes that make them more sensitive than Celiac's without another autoimmune illness. Others may have "protective" genes making them less symptomatic even if they have extremely "leaky guts".

Anyway, if you are truly as sensitive as me, I would suggest trying to avoid going out to restaurants that do not have a gluten-free menu. I have tried to order plain meat, veggies, and potatoes (no sauces or spices) off of regular restaurant menus explaining I have a "wheat, barley, oats, allergy" but I still usually get sick. All it takes is for someone to accidentally touch your food with breadcrumbs on their hands, or not clean the grill, and you could get sick. Usually more upscale restaurants will have a chef that can prepare a gluten-free meal for you, if you call in advance. The local chapter of your Celiac Association usually also prints a list of Celiac friendly restaurants in your area.

It's been hard for me, since I didn't develop Celiac until I was an adult, but I am realizing that I have to look at it as a "severe deathly allergy" so that I don't keep trying to eat out in normal restaurants and keep CCing myself!

It's really hard going out with my friends now Bars, lounges, etc. don't cater to Celiacs!

[RebeccaMSL]

Thanks for all the replies. I am amazed that this is common that the allergic response becomes more severe. I really don't want to eat anywhere but home now, unless there is a gluten-free menu. I felt so terrible the last time I got sick, and I was fainting while trying to get both ends over the toilet, and my heart was pounding so fast I seriously thought I was dying. I talked to my endocrinologist and he said he has heard this from other patients, but there really should be some research to understand what happens better. I NEVER want to go through another bout. I am thankful for this board, and I cannot believe I found another person with Type 1 and celiac. I also have Sjogren's Syndrome and connective tissue disease. Oh, and from decades of malnutrition, osteoporosis and anemia. I am certain that if my celiac had been diagnosed earlier I would not have developed all my other auto-immune diseases. Diabetes when I was 11, and the rest in my 20's and 30's....But, just need to be positive...one day at a time, and that which does not kill you makes you stronger...:::Trying not to be depressed about it all::: Thanks for the responses. Rebecca

[daffadilly]

rebecca, there are a lot of people with type 1 & celiac.

sorry you got so sick. That is the best way to tell that you have celiac disease, IMO. It does not do that to people that do not have celiac. I have two DQ1 genes & I am extremely sensitive. Not only do I not eat out but I cannot eat the alternative flours or gluten-free crackers & stuff like that. The only thing that I eat at the moment as replacements are Lundberg rice chips, & rice cakes & Mission Brand white corn tortillas. It gets old, I keep trying things & even baked a banana bread with almond four & corn flour & it made me sick as could be, so I gave it to my celiac friend at the office - nothing makes him sick.

Next I guess I will try grinding my own almonds. I have some Gluten Free Pantry brownie mix & a sweet tooth so I am wanting to make those & put some chocolate icing on them. But I am not holding out great hopes that I will be able to eat them.

A note to the extra super sensitive people those Lundberg things are great with no cross contamination - the only thing those people do is rice.

Add to my woes that I cannot eat dairy now, nor potatoes & a few other allergy things & sometimes I wonder why I enjoy eating so much. But I just rallied & sliced up some strawberries & splurged & put sugar all over them & will pour that on top of some sliced bananas.

[NoGluGirl]

I used to get the big D every day before I was diagnosed. But I guess my body and I were used to it b/c although that was miserable and I never knew what was doing it to me, I at least was not getting as violently ill as I now get. I have been gluten free since November of 05. Now, if I get glutened I sweat, shake uncontrollably, have diarrhea and vomiting, and feel gravely ill. Why would my tolerance be this low after avoiding gluten? Has this happened to anyone else? It makes me very fearful when eating out b/c I get SO SO SO sick if I get gluten.

Another question, what I think did it to me is a caramelized bourbon sauce on my swordfish...But WHY? Bourbon is made from grains but the last thing I read said that the distillation process removes any gluten, so what gives???

Thanks for any advice or thoughts on the matter. Rebecca

Dear RebeccaMSL,

It is actually quite normal to have a severe reaction such as yours after avoiding gluten. By you avoiding gluten, it was cleansed from your system. Once you eat it again after so long, your body treats it like a poison. That is why the severe reaction occurs. Just make sure you avoid it as completely as you can. As they say, it is better to be safe than sorry.

Sincerely,

NoGluGirl

[RebeccaMSL]

Oh, I know I have celiac. I had a positive endoscopic biopsy showing complete atrophy of my small intestine/duodenum, as well as positive blood tests. So, no doubt about that! Where did you get genetic testing done? I want to test my 3 pr old son for DQ2 and DQ8 which if they are negative will allow me to relax a little. My pedi says that only a few labs will do this testing and that its very expensive, and of course not covered by his insurance since he has no diagnosis of anything. I just want to know if he carries the risk. I live in MASS and could probably find a lab here somewhere. Rebecca

[gfp]

Dear RebeccaMSL,

It is actually quite normal to have a severe reaction such as yours after avoiding gluten. By you avoiding gluten, it was cleansed from your system. Once you eat it again after so long, your body treats it like a poison. That is why the severe reaction occurs. Just make sure you avoid it as completely as you can. As they say, it is better to be safe than sorry.

Sincerely,

NoGluGirl

Imagine a 60 per day smoker... they poision themselves all day everyday and obviously their health suffers but take a 60 a day ex-smoker and get them to smoke 60 cig's straght and they will be vomiting before the end of the first packet.

The body adapts to the toxin and processing it...

[NoGluGirl]

Imagine a 60 per day smoker... they poision themselves all day everyday and obviously their health suffers but take a 60 a day ex-smoker and get them to smoke 60 cig's straght and they will be vomiting before the end of the first packet.

The body adapts to the toxin and processing it...

Dear gfp,

My father smokes. I cannot stand it! He is like a chimney. My asthma cannot take it! Cigarettes are bad all around. Quitting is difficult, though. They are so addictive! It really is scary. I am glad I never started! Many people in my family on his side had emphazema. I prefer yoga and meditation for stress relief!

Sincerely,

NoGluGirl

[Green Fingered Gaelic]

Hey Rebecca,

The better I get at being a celiac the harder it gets. The more regular gluten you intake the less severe the reactions, however the long term consequences are serious. I've been diagnosed 24 years, im 26 now.

I still get reactions, and as bad as ever. I'm a bit better at coping with them now, but its tough. I've allways adhered to a gluten-free diet, but recently I've been trying that bit harder.

I fear of developing other auto immune disorders. Various studies I've read suggest your right about early detection preventing other disorders. This is tragic and sad. Thing is tho there is no real way for you to find out. Maybe its best to put the ifs and maybes behind you.

I'm trying to perfect my gluten-free lifestyle. To make it possible to be totally gluten-free. I think it can be done, but you gotta make it the focus of your life. Which untill now I couldn't do. I could never admit to myself how much this disorder has made me suffer over the years.

I'm now trying to eliminate all processed foods, and even many foods declaring to be gluten-free. So often the machines used to retail pack the gluten-free products are used on the non gluten-free ones. Cross contamination is the other worry. Trust no one, trust nothing, that you can't be sure is safe to eat. The consequences don't bear thinking about. As you get better at the diet you'll have to stop kissing crumby people, stop eating from kitchens that might be contaminated. 'Back to basics' is my current mantra, fruit, veg, fish n meat. Guaranteed to be safe.

[gfp]

Hey Rebecca,

The better I get at being a celiac the harder it gets. The more regular gluten you intake the less severe the reactions, however the long term consequences are serious. I've been diagnosed 24 years, im 26 now.

I still get reactions, and as bad as ever. I'm a bit better at coping with them now, but its tough. I've allways adhered to a gluten-free diet, but recently I've been trying that bit harder.

I fear of developing other auto immune disorders. Various studies I've read suggest your right about early detection preventing other disorders. This is tragic and sad. Thing is tho there is no real way for you to find out. Maybe its best to put the ifs and maybes behind you.

I'm trying to perfect my gluten-free lifestyle. To make it possible to be totally gluten-free. I think it can be done, but you gotta make it the focus of your life. Which untill now I couldn't do. I could never admit to myself how much this disorder has made me suffer over the years.

I'm now trying to eliminate all processed foods, and even many foods declaring to be gluten-free. So often the machines used to retail pack the gluten-free products are used on the non gluten-free ones. Cross contamination is the other worry. Trust no one, trust nothing, that you can't be sure is safe to eat. The consequences don't bear thinking about. As you get better at the diet you'll have to stop kissing crumby people, stop eating from kitchens that might be contaminated. 'Back to basics' is my current mantra, fruit, veg, fish n meat. Guaranteed to be safe.

I think you can come through that.....

If you do go really strict for a time period and the gut heals then yep you get D.. and perhaps worse than before but it doesn't set you back to square 1. You get over it and that's it.... the hard part is when your being constantly low-grade glutened.

I'm convinced that "coming down is the hardest part"

When I have messed up on hols and kept it up for 3-4 days its just bad.(I even found that a bt of gluten every so many hours stops you feeling really really bad).. then when I finally stop its crushing.