Delay Of Reaction And Symptoms Normal?

[loxleynew]

So I am curious. I have been on this diet 6 months now and I notice a difference. However I am wondering something. I work with other celiac people or gluten intolerant (which is what I am). They react straight away to gluten. However with me, if it is even gluten it always takes at least 12 hours before I feel the effects. Maybe it's because i'm gluten sensitive and not celiac?

For instance I drank a few sips of a wheat beer the other night and I felt fine even the next day. The only side effect was green stool if that is even a symptom....

Anyone else like this?

[ghostcat]

I have that problem too, but it depends on the food....and it's a big problem. Even with my food allergies there's different reactions; milk, instantly sick, ice cream......the next day, why? couldn't tell you. I'm allergic to corn too and depending on how I get it I can have my lymph nodes swell either the within hours or the next day and the rash I get can take a few days, up to two weeks to get out of my system (sometimes I don't know what it is that triggered my reaction so I think I might ingest more than I know?) But I know it's some sort of allergic reaction, because Benedryl helps. As far as wheat goes, beer, instantly have a stuffed nose, coughing and lymph nodes swell and then stomach stuff for the next 24 hours, but eating wheat......BAD abdominal pain later on. I wish someone could explain why this happens, I think it's one of the reasons it's taken me so long to figure out what's going on because how my body will react is a crapshoot. I wonder too that because I have autoimmune disease and that too has "flare ups" on how my body feels, how I react is dependent on how healthy I am at the time and my toxic load?

I had a flare up this past weekend (why I joined the board,) that practically left me bed-ridden but whatever I ate didn't effect me until the next day or later with crippling abdominal pain. Then I have to back track and figure out which it was that effected me.

Plus, it's easier to disregard your bad reactions when they don't happen "instantly" and it's not anaphylactic shock! lol! I can't count the times my husband has tried to wrestle some food away from me and I kept saying "so what?! I'll just take Benadryl later!" only to regret it with my whole being later.

So I am curious. I have been on this diet 6 months now and I notice a difference. However I am wondering something. I work with other celiac people or gluten intolerant (which is what I am). They react straight away to gluten. However with me, if it is even gluten it always takes at least 12 hours before I feel the effects. Maybe it's because i'm gluten sensitive and not celiac?

For instance I drank a few sips of a wheat beer the other night and I felt fine even the next day. The only side effect was green stool if that is even a symptom....

Anyone else like this?

[Amyleigh0007]

My reactions are delayed now too. A dear friend baked me a gluten free birthday cake a few months ago. She was so proud of it and I was extremely leary (but happy that she did that for me). While we were at lunch she wanted me to try a slice. I did. The next day I got sick. I knew immediately it was the cake since that was the only out of ordinary thing I had eaten in months. Before I went gluten free I would get sick about an hour after I ate. Now that I have been gluten free for one year it takes longer for my system to react. I get the same symptoms (diarrhea, headache, fatigue, muscle ache) but it just takes longer for the symptoms to show up. I wish I knew why.

[*Daniella*]

I got glutened over the weekend at my boss's BBQ (he promised me the hamburger meat was gluten free. Should have known better). I didn't feel the effects until the next day. Now it's going on Wednesday and I'm still sick. Before I went gluten-free I would feel the effects within a few hours. Now, it takes a day and lasts for at least 4 days.

[Gemini]

My reactions are delayed now too. A dear friend baked me a gluten free birthday cake a few months ago. She was so proud of it and I was extremely leary (but happy that she did that for me). While we were at lunch she wanted me to try a slice. I did. The next day I got sick. I knew immediately it was the cake since that was the only out of ordinary thing I had eaten in months. Before I went gluten free I would get sick about an hour after I ate. Now that I have been gluten free for one year it takes longer for my system to react. I get the same symptoms (diarrhea, headache, fatigue, muscle ache) but it just takes longer for the symptoms to show up. I wish I knew why.

I have always had delayed reactions and if you read up on Celiac Disease, many publications refer to this as being classic Celiac Disease reaction time. It takes awhile for the immune system to recognize the invader and then take appropriate action. You cannot have immediate diarrhea within 15 minutes or less and have it come from the food you just consumed. That would be more in line with an anaphylactic type reaction. Doesn't mean you don't have celiac disease but it could indicate an allergy on top of the intolerance.

The diarrhea caused by eating wheat, in Celiac Disease, is very often referred to as "nocturnal diarrhea". That was what happened to me.....I could eat wheat during the day and feel OK but at night, all hell broke loose and I was up half the night being sick. Even now, if I am glutened, it takes about 2 days for me to reach my worst. This might be why doctors do so badly at diagnosis.....they are looking for the "classic" symptoms and if you don't fall into that category, they will overlook the possibility of it being Celiac.

One of the reasons why reaction time changes is because by following a gluten-free lifestyle, you calm your immune system down (hopefully) and get better. Then, if gluten is ingested, it may take a few days for the immune system to respond to that small amount of gluten you've ingested. You probably got sick right away before dx because your system was overloaded with gluten anyway. Kind of weird that things vary so much but the immune system is so complex, I doubt it will ever be fully understood. That is how I understand it from what I have read and from what information I could gather from the "experts" in the field. I think the delay OK as it gives you time to get home, if you are out somewhere else where you don't want to be sick!

[Amyleigh0007]

I have always had delayed reactions and if you read up on Celiac Disease, many publications refer to this as being classic Celiac Disease reaction time. It takes awhile for the immune system to recognize the invader and then take appropriate action. You cannot have immediate diarrhea within 15 minutes or less and have it come from the food you just consumed. That would be more in line with an anaphylactic type reaction. Doesn't mean you don't have celiac disease but it could indicate an allergy on top of the intolerance.

The diarrhea caused by eating wheat, in Celiac Disease, is very often referred to as "nocturnal diarrhea". That was what happened to me.....I could eat wheat during the day and feel OK but at night, all hell broke loose and I was up half the night being sick. Even now, if I am glutened, it takes about 2 days for me to reach my worst. This might be why doctors do so badly at diagnosis.....they are looking for the "classic" symptoms and if you don't fall into that category, they will overlook the possibility of it being Celiac.

One of the reasons why reaction time changes is because by following a gluten-free lifestyle, you calm your immune system down (hopefully) and get better. Then, if gluten is ingested, it may take a few days for the immune system to respond to that small amount of gluten you've ingested. You probably got sick right away before dx because your system was overloaded with gluten anyway. Kind of weird that things vary so much but the immune system is so complex, I doubt it will ever be fully understood. That is how I understand it from what I have read and from what information I could gather from the "experts" in the field. I think the delay OK as it gives you time to get home, if you are out somewhere else where you don't want to be sick!

Thank you! Your explanation was awesome! So many people on this forum say that if you truly have Celiac disease your reactions become much worse and come on faster but I didn't think that was necessarly true. I thought too that if your body has healed it would take more time for it to react to the gluten, not the opposite. So many people on here think the opposite though (it seems). Thank you again!

[Gemini]

Thank you! Your explanation was awesome! So many people on this forum say that if you truly have Celiac disease your reactions become much worse and come on faster but I didn't think that was necessarly true. I thought too that if your body has healed it would take more time for it to react to the gluten, not the opposite. So many people on here think the opposite though (it seems). Thank you again!

Your welcome!

One of the hardest things that comes with understanding any autoimmune disease is that symptoms can be wacky and sporadic, many people can have very different symptoms for the same disease and figuring all this out takes a doctor who thinks outside the box and doesn't rely on what was taught 50 years ago in med school. The main phrase that convinced me I had Celiac was the term "nocturnal diarrhea". I thought it extremely odd that a person could be so sick yet only "explode" at nighttime. Who would have thought there were specific kinds of diarrhea also? Let's face it, Celiac produces some of the most severe diarrhea I ever had in my lifetime. Yet, it's different from what you have if there is food poisoning or just a general stomach bug. That's why so many docs miss clues...they hear every 3rd word you say, it seems!

I know from my own experience that now I have calmed my immune system way down and am absorbing properly again, I sometimes don't know I have been glutened for a couple of days and then it gets bad for a couple more. I also become extremely fatigued and not normal fatigue....it's "to the bone" tired. I was referred to a hematologist who actually was well versed in celiac disease and she taught me some things I didn't know. This is such a huge learning process but the more I learn, the more I understand. My reactions are about the same as before dx but I think they feel worse because usually I feel so good now, overall. I almost wish everything that was bad for you would give the same reaction....that would make it so much easier for people to stay away from what makes them sick.

[Amyleigh0007]

Your symptoms sound so much like mine. My diarrhea was mainly at night too. I always thought it was because I ate pasta and bread at dinner and I ate lightly during the day. I have never heard the term "nocturnal diarrhea" but I can say that I have (had) that. I am glad you brought that up because I have never heard anyone on this forum state they only got ill at night. I thought I was odd.

[JNBunnie1]

Thank you! Your explanation was awesome! So many people on this forum say that if you truly have Celiac disease your reactions become much worse and come on faster but I didn't think that was necessarly true. I thought too that if your body has healed it would take more time for it to react to the gluten, not the opposite. So many people on here think the opposite though (it seems). Thank you again!

I personally take two full days to feel a reaction, and my reactions last for a few weeks. It has definitely gotten less severe with time, I've also gotten better at avoiding gluten.

[at1992]

I've found that the majority of my symptoms will hit the hardest about 1.5-2 weeks after gluten consumption. From the research I've done, it seems that NCGS seems to have more immediate symptom onset, whereas celiac seems to be more delayed (since it is a delayed hypersensitivity reaction). One source was even saying that there could be a delayed reaction of over a year! The immune system is a crazy thing. But every body is very different. 

[Jmg]

Hello again  You've replied to an old thread so be aware some of the info above may be out of date...

Quote

I've found that the majority of my symptoms will hit the hardest about 1.5-2 weeks after gluten consumption. From the research I've done, it seems that NCGS seems to have more immediate symptom onset, whereas celiac seems to be more delayed (since it is a delayed hypersensitivity reaction). 

So I suspect this idea seems to come from the suggestion that NCGS primarily activates the innate immune system, triggering an instant response, whereas celiac triggers the adaptive immune system where a response is delayed due to the time to create antibodies etc. 

The latest research I'm aware of seems to say that NCGS can also trigger the adaptive response, check out the second link down from Umberto Volta and you will find him talking about this and many other aspects of NCGS:

I also have some delayed reactions. I don't know a conclusion to draw from that however. It could suggest undiagnosed celiac or it could be NCGS and it's presenting in an atypical way! Sadly my research hasn't given me any answers as yet.

 

[cristiana]

On 6/18/2017 at 10:19 PM, Jmg said:

Hello again  You've replied to an old thread so be aware some of the info above may be out of date...

So I suspect this idea seems to come from the suggestion that NCGS Open Original Shared Link, triggering an instant response, whereas celiac triggers the adaptive immune system where a response is delayed due to the time to create antibodies etc. 

The latest research I'm aware of seems to say that NCGS can also trigger the adaptive response, check out the second link down from Umberto Volta and you will find him talking about this and many other aspects of NCGS:

I also have some delayed reactions. I don't know a conclusion to draw from that however. It could suggest undiagnosed celiac or it could be NCGS and it's presenting in an atypical way! Sadly my research hasn't given me any answers as yet.

 

Hi Jmg

An old thread but I just wondered, when you say you have delayed reactions - is this still the case?  

I was dx'd back in 2013 and have really tried very hard to stay away from gluten.  But a couple of weeks back my hubby bought me a gluten free pork pie from M&S.  Except.... it wasn't!  Oh, and I can tell you it was delicious.  I should have been suspicious for that reason alone.  After I'd eaten the first slice I felt a bit queasy, kind of car sick and tired, about five hours later.  It was only then that I looked at the packaging.  M&S do have gluten-free pork pies but this was a glutenous one which had been put on the shelf right next to them, and in almost the same green coloured packaging.

I felt OK after about 24 hours but about three days ago I had a bad upset stomach, and since then have felt car sick and also headachey, floating (kind of foggy) and neck ache...  

Can it really take this long to hit?

Does this kind of thing happen to you.  I'm a bit spooked by it, to be honest, and just hoping it is only gluten...

[Jmg]

15 hours ago, cristiana said:

Hi Jmg

An old thread but I just wondered, when you say you have delayed reactions - is this still the case?  

I was dx'd back in 2013 and have really tried very hard to stay away from gluten.  But a couple of weeks back my hubby bought me a gluten free pork pie from M&S.  Except.... it wasn't!  Oh, and I can tell you it was delicious.  I should have been suspicious for that reason alone.  After I'd eaten the first slice I felt a bit queasy, kind of car sick and tired, about five hours later.  It was only then that I looked at the packaging.  M&S do have gluten-free pork pies but this was a glutenous one which had been put on the shelf right next to them, and in almost the same green coloured packaging.

I felt OK after about 24 hours but about three days ago I had a bad upset stomach, and since then have felt car sick and also headachey, floating (kind of foggy) and neck ache...  

Can it really take this long to hit?

Does this kind of thing happen to you.  I'm a bit spooked by it, to be honest, and just hoping it is only gluten...

Hi Cristiana

I've found I have a mixture of responses. I get 'early warnings' which are neurological, a trapped nerve, muscle twitches, greyed out vision, which I think can come from even small amounts of cross contamination. These are within hours. 

The sneezing, eye watering and shortness of breath I'm now primarily associating with either milk or air born gluten. I'll sneeze in the bakery aisle at the supermarket for instance. THey're instant or very soon afterwards. 

The other stuff I associate with a delay of perhaps 2-3 days before it starts to manifest. The brain fog, depression, back ache screwed up digestion etc.  I found the food diary I kept during the trial very good for working out this delayed response time. Wish I could find it as I'd post it here for reference.  

It's been awhile since I've eaten a large amount of fully glutenised food. I think a regular pork pie may be actual celiac kryptonite so the extended response does sound normal to me. You have to think in terms of the antibodies created which will have a longer life causing havoc in your body than the offending pie did. 

Hope you're feeling better soon. Sending best wishes...

Matt

[cristiana]

Thank you Matt.  Celiac Kryptonite - love it!  Especially as it was the end slice, so not just pastry on the edges, but on the side.

The annoying thing is that I'd just been going through a bit of a good patch of health and I had to go and ruin it.  I actually did take a photo of the shelf to send to M&S to say they oughtn't put their scrummy ordinary pies next to the gluten-free ones but then I thought, silly, really, as one rule we should all adhere to is to always read the packaging.  But I do wish they wouldn't use nearly the same green for their pie packaging.?  At the very least, it gives one false hopes of a rather more extended gluten-free range than actually exists. 

I literally feel I've just got a ferry having sailed the English Channel in high winds.  I can't wait for this feeling to end.   Thank you for your best wishes and hope you have been keeping well yourself and enjoying this heatwave. 

Last day of Wimbledon, last day of the Word Cup, and the Red Arrows flying over this area at about 5pm!  It's all happening!