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Delayed Reaction To Gluten?

nikki-uk

By nikki-uk
in Coping with Celiac Disease

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nikki-uk Enthusiast
nikki-uk
Posted

My son has been gluten-free for nearly a yr now and I'm still trying to establish what is a normal gluten reaction for him, but it seems it takes him up to 5 DAYS before he reacts!!!! :huh: .I must admit he was never terribly symptomatic before his dx.

I know most people here react within hours of ingesting gluten.

Over the last couple of months there have been 2 occasions when my son has definitely without a doubt (not just cc) ingested gluten.

I was all prepared for vomiting/d stomach aches but NOTHING!!!!...then after 5DAYS ( :o ) all of a sudden he came over pale..had to rush to the loo (ahem...things were NOT normal :rolleyes: ) then he had to lay down as he was so sleepy....and that was it basically :blink:

This has been the pattern twice now but I just wondered if anyone else took 5 days to react??? :blink:

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jewi0008 Contributor
jewi0008
Posted
My son has been gluten-free for nearly a yr now and I'm still trying to establish what is a normal gluten reaction for him, but it seems it takes him up to 5 DAYS before he reacts!!!! :huh: .I must admit he was never terribly symptomatic before his dx.

I know most people here react within hours of ingesting gluten.

Over the last couple of months there have been 2 occasions when my son has definitely without a doubt (not just cc) ingested gluten.

I was all prepared for vomiting/d stomach aches but NOTHING!!!!...then after 5DAYS ( :o ) all of a sudden he came over pale..had to rush to the loo (ahem...things were NOT normal :rolleyes: ) then he had to lay down as he was so sleepy....and that was it basically :blink:

This has been the pattern twice now but I just wondered if anyone else took 5 days to react??? :blink:

Hello!

I was so excited to see your poste. I feel awful for your son, but I think this is my problem, too. I have been having the WORST time trying to figure out what exactly it is (in addition to wheat/gluten) that interferes with my entire system because everything is delayed. I know for a FACT that many times it takes me 5 days+ to react.

I'm wondering if there is anyone out there that could offer up some advice to the both of us as a means of tracking to try to figure out what food are culprits. I keep a very, very detailed food journal, but it doesn't seem to help!

IDEAS?!

ravenwoodglass Mentor
ravenwoodglass
Posted

That kind of a delay is not at all unheard of and is commonly seen in intoelrances. It is a big factor in why it is often so hard to pinpoint what hit us. We all tend to blame the last thing eaten when it may have been contact days before. This delay has something to do with the length of time it takes your body to get an antibody reaction. It is also the reason why a doctor who is guiding you through an elimination diet will instruct you to add in the suspect single ingredient item for at least 5 days before deciding that your safe with it.

In myself I notice neuro problems pretty quickly but the GI stuff takes a good 3 to 4 days to hit. I may get clues like a rumbling tummy but the sickness and D take a bit.

ravenwoodglass Mentor
ravenwoodglass
Posted
Hello!

I was so excited to see your poste. I feel awful for your son, but I think this is my problem, too. I have been having the WORST time trying to figure out what exactly it is (in addition to wheat/gluten) that interferes with my entire system because everything is delayed. I know for a FACT that many times it takes me 5 days+ to react.

I'm wondering if there is anyone out there that could offer up some advice to the both of us as a means of tracking to try to figure out what food are culprits. I keep a very, very detailed food journal, but it doesn't seem to help!

IDEAS?!

One person you could look for is an allergist who will aid you in a true elimination diet. This is where they do allergy skin testing and you also fill out a sheet with your dietary habits. The MD then formulates a beginning diet for you that will be nonallergenic based on the testing and will have complete nutrition. Usually you start with about 5 food items. After a week or two, they will want you asymptomatic, you begin adding in pure single ingredient foods one at a time for about a week between foods. It is a very timeconsuming process and you will not start out with foods you like a lot. But that being said that was how I was diagnosed celiac after blood tests did not show positive.

Another route you could go if your main concerns are casein, eggs, soy or yeast in additon to the gluten is with Enterolab. They can test to see if your forming antibodies.

jewi0008 Contributor
jewi0008
Posted
One person you could look for is an allergist who will aid you in a true elimination diet. This is where they do allergy skin testing and you also fill out a sheet with your dietary habits. The MD then formulates a beginning diet for you that will be nonallergenic based on the testing and will have complete nutrition. Usually you start with about 5 food items. After a week or two, they will want you asymptomatic, you begin adding in pure single ingredient foods one at a time for about a week between foods. It is a very timeconsuming process and you will not start out with foods you like a lot. But that being said that was how I was diagnosed celiac after blood tests did not show positive.

Another route you could go if your main concerns are casein, eggs, soy or yeast in additon to the gluten is with Enterolab. They can test to see if your forming antibodies.

Thank you for your help. This is definitely something I might do. I went to one allergist who did about 60 scratch tests on me. I was allergic to NOTHING. This is why the allergist originally thought it was a delayed food reaction. I'm not sure how accurate the scratch test is?

JNBunnie1 Community Regular
JNBunnie1
Posted

jewi, I sort of do the same thing. I know I've been glutened within two days, but then my reaction lasts for about a month, with the symptoms changing every week or so. Only more than thirty days after glutening do the symptoms fully disappear for me.

ravenwoodglass Mentor
ravenwoodglass
Posted
Thank you for your help. This is definitely something I might do. I went to one allergist who did about 60 scratch tests on me. I was allergic to NOTHING. This is why the allergist originally thought it was a delayed food reaction. I'm not sure how accurate the scratch test is?

The scratch test is very accurate for true allergies it will not pick up intolerances though. And intolerance is what gluten sensitivity is. I was so far gone when I was finally tested that I was positive for everything except beechtrees. The allergist said my immune system was in hyperdrive and reacting to everything, including my own tissues by then. After about 6 months gluten-free my immune system came pretty much back to normal as far as allergies go, I only have one or two left.

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jewi0008 Contributor
jewi0008
Posted
jewi, I sort of do the same thing. I know I've been glutened within two days, but then my reaction lasts for about a month, with the symptoms changing every week or so. Only more than thirty days after glutening do the symptoms fully disappear for me.

JNBunnie1 - What kind of reactions do you get?

JNBunnie1 Community Regular
JNBunnie1
Posted
JNBunnie1 - What kind of reactions do you get?

Oh jeez, um. First week is excessive crapping, not diarhea, but just the food moving too fast and some cramping and gas. Also first week, worst headache ever, and fevers on and off, and EXTREME stupidity. I actually couldnt remeber the word for punctuation, my mother thought it was hilarious. Then, I discovered in my second most recent glutening, I become lactose intolerant for a week or two, which I really shouldn't complain about, because I can just take the pills, and it does get better. Right around the time that goes away, I get the Dh, although the first time it lasted over two weeks and was REALLY bad, and this time it's hardly bothering me, just a few spots here and there, so thank god for that. I also usually pass out once or twice in the first week, so my boyfriend doesn't let me shower without him.... oh darn. But compared with the agony a lot of other people go through, except for those awful headaches that painkillers don't even touch, I have pretty 'endurable' symptoms. I'm just a freak, apparently, because they last for so bloody long.

jewi0008 Contributor
jewi0008
Posted
Oh jeez, um. First week is excessive crapping, not diarhea, but just the food moving too fast and some cramping and gas. Also first week, worst headache ever, and fevers on and off, and EXTREME stupidity. I actually couldnt remeber the word for punctuation, my mother thought it was hilarious. Then, I discovered in my second most recent glutening, I become lactose intolerant for a week or two, which I really shouldn't complain about, because I can just take the pills, and it does get better. Right around the time that goes away, I get the Dh, although the first time it lasted over two weeks and was REALLY bad, and this time it's hardly bothering me, just a few spots here and there, so thank god for that. I also usually pass out once or twice in the first week, so my boyfriend doesn't let me shower without him.... oh darn. But compared with the agony a lot of other people go through, except for those awful headaches that painkillers don't even touch, I have pretty 'endurable' symptoms. I'm just a freak, apparently, because they last for so bloody long.

Yes, I will get a lot of cramping, gas, DH,but the worst for me is always the reactions I get in my mouth. These are not visible to the eye, but it's like my tongue is constantly scraping against my teeth. My mouth is extremely irritated, annoyed and burns. I will sometimes get canker sores, but not very often. It's the most UNUSUAL symptom...I don't know anyone else who has that?! Anyways, had it for over 2 years and on some random days it disappers...this is how I know my intolerances are delayed. I'm going insane and not sure what to do!!!!

nikki-uk Enthusiast
nikki-uk
Posted
  • Author

Thanks for all your replies :)

I don't think my son is intolerant to anything else - and I'm definitely not questioning his dx (biopsy proven) ....it's just that I'm really suprised it takes him 5 days before he even had a loose stool after a glutening. Most would be rolling up within a few hrs :huh:

So, it would seem my son doesn't get much of a stomach reaction but he does seem to be run down after a glutening and always seems to get loads of boils in the most uncomfortable of places <ouch> :o

jewi0008 Contributor
jewi0008
Posted
Thanks for all your replies :)

I don't think my son is intolerant to anything else - and I'm definitely not questioning his dx (biopsy proven) ....it's just that I'm really suprised it takes him 5 days before he even had a loose stool after a glutening. Most would be rolling up within a few hrs :huh:

So, it would seem my son doesn't get much of a stomach reaction but he does seem to be run down after a glutening and always seems to get loads of boils in the most uncomfortable of places <ouch> :o

He gets boils? I haven't heard of that? Where at does he get them? Is that common? I get run down, too...that's for sure. I'm 24, but I remember when I was growing up...after every family get together I would be the child that was on the couch sleeping...super lethargic. Also, I had cracks in the corners of my mouth and this weird itcy, rash around my nose. Doctors always told my parent's I perhaps had "hand, foot and mouth" disease...but I never had anything on my hands or feet!

mftnchn Explorer
mftnchn
Posted

This is helpful. I have been wondering about this myself. Wow, a 30 day reaction is amazing.

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