Jump to content

  • 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:
    Support Our Content
    eNewsletter
    Donate

Delayed Reaction To Gluten?

nikki-uk

By nikki-uk
in Coping with Celiac Disease

Recommended Posts

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:

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

Celiac.com Sponsor (A8-M):


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.

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

Celiac.com Sponsor (A8-M):


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.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    2. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in...
    3. SilkieFairy
      - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash...
    4. catnapt
      - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      learned I had a high PTH level in 2022 suspected to be due to low vit D got my vit D level up a bit but still have high PTH I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

      I am on day 13 of eating gluten and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.