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

Have You Ever Not Gotten Sick When You Know For Sure You've Been Glutened?

emcmaster

Recommended Posts

emcmaster Collaborator
emcmaster
Posted

Is it possible?

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Yup, I think that can happen. The longer you go gluten free, the more extensive the healing. In SOME people I think that the gluten needs to build up for a major reaction. In OTHERS, one crumb will do it.

Every one is different.

Ann1231 Enthusiast
Ann1231
Posted
Is it possible?

absolutely. I have to be extremely careful because I can eat gluten and not feel sick or anything. Other times I eat it and I have a really hard set-back. I know I was glutened last week when I ate out at one meal. I felt fine. Then this week I had gluten and have been suffering since. I sometimes have a hard time staying on my diet because I often don't get symptoms.

emcmaster Collaborator
emcmaster
Posted
  • Author

What if you usually react to hidden gluten, like cc? It seems odd that I could react to a crumb or particle and not react when it was a major ingredient...

blueeyedmanda Community Regular
blueeyedmanda
Posted

Sometimes nothing happens to me and others I spend the day in the bathroom. It is almost like the toss of the coin, it is strange.

Kassie Apprentice
Kassie
Posted
Sometimes nothing happens to me and others I spend the day in the bathroom. It is almost like the toss of the coin, it is strange.

same here

rez Apprentice
rez
Posted

Everyone is so different, I couldn't agree more. I've heard of a lot of people thinking they outgrew Celiac because they had no symptoms. My 8 year old was soooooooo sick and then we put him back on gluten for a challenge (after his tTG came back slightly positive after being gluten free for three months), and nothing happened. It took about a month to the day to start getting the reactions. Now he gets the tummy aches again and he has a mouth FULL of canker sores. It's still nothing like they used to be, although we found out he's lactose intolerant from a breath test. We're keeping him away from dairy or using Lactaid. It seems one of his most outward symptoms was a lactose intolerance. We are having him biopsied next week. This is one important reason I want to find out for sure, because sometimes there are no evident reactions. They say most of the people right now are asymptomatic.

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

Celiac.com Sponsor (A8-M):


Guhlia Rising Star
Guhlia
Posted

Actually, I get MUCH sicker from CC than I do if I accidentally eat a gluten ingredient. For example, I get sick from just a crumb if I'm eating out, but if I sat down and ate a piece of pizza I probably wouldn't get sick at all. When I did my gluten challenge a year and a half ago I made it just over a month eating gluten every single day at every meal and snack before i started to get sick. When I started to get sick I only ever got really fatigued and slept a lot. I never did get the major gastro symptoms. I just couldn't deal with being so foggy and tired. If I get CC'd I generally end up with stomach cramps and diarrhea. Luckily, I don't stay sick for very long, generally not more than 24 hours. I get mouth sores too when I get glutened, but I didn't get any when I did my gluten challenge.

I think that maybe (just my opinion) this is because my immune system is very strong when I'm gluten free and it reacts to CC violently, but when I'm eating gluten it gets kind of overwhelmed and sort of shuts down. That's just the way I see it.

Maybe you react to gluten like I do.

emcmaster Collaborator
emcmaster
Posted
  • Author
I think that maybe (just my opinion) this is because my immune system is very strong when I'm gluten free and it reacts to CC violently, but when I'm eating gluten it gets kind of overwhelmed and sort of shuts down. That's just the way I see it.

Maybe you react to gluten like I do.

This makes A LOT of sense to me. Thanks for taking the time to explain it!

CMCM Rising Star
CMCM
Posted

In one of my celiac books I remember reading about a similar subject....it said the body actually has an adaptation ability....that when you eat gluten the body can over adapt to the "poison" gluten, hence you may not react, but over time you get overloaded and the adaptation ability breaks down. Something like that, it made some sense to me when I read it. I had always been puzzled by never quite knowing when I'd be affected. Sometimes seemingly not at all, other times quite severely.

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 Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest...
    2. trents
      - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test. In...
    3. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covere...
    4. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced. Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well. Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside...
    5. Wheatwacked
      - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,152
    • Most Online (within 30 mins)
      7,748
    SinnamonToasty
    Newest Member
    SinnamonToasty
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Have I got coeliac disease

      By trents · Posted

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
    • trents
      Have I got coeliac disease

      By trents · Posted

      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test.  In addition to IGA tests there are IGG tests which are particularly useful in the case of IGA deficiency.  
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
    • Wheatwacked
      Have I got coeliac disease

      By Wheatwacked · Posted

      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins and minerals.  Low or deficient  Vitamin D is almost always found in undiagnosed Celiac Disease. "Over 900 genes have been reported as regulated by vitamin D"  Possible Role of Vitamin D in Celiac Disease Onset  "The overall prevalence rate of vitamin D deficiency was 41.6%, with the highest rate seen in blacks (82.1%), followed by Hispanics (69.2%)."    Prevalence and correlates of vitamin D deficiency in US adults
×
×
  • 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.