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

How Long Into Gfd Did You Start Having Reactions To Cc Or Accidental Glutening?


zus888

  

10 members have voted

You do not have permission to vote in this poll, or see the poll results. Please sign in or register to vote in this poll.

Recommended Posts

zus888 Contributor

I'm trying one last time to get an answer to this question, since a couple of us newbies would like to know. I think I've been very strict about my GFD, and am wondering if I'll ever know when I've been glutened. At what point can I assume that I might have silent celiac?


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



Celiac.com Sponsor (A8-M):



luvs2eat Collaborator

I think I was kind of a weird celiac. The ONLY symptoms I had were unrelenting diarrhea and super loud belly noises... no pain or bloating or anything else. I only had those symptoms for a couple of months before being definitively diagnosed. It was months and months before my diarrhea subsided and I began to feel normal again. Almost a year into my GFD, I slathered butter on a huge hunk of beautiful challah bread I'd made for others and chowed it down! AND HAD NO REPERCUSSIONS!!! None! I had this wonderful idea that I could "plan" a cheat, maybe once a month. I never got to test it out tho, cause the very next time I was accidentally glutened, I was sick as a dog... nausea, wanting to vomit, severe diarrhea, and brain fog. I've never cheated since... and if I'm accidentally glutened, I can count on 2-3 days of symptoms.

So, I guess, for me, it was about a year into the GFD that I started noticing huge accidental glutening symptoms... but I think it was probably way earlier for most.

Hope that answers your question.

zus888 Contributor

Yes, it does! Thanks for the info! That is so strange that your first huge glutening caused no ill effects, but then you got symptoms on accidental ones after that!

I've been going along with your original mindset about planned cheats because I don't think I'll have any outward symptoms and am thinking a cheat every once in a while will damage the system a bit, but not enough to be unable to recover shortly.

It doesn't help that I've been dreaming of cheating.

Thanks for the feedback. It really does help!

T.H. Community Regular

I put down a few days, but it's not quite the truth. I started having glutening symptoms at day 2, but as they didn't involve gut pain for me, I had no clue these were gluten symptoms for months afterwards. It was only when I started having more severe non-gut reactions, like an attack of vertigo so bad I'd fall to the floor, that I started to piece it together.

So in other words, my symptoms were present, but my awareness was not, if that makes sense?

My daughter started having gut symptoms arise at about 6 months into the diet, but her non-gut issues were present earlier, as well. I believe my father was something like 6-9 months gluten free before he started developing gut symptoms.

One thing that might help, especially in the case of asymptomatic celiac disease (in case it ends up being not completely silent) might be looking up mild symptoms that are not gut related so you can see if those might be there, yes? Here's some of the milder non-gut symptoms in my family (4 celiacs here), in case that might help. :-)

Glutening symptoms:

- a drop in frustration tolerance

- an increase in emotional problems. It can be like a case of PMS or, in my daughter's case, a raging panic/anxiety attack.

- an increase in clumsiness. Seriously. Two of us have vertigo, but for quite a long time, my daughter's was so mild that she didn't notice other than being more clumsy for a few days in a row.

- headaches, face tension, or ear aches

- difficulty processes new information

- an insomnia attack for a couple days, or very light sleeping with numerous wakings

- extreme thirst. My guess is that for this one, we're not absorbing water very well along with the nutrients.

- a recurrent pain in a particular place. My daughter's knees and calves start to ache really badly. My lower left back gets this throbbing pain for a few days. That sort of thing.

- difficulty dealing with stress. That kind of overwhelmed feeling when usually, you might be able to cope.

- Senses sensitivity. Noises are more grating, or people/things touching you are unpleasant or 'too much.' Taste is off, smells are off. It doesn't have to be all of them, with us, it's usually one or two senses, and not always the same ones.

- Muscle spasms

- soft tissue injuries can start hurting again. Carpal tunnel flare ups, for example.

That's all I can think of for the moment. :-) Really hope you end up having something that can help you figure out when you get glutened, but that is actually not too debilitating. So it's more like a little bicycle bell of warning rather than a car alarm. :D

ilookthetype Rookie

I put right away, it's within a few hours, and my roommate tends to notice it first because I loose my patience at the drop of a hat (normally nothing bothers me). It'll generally last about 2-3 days with intestinal issues, and then the fatigue and neurological side affects last for about a week.

I finally pegged the timing of the neuro down because i waitress weekends and work in an office during the week and i feel like hell every day but friday and saturday morning before i go into work, then after a few hours I feel like death. I think its from handling burgers and beer all day. which is just incredibly frustrating because i would kill for either of those things on any given day. :(

Karla01 Apprentice

Before I started the diet I was exhausted and lived on Immodium, for 5 years I did this. I have been on the diet since. I have not been glutened since, I don't eat out and I make all of my own food. Myself and my family are very careful. My blood antibody count came down from 336 to 27 last month. I don't think I have glutened myself yet.

WhenDee Rookie

Before I went gluten-free I had extreme constipation. Now my response to it depends on how clean my diet has been and how much or what type of gluten I get. I have an IRL celiac friend who has a much stronger & always-same response to it.

Mine varies from a week of terrible constipation --> to being chained to the potty for a day or two. Honestly, I'm not sure which is worse! What doesn't change for me is feeling tired, irritable, and foggy-headed. But those are symptoms that can sneak up on you.

To answer your question specifically - it was how I found out I had a problem with wheat at all. The doc thought I had a really bad bug and put me on a strict diet. Rice only for 3 days, then slowly introducing salad vegetables. I was feeling better than I had felt in MONTHS, maybe YEARS! Then I had something with wheat in it and was violently ill, right away. So my answer is: I had been gluten-free for about 6-7 days.

There's no such thing as "silent" Celiac's in the long-run. Whether it is diarrhea today or colon cancer tomorrow - eventually it makes some noise. I feel grateful, actually, that mine makes such a statement NOW, because it would be awfully hard to be good if it didn't.


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



Celiac.com Sponsor (A8-M):



Archived

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

  • 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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,243
    • Most Online (within 30 mins)
      7,748

    Dorfor
    Newest Member
    Dorfor
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.