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

Reacting To Small Amounts Of Gluten After Going gluten-free?


Helena

Recommended Posts

Helena Contributor

I've been sick twice during the holidays. In both cases, I had eaten food prepared by others (so there would be a possibility of cross contamination I suppose.) But there's also the chance that I was having an allergic reaction of some sort to something other than gluten (I do have *a lot* of allergies.)

I'm wondering how plausible it is to suspect gluten in my case. I had assumed that I would never react in an obvious way to small amounts of gluten because I wasn't severely ill like a lot of people here. On the other hand, I have noticed some change in . . . um . . . my bowel habits since going completely as opposed to almost gluten free. So although I never did go through with the biopsy, I suspect that my villi have been healing---and I know that people often become more reactive once they get better. I've only been gluten free since September . . . so for almost four months.

Has anyone here gone from having "mild" reactions to gluten to reacting to minute amounts from cross contamination? If so, when did you start having trouble with getting "glutened"?


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



Celiac.com Sponsor (A8-M):



Kaycee Collaborator

Helena, yes I noticed pretty soon after being gluten free, each time I had been glutened. And yes, I do react to the smallest amount of gluten, even within a few days of starting the diet. Even now after being glutened, I can look at what I have been feeding myself and would never guess where the gluten came from, but the reactions are definately gluten related.

While I was eating gluten I would say my reactions were mild, or I thought they were normal for me, but now I would say my reactions are worse than before as I know what is going on and where it is leading too.

I react to different things different ways. Gluten gets me in the stomach with crampy feelings, blowing off which can be smelly and followed by horrible smelly D over the next few days (too much information, sorry), and terrible tiredness, feeling close to tears and dare I say brain fog, like my husband delicately puts it, "You're not here". If it is just plain diarhoea for me without the offending smell it is possibly something else. But I know when I have been glutened for sure, as it is not nice for anybody.

Some things I eat keep me awake at night or gives me a cough it could be soy, but I don't get the other symptoms like when I have been glutened. I think I react similarily to gluten with peanuts in that I get smelly diarhoea, but I have stopped eating peanuts.

I don't know if this helps, but as you go further down the gluten free path it gets easier to know how you react to other things that disagree with you. For me, I react the worst to gluten. The other intolerances are mere irritations, but having said that, they are a pain as well for me mentally.

Cathy

Guest cassidy

Many, many people find they react to very small amounts after going gluten-free. It is frustrating because you seem to get more and more sensitive but your body must really like not having any gluten at all. It is hard to say what happened since you have other allergies, but I know I can personally tell a difference between being glutened and eating other foods that don't agree with me. So, if you suspect it was gluten, I would think that it was.

Ann1231 Enthusiast

I'm noticing bigger reactions to the smallest amount of gluten now. I think I got glutened yesterday by a very small amount of seasoning. I used to be able to eat it (before gluten-free) but now, twice, I've had a bad reaction. I think I'm much more sensitive now.

SchnauzerMom Rookie

I seem to be more sensitive too. At first I didn't think cross contamination was anything to be concerned about but now I think I need to pay attention to it.

Helena Contributor

Thanks, everyone--I won't rule out gluten, then. There was definitely no gluten in the ingredients, but around Christmas when all five family members are home for the holidays my mom's kitchen is gluten-filled.

My allergic reactions really vary and can be unpredictable. I'm anaphylactic to some things (which for me means throat itchiness, vomiting, major hives, face swelling, airway swelling) . . . but I just get hives and/or throat and inner ear itchiness with other allergens. Some foods in the latter category also trigger reflux . . . and there are some foods which cause reflux only (but I'm not sure if that is a true allergic reaction or not.) D is also potentially allergy-related.

So it is hard to pinpoint what it could be . . . but because both reactions involved a GI reaction it could very well be gluten. The one night I woke up at 3:00 a.m. in pain . . .seemed to be bowel pain + I had D. My inner ears were itchy too.

The other night I wasn't feeling so well after dinner---when I woke up my stomach was off. D before breakfast and after breakfast nausea. (I didn't actually throw up, but was wretching and gagging over the toilet.) I don't have a 'weak stomach' . . .this is very unusual for me.

I don't think I'll ever know . . . unless these reactions continue which I hope they don't!

AZ Gal Apprentice

Thanks for the post, I was just wondering the same thing. I've no idea how much will make me sick and I can only come up with possible trace exposures over the past few days...hmmm.... Good luck with all of those allergies!


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



Celiac.com Sponsor (A8-M):



jamrock Rookie
Thanks, everyone--I won't rule out gluten, then. There was definitely no gluten in the ingredients, but around Christmas when all five family members are home for the holidays my mom's kitchen is gluten-filled.

My allergic reactions really vary and can be unpredictable. I'm anaphylactic to some things (which for me means throat itchiness, vomiting, major hives, face swelling, airway swelling) . . . but I just get hives and/or throat and inner ear itchiness with other allergens. Some foods in the latter category also trigger reflux . . . and there are some foods which cause reflux only (but I'm not sure if that is a true allergic reaction or not.) D is also potentially allergy-related.

So it is hard to pinpoint what it could be . . . but because both reactions involved a GI reaction it could very well be gluten. The one night I woke up at 3:00 a.m. in pain . . .seemed to be bowel pain + I had D. My inner ears were itchy too.

The other night I wasn't feeling so well after dinner---when I woke up my stomach was off. D before breakfast and after breakfast nausea. (I didn't actually throw up, but was wretching and gagging over the toilet.) I don't have a 'weak stomach' . . .this is very unusual for me.

I don't think I'll ever know . . . unless these reactions continue which I hope they don't!

I thought I was alone with anaphylatic things that have my family members rushing me to the hospital all hours of the night and early morning, since I joined this forum yetserday, I have learnt so much about controlling all my allergies. You guys have a good thing going on here and I feel like a child that is being led in the right direction by all the experts. Thanks alot I now feel like I am not alone.
imagine22 Contributor

I have had this problem too. I was practically symptom free (fatigue and diarrhea occasionally ie once a week) and i didnt think anything was wrong with me but was routinely tested for celiac because i was ill in my last pregnancy not due to any gastro complaint i had.

Yet now after being gluten-free and feeling soooooooooo much better - i didnt know what normal was - i get violently ill from being glutened. Symptoms are the same as kaycee described. its really frustrating and others dont really understand as they think ' you were just fine eating it for years without even knowing so whats the big deal if you use our toaster!"

Guest Kathy Ann

If a person initially gets more sensitive to accidental gluten than before they went gluten free, is that a permanent situation? Or do you eventually even out and get more reasonable reactions?

Rebecca47 Contributor

Hi all, I myself find that I get sick with the smallest amount of gluten too. I can tell with in about 5 minutes after I eat sometimes even sooner than that. I now drink lactose free milk, it seems that I can't handle milk either. Other dairy hasn't bothered me yet just milk. Went to dinner last night, forgot about milk ordered a milkshake and was very bloated after and not feeling well, but it didn't last to long couple 2 or 3 hours ? Now that I think about it, I may have been gluten also and that is why I have felt terrible all day and I dadn't connect the dots. BRAIN FOG !!!! Sorry if I went on and on. Thanks for listening. :rolleye :ph34r: s:

Yenni Enthusiast

I react to small traces of the stuff I am intolerant to in food. Like if a product is made in a factory with gluten/casein/soy (in my case) but the food itself is supposed to be free from it.

  • 4 weeks later...
Guest mmmom

Hi,

Opps! I already did something wrong!

Guest mmmom

Hi,

I am new to this board so if I do something wrong let me know! I am so glad I found this I thought I was losing my mind! I thought the cross-contamination would never be a problem for me since I have eaten gluten all my life! However, after 1 week of attempting to be gluten free I found myself in pain and having the tingling sensation in my mouth, brain fog, and tremors after eating a piece of gluten free bread toasted in the same toaster I toasted it yesterday. It makes since that our bodies like what it feels. Does this reaction get less severe or does it stay that way. I get very ill, heart palpatations, extreme breathing difficulties (have went to ER and called 911) after eating a piece of wheat bread last time! (diagnosis the hard way!) I can't go back on the gluten for a biopsy it is too dangerous. Will this get less sensitive as time goes on? It is very scary!

Mary

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. - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    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

    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • 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.