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

Helena

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Helena Contributor
Helena
Posted

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"?

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Kaycee Collaborator
Kaycee
Posted

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
Guest cassidy
Posted

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
Ann1231
Posted

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
SchnauzerMom
Posted

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
Helena
Posted
  • Author

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
AZ Gal
Posted

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!

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jamrock Rookie
jamrock
Posted
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
imagine22
Posted

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
Guest Kathy Ann
Posted

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
Rebecca47
Posted

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
Yenni
Posted

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
Guest mmmom
Posted

Hi,

Opps! I already did something wrong!

Guest mmmom
Guest mmmom
Posted

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

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      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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