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Mysterious Glutenings
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16 posts in this topic

So, I got glutened over the weekend. Migraine, aches, D. The works. It is so annoying to me when I don't have a clue as to what "got" me. I went through all of the things that I ate and there wasn't anything new really except for a couple of Pamelas Cookies and an Enjoy LIfe chocolate bar. I am not worried about gluten there at all.

The only possibility that I can come up with is when I was in Whole Foods, I was looking at this big end cap of maple syrup and the top shelf had organic pancake mix in boxes and when I picked up the syrup to read the label, the shelf and bottles were covered and sitting in the flour. My hand and coat sleeve had flour or them. I went and washed my hands and didn't think anything of it. On the way home, I ate my lunch in the car. I am thinking even though it may be a far fetched idea that I may have gotten glutened that way.

What do you all do about mysterious glutenings?

I guess I'll start drinking my V8 Fusion and take some Motrin and go to bed. ughhhhhh.

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That type of glutening happened to me a few weeks ago. We were cleaning out the fridge and I touched the flour tortilla bag and forgot to wash my hands, and then ate.... Sick for days. Feel better soon!

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I hate to suggest it, but it is quite possible you are having celiac like reactions to something else. I suppose one of the most common culprits is probably soy. Are you keeping a food diary? You just need basically a list of what you eat (that means every last ingredient) and when, and symptoms, and when. Eventually you'll start to see patterns and can put things together. Barring that all you can do is guess at which what is getting you.

I suppose it is possible you got something on your coat sleeve and got yourself. I ritualistically clean my steering wheel, and other things in my Jeep I touch while driving so I don't contaminate myself. If you haven't done that yet, heck if you used to eat fast food and stuff the whole inside of your car could be a gluten bomb. I have banned gluten in my Jeep. Just like in your kitchen, if you are going to be eating there you need to de-gluten it. Even if it is your car. You may want to consider having your coat cleaned, if it is older and you used to eat gluten wearing it a lot this is probably a good idea anyway. While shopping, the stores here always have wipes, you can wipe down the top of the cart where kids go and put your coat there while you shop.

Get some rest. Remember, the road is BUUUUUUMPY in the beginning but that is okay. It is how we learn. Feel better.

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Good idea about cleaning the cars. They are pretty clean but you never know. As far as soy goes, I have a hard enough time with gluten that honestly I think giving up more foods would be too much for me right now. Maybe in the future I will look into that. I have a dr appt. in a few weeks, i'll run it by him too. Thanks

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I won't lie, giving up more foods is HARD. I cried a little when I got my pseudotumor diagnosis and the doctor was all blah blah blah you can't eat ANYTHING anymore. At least, that is what I heard. Soy was on that list and is actually one of my biggest triggers, within minutes of eating it I will have problems depending on the amount I ate. At first I was like zomg, soy is in literally everything!!! Now, I just don't really eat packaged food, problem solved. Corn... now corn is the one you don't want biting your arse. Soy is nothing in comparison.

I mean, it could be other things too. Beans. Nuts. I don't know what is exactly in those cookies and such. I say do the food diary and see what kinds of patterns pop up. Maybe then you'll have ideas for the doctor too.

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Figured out what it was. I used a tomato paste that contains wheat. Contadina with italian herbs. Next time i'll be more careful! Their other products are gluten free according to their website. This is the only one that contains wheat.

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Happens to the best of us. I did that to myself with soup. At least you know though. Feel better soon!

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Good idea about cleaning the cars. They are pretty clean but you never know. As far as soy goes, I have a hard enough time with gluten that honestly I think giving up more foods would be too much for me right now. Maybe in the future I will look into that. I have a dr appt. in a few weeks, i'll run it by him too. Thanks

I know what you're saying about the soy...BUT there is an article on Celiac.com that talks about how if a product is not "certified gluten-free" and it has soy in it, then it's not safe. This is not because of the soy itself, but because the soy is contaminated with gluten...because it's grown in the same fields as most grains and wheat, transported on the same tractors, processed in the same facilities, etc. The article says that a study tested and found up to almost 3,000 parts per million of gluten in products that were supposedly/labeled as "gluten-free" (20 ppm or less is considered gluten free). So, apparently we can only trust products that contain soy if they are "certified gluten-free", which promises that the product was batch tested or that the soy was grown in a safe place, etc.

Just a thought....I've been so overwhelmed by this too :/. Ugh... just found out in October and I developed Eczema AFTER stopping the gluten and soy. I've never had it before, and it won't go away! Why?!!

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I know what you're saying about the soy...BUT there is an article on Celiac.com that talks about how if a product is not "certified gluten-free" and it has soy in it, then it's not safe. This is not because of the soy itself, but because the soy is contaminated with gluten...because it's grown in the same fields as most grains and wheat, transported on the same tractors, processed in the same facilities, etc. The article says that a study tested and found up to almost 3,000 parts per million of gluten in products that were supposedly/labeled as "gluten-free" (20 ppm or less is considered gluten free). So, apparently we can only trust products that contain soy if they are "certified gluten-free", which promises that the product was batch tested or that the soy was grown in a safe place, etc.

Just a thought....I've been so overwhelmed by this too :/. Ugh... just found out in October and I developed Eczema AFTER stopping the gluten and soy. I've never had it before, and it won't go away! Why?!!

What article? there are lots.

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We are still quite new to this -- my daughter was diagnosed about a month ago with celiac and she has been gluten free for about 4 weeks. Sunday we ate at someone's house and by late afternoon she was feeling horrible, even though the cook was trying to be careful not to cross-contaminate foods. Then again yesterday evening, so I'm thinking that a candy cane she ate at school was the culprit yesterday.

Her symptoms seem to start with her rash itching, then feeling crummy, then stomach aches / cramping. She has a lot of intestinal damage that the doctor said may take up to a year to heal.

I hate these mysterious attacks when you can't pinpoint the culprit.

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LFitts, that has got to be the hardest thing with celiac for me...the not knowing sometimes. Sorry that your daughter got zapped. I usually take my food with me from home when I eat at someones house that way I know for sure what is in it.

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So Gluten-Free...how are you feeling now that you figured it out? As I mentioned in the other thread I think my wife got contaminated this weekend, but she's not getting better. You seem to have a similiar condition so I was just curious how it was going

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notkuroda, I feel like complete utter crap right now. Thanks for asking though. I hope that your wife feels better soon!

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I'm sorry to hear that. My wife's DH is getting worse and she's exhausted. We don't know if that means she is still being contaminated by something or if it's just a carryover. Best of luck

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Updated, she feels like complete and utter crap right now too. She is being glutened and we have no idea what it is. There are a couple of new soaps and shampoos in the house that we will check out, but other than that all she is eating is rice, yogurt, and fruit. This sucks

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LFitts, that has got to be the hardest thing with celiac for me...the not knowing sometimes. Sorry that your daughter got zapped. I usually take my food with me from home when I eat at someones house that way I know for sure what is in it.

We are learning that the hard way! Cross-contamination wasn't even on my awareness until she got hit on Sunday. Now I'm finding out that she probably needs her own toaster (or at least some of those little toast protector thingies) and lots of other changes. I feel like as soon as we get one thing figured out we have to deal with another. I'm honestly feeling guilty & discouraged this week!

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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