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

Another Reaction Question


Googles

Recommended Posts

Googles Community Regular

I have two questions in relation to reactions. 1) It seems like my reaction to gluten is changing every time I get glutened. This makes it very hard to figure out when I am glutened until I get enough different symptoms to put 2 and 2 together. The reaction time also seems to vary. I was wondering if this happens to anyone else. I have not knowingly eaten any food that includes gluten since going gluten free (or any foods with gluten ingredients at later inspection after getting glutened and rechecking). Because of this I assume that the gluten is coming from cc and some foods at the beginning that were cc'ed and I have sense removed from my diet. I am trying to tack down the cause of the cc. I have a few places it could be happening (home (my roommate eats gluten), or at babysitting- just being around kids who are eating gluten.) However, the changes in reactions makes me think that the reaction times might also be changes. I have had no chance to specifically track back to any gluten exposure. I figure if I could figure out where the cc is coming from, I would be able to stay healthier as I would know where i needed to be more careful. Any ideas?

Thanks.


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



Celiac.com Sponsor (A8-M):



sa1937 Community Regular

...or is it possible you've developed additional sensitivities or intolerances? Or in your case I think CC might be a real possibility if you're babysitting small children and have a roommate who's not gluten-free.

I'm beginning to suspect I'm reacting to xanthan gum. It's just so hard to pin it down to something specific.

lovegrov Collaborator

I have to agree with Sylvia. Why are you certain this is an ever-changing gluten reaction?

richard

Ninja Contributor

My reactions are sort of like that: I typically have the same group of symptoms, but sometimes they go in a completely different order (if that makes sense). I attribute it to my healing gut – things are changing there so of course it could reflect in your symptoms. :)

Also, it's very very easy to get cc'd or glutened by little kids eating gluten. You've got to be watching their little fingers like a hawk, which is mostly impossible as most kids are, invariably, all over the place (doing things they're not supposed to be doing, etc). Same with a shared kitchen. Things get even more difficult when the gluten eaters don't clean up!

MitziG Enthusiast

My reaction time is very consistent- 30-45 min after, which is helpful. I get The big D and vomiting. Foot pain and fatigue and depression follow up for the next few days.

A few times I haven't had any digestive symptoms, just the foot pain and fatigue and depression. Not sure why but my guess is it has something to do with the amount of gluten I got.

Daughter reacts with vomiting, but not until 2-3 days later, which really mmakes it hard to pin down the source.

In the beginning, our reactions were much more variable, but we have an established pattern now. It seems plausible to me that your body is still adjusting and you are going to have some fluctuation. With time you will start to recognize a pattern. Keeping a food diary may help as well.

CC is very likely in yourr living and work situations- the best solution may be wash wash wash your hands! Cupboard doors and refrigerators are always going to have gluten on them! Step up your "isolation" procedures for your food and dishes a notch, maybe keep all of "your" food things in a rubbermaid tote in case your roommate is handling them at times.

Additional intolerances are a possibility, but I would give it a few more months before I started going down that road. Eliminate any possibility of cc, let your body adjust, and THEN see where you are at!

Googles Community Regular

I hadn't thought of another intolerance. However, it does seem to have the same gluten symptoms, but sometimes one or so different and in different orders. For example last Fridady I was really really depressed, but I didn't have GI issues (and they were very mild) until Monday. That left me thinking I was entering a really bad depressive episode really quickly (which with gluten brain I wasn't able to think logically and realize this is not how I enter true depressive episodes). Would other intolerances react my neurological functioning the way that gluten does? I guess I assumed they wouldn't (but don't really know) so I assumed it was all gluten. I really hope it is gluten for the reason I don't want to deal with having to figure out what else I can't eat.

On another topic. I had an ah-ha moment the other day. I was only diagnosed a few years ago. I went to Honduras as a teenager. When I was there I was pretty much gluten free since everything we ate was corn based. I remember feeling so much better on that trip than I had at pretty much any other time. But I didn't think about that the two could be connected until now. I can track back symptoms I've had of celiac since I was a kid, but nothing was investigated at the time.

peaches987 Newbie

It could be xantham gum, as one of the other commenter suggested. One year of being gluten free, and only now am I noticing a problem with xantham gum. I noticed it after baking a batch of chocolate brownies, and again when I cooked up a gluten free cake. My stomach was unsettled and I had pain in my lower intestines for a week after that.

Or it could be just cc, as you suspect. My symptoms tend to be consistent: either a mild stomach ache (unsettled, is what I tell my family) or pain in my pelvis right below the hip bone. It was the same place I had pain before my celiac diagnosis. An example of accidental cc: once traveling in the midst of a vacation, I ate a bag of chips that said "this product does not contain gluten" or something to that effect. It was the one thing in the train station I could find that was supposedly gluten free, but the text on the bag, the way they'd phrased it..it was some turn of phrase I'd never heard before. Not 'gluten free,' but 'is not made with gluten' or something to that effect. Silly me, I assumed that meant the same thing and it was fine. It was only after dinner, when suffering intensely painful gas pain and after rushing to the bathroom, that I grabbed the bag and studied it more closely. It was absent of gluten ingredients, but stamped on the back in bold letters was 'processed in a gluten containing facility.'

Cross contamination is the worst!


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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,991
    • Most Online (within 30 mins)
      7,748

    ZENken
    Newest Member
    ZENken
    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

    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • 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.