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

Does An "accident" Mean All Work Done, Lost?


Alexolua

Recommended Posts

Alexolua Explorer

By accident, I mean I have no clue what happened. Wednesday was supposedly 5 weeks Gluten-free Casein-free, but ugh.. I was feeling awful. Had a reaction to something I ate.

Only two new things I had that could have caused it, were some Glutano's Petzels (maybe the yeast? lol) and a little Rice Dream's Orange Vanilla Swirl Icecream. I know the plain Vanilla isn't safe, and it's labelled so on the containner, but the Oranga Vanilla swirl didn't have anything saying it wasn't, unless they decided not to mark it, grr!

But, my main question.. since I had an icky reaction to something, does that mean all the work I put in trying to be Gluten-free Casein-free for the past 5 weeks has been ruinned? I don't know, and hope not!

Though, Friday night started up intestinal cramping in the large intestines, which has continued into today so far, which doesn't feel good.. and pretty much, looking at this week, I might even say I'm worse than when I started going Gluten-free Casein-free.. so, why should I even bother with the diet?? Sigh.. was hoping by now, to be noticing some improvement.

Also.. anyone know of any really knowledgable and good Celiac Doctors in the Central New York area (near Syracuse)? My doctor doesn't believe I have celiac disease, and has never heard of Enterolab, so.. be nice to find a doctor who could be more helpful!

Thanks all. =)


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



Celiac.com Sponsor (A8-M):



burdee Enthusiast

After my bad reaction with Rice Dream's Vanilla flavor, which gets cross contamination from other dairy products at their factory, I avoided the orange vanilla swirl flavor which I assumed used the same 'vanilla' Rice Dream product in that vanilla/orange mix.

I don't think your recovery progress is 'ruined'. Every bit helps. ;) But I found the longer I went gluten-free/CF the harder 'slip' symptoms hit me. I'm just ending my 5 day recovery from some gluten contaminated dried onions used in my homemade quacomole (which I made last weekend and finished on Tuesday night). I ate a little of that for 3 days and spent the next 2 days working up to my 'peak' day of excruciating abdominal cramping and bloating and the next 2 days coming back to normal. Maybe I get so used to not having symptoms that symptom recurrence is more of a shock than when I had them all the time. :o

Chin up. It does get better! ;) And keep gluten/casein sleuthing. :)

BURDEE

flagbabyds Collaborator

STICK WITH THE DIET!!!!!!!!!!!! a mistake doesn't mean you are back at the begining, defenitly not, but you now know how sick you get when you get gluten or casein, more the reason to stick to the diet, when you feel so good and then suddenly you get cross contamination, you will get really sick because your body has adjusted to the diet and then suddenly it is like i don't want this in my body so i am going to everything I can to get it out, hence forth the more violent reaction, if you have the disease you need to stick to the diet and you will start to feel better but only if you really adhere to the diet and get no cross contamination.

Alexolua Explorer

Thanks you two. And yeah, not giving up on the diet, I just haven't felt better at all yet, even before this. Kinda despressing, lol.

burdee -> Yeah, I noticed how their Vanillia was made on the same machines as dairy products, grrr.. how can they claim to call it dairy free?? But guess I was being stupid to think that the vanilla in the orange swirl would be okay, despite them not having the warning on it too. Oh, and at the GFCFdiet website, they do say their Rice Drink isn't safe, think you weren't entirely sure in another thread?

Just annoyed too. First time I tried to go gluten-free (was rather clueless, lol), seemed like I might have been getting better, slowly. Though went back on gluten for biopsies, no real problems.. now that I'm being serious with it, trying to be Gluten-free Casein-free, just can't say I see much results yet. But, maybe having a bad reaction is a good sign then? Never use to have any noticable reactions to gluten (slowly fell into poor health), and only noticable to casien if indigesting like a glass of milk. Piece of cheese wasn't enough, lol.

flagbabyds -> Thanks. I figured though if my body was adjusting to the diet, it'd show signs of healing too. Guess maybe I was wrong there, and the healing may take longer.

I read somewhere, that those intolerant to gluten are more likely not able to handle yeast either? That's a concern too, because I really haven't had much of anything with yeast in it either.. and with how I'm feeling, really don't want to test to see which product was the bad one, lol. (Note to self, try only 1 new product per day!!)

Thanks again you two, and sorry if I'm rambling, don't really know any other place I can ramble on this subject! =)

judy04 Rookie

Dear Alex,

Please don't give up on this diet! It took me 6mos to even

start feeling better! I guess I had been so sick for so long,

it just takes longer. I still can't tolerate dairy but soy milk

seems ok, I just had a bowl of strawberries and blueberries

with milk. I could not have done this a year ago. Hang on,

it's worth it!!

Alexolua Explorer

Eep, really Judy? How were your symptons? Mine started up about 10 years ago, and just got worse and worse and worse! Been pretty worse for some time now. So guess that means healing could take awhile, lol.. just wish the doctor I'm seeing would think that too! He doesn't though.

And no worries, not gonna give up on the diet, I just wrote that in frustration, forgot to mention I wasn't really going too. =D

Thanks!

celiac3270 Collaborator

I've been about 5 months on the diet -- and my abdominal pains are still coming -- ugg.......I thought it'd be 1-3 months at the beginning, then I read how it can take some people a year........ick......I'm going to a new, more knowledgable doctor to discuss the possibility of SIBO..........(small intestine bacterial overgrowth)......actually, my appt. is tomorrow........I hate feeling sick.....it's been 6 years pre-diet (since I was 7 years-old) and nearly 1/2 year on diet....this stinks.......I just wanna feel normal; and by now I've forgotten what normal even feels like.

Oh, by the way, Molly is right -- one mistake does not set back all your progress.......after all, if it did, you'd only need to eat a tiny bit of gluten before a biopsy. No, it takes at least a steady month of gluten to knock you back to square one...don't worry about that.

-celiac3270


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



Celiac.com Sponsor (A8-M):



gf4life Enthusiast

Alex,

Keep in mind that there was probably dairy (and possibly gluten, since Rice Dream is not gluten-free) in the Rice Dream "ice cream". But also that when you have one food sensitivity you can easily have others. My three kids and I are gluten and dairy intolerant, and one of the things my kid's doctor mentioned was the possiblilty of them being intolerant to SOY as well. They seem to be fine on it, but the pretzels you had are made from soy flour, so if you try them again (after your current stomach problem is better) and you get a stomachache again, then you might want to consider soy as a problem. Or maybe you already know it isn't a problem. Do you drink soy milk?

Also, 5 weeks is not very long, and you need to give yourself time to heal. Go easy on your digestive system for a while though, and try to stick with simple foods that are easy to digest.

God bless,

Mariann

Alexolua Explorer

celiac3270 -> Wow, guess you'd like to smack me for complaining about 5 weeks, while you've been at it for 5 months? =)

Though I can understand your feelings, I've been dealing with my problems for about 10 years now. Least I've hopefully found the cause, just need to get better now!

And great point about the biopsies! Thanks.

gf4life -> It was pointed out to me that the Rice Dream drink isn't gluten free (oops there!). Though seems at least like the "icecream" is. So maybe there was dairy in their non-dairy product.. grrr, that should be illegal!

Pretty sure I'm okay with Soy. I have a Soy Margarine I use, and haven't noticed any problems like I had. Though I'm still wondering if maybe it was the yeast, that's possible right? Because looking at the products I eat, that's the only one that has had yeast in it. Though yeast is naturally in the body too (I believe).. so be kinda odd to be intolerant of it.

Though I do think I have an allergy or something to nuts, so have been avioding eating them, but have been eating products that might have trace amounts. Dumb?

And thanks, my doctor seems to make it sound like I should be feeling better now. So that doesn't help, lol. =)

  • 3 weeks later...
LeeV Apprentice

My daughter is going through the same thing. She's been on gluten-free diet 2 months now. She's disabled so I prepare all her meals. She's back at school and taking lunch w/her. She has an aide and so I would know if she has sneaked anything she shouldn't have.

I've been really careful what I give her, cook all our meals gluten-free for the whole family. Today she finally had a normal bm and then about 1/2 hour later she had diarrhea! I'm so frustrated not knowing why.

I'm not giving her any milk products, not even her Wishbone Ranch Dressing which she loves, no ice cream, cheese, etc.

I'm reading that it gets better and I hope it does. I'm not one to give us but this is really really difficult.

Lee :unsure:

ryebaby0 Enthusiast

Hang in there, everyone. My son has been gluten-free for almost 10 months and still occasionally has a bad day. (He had some Rice Dream Vanilla swirl....hmmmmm) We try really hard not to measure the time gone by -- it only emphasizes the feeling of not getting anywhere. We had "good days" "bad days" and then my oldest invented the term "going forward days" for ones that didn't seem to be either. I kinda liked that feeling -- even if it wasn't a great day, or if we had escaped a bad day (not enough food, not enough variety, feeling lousy) we were still "going forward". I think doctors tell you (and GIG does too!) a few weeks and they just are measuring marginally improvement -- not how long it will take to sort out all the allergies, intolerances, or other issues the celiac has masked or created.

Joanna

Alexolua Explorer
He had some Rice Dream Vanilla swirl

Does he need to aviod Dairy? The Vanilla swirl isn't dairy free, even though they claim it. The drinks though, aren't gluten-free.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Rogol72 replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    2. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    3. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    5. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. 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:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.