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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    2. - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    3. - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    4. - cristiana replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,435
    • Most Online (within 30 mins)
      7,748

    Vivien Armstrong
    Newest Member
    Vivien Armstrong
    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

    • Scott Adams
      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
    • deanna1ynne
      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • 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.