Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Feeling So Discouraged


scouter99

Recommended Posts

scouter99 Newbie

I am so discouraged right now. I have been eating gluten and dairy free (and coffee free which is harder to give up than EVERYTHING else) for about 4 weeks now and after about 2.5 weeks I was finally feeling better for many days in a row and then suddenly I feel terrible again. Gassy, crampy, bloated and I cannot find what I did to cause it.

The more I read the more discouraged I get. I guess I don't want to spend the next months and months trying to feel better... but if it could be corn, nightshades, fructose, soy.... on top of the gluten then my goodness will I ever figure it out?? Then on top of that do I really have to worry about non-stick pans if I wash them well and the cutting board.... everyday it seems I find out something new that could cause c/c.

It took me so many hours of research to figure out how to eat gluten free, then dairy free... and the prospect of having to cut something like soy or corn out on top of that makes my head spin (not to mention what the heck do I eat if I eliminate those)!! I have 4 small children involved in activities and school and a full time job.... I can't even begin to find the time to learn about all this and figure out what I can eat and what I can't.

I guess I'm just wondering... how do I ever figure this out? I just need to be talked down from the ledge because honestly, this is getting to be too much.

Another question- when did you decide you needed to eliminate more.... because from what I've read I might be seeming to start and stop because I am still healing which can take a long time. So is it that, or is it that I haven't gotten all the problem foods out yet.

I know you all read this stuff over and over again from us newbies, and I tried to read what others posted to glean some of what I'm looking for... but I still had to get this off my chest.

Thanks,

Denise


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



Celiac.com Sponsor (A8-M):



starrytrekchic Apprentice

Keep in mind that celiac reactions aren't always immediate. You may have eaten something a day or more before the symptoms set in, and once your body starts reacting, it might feel like it's reacting to everything you eat for several days (or even up to a couple of weeks.)

I'm always hesitant to recommend someone remove more from their diet, especially so early on when you're still learning the diet. Why don't you list everything you ate in the days leading up to getting sick again? Someone might spot something.

T.H. Community Regular

So sorry you're feeling so down!

Really, I very much understand how you feel. I've only been gluten free for a little over a year now, and I remember the first 2-3 months were just overwhelming. Exactly as you said: it seems like there's something new to be aware of/worried about around every corner.

I know this is going to sound trite, but yes, it does get better. (yes, yes, that's right, slowly come down from the ledge. ;) ) I'm not saying it's easy, but it's, well...kind of like having kids.

At first, it seems like there is so much to learn and pay attention to and figure out with the new babies, but eventually it becomes normal. Not easy, because I don't think raising kids is ever easy, really, but that doesn't mean that it's not worth it. And you don't stay in that 'head is spinning from all this new stuff' stage forever.

Same with going gluten free. It may not be as easy as eating gluten was (although may do find it so, after they adjust), but it is worth it, and the stress of all this newness will fade as you figure it out.

Some things that helped me?

1. Anything that helped me feel more in control. I started keeping a food journal, where I tracked what I ate, when (and from what brand, in case one is contaminated), and how I felt. That helped me find some problem foods.

2. I engaged the kids and started a blog. Not one for commercial use or anything, just something so I could track how things were going, and focus a bit on the food. We tried new recipes, took pictures, thought of new things to do - it became something the kids and I could do, an ongoing project, and helped me focus on what I CAN do instead of on the things I was having problems doing.

3. When I would accidentally get glutened...I'll be honest, it was often very discouraging. So sometimes I'd have these little uplifting messages on cards, reminding me why I was eating this way. Sometimes helped, sometimes not...but I was willing to try anything at that point!

For me, I started getting very ill within days of going gluten free, so it was clear right away that I needed to ditch a lot of foods. But in the end, I discovered it was almost all just minute traces of gluten, with just minor allergies involved. I know people have different experiences, but from what I've seen, if you are feeling better and you start feeling worse? I think it's usually that you got something bad in the diet, or you are reacting to something bad that you didn't react to before.

Simple eating for a little while can help. Just fruits and veggies, maybe a grain or two. When you find a safe diet and add stuff in, it's been easier for me than trying to juggle lots of foods and then try to figure out WHAT just made you sick out of everything. It's not for everyone, just what worked for me. :-)

good luck, I hope this smooths out for you very soon!

Roda Rising Star

I would look at possible cross contamination in your home first. Do you share condiments? Are you using old scratched teflon/nonstic pans? What about your bakewear and cutting boards? Are you using wooden spoons you used before? You will need a separate toaster and colonder, probably will need to replace cutting boards if you cut bread on them, and either have all your condiments free of contamination (like dipping in the butter/pb, jelly, mayo jar with a knife and putting said knife on reg. bread then sticking the knife back in the jar) by getting squeeze bottles to share or get your own and mark them. Do your kids eat gluten filled snacks? If so they could be contaminating you. They also could be touching surfaces with their gluten contaminated hands and you could touch the same surface and potentially contaminate yourself by touching something gluten free without thinking to wash first. With small kids you might limit their gluten consumption to just one area in the house and make them eat it at the table. Either that or give them naturally gluten free snacks like cheese sticks, veggies/fruit, etc. Do you all eat the same meal or are you cooking separate? I find it easier to cook and eat all the same meal. Most of our meals we ate before were by default gluten free or made that way easily by replacing it with a different brand of something etc. It is overwhelming at first and takes some time to get used to. Hang in there. Oh do your kids play with play doh? I got rid of that and got gluten free since I like to play with my kids with it. Turns out just last month my youngest started gluten free since his routine screening came back postive.

scouter99 Newbie

Roda, yes, my kids eat gluten filled snacks and I fix them something different at dinner from myself (usually we share the main protein dish but then I fix them a pasta or cheesey potato side or something like that, or put butter on their veggies and then I fix myself something different). I try to wash my hands a lot. I also did replace my toaster and peanut butter jar, but did not replace the pans or cutting board.... oh man there is so much to think about! Thank you for that suggestion, I might have to go shopping <_<

Denise

I would look at possible cross contamination in your home first. Do you share condiments? Are you using old scratched teflon/nonstic pans? What about your bakewear and cutting boards? Are you using wooden spoons you used before? You will need a separate toaster and colonder, probably will need to replace cutting boards if you cut bread on them, and either have all your condiments free of contamination (like dipping in the butter/pb, jelly, mayo jar with a knife and putting said knife on reg. bread then sticking the knife back in the jar) by getting squeeze bottles to share or get your own and mark them. Do your kids eat gluten filled snacks? If so they could be contaminating you. They also could be touching surfaces with their gluten contaminated hands and you could touch the same surface and potentially contaminate yourself by touching something gluten free without thinking to wash first. With small kids you might limit their gluten consumption to just one area in the house and make them eat it at the table. Either that or give them naturally gluten free snacks like cheese sticks, veggies/fruit, etc. Do you all eat the same meal or are you cooking separate? I find it easier to cook and eat all the same meal. Most of our meals we ate before were by default gluten free or made that way easily by replacing it with a different brand of something etc. It is overwhelming at first and takes some time to get used to. Hang in there. Oh do your kids play with play doh? I got rid of that and got gluten free since I like to play with my kids with it. Turns out just last month my youngest started gluten free since his routine screening came back postive.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,163
    • Most Online (within 30 mins)
      7,748

    Estee
    Newest Member
    Estee
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...