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

I Can't Wrap My Head Around This...


Pandoranitemare

Recommended Posts

Pandoranitemare Apprentice

Essentially my issue is this...

I did the gluten challenge, and had my blood test, now I am having to wait till after the bank holiday weekend to make an appointment the doctor has asked me to make to discuss the results. I am expecting the worst, as I was told I would not be called in if they were normal....So I sort of feel like I am on a 'gluten count down'. I don't want to stop just yet in case they want to do any further tests (which would require me to still be eating the stuff), but I feel my gluten eating days may well be numbered....

Whilst I was doing the gluten challenge I hated it, and only ate what I had to. I generally am quite a healthy eater, yet yesterday I was compelled to get a Chinese takeaway, I knew it would make me feel horrid, and its something I would only eat once in a while, but I felt like I had to get one in maybe before it was off limits forever!

The same compulsion made me buy a bag of those soft, fresh cookies from the in store bakery at the supermarket at the weekend.

I suddenly feel like I need to have 'just one more' of the things I do like, that maybe I only eat occasionally... because there is some deadline looming which means I will never have those things again.

What I can't get my head around is the fact of one potentially one day very soon a lot of foods I have been eating are likely to suddenly be off limits. It's the same food, and all that will have changed is knowing what the cause is, as opposed to guessing and actually having a name for the reason. It is somehow driving me to make myself feel terrible in trying to have the things I enjoy one more time all in a short space of time....and of course I am aware that I am also likely to be causing more damage with a gluten overload, as it is way more gluten than I would normally even have, as my diet is normally not even that high in gluten!

I am being an idiot...and I know it, but I am finding it hard to be rational....


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



Celiac.com Sponsor (A8-M):



Mateto Enthusiast

I know very well how you feel! Like you, I am awaiting diagnosis. Like you, I have been eating foods PACKED with gluten, because the thought of them being "off-limits" is frightening.

For me it's the chocolate. Well, it was. I binged last week on chocolate, because I know I might not be able to have it any more. That was last week. THIS week it's going to be baked goods, I can guarantee you that. I'm already started on a chocolate cake we had for dessert Easter Sunday, and my Mom let me keep for leftovers :P It's quite big, quite delicious, very moist, and quite very well sickening <_<

Actually, craving baked goods and sweets is a small symptom that you might have coeliacs, but if you find out you DO (and I for that matter) have coeliacs, just think of those foods as poison. Because for us, they are! We can literally die. Now no, not right away, but it's not worth the pain we can go through.

Don't think yourself an idiot, that doesn't help. I started to think like that last week, but got over it when I joined this forum, and read how to deal with this.

pricklypear1971 Community Regular

I can only say I've been there and I understand.

If its any consolation (in a sick, twisted way) if you do have an issue with gluten, and it does invoke symptoms like D or C or nausea - you will probably NOT have a hard time staying away - once you make the correlation. Because when it becomes clear, it typically becomes VERY clear. And you will avoid it like the plague.

As an example: Junior Mints were my safe go-to treat starting gluten-free. I ate a ton of Junior Mints. Now, after getting semi-sick on them once, very sick a second time, and pretty sick on another mint product - I am steering very clear of mint flavored food. My reaction isn't from gluten, I don't know WHAT its from, really, but the association has been made abundantly clear to me. And while I hated the thought of losing reliable gluten-free junk food (hah!), the consequences became too unpleasant to ignore.

You'll get there. I promise. I look in a bakery window and resist the urge to run away. Not because I want to eat the stuff, but because I just don't want to be near it.

It's a process, a grieving process, I think.

Marilyn R Community Regular

I don't know if UK doctors make you go for an endoscopy to confirm the blood test or not. If so, you theoretically have a reason to justify continuing to enjoy your favorites until you have the procedure.

Your post made me wonder what I'd want if I knew it would be my last meal. I thought Lobster or Stone Crab with Drawn Butter, Filet Mignon, twice baked potatoes, or stuffed peppers or mushrooms, a nice light salad with good cheese, and some kind of really good chocolate for desert. Like dark chocolate ice cream or a flourless chocolate cake or the chocolate cream pie I make in a meringue shell. I'd have fresh red ripe berries along with the chocolate.

That made me laugh because my "last meal" would be lucious, but gluten-free. For me, the cravings took under two weeks to resolve. But it took longer to get over food envy. :(:(

beebs Enthusiast

I didn't really get the chance to do the whole 'just one more' thing, I wish I did, I was really looking forward to a gluten challenge so I could eat all of my very favourite gluten laden foods for 3 months. But it does get easier, eventually you'll find cookies that are just as nice, and the chocolate thing? Most chocolate is gluten free, even the nice ones, just not the ones with cookies and stuff in them. I've found cheese corn chips which are gorgeous and salt and vinegar chips and all kinds of things. Sometimes its like - I just don't even notice anymore. Its a PITA when you are sick or tired and just want to do takeaway - but usually Indian and Thai are gluten-free - so that is ok.

love2travel Mentor

Believe me, I get it. I made myself a list of 70 some things to have for the last time and did not stop eating gluten until the list was done. It was tough because I was not feeling ill from gluten at all! And a year later, strictly gluten free, I feel no different. The odd time I wonder what it would be like to try some gluten but I would never, ever do it. I'm scared of the damage it would do to me internally even if I did not feel ill. In the beginning it was difficult to stay motivated, though I did. I quit cold turkey right after my last bite of croissant. (I was diagnosed by bloodwork and biopsy as I was in denial and just could not believe I had it. Testing was done as one sister was gluten intolerant so I thought I may as well get tested, feeling there would be no chance of me having it. Wrong!)

Now I realize that I can make most of the 70 some things wonderfully anyway. Well, except croissants and doughnuts and I have not yet made gluten-free phyllo. And really delicious chewy bread.

If you do have celiac, just know it truly does get easier. Trust me on this. Trust all of us on this! :) We're here to help you along.

Mateto Enthusiast

I didn't really get the chance to do the whole 'just one more' thing, I wish I did, I was really looking forward to a gluten challenge so I could eat all of my very favourite gluten laden foods for 3 months. But it does get easier, eventually you'll find cookies that are just as nice, and the chocolate thing? Most chocolate is gluten free, even the nice ones, just not the ones with cookies and stuff in them. I've found cheese corn chips which are gorgeous and salt and vinegar chips and all kinds of things. Sometimes its like - I just don't even notice anymore. Its a PITA when you are sick or tired and just want to do takeaway - but usually Indian and Thai are gluten-free - so that is ok.

Most chocolate IS gluten-free, however, in my own stupidity, I've cross contaminated my supply PLUS what I was given for Easter. Also, I don't want to buy more because it would be a waste of what I have...do Cadbury come from a gluten-free factory? I must ask them!

Anyhow, you are SO lucky you NEVER had the chance to do the "Just one more" thing. It's annoying, and actually becomes addictive. You gain a lot of water weight, not fat-weight, but water weight from the glycogen storage or whatever it is.

Cheese corn chips sound DELICIOUS, what brand are they, or are they homemade?


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



Celiac.com Sponsor (A8-M):



Pandoranitemare Apprentice

Thank you all so much, your replies have made me feel so much better :)

I made the appointment to get my blood test results ..but as my GP is on holiday I can't get the results until the 24th of April! I will be trying for a cancellation appointment the week before, so fingers crossed though.

In the meantime, what you have all said has made a lot of sense, and helped to put things into perspective for me. Whilst I will continue to eat gluten (just in case of any further tests...I don't want to jump the gun and go gluten free and have to do another gluten challenge) I have been feeling the effects of my over indulgence, and I know I need to scale thing back a bit.

I still have a few gluten treats I would like to have before 'D Day" but maybe it is good that I have some time to think about the whole process and most likely accept that it is the gluten which is making me sick and that I need to take this time to say goodbye to it...

It means a lot to know that others have been through similar, and come out the other side, healthier, stronger and better for being gluten free :)

Thank you!

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 SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    2. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    Moooey
    Newest Member
    Moooey
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.