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

In Limbo And Have No Willpower


chocolatelover

Recommended Posts

chocolatelover Contributor

I'm completely in limbo right now--my first GI screwed up all my tests (including only taking one biopsy when he did my endo), so I'm waiting to see a new one, but can't get in until March 20th.

I am waiting for my enterolab results, but it will probably be at least another week (they received my sample a week ago yesterday), if not more before I get them. I did the full screen panel, including casein (think that may be part of my problem).

In the meantime, I'm completely in limbo about what to do. I don't know if the new GI will want to repeat any tests, so I don't know if I should keep eating gluten or not. For right now I just can't seem to control my cravings for all the things I shouldn't be eating. The more I eat, the more depressed I am about it and the worse I feel, but I can't seem to stop myself from eating all the things I shouldn't. Or maybe I should keep eating them so I can be re-tested by someone who so obviously isn't an idiot.

I'm definitely feeling like I'm wandering in no-man's land with very little guidance and no answers. I'm tired of this and very frustrated. Is anyone else feeling like this (or has felt like it in the past)? What are you doing/did do about it?


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



Celiac.com Sponsor (A8-M):



Cruiser Bob Newbie
I'm completely in limbo right now--my first GI screwed up all my tests (including only taking one biopsy when he did my endo), so I'm waiting to see a new one, but can't get in until March 20th.

I am waiting for my enterolab results, but it will probably be at least another week (they received my sample a week ago yesterday), if not more before I get them. I did the full screen panel, including casein (think that may be part of my problem).

In the meantime, I'm completely in limbo about what to do. I don't know if the new GI will want to repeat any tests, so I don't know if I should keep eating gluten or not. For right now I just can't seem to control my cravings for all the things I shouldn't be eating. The more I eat, the more depressed I am about it and the worse I feel, but I can't seem to stop myself from eating all the things I shouldn't. Or maybe I should keep eating them so I can be re-tested by someone who so obviously isn't an idiot.

I'm definitely feeling like I'm wandering in no-man's land with very little guidance and no answers. I'm tired of this and very frustrated. Is anyone else feeling like this (or has felt like it in the past)? What are you doing/did do about it?

Yes - on and off all the time for the past 7+ years of learning how to operate this new body - with no operators manual. Here's a short story (true) to help you get that glass half full again :)

It took me 3 years to break my chocolate cravings - knowing that if/when I ate chocolate I'd get a big zit on my nose that would stay at least 3 weeks. My mom's comment on the chocolate was "so what, you've already eaten a lifetime supply of chocolate anyway". Once I broke the craving - 99% of my cravings are gone, I hardly ever crave sugar anymore and I can eat small amounts of chocolate again (my esspresso beans and sometimes PB-Choc Chip cookies).

Here:

Baked Chocolate Pudding:

1 cube butter

2 eggs

1 Tbls Cocoa Powder-Heeping

1 Cup sugar

1/2 tps Vanilla

1/8 Cup Flour (1 Heeping TBLSP) I usually add about 1/3 cup rice flour (or baking mix - but no levening)

Melt butter in a suitable sized caserole, add cocoa/sugar/eggs/flour/vanilla and stir well (with our flours, I usually use a whisk to get rid of lumps). Bake in same pan, 350, 45 minutes. Until you are familiar with your oven/baking, I'd set the timer 5 minutes short - burned is not nearly as good. Makes an excellent breakfast when cold :) Yes I make it without chocolate and no it's not the same without the cocoa, but my kids still devour it.

Enjoy, Bob

chocolatelover Contributor

And it's dairy-free, too! Ok, when made with dairy free butter. :P

Thanks, Bob!!

BTW, how do you do the quote thing--haven't been able to figure that one out yet....

CarlaB Enthusiast

Chocolatelover, what were the results of your blood test? Many people choose to use the blood work and dietary response for their diagnosis. It's not an entirely bad thing not having a "real" diagnosis ... you won't have future insurance problems that way. Some diagnosed celiacs get turned down for insurance.

Once you get off the foods you crave, which is hard, you will stop craving them.

Usually a chocolate craving indicates a magnesium deficiency, which is common in celiacs, because chocolate is high in magnesium. My daughter started taking magnesium and no longer craves chocolate.

kbtoyssni Contributor

The question is: do you want the tests redone? If so, you need to keep eating gluten or they will most likely come out negative. If you don't want the tests redone, a combination of Enterolab and dietary response is sufficient for diagnosis.

When you do go gluten free, you need to keep in mind that gluten is like a poison/drug to your body. If you have celiac, you're probably addicted to gluten which makes it very hard to give up at first. Cold turkey is probably the best way to go if you want the withdrawal to be over quickly. You should identify what it is that is the most tempting to you. If it's having gluten food around your house, maybe you can get rid of that food. If it's missing a certain food, let us know and we'll help you find a good gluten-free alternative.

CMCM Rising Star

OK, here's a question for you.

Situation: You feel horrible all the time. You eliminate gluten (and maybe casein too) for a few weeks and feel wonderfully better as a result. Your body returns to normal. Then doc says "Sorry, nope, no sign of celiac disease. Go eat wheat." So would you go eat wheat even though it makes you feel sick?

Or would you say "Well, they didn't find proof, but the fact is, I feel "normal" again when I'm on a gluten free diet.

I don't know, it kind of comes down to how you want to feel and if eating the gluten is worth the punishment. Who cares what the doctors officially say....it comes down to how you feel.

What was that saying....."Let food be your medicine and your medicine be food." In some cases, that means don't poison yourself with gluten and/or casein and whatever else doesn't agree with you!!!!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,728
    • Most Online (within 30 mins)
      7,748

    Jo-Anne Bloom
    Newest Member
    Jo-Anne Bloom
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
    • Rejoicephd
      @Scott Adams That's actually exactly what I ended up asking for— vodka tonic with Titos.  I saw on their website that Tito's is certified gluten-free (maybe many of the clear vodkas are, I don't know, I just happened to look up Tito's in advance). I should have actually specified the 'splash' though, because I think with the amount of tonic she put in there, it did still end up fairly sweet.  Anyway, I think I've almost got this drink order down!
×
×
  • 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.