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

By chocolatelover
in Coping with Celiac Disease

Recommended Posts

chocolatelover Contributor
chocolatelover
Posted

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
Cruiser Bob
Posted
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
chocolatelover
Posted
  • Author

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
CarlaB
Posted

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
kbtoyssni
Posted

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
CMCM
Posted

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.

Go to topic listing

  • 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. Me,Sue
      - Me,Sue posted a topic in Introduce Yourself / Share Stuff
      0

      Knowing what to do when feeling unwell.

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed...
    2. Francis M
      - Francis M replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    3. Scott Adams
      - Scott Adams replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      3

      Stomach burning and neuropathy

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The...
    5. Scott Adams
      - Scott Adams replied to Me,Sue's topic in Related Issues & Disorders
      2

      Nausea

      Welcome to the forum. Is the nausea associated with eating certain foods, or anything else in particular? Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,852
    • Most Online (within 30 mins)
      7,748
    LG2
    Newest Member
    LG2
    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

    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
    • Scott Adams
      Nausea

      By Scott Adams · Posted

      Welcome to the forum. Is the nausea associated with eating certain foods, or anything else in particular?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
×
×
  • 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.