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

Hope This Helps Someone

christa

By christa
in Coping with Celiac Disease

Recommended Posts

christa Contributor
christa
Posted

I have been gluten free for a year now and am feeling sooooo much better. I want to let you all know hang in there it WILL get better. There is definetly a learning curve when trying to figure out what you can and can't eat and it takes some time and patience, but with perserverence you will get there. I remember not being able to eat anything without getting sick. Vegetables, fuit, meat, juice, etc. etc. etc. It took a while of being gluten free and dairy free before I could eat many of these other things without feeling sick but now I can. I recently started drinking coffee again. I guess what I want to get across is even though some things besides gluten are making you sick now and it seems at times there is nothing you can eat, they are NOT all intolerances, many you will be able to eat again once your body starts to heal. I noticed a significant difference after about a month and a half. So stick in there, you will get your life back. I know I needed to hear these things when I was struggling, hope it helps someone!

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

Celiac.com Sponsor (A8-M):


SchnauzerMom Rookie
SchnauzerMom
Posted

Thank you for this post. I have been gluten free for about 1 month. I have been getting discouraged lately wondering if gluten is the problem or something else. I really need to give it more time. Thanks again! :D

Sophiekins Rookie
Sophiekins
Posted

I've been gluten free for six years now. There are literally thousands of foods I can eat (and grain-wise, I eat nothing but rice and potatoes as I have had serious reactions to so many other grains, I'm tired of trying). Every time I get a craving for a food I can no longer have, (my real weakness is bagels. . .mmmm real chewy boiled bagels. . .) I focus on the fact that I can do so many other things now besides eat. I have a list in my diary, that I add to every time I get a food craving. For example: I can run a mile without collapsing. I can climb a flight of stairs without getting dizzy. I can go skiing. When the alarm goes off each morning, I can get out of bed rested to experience another wonderful day (and believe me, these days are wonderful). I can sleep. I have learned to cook. I have beautiful curves (instead of bulges and bones). I am happy. I eat wonderful, freshly prepared meals and savour my food.

The other thing I do when going gluten free gets me down is to visit the most wonderful gluten-free blog I've come across: www.glutenfreegirl.blogspot.com - this woman LOVES food, and she loves it gluten free to. Plus her recipes are mouthwatering. . .

I honestly could not have told you that I felt so horrible all the time before I went gluten free, and after the first couple of months, I felt so good that I didn't think it could possibly get any better. The best part is that it does. I choose not to be limited by my disease - after all, it will probably not kill me, it doesn't require expensive drugs to keep me alive, I don't have to stick myself regularly with a needle, and I feel great most of the time. . .is this the world's best chronic illness or what? Some days just walking to work makes me laugh because it feels so good to be wholly inside a body (this body! my body!) which works. Is all that really worth a bagel?

2kids4me Contributor
2kids4me
Posted
Is all that really worth a bagel?

Kinnickinnick makes yummy bagels - daughter loves them! I had one and I really cant tell the difference. She likes the plain variety :):)

you CAN have your bagel and EAT it too :D

Sandy

dragonmom Apprentice
dragonmom
Posted

It is great to feel so much better- I couldn't lift a 3 pound weight , I barely made it through a day of work and then just sat down and did nothing when I got home. My family had had a big enough scare with my health that going gluten free seemed to be minor . When you put things in perspective life could be a whole lot worse. My numbers seem to be reflecting my lack of reading some lables and those damn lindt chocolates :) I just called all my flavored coffee companies and was assured they were gluten-free. I keep trying! :)

almostnrn Explorer
almostnrn
Posted

I think its amazing to look back on before I was diagnosed. I never "felt sick". I never had the typical symptoms but once I quit eating gluten I realized just how crappy I really felt. I still have those days from time to time but they are spacing out and I find myself with so much more energy again.

Sophiekins Rookie
Sophiekins
Posted

Hi Sandy,

Yes, Kinnickinick makes yummy bagels. . .but sadly they contain corn and soy and are therefore off limits for me - I am one of those unfortunate 30% whose bodies can't tell the difference between corn and wheat. Sigh. I will continue to dream. . .

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

Celiac.com Sponsor (A8-M):


ajay Newbie
ajay
Posted
Hi Sandy,

Yes, Kinnickinick makes yummy bagels. . .but sadly they contain corn and soy and are therefore off limits for me - I am one of those unfortunate 30% whose bodies can't tell the difference between corn and wheat. Sigh. I will continue to dream. . .

Sophie! I react to corn, too. And darned if half the yummy gluten-free versions of stuff out there have corn in them. So I end up making most of my pseudo-gluten foods from scratch. Now I have a problem getting a batch of brownies to last longer than a day... I literally do polish off the whole batch within 24 hours... I know there's a recipe for bagels in one of Bette Hagman's cookbooks... are there CC concerns with bean flours and soy?

Maybe it's just as well that I still can't get a loaf of gluten-free bread to come out right. I'd probably eat the whole thing before it cooled down!

Sophiekins Rookie
Sophiekins
Posted
Sophie! I react to corn, too. And darned if half the yummy gluten-free versions of stuff out there have corn in them. So I end up making most of my pseudo-gluten foods from scratch. Now I have a problem getting a batch of brownies to last longer than a day... I literally do polish off the whole batch within 24 hours... I know there's a recipe for bagels in one of Bette Hagman's cookbooks... are there CC concerns with bean flours and soy?

Maybe it's just as well that I still can't get a loaf of gluten-free bread to come out right. I'd probably eat the whole thing before it cooled down!

Hey Ajay,

Sadly, corn, soy, millet, buckwheat, beans, chickpeas, maize, oats, amaranth and quinoa are off limits for me. . .waaaaah. I've pretty much given up on trying new flours because they cost soooo much and then just make me sick (though one of my new coworkers has given me a recipe for chesnut flour cake which I'm planning to try. . .just as soon as I can track down some chesnut flour). And yes, CC is a big concern with me - there's enough cornstarch in an extra-strength tylenol to make me uncomfortable. . .until I moved to Britain and found a corn-free, gluten-free painkiller, I used to take a tylenol and a sleeping pill and go to bed for eight hours. Or suffer. Or maybe I meant to say "and suffer"? I'm sure you can relate to the hellishness of finding prescription drugs that are gluten AND corn free. . .

I tried Bette Hagman's bagels once, back when I first went gluten free. . .they weren't bad, but I didn't think they were much like bagels either.

As for gluten-free bread, I cheat and make it in muffin pans (or inside english muffin moulds - also those little itty bitty bread tins) - I also preheat my oven to 50 (celsius. . .I bake in Britain), turn it off and let the dough rise inside the oven. But mostly I make muffins or scones (sweet and savoury. . .after six years gluten free I'm gungho enough to try any "regular" recipie). I've found the key to flavour and texture without corn is nut flour - I use almond flour/finely ground almonds in my regular flour mix (1 cup rice flour, 1/3 cup each potato starch, tapioca starch and ground almonds) and once made a layer cake for a birthday that was so convincing my family tried to stop me from eating it. . . My real weakness though is peanut butter cookies. . .though fortunately the recipe I have makes 12 massive cookies, rich enough that one leaves me purring contentedly. . .

And (while we're in confession mode) I've been known to eat the whole loaf of bread before it cools down. . .which I believe falls under the category "please don't try this at home". . .

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. RMJ
      - RMJ replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      nothing has changed

      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    2. asaT
      - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      nothing has changed

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get...
    3. nanny marley
      - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me I tryed lol , another was to have another blood test after...
    4. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel. they offered me an endoscopic biopsy ...
    5. par18
      - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748
    Muhammad
    Newest Member
    Muhammad
    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

    • RMJ
      nothing has changed

      By RMJ · Posted

      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    • asaT
      nothing has changed

      By asaT · Posted

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      IBS-D vs Celiac

      By nanny marley · Posted

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Is it gluten?

      By par18 · Posted

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
×
×
  • 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.