Jump to content
  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Hope This Helps Someone


christa

Recommended Posts

christa Contributor

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

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

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
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

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

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

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
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
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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Russ H replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Coeliac or not coeliac

    2. - Wheatwacked commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      New Study Reveals Hidden Gut Damage in Celiac Disease—Even Without Gluten (+Video)

    3. - Wheatwacked replied to Ginger38's topic in Coping with Celiac Disease
      6

      The Struggle Has Overtaken Me

    4. - cristiana replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Coeliac or not coeliac

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

    • Total Members
      134,200
    • Most Online (within 30 mins)
      10,442

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

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Russ H
      Do you have the standard range for the test results you received? A level of anti-tTG2 antibodies at least 10x the standard range is almost certainly (>98%) due to coeliac disease. Moderately raised levels can be caused by other conditions as well as coeliac disease. Accuracy of the No-Biopsy Approach for the Diagnosis of Celiac Disease in Adults: A Systematic Review and Meta-Analysis It is possible to have latent or early stage coeliac disease without histological changes visible by microscope. As has been suggest in this thread, if the repeat test comes up negative and serology is high, request an HLA genetic test from your specialist. Only 40 % of the population carries an HLA gene variant enabling the development of coeliac disease - if you test negative for this, it is quite unlikely that you have coeliac disease.  
    • Wheatwacked
      Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with.  
    • cristiana
      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
×
×
  • Create New...