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

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. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    2. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    4. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

    5. - Scott Adams replied to ElenaM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      I think I am gluten intolerant


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,906
    • Most Online (within 30 mins)
      7,748

    Dakota4
    Newest Member
    Dakota4
    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

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.