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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748
    tessycork47
    Newest Member
    tessycork47
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.