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

Does This Really Get Better?


FruitEnthusiast

Recommended Posts

FruitEnthusiast Enthusiast

Did anybody feel like they were never going to get better, then finally get over the hump? Please say yes. It's taking so long to see any changes. Part of the day I'll feel ok then I'll feel sick again... achy all over, headache, nausea (still an improvement from how it used to be). Every day is like that. Each time I've discovered a new reaction to a food, it takes three weeks for the symptoms to become less severe. Is that usual? It blurs together and starts to seems endless. I've been feeling bad for two and a half years. I finally found out gluten was making me sick. Now gluten free for four and a half months, but still so sensitive to so many foods. I'm not even to the point of considering gluten free alternatives or eating in restaurants like so many others seem to be. I'm still as sensitive to the gluten free alternatives as I am to gluten! I lose perspective and faith. This does get better right? I'm not in a hurry, but I need to know I will eventually get there.


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



Celiac.com Sponsor (A8-M):



flowerqueen Community Regular

Could it be the fact that you are not getting enough fibre in your diet? I was diagnosed with IBS 30years ago, which was managed through eating fibre and less refined foods. Since being diagnosed as Coeliac last November I have found it very difficult to get enough fibre in my diet. Also, maybe there's something in your diet that you are still sensitive to but have not eliminated or, there's still traces of gluten in what you are eating. Do you keep a food diary? It might be worth double checking absolutely everything you eat and drink to see if there's still some contamination. Maybe other people you live with could be inadvertently contaminating your food or utensils?

Did anybody feel like they were never going to get better, then finally get over the hump? Please say yes. It's taking so long to see any changes. Part of the day I'll feel ok then I'll feel sick again... achy all over, headache, nausea (still an improvement from how it used to be). Every day is like that. Each time I've discovered a new reaction to a food, it takes three weeks for the symptoms to become less severe. Is that usual? It blurs together and starts to seems endless. I've been feeling bad for two and a half years. I finally found out gluten was making me sick. Now gluten free for four and a half months, but still so sensitive to so many foods. I'm not even to the point of considering gluten free alternatives or eating in restaurants like so many others seem to be. I'm still as sensitive to the gluten free alternatives as I am to gluten! I lose perspective and faith. This does get better right? I'm not in a hurry, but I need to know I will eventually get there.

MitziG Enthusiast

It took 7-8 mos until I felt like things were really better. For my daughter, a year and a half later, she is still struggling with nailing down other food intolerances. Everyone is different, so don't get discouraged!

bartfull Rising Star

Yes, yes, yes!! It DOES get better. Keep yourself on a very bland, whole foods diet. Keep a food diary. Go organic wherever possible. Give yourself time to heal. Along the way it will seem like you have to keep dropping foods to the point you'll be afraid you soon won't be able to eat anything, but if you can keep yourself away from gluten and other offending foods for long enough, you WILL heal, and then most of the foods that have been bothering you will no longer be a problem.

At least that is what worked for me. It was a year before I started really feeling better, and now I am adding foods back successfully. Yesterday, for the first time in over a year, I had a slice of gluten-free bread. I did NOT react to the corn in it. I went from a list of 11 foods I could eat, to now knowing I can make baked stuffed pork chops with GRAVY! I can now take supplements that were off limits to me. I can make pancakes again. I can eat BACON again!

All of a sudden my whole world is brighter. Gluten? It's a piece of cake to give up gluten when you've been so restricted you couldn't eat anything with corn in it. I'm happier than I've been in a long long time.

And it WILL happen for you too. You can do this. A year of misery was worth it to me. It'll be worth it for you too. (((((HUGS)))))

FruitEnthusiast Enthusiast

Along the way it will seem like you have to keep dropping foods to the point you'll be afraid you soon won't be able to eat anything, but if you can keep yourself away from gluten and other offending foods for long enough, you WILL heal, and then most of the foods that have been bothering you will no longer be a problem.

All of a sudden my whole world is brighter. Gluten? It's a piece of cake to give up gluten when you've been so restricted you couldn't eat anything with corn in it. I'm happier than I've been in a long long time.

You said just what I needed to hear bartfull, thanks so much :) ...and you're so sweet. I do already fear there will nothing left for me to eat, I'm so limited. This is the first time someone else has said that besides me. Gluten is off the list for good, and I don't care about that either, but it will be nice to get my other foods back eventually.

I only eat whole foods, keep a food diary, and have been on a strict raw diet for 3 months. Only fruit, veg, nuts/seeds, beans, water, olive oil, sea salt, pepper, evap cane juice. That's it! I was having Coconut milk, but stopped a couple weeks ago, because it was the only thing in my diet with additives, or processed at all.

It's true though, my body hasn't had time to get over all the upsets from trying to add foods to my diet. I didn't truly give up trying "gluten free" baked substitutes for the first month. Then one by one I found I couldn't tolerate rice, eggs, potatoes (any nightshades). Sensitive to corn for years. Each time it's another month to recover. At four and a half months, I guess I'm actually right on schedule. It seems so much longer! I've already tested everything now, there aren't any foods left, so I can continue to get better now.

I'm not very good about consistently buying organic. I wonder how much that would make a difference? Opinions vary so much on that subject.

Did you wait a year before trying foods again? I know I will wait six months at least.

bartfull Rising Star

Organic really helped me a lot. Every time I'd buy a sweet potato at the grocery store I'd get D within hours of eating it. Organic ones stayed with me. My system was so messed up I was reacting to pesticide residue, even though I washed the heck out of them and peeled them. Those pesticides and chemical fertilizers become part of the plant. The same thing happened with pears. I still can't eat berries, or at least I couldn't back in March. That was when I had some organic blueberries. They didn't work. I'm pretty sure that's because I am salicylate sensitive and berries are really high in sals. I'm hoping to get them back someday too though.

I kept trying new foods for about six months. Then I gave up until just recently. And what a pleasant surprise I have had! Potatoes will be next, but I'm going to wait a bit longer. One small step at a time.

FruitEnthusiast Enthusiast

Yikes! I eat lots of berries :( Time to start going to the local farmers markets, no matter how tired I might be. Very helpful.

I started drinking alkaline(Kangen)water today. A new friend has a machine at her house. She swears it will change my life, and start the toxins moving out of my body. After drinking 48 oz of it, I can already feel the toxins stirring up, causing that good 'ol brain fog again. Also increased intestinal movement, which is exactly what I've needed. I'm going to post more info about my experience with alkaline water if I continue to see results. Thinking positive...


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



Celiac.com Sponsor (A8-M):



cahill Collaborator
Gluten? It's a piece of cake to give up gluten when you've been so restricted you couldn't eat anything with corn in it.

This is so true.

At one point I though I was going to be FOOD FREE :ph34r: but I have been able to add some foods back ( and some of them I have even been able to keep.)

Try not to think about what you can not eat ,concentrate on what you can eat and healing your body.

FruitEnthusiast Enthusiast

Honestly, I don't think much about what I can't eat, I've had food problems most of my life in one way or another, that's not new for me. I do miss sometimes having the option of throwing some easy thing in the microwave without having to think. Being too tired to go out to buy produce, make anything from scratch, or even eat it is the hardest part. The days I have enough energy to accomplish the most basic things are a treat for me. I look forward to having more of those days. In the meantime it's really hard.

cahill Collaborator

Honestly, I don't think much about what I can't eat, I've had food problems most of my life in one way or another, that's not new for me. I do miss sometimes having the option of throwing some easy thing in the microwave without having to think. Being too tired to go out to buy produce, make anything from scratch, or even eat it is the hardest part. The days I have enough energy to accomplish the most basic things are a treat for me. I look forward to having more of those days. In the meantime it's really hard.

It is really hard. (( HUGS)) I have been there . I am here to let you know it DOES get better. Will you EVER be able to eat the way you used to ? NO. You , as others before you , will learn and change your diet to what is healthy for your body.

Honestly I dont know if I would have made it with out my crock pot and freezer. On the days I could function I cooked extra and froze mini meals to get me thru the days I could not function.

And lamb and rice :blink: I lived on that for almost 3 months until I could start reintroducing other food. Yeah It is tough but so are you.

Admittedly this got so much easier when my body healed enough that I could reintroduce eggs and dairy . They are currently the main part of my diet.

Hang in there :)

FruitEnthusiast Enthusiast

It helps so much to talk to all of you who understand on this site. Thank you so much.

One thing I really struggle with is missing work. I can only work half days and sometimes not even that. No one at work gives me a hard time, but my bosses would like me to be there more than I can be. I want to be reliable enough to work the entire schedule I agreed to when I took my job. I haven't figured out how to accept that I have no control over this. I pride myself on being someone who can be counted on. Making less money doesn't help either but I can cope with that. One work friend suggested that I'm going through this, to learn to accept my limitations and be ok with it. I want to let go of that American ideal of being impervious. Maybe I need to take a trip to Europe. Ha ha.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,912
    • Most Online (within 30 mins)
      7,748

    westman3d
    Newest Member
    westman3d
    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

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • 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.
×
×
  • 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.