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
FruitEnthusiast
Posted

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
flowerqueen
Posted

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
MitziG
Posted

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
bartfull
Posted

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
FruitEnthusiast
Posted
  • Author

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
bartfull
Posted

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
FruitEnthusiast
Posted
  • Author

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
cahill
Posted
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
FruitEnthusiast
Posted
  • Author

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
cahill
Posted

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
FruitEnthusiast
Posted
  • Author

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.

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. Scott Adams
      - Scott Adams replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will...
    2. Jacki Espo
      - Jacki Espo replied to CDFAMILY's topic in Related Issues & Disorders
      5

      Covid caused reoccurrence of DH without eating gluten

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure.
    3. Mari
      - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      1

      New Celiac Mama in My 30s

      Hi Tiffany. Thank you for writing your dituation and circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines. Way back when I was in my 2...
    4. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      My only proof

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but...
    5. knitty kitty
      - knitty kitty replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

      Fascinating.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,957
    • Most Online (within 30 mins)
      7,748
    Dogdad21
    Newest Member
    Dogdad21
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.