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

3 Months Down. But Still Having Ups And Downs!

jess-gf

Recommended Posts

jess-gf Explorer
jess-gf
Posted

So I have been gluten free since November 2010 and it's been getting easier and easier to maintain the diet. This is good. I've never cheated and only accidentally gotten glutened at thanksgiving, once when I licked an envelope, and once when I took a generic brand of tylenol. The original pain and nausea that caused me to go to the Dr in the first place is gone.

But, I feel like there are still things that are wrong with me and this past week some symptoms have become more and more frequent. Lately I've been feeling really bloated and full after meals, and like a pocket of gas is expanding and prodding at the top of my stomach causing discomfort. Eventually it settles down. But it gets worse at night - as soon as I lie down it's back and I also get mildly nauseous. I've been having a terrible time concentrating. I feel tired. My muscles ache. I feel sad and long for a day warm enough that I can go outside and at least sit in some sun.

I'm not sure what's going on. Gluten withdrawal? Or is this just a stage of healing? Is it a symptom of something else related to Celiac like Leaky Gut Syndrome?

Here's what I usually take for supplements: MethylCobalamin sublinguals, Bromelain, L-Glutamine, a probiotic that I discovered expired last year (oops) and a daily vitamin gummy. I stopped taking Bromelain and L-Glutamine a bit ago suspecting they were making me feel bad but I don't think it was them, so I started taking L-Glutamine again today.

This weekend I bought some more supplies thinking I just need more support through this. I purchased some liquid vitaminsOpen Original Shared Link (the gummies really don't have much in them), acidophilus Open Original Shared Link, calcium-Magnesium Open Original Shared Link, and fish oil Open Original Shared Link. Hopefully this will help.

Has anyone else had an experience like this?

I've also read some interesting research on the Paleo Diet. I am concerned that it's just a fad, but maybe a complete cut of all grains (rice is pretty much the only form I eat) will help? I've also been dairy free for about a month.

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

Celiac.com Sponsor (A8-M):


txplowgirl Enthusiast
txplowgirl
Posted

Before you cut out the grains I would suggest cutting out dairy first. Dairy causes gas and stomach discomfort as well. I have a feeling it's the dairy, but that's just my opinion.

After a month if that dosen't work kick out the soy, then the grains.

Just a thought.

And yes, you could still be experiencing withdrawal symptoms on top of everything else. Another thing is have you checked all those supplements you're taking. Like for barley grass, wheat grass, etc. They can be very sneaky and get by you if you're not careful.

Hope you get to feeling better.

Kelly777 Newbie
Kelly777
Posted

Check your Bromelain and L-Glutamine online for adverse/side effects. Those are two supplements I will not take after reading about them. I agree that it is very likely that you have lactose intolerance. I have been gluten free since the end of September and I just NOW am able to tolerate hard cheese. I cannot tolerate soy. It has always messed with my system long before I found out I was gluten intolerant. It is a rocky road for sure.

jess-gf Explorer
jess-gf
Posted
  • Author

I've been off L-Glutamine and Bromelain for at least a week now, though I just started taking L-Glutamine again today. I didn't feel any better while being off of them. I've also been dairy free for about a month. :/

cap6 Enthusiast
cap6
Posted

I have been taking L-Glutamine for the past 2 months for constipation but haven't noticed any difference so wondered if it was helping. It is supposed to help the gut heal though.

  • 4 weeks later...
jess-gf Explorer
jess-gf
Posted
  • Author

Thought I'd update this. It's been 4 months now! Feels like an eternity. It seems like I keep taking 1 step forward and then 2 steps back. I'm still dairy free and mostly soy free except for my gluten-free soy sauce I use in stir frys. I've also recently decided to give the paleo diet a whirl since I haven't been feeling remarkably better since going gluten free. It's only been a week so far so it's hard to say if there's been an improvement or not - it seems like no matter what I do I discover something else that gives me a stomach ache!

I stopped taking bromelain since my stomach ached after taking it. I still take liquid vitamins, and a calcium-magnesium suppliment. If I remember I'll take a probiotic and fish oil.

It feels like my stomach is getting even more sensitive than before. I stopped drinking regular coffee and started drinking decaf, but I found that made it feel angry and burny too. I switched to only drinking tea and eventually that made it feel achy and burny. So now I just drink decaf tea. I tried a cup of jasmine green tea with honey today and even that bit of caffeine is bothering me. I ate a small bar of dark chocolate last night and that was too much - I guess I can only have one bite of that.

A few days ago I made my own turkey sausage (recipe here: Open Original Shared Link) and that made my stomach burn. Argh why! It wasn't even that spicy. I feel like the only real thing that's improved since being diagnosed is that my constipation has gone away. At least there's something. :(

  • 3 weeks later...
BrookeT Apprentice
BrookeT
Posted

Hello,

I can definitely empathize with you. I am about 7 1/2 months gluten free and am still having some issues myself. My level of damage was a Marsh III which is the highest amount you can have. I think the length of time it takes to heal is different for everyone and depends on the amount of damage you have to your intestines as well. I've learned that you have to be patient, the healing process takes time. Until your intestines heal, your body will have a difficult time with certain foods. I've read that it can take up to 2 years or more for your intestines to fully heal and that's without any gluten in your diet.

Try to eat less processed foods and more simple whole foods. Watch out for greasy, spicy & sugary foods as well. Be careful with decaf & instant coffee as some can contain gluten. Try chamomile, peppermint and ginger teas. They are soothing to the stomach. If you crave chocolate, Enjoy Life brand makes some yummy chocolate bars made from rice milk. I get them at Whole Foods.

Hang in there and try and stay positive. At least you have noticed some improvement. Hold on to that and know that more improvements will come gradually over time. Keep your diet simple for now and see how that works for you. Also, make sure all of your supplements are gluten free.

Have you had any of your vitamin levels checked by your Dr.? It would be a good idea to have your Dr. run a complete blood panel as well as having your vitamin levels checked. (Such as B & D) I don't know if you were diagnosed with celiac or just have a gluten intolerance or sensitivity, but many people with celiac are deficient in certain vitamins, so it would be worth checking into.

Feel free to contact me if you have any questions. : )

Thought I'd update this. It's been 4 months now! Feels like an eternity. It seems like I keep taking 1 step forward and then 2 steps back. I'm still dairy free and mostly soy free except for my gluten-free soy sauce I use in stir frys. I've also recently decided to give the paleo diet a whirl since I haven't been feeling remarkably better since going gluten free. It's only been a week so far so it's hard to say if there's been an improvement or not - it seems like no matter what I do I discover something else that gives me a stomach ache!

I stopped taking bromelain since my stomach ached after taking it. I still take liquid vitamins, and a calcium-magnesium suppliment. If I remember I'll take a probiotic and fish oil.

It feels like my stomach is getting even more sensitive than before. I stopped drinking regular coffee and started drinking decaf, but I found that made it feel angry and burny too. I switched to only drinking tea and eventually that made it feel achy and burny. So now I just drink decaf tea. I tried a cup of jasmine green tea with honey today and even that bit of caffeine is bothering me. I ate a small bar of dark chocolate last night and that was too much - I guess I can only have one bite of that.

A few days ago I made my own turkey sausage (recipe here: Open Original Shared Link) and that made my stomach burn. Argh why! It wasn't even that spicy. I feel like the only real thing that's improved since being diagnosed is that my constipation has gone away. At least there's something. :(

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

Celiac.com Sponsor (A8-M):


Evangeline Explorer
Evangeline
Posted

L-Glutamine causes me to have a gluten-like reaction. Also, soy causes many Celiacs to have a gluten-like reaction --some people say it is worse than gluten itself.

Another idea is trying the Gluten Society's Advice and try going grain-free. I suggest you google them and watch some of their videos for more information. According to them, corn is 55% gluten and they believe Celiacs don't only react to the gliadin in wheat, barley and rye, but also to the gluten in corn and rice (although less in rice). Those are the three main things that might help you. Best of luck!

Igg postive Rookie
Igg postive
Posted

I have stomach bloating right under my ribs. The area where my gallbladder operation was is painful too. At lunch today I had a pain sharp pain in the bottom/ middle of my ribs then it eased off. The pain seems to be easing off slowly and overall it is getting better. It has been a month for me on the diet. I have noticed it is easier for me to do activities that require bending over. This was very uncomfortable to me before. I am glad you posted because I was wondering how long these symptoms can hang on. Was your blood tests/biopsy positve for Celiac?

dube Contributor
dube
Posted

Try to eat less processed foods and more simple whole foods. Watch out for greasy, spicy & sugary foods as well. Be careful with decaf & instant coffee as some can contain gluten. Try chamomile, peppermint and ginger teas. They are soothing to the stomach. If you crave chocolate, Enjoy Life brand makes some yummy chocolate bars made from rice milk. I get them at Whole Foods.

What about decaf tea? I drink that every night and I still think I'm being glutened...

I did figure out I am having a problem with fractose...

cap6 Enthusiast
cap6
Posted

It took me a year to feel like dancing again. At 13 months I still have days when I hurt and am unable to trace it to any particular item. It can take several months before dairy products will agree with you. Just now I can eat a little bit of cheese or a bite of ice cream once in a while. Lots of whole foods and nix to the processed stuff. When I first went gluten-free friends loaded me with gluten-free muffin mixes, cakes mixes etc..... it's still all in the freezer! Takes a long time for the gut to heal. From what I have learned on this site the more damage and the older you are the longer it can take to heal. Hang in.. you are getting better, a little at a time. :)

sb2178 Enthusiast
sb2178
Posted

Have you been checked for an ulcer?

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,807
    • Most Online (within 30 mins)
      7,748
    MoonBear
    Newest Member
    MoonBear
    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

    • KathyR37
      New here

      By KathyR37 · Posted

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      New here

      By Scott Adams · Posted

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      New here

      By KathyR37 · Posted

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
    • Scott Adams
      Celiac attack confusion and anxiety

      By Scott Adams · Posted

      This article, and the comments below it, may be helpful:    
    • nanny marley
      Manitol and mri

      By nanny marley · Posted

      Oh yes I can understand the tiredness after going threw all that, must be exhausting especially on the mind I have high aniexty so I can understand that , I wish there more easier ways for people to get help , I had a MRI on my spine some years ago without anything it was really quick and no prep , I understand the need for  them to see better with the bowel ,but you think they would use something a little less traumatic  for ibd sufferers on the bowels by now ,I hope your feeling better today 🙏
×
×
  • 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.