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

A Little Input Please


beth01

Recommended Posts

beth01 Enthusiast

I was diagnosed three weeks ago and have been as gluten free as I can right now ( mistakes have been made by the newbie).  I was wondering ( and I know this sounds like a rather stupid impatient question), when will I start to feel better?  I am still waking up every day nauseous, and am still relying pretty heavily on the dicyclomine for the cramping and am still using my heating pad every day for the pain.  I have had two glutenings in the last three weeks, have been keeping a food diary, and am trying to stay away from any processed foods.  I started vitamins right away, cleaned my house from top to bottom ( no gluten here), cut out dairy, just fresh fruits, veggies, and whole meats.  I have eaten Chex, kind of my go to food right now, seems it the only thing that doesn't make me feel like crap. The insomnia is getting worse, the constipation is back with a vengeance, and along with it all is the frustration.  I know it takes time and possibly years for your body to heal from this especially after being sick for over 20 years, but I haven't worked in months and the money is running out and I am not sure how long before I start to feel better so I can go out and get a job without having to call in sick or have to take a nap. lol

After re-reading this I sound like a whiner and am asking questions that you might not be able to answer since everyone is different, but thought maybe a little feedback might be helpful and maybe a little advise as to things I can change.  Thanks for taking the time to read my pity party and thank in advance for any advice given :)

 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Hang in there! If you can avoid the glutenings, you should feel relief soon. It took me about six weeks to see improvement. Everyone heals differently though. Some take a bit longer and others less.

Good job on cleaning gluten out of your house. Do not eat out until you are feeling better. Every glutening sets off your system and can take 1 to 3 weeks to recover. Be diligent. Keep snacks with you to avoid eating at restaurants. Simple foods to encourage healing.

You will get better!

GFinDC Veteran

I'd dump the Chex cereal for now.  Some people report reactions to it.  Instead eat eggs, meat or cooked veggies for breakfast.  The simpler your diet is (fewer foods) the better for healing.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

Telith Newbie

Just a question, before you knew Gluten was the culprit, what made you feel better?  When I get glutened, I buy ginger ale, and let it go flat while I drink an energy drink.  I don't know if it's the caffeine or the increase of my metabolism or just the brain to body connection of "something is wrong, we need to step up our game" placebo effect but it just makes me feel better. Even the smell of Blue Amp just makes me feel better.  It's horrible for me, no doctor will ever recommend it, but dammit I feel better and I feel better enough that I'm able to focus on what I can actually do to make my symptoms go away for real.  Which is important.

 

You may want to look at what you're cooking with, I know it's a pain in the ass to replace everything, but you don't have to do it all at once, just enough to be able to make sure you're not accidentally getting old contamination making this worse.

 

I started physically feeling better after two weeks, but I had no appetite, was afraid of food, and my digestive symptoms have always taken a back seat to migraines, fatigue, brain fog, and depression, which all lasted much longer.

 

I personally would suggest rice porridge (It's pretty much just over cooked rice as soupy or thick as you want it) with whatever you feel like adding.  I use broth when I'm truly feeling horrid and then slowly add veggies, cheese, and protein like fish or chicken as I feel better/ actually feel hungry instead of knowing I need to put fuel into my body.

 

Everyone is different, we all have our own tricks. Unfortunately it takes a while to figure out which tricks work for you.  That's been the hardest part for me.

nvsmom Community Regular

Are you eating Chex with milk?  About 50% of celiacs are lactose intolerant at diagnosis because our villi which make the lactase that digests the milk sugars (lactose),and if our villi is damaged, it just can't make enough lactase to handle milk. Fortunately most celiacs regain the ability to handle milk after about 6 months gluten-free.

 

I would advise dumping milk for a few months and see if that helps.  Hopefully you'll start feeling better soon.  Most people start seeing some improvements in the first month, but we usually advise that a good 6 months gluten-free are needed to get a better picture of how the gluten-free diet is helping you.

 

Best wishes.

Fenrir Community Regular

I'm about 10 days in of being gluten-free. I don't think I've been glitened yet but I have seen some marginal improvements.

 

My bloating, gas, joint pain and headaches are improved. Overall GI function is better. However, no improvement yet in the upper right quadrant pain.

 

I'm guessing it could take a while for everyting to fix itself.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,732
    • Most Online (within 30 mins)
      7,748

    Debydear
    Newest Member
    Debydear
    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

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.