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

1 Year On Gluten Free Diet, But Still Have Inflammation

egger

Recommended Posts

egger Apprentice
egger
Posted

Is it common to still have inflammation in body after 1 year on gluten-free diet? I have gone through decades with undiagnosed celiac disease. My hair is still falling out.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I went through decades undiagnosed also. It can seem to take a long time for the inflammation to resolve. I did find that I have an additional intolerance to soy and once I dropped that my inflammation went down more quickly. If you haven't already it might be good to make sure you don't have an additional intolerance. Soy, casien (milk protein), and nightshades seem to be the most common.

It would also be a good idea to have your vitamin and mineral levels checked as well as your thyroid. Thyroid problems seem to be fairly common in us. 

1desperateladysaved Proficient
1desperateladysaved
Posted

I too had inflammation related to eating foods I didn't tolerate.  I think I finally got rid of all of them now and am deflating.  I am 2+ years gluten free.  Things are so complicated sometimes.  Decades of damage do take their toll.  It took me a long time to be willing to make all of the food changes I needed to make.  It was worth it!

 

I hope all of the same for you in discovering the keys to your problem and solving them.

 

Dee

Waitingindreams Enthusiast
Waitingindreams
Posted

:( Yes, I still have a lot of issues. I have been gluten free for just over a year as well. I am currently gluten, soy, yeast, dairy, legume, and grain free, and also eating a low histamine and low sugar diet. Sheesh. It seems like it will never end. If it helps, my stomach feels pretty good right now. I didn't give them up all at once though...I slowly did elimination diets and tried to go with what made me feel better. I feel best eating plain, grilled vegetables and chicken and limited fruits. It took me awhile to go grain free, as I really like rice and rice products..but I have a huge candida issue that needs to be resolved, and going completely grain free seems to be the best way to handle it. I am basically following the SCD diet blended with the candida and paleo diet.  I remember 2 days after giving up soy my boyfriend was shocked...he was like "You look like you lost weight..." I hadn't of course, the bloating just went down a LOT.

 

I also gave up a food additive called carrageenan. It is illegal on the SCD diet, and there are a lot of articles stating how bad it can be for digestion. I don't know whether it's true or not, but I figured it's not something I need in my diet regardless. (It was in the almond milk and almond cheese I was consuming - it's a pretty common additive. I definitely feel better without it!) 

 

I know it can be super frustrating. My candida rash is HORRIBLE and I'm not eating anything that is feeding it. I only drink water, I eat only vegetables that are non starchy (like zucchini) etc etc...and my candida rash is still absolutely awful. Even though my stomach feels better than it used to, I still have a constant reminder that I have a long way to go. 

 

And I agree with others about having your thyroid checked. Good luck! 

 

Oh, and I noticed my first symptoms of celiac disease back when I was 13, I was diagnosed at 25 (almost 26)...so I did go over a decade undiagnosed, just to give you some reference! 

notme Experienced
notme
Posted

i am four years into the gluten free diet and still have inflammation - it sounds like you have had a similar (misdiagnosed for decades) experience as i have (massive intestinal damage for years!)  and i am still seeing improvement.  my hair has stopped falling out and i now have thicker, healthier hair.  take heart :)  keep plodding along, i know, it takes a long time.  but it took a long time to be as sick as we were, not just to heal, but to absorb all the nutrients we need to stay well and healthy.  like others, i had to remove soy and some other things for awhile (still fooling with the soy - i can have a little, but not over do it)  but now i can eat most things as long as i am vigilant about the gluten.  (and some people never get the soy back)  with dairy, for like, two years, i wouldn't get the g.i. issues like i did in the beginning, but it absolutely exhausted me everytime i ate it.  (like i had to take a nap to digest it?  wierddd....  )  now i can eat it with no problem.  

 

i imagine that if the damage to our intestines were evident, like a third degree burn or some other serious injury that you could *see*, it would be easier to have more patience?  hang in there  :)

icelandgirl Proficient
icelandgirl
Posted

I so agree with waitingindreams...removing carageenan was huge for me. My bloating and D were literally cut in half removing that substance which was in my almond and coconut milk. I'm 8 months in and I still have some inflammation but it has improved a lot. I was diagnosed with Hashis a month ago as well so having the thyroid checked I'd always a good idea. I'm going to continue to try to figure out this puzzle until I feel great!

GODSCHILD Newbie
GODSCHILD
Posted

HI IM GODSCHILD I TOO DIDNT GET THE RIGHT DIANOSEIS FOR TWO YEARS. I SEE YOU WENT DECADES OMG.

IM SO SICK I HAVE LOST 30 POUNDS IN TWO YEARS. I JUST STARTED THE GLUETIN FREE DIET TRYING TO AVOID SOY AND ALL THAT STUFF TOTALLY gluten-free, MY DOCTOR PUT ME STEROIDS THREE DAYS AGO BECAUSE HE TOLD ME THE DEMAGE WAS

SEVERE AND TO HELP THE SWELLON GO DOWN SO I CAN GET THE NUTERINTS ETC, AND GAIN WEIGHT. IM PRAYING YOU

ARE STILL GETTING BETTER. I DIDNT KNOW ANYTHING ABOUT GLUETIN ALLERGIES UNTIL NOW. VERY SERVIOUS AND SCARIE.

SORRI FOR THE SPELLING MY MIND IS FUZZIE WITH THIS CELIAC. CAN YOU OFFER SOME ADVICE ON HOW TO GAIN WEIGHT WITH THIS DIET. I DONT FEET LIKE IM GETTING BETTER BUT I KNOW ITS WAY TO SOON TO FEEL BETTER, I WILL TRY TO

HANG IN THERE. THANK YOU SO MUCH. ANY OTHER ADVICE WILL HELP ON OTHER ISSUES AND FOOD ETC, THANK YOU

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

Yah, I'm over two years gluten-free and I still have issues.  Less than before but my hair still clumps out on occasion, my body swells, migraines happen and arthritis is annoying... It IS getting better though.  Some of us just take a bit longer.

 

I agree that a thyroid check is good idea.  I have thyroiditis as well so I'm never completely sure which disease causes what symptom. LOL  :rolleyes:

 

Best wishes.

kareng Grand Master
kareng
Posted

HI IM GODSCHILD I TOO DIDNT GET THE RIGHT DIANOSEIS FOR TWO YEARS. I SEE YOU WENT DECADES OMG.

IM SO SICK I HAVE LOST 30 POUNDS IN TWO YEARS. I JUST STARTED THE GLUETIN FREE DIET TRYING TO AVOID SOY AND ALL THAT STUFF TOTALLY gluten-free, MY DOCTOR PUT ME STEROIDS THREE DAYS AGO BECAUSE HE TOLD ME THE DEMAGE WAS

SEVERE AND TO HELP THE SWELLON GO DOWN SO I CAN GET THE NUTERINTS ETC, AND GAIN WEIGHT. IM PRAYING YOU

ARE STILL GETTING BETTER. I DIDNT KNOW ANYTHING ABOUT GLUETIN ALLERGIES UNTIL NOW. VERY SERVIOUS AND SCARIE.

SORRI FOR THE SPELLING MY MIND IS FUZZIE WITH THIS CELIAC. CAN YOU OFFER SOME ADVICE ON HOW TO GAIN WEIGHT WITH THIS DIET. I DONT FEET LIKE IM GETTING BETTER BUT I KNOW ITS WAY TO SOON TO FEEL BETTER, I WILL TRY TO

HANG IN THERE. THANK YOU SO MUCH. ANY OTHER ADVICE WILL HELP ON OTHER ISSUES AND FOOD ETC, THANK YOU

If anyone would like to help Godschild, I have set her up with her own thread here:

https://www.celiac.com/forums/topic/109664-new-to-celiac-and-need-help/#entry932535

egger Apprentice
egger
Posted
  • Author

If anyone would like to help Godschild, I have set her up with her own thread here:

https://www.celiac.com/forums/topic/109664-new-to-celiac-and-need-help/#entry932535

Many packaged gluten-free are more fattening, but it doesn't matter if your intestines are not healed. I was the same weight on gluten-free diet until 6 or 7 months later when I gradually gained weight up to 10 lbs. Everyone is different in the healing process, though.

lizou Newbie
lizou
Posted

I live in France and have an autoimmune disease that causes massive amounts of inflammation and I am gluten intolerant. I tried lots of medicine, steroids etc. The thing that absolutely helped me the most and has given me my life and energy back is whole body cryotherapy.  It sounds completely insane and I was very skeptical but I found several scholarly articles on it, so I tried it an was AMAZED. I have been doing it for a year now and the difference is incredible. I even went to the salon yesterday and she kept telling me how much thicker my hair was... Helps when it is not falling out in clumps. :)  I would do some research and if you can find it in your area try it. (I think it is rare in the US tho, but more prevalent in europe and asia) Good Luck!

 

Open Original Shared Link

GODSCHILD Newbie
GODSCHILD
Posted

thank you I will look into it god bless pray for me im so very sick from this

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. trents
      - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products...
    2. Matthias
      - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing...
    3. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen...
    4. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    5. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,324
    • Most Online (within 30 mins)
      7,748
    mao5617
    Newest Member
    mao5617
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Unexpected gluten exposure risk from cultivated mushrooms

      By trents · Posted

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      Unexpected gluten exposure risk from cultivated mushrooms

      By Matthias · Posted

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • 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.