1 Year On Gluten Free Diet, But Still Have Inflammation

[egger]

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.

[ravenwoodglass]

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]

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]

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]

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]

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]

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

[nvsmom]

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 

 

Best wishes.

[kareng]

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]

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]

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!

 

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[GODSCHILD]

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