Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Ups & Downs


Jipps

Recommended Posts

Jipps Newbie

Hi everyone,

I'm 17 years old and I was diagnosed with celiac disease 2 months ago. I started to follow the diet strictly and I try to avoid gluten the best I can. :)

The problem is that, for some time, I will feel quite good, and then the next few days, I will feel bad again.

It's like going up, and then down again.

Is this normal? Was it the same with you guys?

I'm also still very tired, dizzy and I still have a lot of stomach issues sometimes ( and also bowel issues ).

I also eat lactose-free because that makes me feel bad too.

How long did the recovery take for you and is this normal, because it's already been 2 months that I'm gluten-free, right?


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

Im still with the ups and downs at 4 months.....they say it gets better....so hang in there. :)

oceangirl Collaborator

Jipps,

YES!!!!! "Ups and downs" (to put it mildly) are the way it goes for awhile! I am about three years gluten-free and the frustration of the first two years was INTENSE!!!!! And while I've felt the best ever for the past year, I still have an occasional glutening that I cannot trace. Just know it will pass and when you feel that way, go back to your strict "knowns" for a bit. A food diary complete with how you felt on that day is truly a gigantic help. I have faithfully kept one for 3 YEARS!!!!! It is not hard, second nature to me now, and it has always proven to be a godsend when I'm mystified as to what's bothering me. You are young and you will find that this diet and way of life becomes automatic. There's much more awareness of this disease now as well.

Hang in there, my dear, and be well!!!!!

lisa

  • 2 weeks later...
GFinDC Veteran

It can take variable amounts of time to heal. But you need to make absolutely sure you are not getting any hidden gluten in your food too. Watch out for spice blends, and any packaged foods or things in boxes. Just check everything before you eat it. I know one person who was not feeling good on the gluten-free diet after several months. Turned out she was eating rice krispies every week. Rice Krispies are not gluten-free, they have caramel color with gluten in it. So you really need to be careful. Or buy whole foods and cook them yourself so you know what is in them.

pandaman Rookie

2 years?!?! Thats crazy anyone have shorter healing times?

Good idea on the diary though...I didnt know pistachios had wheat in em I felt sick for a week...

Also I was wondering is binge drinking bad for healing? casue I liek to go clubbing somtimes...

gfp Enthusiast
It can take variable amounts of time to heal. But you need to make absolutely sure you are not getting any hidden gluten in your food too. Watch out for spice blends, and any packaged foods or things in boxes. Just check everything before you eat it. I know one person who was not feeling good on the gluten-free diet after several months. Turned out she was eating rice krispies every week. Rice Krispies are not gluten-free, they have caramel color with gluten in it. So you really need to be careful. Or buy whole foods and cook them yourself so you know what is in them.

Can't really stress this enough.....

2 years?!?! Thats crazy anyone have shorter healing times?

Healing depends on many things such as .. well how gluten-free and also general health....

Also I was wondering is binge drinking bad for healing? casue I liek to go clubbing somtimes...

I think you know the answer.... the healthier you are the faster you heal. Binge drinking certainly is not going to help.

oceangirl Collaborator

Pandaman,

It took 2 years for me to "work all the bugs out" and figure out other intolerances. And that was with a gluten-free home, never eating out and making all my foods from scratch! Perhaps I was trying to give people some perspective; there are many on this forum who have had similar experiences. Personally, it helps me to sometimes see the long view... You may be lucky and have no more issues very soon. It also took 35 years for me to get a correct diagnosis, so if yours has taken less than that, yay!

I find if you read BACK into older forum posts, you find just how many people have struggled for quite awhile before getting things right with this disease. It's good to put things in perspective.

I can't really comment on the binge drinking. I work with teens and young adults who are in trouble and I guess I'd just say what I say to them. It's a quote from the movie American History X: "What have you done to make your life better?" It's a good question for all of us...

Feel better,

lisa


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

My only comment on the alcohol (besides that it's not healthy) is that many contain gluten.

gfp Enthusiast
My only comment on the alcohol (besides that it's not healthy) is that many contain gluten.

Doubly so when in clubs etc. where who knows how the glasses are washed or what gets splashed about....

Not to mention our own defenses are down so its easy to accidentally pick up someones beer (done it myself) even when trying to stick to cider etc.

ravenwoodglass Mentor
2 years?!?! Thats crazy anyone have shorter healing times?

Good idea on the diary though...I didnt know pistachios had wheat in em I felt sick for a week...

Also I was wondering is binge drinking bad for healing? casue I liek to go clubbing somtimes...

You should feel better in a lot sooner than that if you are really strict about the diet.

You can still go clubbing without the alcohol. If you must drink then you should make sure that the doctor monitors your liver function on a regular basis. Celiac and the resultant autoimmune problems can have bad effects on the liver. In addition the liver in a person your age is not yet fully done growing. The cells are increasing at a higher rate than they do in an adult and severe damage can be done in a very short time. If you combine celiac with alcohol you risk losing your liver function. Unfortunately this is not a 'scare story' I have lived it in my family and it can happen with little warning. You can have just as much fun staying sober and watching the drunken folks make fools of themselves. Someone has to be able to tell the gang what they did at the club, right? You might as well be the one telling the embarrassing stories instead of the subject of them.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,803
    • Most Online (within 30 mins)
      7,748

    Nancy Larson-Kichak
    Newest Member
    Nancy Larson-Kichak
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.2k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ann13
      I have the exact same symptoms for a couple of wks now but I've been taking Symbicort for quite awhile at this point. I read you can get yeast infection in the vocal cords so I may ask my Dr. for antifungal meds cos I cant wait for an ENT exam. Also read on this site the connection between Vit D and K2 deficiency and asthma...doesn't apply to me cos mine is from mold in a house years ago but still might try and see if my asthma improves. I am Celiac and gluten causes the same symptoms but it says this inhaler is gluten free and it only started acting up so that option is out. I use Ventolin on occasion but using that for many many years. For me I will see if can switch inhalers to a brand that doesn't affect vocal cords as much, Advair is NOT one of them, plus will try the supplements. Do not suck on menthol lozenges cos menthol dries out cords more...sleeping elevated and sucking on ice chips gets the swelling down...at night this can really help especially. I can't continue like this so will get on everything this coming week.  
    • Rhenriksen
      Did a little more research just now and found out that even though the max methane should not exceed 10. It is normal to be around 3 and not rise. Again, I was at 13 so this does make me a bit suspicious. This was done back in May of 2024. I do recall being put on 14 day Antibiotic called Rifaximin but I'm really not sure if it made a difference, but if it did, then the problems still came back:( 
    • Rhenriksen
      I did a SIBO Test about a year ago, and I barely elevated on the Methane portion (max was 10 and I hit 13). Dr wasn't too concerned.    
    • trents
      Have you looked into SIBO (Small Intestine Bacterial Overgrowth)?  Also, MCAS (Mast Cell Activation Syndrome)/histamine intolerance (they go together like a hand and glove).  Both of the above are common in the celiac community.
    • Rhenriksen
      So tough for me when my symptoms are asymptomatic. Only excessive gas, floating stools and occasional discomfort in my lower right abdomen. These symptoms do not change, regardless of how I eat too:(  I'm sure that next week the GI doctor will discuss my findings and pathology results with me. It's at that time I may push for an MRI or CT scan of the abdomen. I prefer the MRI to avoid unnecessary radiation too. 
×
×
  • Create New...