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

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.

  • 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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      30

      My journey is it gluten or fiber?

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    4. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,819
    • Most Online (within 30 mins)
      7,748

    Charlette Jillie-Martinez
    Newest Member
    Charlette Jillie-Martinez
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
×
×
  • 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.