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
Jipps
Posted

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
ShayFL
Posted

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

oceangirl Collaborator
oceangirl
Posted

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
GFinDC
Posted

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
pandaman
Posted

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
gfp
Posted
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
oceangirl
Posted

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
RiceGuy
Posted

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

gfp Enthusiast
gfp
Posted
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
ravenwoodglass
Posted
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.

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. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Second chance

      Current careteam is still up in the air about my celiac thanks to me googling "celiac specialist" what popped up was once known as a good name hospital back in the days. I went in for answers for my declining health, it was the autoimmune part that did me in, being a former bus driver.I read that in my medical records so easily downplayed, i refused the...
    2. Scott Adams
      - Scott Adams replied to cristiana's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      British Coeliacs: Marks and Spencer's have launched a Gluten Free Colin the Caterpillar Cake.

      Are you trying to make us in the USA jealous? 😉
    3. Scott Adams
      - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      Thank you for sharing your experience, Florence. It’s important to clarify, though, that proteins like zein in corn, panicin in millet, and kafirin in sorghum are not considered gluten and have not been shown to trigger the same autoimmune intestinal damage seen in celiac disease. Some people with celiac disease do report symptoms with certain gluten-free g...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Second chance

      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable p...
    5. Scott Adams
      - Scott Adams replied to elisejunker44's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Schar's products contain wheat!

      I understand why that feels concerning. Some Schär products use specially processed wheat starch that has had the gluten removed to meet strict gluten-free standards (under 20 ppm in the U.S. and EU), which is why they can legally and safely be labeled “gluten free” for people with celiac disease. However, wheat must still be listed in the ingredients and ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,603
    • Most Online (within 30 mins)
      7,748
    Dale S
    Newest Member
    Dale S
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Jmartes71
      Second chance

      By Jmartes71 · Posted

      Current careteam is still up in the air about my celiac thanks to me googling "celiac specialist" what popped  up was once known as a good name hospital back in the days. I went in for answers for my declining health, it was the autoimmune part that did me in, being a former bus driver.I read that in my medical records so easily downplayed, i refused the gluten challenge! Why the hell would I eat Gluten when im Celiac coming to them for answers when my body is falling apart? Glutenfree since 1994. They did unnecessary colonoscopy KNOWING im glutenfree. A celiac specialist would know that would be pointless to do if not eating gluten and it was done!Im so angery with that hospital for not explaining celiac disease and withholding information, Downplaying my ailments , mental distress,  causing more health issues, ect. All this could have been avoided If medical records were sent, when asked, explained and done properly. Im so angery.I do have the celiac dietitian on here in June and linked her up to my current health care yesterday, fingers crossed hopefully with that, the understanding of celiac is explained it's not just a food allergy will be understood. 
    • Scott Adams
      British Coeliacs: Marks and Spencer's have launched a Gluten Free Colin the Caterpillar Cake.

      By Scott Adams · Posted

      Are you trying to make us in the USA jealous? 😉
    • Scott Adams
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Scott Adams · Posted

      Thank you for sharing your experience, Florence. It’s important to clarify, though, that proteins like zein in corn, panicin in millet, and kafirin in sorghum are not considered gluten and have not been shown to trigger the same autoimmune intestinal damage seen in celiac disease. Some people with celiac disease do report symptoms with certain gluten-free grains, oats, or other foods, but that reflects individual intolerance or sensitivity—not a proven “gluten-mimic” effect that damages the small intestine. Certified gluten-free oats are considered safe for most people with celiac disease, though a small subset may react to avenin. If specific foods consistently cause symptoms for you, it makes sense to avoid them personally, but it’s helpful for readers to know that these foods are still medically classified as gluten-free and generally safe for the broader celiac community.
    • Scott Adams
      Second chance

      By Scott Adams · Posted

      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable primary care provider and, when needed, a gastroenterologist or dietitian familiar with gluten-related disorders. Advocating for yourself is not unreasonable—it’s part of managing a chronic condition. If your current provider relationship isn’t working, it’s appropriate to seek care where you feel respected and properly supported.
    • Scott Adams
      Schar's products contain wheat!

      By Scott Adams · Posted

      I understand why that feels concerning. Some Schär products use specially processed wheat starch that has had the gluten removed to meet strict gluten-free standards (under 20 ppm in the U.S. and EU), which is why they can legally and safely be labeled “gluten free” for people with celiac disease. However, wheat must still be listed in the ingredients and allergen statement because it is derived from wheat, even though the gluten protein has been removed. For individuals with a true wheat allergy, these products are not appropriate—but for those with celiac disease, properly tested gluten-free wheat starch is considered safe under current medical guidelines. That said, it’s completely reasonable to prefer products made without wheat starch if that gives you greater confidence, and clearer front-of-package communication could certainly help reduce confusion for shoppers.
×
×
  • 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.