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:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Hmart replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

    2. - trents replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

    3. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      10

      Help I’m cross contaminating myself,

    4. - DebJ14 replied to Jhona's topic in Introduce Yourself / Share Stuff
      30

      Does anyone here also have Afib

    5. - Hmart posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,924
    • Most Online (within 30 mins)
      7,748

    Mckshane
    Newest Member
    Mckshane
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
      I have a lot to learn!  Thank you
    • DebJ14
      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
    • Hmart
      The symptoms that led to my diagnosis were stomach pain, diarrhea, nausea, body/nerve tingling and burning and chills. It went away after about four days but led me to a gastro who did an upper endo and found I had marsh 3b. I did the blood test for celiac and it came back negative.  I have gone gluten free. In week 1 I had a flare-up that was similar to my original symptoms. I got more careful/serious. Now at the end of week 2 I had another flare-up. These symptoms seem to get more intense. My questions:  1. How do I know if I have celiac and not something else? 2. Are these symptoms what others experience from gluten?  When I have a flare-up it’s completely debilitating. Can’t sleep, can’t eat, can’t move. Body just shakes. I have lost 10 pounds since going gluten free in the last two weeks.
×
×
  • 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.