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
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • 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.