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Teen Dd Wont Accept Diagnosis

ptkds

By ptkds
in Coping with Celiac Disease

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ptkds Community Regular
ptkds
Posted

Hello all! I used to be pretty active on here but life got in the way of that over the last few years! I have 4 dds, and the 3 younger ones were all diagnosed years ago. I also have it.

 

Anyway, my 13 yr old dd was dx when she was six. At the time, she was skin and bones, but no outward symptoms that I really noticed. But when my younger dd was dx, I had all of us tested and hers was positive. So I took her off gluten. Over the next couple of years, she would have a violent reaction to even trace amounts of gluten.

 

A few months ago, she begged me to let her have gluten. I finally caved, fully expecting her to get sick and learn her lesson. She never got sick. She has been eating gluten for 2-3 months without a problem. I have recently banned gluten for her again, and she is very unhappy about it. Now she is begging me to have her retested and claims that she doesn't believe she ever had Celiac. I insisted that she was in that teen remission that some teens go through and the gluten was probably doing damage to her body.

 

Then she just spent a week with her grandma and grandma has convinced her that Celiac disease isn't that common in families and that the "Teen remission" only lasts a couple of weeks. We don't have a dr that's very knoweldgeable about Celiac.

 

What do I do?

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SMRI Collaborator
SMRI
Posted

Was she bloodwork and biopsy positive?  I've never heard of "teen remission" so I don't know what that is all about.  Can you get her to a doctor that knows more about it? Maybe do a gluten challenge for 6 or 8 weeks before and involve her in the doctoring process so she sees first hand...including a frank discussion, with photos if possible, with the doctor about what gluten does to your intestines?

ptkds Community Regular
ptkds
Posted
  • Author

She only had bloodwork, no biopsy. I didn't want to put her through it at the time.

 

When I used to be active on here, I read from several people that teens can often eat gluten without symptoms. They called it "teen remission" I think.

nvsmom Community Regular
nvsmom
Posted

Tell her the truth: there is no such thing as remission in celiac disease.  Symptoms can wax and wane but you are still sick and destroying yourself even if you don't feel it at the moment.  It's like a cancer - it can grow pretty big and become life threatening before you ever feel it. Symptoms do not completely correlate to health when it comes to celiac disease, and it is like that for most AI diseases - consider rheumatoid arthritis or lupus whose symptoms will flare-up and quiet down.... same sort of thing as celiac disease.

 

I remember feeling pretty good as teen. I played varsity sports, had a job and enjoyed life. I got a bit more run down than my friends but I was young and I would bounce back.  So what if I got an occasional headache and pms'ed pretty badly. No big deal.  I had some stomach aches but not as much as I did when I was younger.  Then I got mono, but did't realize it because I was often tired, so I kept doing everything and ended up with pneumonia. I bounced back.  Then I almost died when I was 18 because I developed another autoimmune disease, most likely kicked off by untreated celiac disease. I had to cancel my Europe trip and spend a good portion of time in the hospital and on some serious drugs. I still have never made it to Europe...

 

You need to put your foot down and be honest with her - you thought she would get severe enough symptoms to scare her straight but it didn't work out because she is a silent celiac now.  Tell her.  You need to keep her gluten-free.  If she is likely to cheat at school, you might need to meet her for lunches or even homeschool her for a while.  Make sure she understands that she is wrecking herself for stupid things like pizza.  Pull the grown-up card: if she wants to be treated like a grown-up then she needs to be responsible with her most basic thing, herself.  Tell her if she can't handle that, then you will have to continue to treat her like a young child.

 

Don't let her eat gluten again. It's a poison to her.  :(  I'm afraid that you slipped up there and probably made it tougher on yourself because a new precedent (of eating gluten without consequences) has been set.  Retesting and doing the biopsy might be a good idea to re-enforce the fact that celiac disease does not go away... ever.  Just be aware that retesting could backfire on you.  It is possible that she will pull negative results as those tests are only 75-95% sensitive (they miss up to 25% of celiacs).  Get as many blood tests as possible so she is more likely to get a positive result.  Same thing with the endoscopic biopsy - it misses about 1 on every 5 celiacs.  If you do retest to make a point, LOAD her up on gluten (2 or more slices of bread or equivalent per day) and do it for a good 3+ months.... Hopefully the results will drive the need to stay gluten-free home.  If they are negative, then you are in a pickle, and I would probably resort to lying to her if she won't stay gluten-free.

 

Best wishes.  ((HUGS)) You are in a tough spot and I hope you are able to make her realize that there is no such thing as remission.

ravenwoodglass Mentor
ravenwoodglass
Posted

She only had bloodwork, no biopsy. I didn't want to put her through it at the time.

 

When I used to be active on here, I read from several people that teens can often eat gluten without symptoms. They called it "teen remission" I think.

I think what you are referring to is what is called the 'honeymoon period'.  It is the reason doctors used to think that kids could 'outgrow' celiac. They now know that although it can take time for antibodies to build back up damage is still being done. It is not a remission it is more like someone is a 'silent celiac' for a while but symptoms will return. 

GFinDC Veteran
GFinDC
Posted

I think what you are referring to is what is called the 'honeymoon period'.  It is the reason doctors used to think that kids could 'outgrow' celiac. They now know that although it can take time for antibodies to build back up damage is still being done. It is not a remission it is more like someone is a 'silent celiac' for a while but symptoms will return. 

 

That's prolly sumthin the doctors should study a bit more Ravenwood G.  I've heard it called that in the past also.  And women who are preggers can have a kind of remission because their bodies immune systems have to adjust for the baby.  Anyway, I don't think there has been a lot of study on the honeymoon effect so no telling right now if it is causing a real, temporary remission of the disease process.  The safe bet is that it is not.

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