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

Tyler's Doctor Is Frutstrating Me...

Shalia

Recommended Posts

Shalia Apprentice
Shalia
Posted

Well, got Tyler's doctor to listen to complaints, and he even is willing to consider not doing bloodwork and biopsies and go based on dietary response. (Woot!) However...

He wants me to put Tyler BACK on gluten not once, but TWICE as a gluten challenge, to make sure it doesn't coincide with a stomach bug, to "prove" that it's Celiac. Even with a positive Enterolab test. *AACK!* How could he think I want to make my kiddo sick ON PURPOSE TWICE just to prove a point to him?

I don't get doctors. Really, I don't. It's not enough that *I* have a diagnosis. No, I have to torment my kid TWICE. Grr.

But, on the bright side, no biopsy, he told me to stop if Tyler gets sick (duh!) and I got the notes from him saying gluten free diet for the daycare and the school so they'll be forced to comply. So I got what I need. :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


AndreaB Contributor
AndreaB
Posted

I agree GGRRR.

When does he expect you to do this. I assume if he doesn't what to assume it's a bug that you'll have to wait until after flu/cold season.

Does he expect you to have him be sick for x number of days?

I don't really expect answers.....just rhetorhical questions.

Shalia Apprentice
Shalia
Posted
  • Author
I agree GGRRR.

When does he expect you to do this. I assume if he doesn't what to assume it's a bug that you'll have to wait until after flu/cold season.

Does he expect you to have him be sick for x number of days?

I don't really expect answers.....just rhetorhical questions.

No, he wants me to do it once now, and once in the summer when cold and flu season is over. *sigh* And I don't know what he expects in relation to school. Tyler gets so sick he's out of school for a couple of days vomiting. I can't do that to the poor kid. :(

AndreaB Contributor
AndreaB
Posted

I wouldn't want to either. It's not as if gluten free is an unhealthy diet.

Did I read correctly that he gave you notes? Do you really have to go through with the challenge then?

Ursa Major Collaborator
Ursa Major
Posted

I'd just let him know that you KNOW gluten makes Tyler awfully sick, you HAVE done the challenge already, and have no intention of making him sick on purpose now. Period.

Nantzie Collaborator
Nantzie
Posted

As a mom, I would consider an accidental glutening a challenge and just call it a "challenge" when you talk to the doctor.

"We did the challenge last week, Doctor" would really mean one of the kids at school touched his lunch on pizza day and he was home for the rest of the week.

My daughter was saved from a glutening just last week because another child (new) touch her food while they were all eating pretzels for snack. Jenny wasn't at the table yet so didn't see it. The rest of the class saw it happen and told the teacher. (This is preschool, btw. Gotta love those kids for looking out for her. They're very protective. :wub: )

This isn't exactly adhering to the letter of the doctor's order, but that's probably what I would end up doing.

Nancy

Nic Collaborator
Nic
Posted

I agree with Nantzie. With kids there is bound to be an accidental glutening at some point. That can be your challenge. If my son gets gluten his symtoms return for at least a week. So there is the proof he cannot eat it.

Nicole

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


skipper30 Enthusiast
skipper30
Posted

Ask the doc if he wants to schedule a time to come over and help take care of your child while he is dealing with the effects of being "challenged". :blink:

I love how people who go to school and spend THOUSANDS of dollars to get all of this knowledge can be so ignorant and thoughtless sometimes!

I agree with the others, you know what makes him sick...I'd let it go at that! We had an accidental not long after our dx and I was in a bit of possible denile...well that made things CRYSTAL clear for us!

Good luck...glad you got your notes for school!!

e&j0304 Enthusiast
e&j0304
Posted
No, he wants me to do it once now, and once in the summer when cold and flu season is over. *sigh* And I don't know what he expects in relation to school. Tyler gets so sick he's out of school for a couple of days vomiting. I can't do that to the poor kid. :(

I would love to know how all of can distinguish a gluten reaction from the flu or a cold. My son got into regular pretzels yesterday. He has been fine all day long- playing and happy. About 3 hours after eating the pretzels he suddenly came down with a high fever (104.4) and was vomitting and having tons of gas and loose stools. Now, was it the pretzels or was he already going to get sick with the flu? I hate not knowing. My son was never diagnosed with celiac. He is on the diet because it cleared up his "toddler diarrhea". He had all the tests done and they were negative. It is pretty simple to have him on the diet because my 3-year-old is on it.

So I guess we'll never know. It makes me lean toward flu since he is still having a high fever without tylenol and motrin. He was up almost all night last night vomitting.

Thanks for any insight into this and sorry I'm asking so many questions on your thread!

Shannon

Shalia Apprentice
Shalia
Posted
  • Author
I wouldn't want to either. It's not as if gluten free is an unhealthy diet.

Did I read correctly that he gave you notes? Do you really have to go through with the challenge then?

Yes, I already got the notes from him.

I'm terrible. What I'm figuring is there will EVENTUALLY be slip ups. Someone, somewhere, will give him what he's not supposed to eat. I'll call THOSE challenges, and leave his intestines alone when I have control.

I feel guilty ignoring the doctor, though, when he's all willing to go on dietary response with me.

As a mom, I would consider an accidental glutening a challenge and just call it a "challenge" when you talk to the doctor.

"We did the challenge last week, Doctor" would really mean one of the kids at school touched his lunch on pizza day and he was home for the rest of the week.

My daughter was saved from a glutening just last week because another child (new) touch her food while they were all eating pretzels for snack. Jenny wasn't at the table yet so didn't see it. The rest of the class saw it happen and told the teacher. (This is preschool, btw. Gotta love those kids for looking out for her. They're very protective. :wub: )

This isn't exactly adhering to the letter of the doctor's order, but that's probably what I would end up doing.

Nancy

Yeah, I think this is what I'm going to do. I can't in good conscience make him sick on purpose. What kind of mom KNOWS teh answer to her kid's problem and then screws with him anyways? That's just cruel. :(

So I'll let accidental glutenings be the challenges. That'll be proof enough for me.

Shalia

Ask the doc if he wants to schedule a time to come over and help take care of your child while he is dealing with the effects of being "challenged". :blink:

I love how people who go to school and spend THOUSANDS of dollars to get all of this knowledge can be so ignorant and thoughtless sometimes!

I agree with the others, you know what makes him sick...I'd let it go at that! We had an accidental not long after our dx and I was in a bit of possible denile...well that made things CRYSTAL clear for us!

Good luck...glad you got your notes for school!!

I should. *grin* I should ask him if he wants to take care of an embarassed, sick, upset 8 year old who's mad cause he knows he's not supposed to poop in his pants, but can't help himself cause his gas and D is so bad.

That might clear up the 'challenge' question. :D

vampella Contributor
vampella
Posted

When my doctor said the GI would want to have Emmah back on gluten for a biopsy..I said...NO WAY IN HECK!!

I told him, there was no way I would ABUSE my child, and to me making her sick by feeding her a food that is making her so ill is child abuse.

It's ok to abuse my child IF the DOCTOR say's it's OK..Ummmm..NO!!

I will tell the GI the same thing. no way in heck.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,807
    • Most Online (within 30 mins)
      7,748
    MoonBear
    Newest Member
    MoonBear
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • KathyR37
      New here

      By KathyR37 · Posted

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      New here

      By Scott Adams · Posted

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      New here

      By KathyR37 · Posted

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
    • Scott Adams
      Celiac attack confusion and anxiety

      By Scott Adams · Posted

      This article, and the comments below it, may be helpful:    
    • nanny marley
      Manitol and mri

      By nanny marley · Posted

      Oh yes I can understand the tiredness after going threw all that, must be exhausting especially on the mind I have high aniexty so I can understand that , I wish there more easier ways for people to get help , I had a MRI on my spine some years ago without anything it was really quick and no prep , I understand the need for  them to see better with the bowel ,but you think they would use something a little less traumatic  for ibd sufferers on the bowels by now ,I hope your feeling better today 🙏
×
×
  • 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.