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

  • 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. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      jmartes, Thank you for sharing more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is...
    2. Scott Adams
      - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    3. catsrlife
      - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady...
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from...
    5. Scott Adams
      0

      Gluten-Free Peanut Butter Cup Swirl Brownies

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,260
    • Most Online (within 30 mins)
      7,748
    sbr
    Newest Member
    sbr
    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

    • Mari
      Related issues

      By Mari · Posted

      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      Patiently Waiting to See Results

      By catsrlife · Posted

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Related issues

      By Mari · Posted

      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
×
×
  • 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.