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
      132,005
    • Most Online (within 30 mins)
      7,748
    Peg55
    Newest Member
    Peg55
    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

    • Wheatwacked
      Chances of being coeliac

      By Wheatwacked · Posted

      Welcome @JoJo0611. That is a valid question.  Unfortunately the short answer is slim to none.  Be proactive, when the diagnosis process is completed, start GFD.  Remember also that the western diet is deficient in many nutrients that governments require fortification.  Read the side of a breakfast cereal box. Anti-tTG antibodies has superseded older serological tests It has a strong sensitivity (99%) and specificity (>90%) for identifying celiac disease. A list of symptoms linked to Celiac is below.  No one seems to be tracking it, but I suspect that those with elevated ttg, but not diagnosed with Celiac Disease, are diagnosed with celiac disease many years later or just die, misdiagnosed.  Wheat has a very significant role in our economy and society.  And it is addictive.  Anti-tTG antibodies can be elevated without gluten intake in cases of other autoimmune diseases, certain infections, and inflammatory conditions like inflammatory bowel disease. Transient increases have been observed during infections such as Epstein-Barr virus.Some autoimmune disorders including hepatitis and biliary cirrhosis, gall bladder disease. Then, at 65 they are told you have Ciliac Disease. Milk protein has been connected to elevated levels.   Except for Ireland and New Zealand where almost all dairy cows are grass fed, commercial diaries feed cows TMR Total Mixed Rations which include hay, silage, grains and concentrate, protein supplements, vitamins and minerals, byproducts and feed additives. Up to 80% of their diet is food that cannot be eaten by humans. Byproducts of cotton seeds, citrus pulp, brewer’s grains (wheat and barley, rye, malt, candy waste, bakery waste. The wheat, barley and rye become molecules in the milk protein and can trigger tTg Iga in persons suseptible to Celiac. I can drink Grass fed milk, it tastes better, like the milk the milkman delivered in the 50's.  If I drink commercial or Organic milk at bedtime I wake with indigestion.    
    • captaincrab55
      Celiac getting dentures

      By captaincrab55 · Posted

      Can you please share your research about MMA acrylic containing gluten?   I comin up blank about it containing gluten.  Thanks in Advance,  Tom
    • Aretaeus Cappadocia
      Dedicated gluten-free Restaurants in East Bay (near San Francisco):

      By Aretaeus Cappadocia · Posted

      I strongly recommend 2 dedicated gluten free (gluten-free) restaurants in my area (East Bay of San Francisco Bay Area) (2025) -- Life is Sweet Bakery and Café in Danville. I've been a few times with friends and tried multiple entrees and salads. All very good and worth having again. I've also tried a number of their bakery goods. All extremely good (not just "good for gluten-free"). https://lifeissweetbakeryandcafe.com/ -- Kitara Kitchen in Albany (they have additional locations). I've been once and had the "Buritto Bowl". Six individual items plus a sauce. Outstanding. Not just "for gluten-free", but outstanding in its own right. Vibrant flavors, great textures. I can't wait to go back. https://www.kitava.com/location/kitava-albany/  
    • Martha Mitchell
      Celiac getting dentures

      By Martha Mitchell · Posted

      I'm 67 and have been celiac for 17yrs. I had cataract surgery and they put a gluten lens in my eye. Through a lot of research, I found out about MMA acrylic...it contains gluten. It took 6 months for me to find a DR that would remove it and replace it with a gluten-free lens . I have lost some vision in that eye because of it . I also go to a prosthodontist instead of a regular dentist because they are specialized. He has made me a night guard and a few retainers with no issues... where my regular dentist didn't care. I have really bad reactions to gluten and I'm extremely sensitive, even to CC. I have done so much research on gluten-free issues because of these Drs that just don't care. Gluten is in almost everything shampoo, lotion, food, spices, acrylic, medication even communion wafers! All of my Drs know and believe me I remind them often.... welcome to my world!
    • trents
      Chances of being coeliac

      By trents · Posted

      If this applies geographically, in the U.K., physicians will often declare a diagnosis of celiac disease based on the TTG-IGA antibody blood test alone if the score is 10x normal or greater, which your score is. There is very little chance the endoscopy/biopsy will contradict the antibody blood test. 
×
×
  • 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.