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

Ped Gi Appt. In Oct.


pricklypear1971

Recommended Posts

pricklypear1971 Community Regular

So,

My son has been having more frequent stomach aches and D. Enough that he openly talks to me about it. We had a convo last night and it sounds like he's tired of it and is willing to do something about it.

So.....I am picking up the lab order for his annual antibody testing next week at my appointment...and we have an appointment at UA Pediatric Gastroenterology in Oct.

Sigh.

Now I have to keep him on gluten through his fall break (3 weeks) at home, since I've been relying on school lunch to gluten him the past year.

I so didn't want it to come to this, but here we are.


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

Ok.

Went to the grocery store for gluten. Figured he may as well eat some of the stuff I never bring home because it may be his only opportunity. Came home with Twinkies, Goldfish, pretzels and Pop Tarts.

He is in heaven, except he has very bad D.

Discovered that he snuck the remaining two small bottles of Weinhard's Orange Cream Soda that he wasn't supposed to get into.

So I have a kid with D chugging sugary soda, and stuffing Goldfish crackers and Pop Tarts in his mouth and wondering why he can't stop cramping and pooping.

I predict a stiff learning curve.

I threatened to throw it all out and shove vital wheat gluten pills down his throat.

mamaupupup Contributor

:) You are a good Mom :)

Yes, it's hard to gluten load...and so important! If you know that you are willing to do an endoscopy, try to set that up now too so that not too much time passes between the initial GI visit and endoscopy (so you don't have to continue to keep him on gluten even longer).

Also, you might ask to have his digestive enzymes sampled from his villi during an endoscopy, if you go that route. Not many doctors know of that test, but Dr. Pietzak at Children's Hospital in Los Angeles does (and your doctor could contact her). Interestingly, one of our girls had effectively NO digestive enzymes for sugars, lactose, fats...but craved all those things. I'm sure if I had had orange cream soda anywhere, she would have consumed it...

Yes, I let my kids have a Ding Dong before their endoscopies--made my mom happy that they'd get a chance to taste "American culture" ha ha.

Thinking of you!

P.S. I made my girls "celebratory" gift baskets for going gluten free--packed with all sorts of yummy gluten-free treats (cookies, crackers, pancake mixes, gluten-free lipstick, etc.)

Maybe your son would like a box of treats too...when his gluten-free day comes!

pricklypear1971 Community Regular

Thanks for telling me about the digestive enzyme testing.

I don't know if they'll schedule an endoscopy prior to the visit. I am going in with new labs, that's a plus. Of course, I have no idea what they'll say... Maybe after I get the labs I'll call and see if they'll set it up.

As it turns out we both had a stomach virus- which, interestingly enough, seemed like a magnification of his already present symptoms. No fever, etc., but until it hit me neither one of us suspected. So...the urgency has subsided but he still had bouts of nausea, cramping, d (mostly mild c) and sometimes vomiting. It's a few months early for the blood retesting (10 months) but close enough.

So, we will continue to gluten him up. He's thrilled.

  • 3 weeks later...
pricklypear1971 Community Regular

Well, just left peds office. He wants to do an abdominal X-ray, a new celiac panel from a different lab (to see if anything differs), and schedule on endoscopy.

He wants to see what's going on...he thinks its functional constipation but won't make a dx until we go through all of it. He doesn't think it CAN'T be celiac, doesn't think we're crazy, and is actually doing something.

All good news so far.

pricklypear1971 Community Regular

So, X-ray shows kid is very constipated.

Well, at least I can honestly (and without sarcasm), tell him he's full of crap.

mamaupupup Contributor

:) sounds to me like you and your doctor are good matches and are doing a great job taking care of your son!

Thinking of you!

Keep us posted!


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,425
    • Most Online (within 30 mins)
      7,748

    Helpless in VT
    Newest Member
    Helpless in VT
    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

    • Wheatwacked
      Click on the image to make it larger.  Maybe doesn't work on phone browser,  That was from 2021. Absolutely, they should be tested, The point is you have symptoms that the doctors don't understand and malabsorption may be the cause.   Not trying to.  But much of your rant includes refeferences that may indicate multiple nutritional deficiencies.     Some countries also have tax incentives and financial aid for Celiacs.   Celiac disease is recognized as a disability under the ADA because it substantially limits major life activities like eating and digestive function. Protections require reasonable accommodations in public accommodations, including schools (504 plans), colleges, and hospitals. These often include providing safe, gluten-free food, though they do not force restaurants to provide it.  As far as your recovery, eat gluten free.  Get healthier now and worry about diagnosis later.  Many here on the forum have gone ten or more years looking for a diagnosis, with many doctors and many misdiagnosis along the way. It really doesn't matter why, but you cannot eat  gluten.  That is what is important.  With gluten out of the way, maybe the doctors can make sense of your remaining symptoms.  If you need the ADA, then a medical diagnosis is the way to go.  Meantime you are delaying your recovery from whichever celiac disease or NCGS and the inevitable step one of Gluten Free Diet. tWe come to share experiences and maybe it will help someone. In reality, I don't care.  By the way I have stopped 6 medications Against Medical Advice because they did not do their job and the side effects were crippling. This is a lifelong fight for your life.  Pick you battles carefully.  Assume the worst, celiac disease, and deal with it.  Denial is not just a river in Egypt. Pleased to meet you, too.  
    • catnapt
      I can't read any of this... the print is too small and it looks like all you eat is milk, cereal cookies and some fruit..?   and some coffee?   
    • catnapt
      fortunately you don't need to understand anything that doesn't directly affect you.  🤗 you earlier assumed I was deficient in nutrients and minerals due to celiac malabsorption but...... now it doesn't matter? because why? it might mess up your deficiency argument?  if you don't know the difference between having actual celiac disease and NCGS....!!!! correct me if I'm wrong but actual celiac disease causes actual physical damage to your body and increases your risk of certain cancers... just as a start. I have an identical twin sister- IF I have celiac disease, chances are she may too. I have a daughter and other first degree relatives... you also get ADA protections with an actual celiac diagnosis.  but again, not your decision to make  nor to understand. but to suggest that there is no valid reason to find out for sure is incomprehensible on a board dedicated to celiac disease. if you ask me but you didn't so- nevermind.   don't worry though, another member has declared that in her expert opinion based on who knows what- that I don't have celiac!!!  but instead I am "full of beans" and probably killing myself for eating such scary things, I don't know.   if you think you can diagnose me off one single biomarker and a hunch of some sort...based on your history and some research study that you think is relevant- um, well, Glad to meet you, Dr McCoy aka Bones. 🫠 I did not know this was a place where strangers want to play doctor  I am hoping to hear from other members who are not so quick to make judgements and... stuff, let's just leave it at that... perhaps there aren't any.  time will tell I guess                    
    • Wheatwacked
    • Wheatwacked
×
×
  • 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.