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.

  • 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. - trents replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    2. - HAUS posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    3. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

    4. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,432
    • Most Online (within 30 mins)
      7,748

    Betty Alex
    Newest Member
    Betty Alex
    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

    • trents
      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    • HAUS
      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
×
×
  • 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.