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. - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Prana Organics no longer GFCO-certified

    2. - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    3. - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    4. - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

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

    • Total Members
      132,925
    • Most Online (within 30 mins)
      7,748

    Jimlock
    Newest Member
    Jimlock
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • TheDHhurts
      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what protocols/standards/testing they have in place. The person that wrote back said that they are now certifying their gluten free status in-house, but that she couldn't answer my questions related to standards because the person with that info was on vacation. Not very impressed, especially since it still says on their website that they are GFCO-certified. Buyer beware!
    • cristiana
      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
×
×
  • 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.