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. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

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

    • Total Members
      133,029
    • Most Online (within 30 mins)
      7,748

    Don1
    Newest Member
    Don1
    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

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.