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Our son is newly diagnosed with celiac and his severe stomach pain

Salina

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Salina Newbie
Salina
Posted

For two and half years we have been trying to figure out what is wrong with our six year old son.  He started having urinary incontinence and would drop to his knees in pain and then urinate on himself . First the doctors thought he had  epilepsy,  then they thought he could have tethered cord syndrome, then a thick blaster, the list goes  on....  The last doctor we saw was a G.I. doctor, she tested him for celiac disease which he tested positive off the charts for and the biopsy confirmed that he does have celiac disease. We cleaned our house got new utensils, cutting boards , gave away food etc... He has been  gluten-free for a week now.  My husband and I are concerned because he's gluten-free now,  but his symptoms (the severe stomach cramping he calls them twisties in the stomach)  Have gotten worse. He drops to his knees in extreme pain and loses control and urinates.  He may not  urinate every time he has the twisty but most of the time he will have some leakage. He will have these "twisties" up to 10 or more a hour. We are wondering if any parents  with kids who have celiac disease  have experience this as well or if anyone has any suggestions for us.   In addition under his eyes look a very dark and his skin is so pale . As you can imagine we are very nervous and worried for him .  Any feedback would be greatly appreciated. Thank you. 

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Darren Apprentice
Darren
Posted

So sorry to hear this it must be so hard and upsetting to worry for your son.  I was diagnosed 1.5 years ago and i can tell you that as hard as it may be, try not to worry. It takes a while to overcome the gluten "withdrawal" and the symptoms do not just go away that quick. It will take at least a few weeks maybe longer for things to turn positive, but they WILL turn positive. He will heal fast children heal much faster than adults. He will be ok trust me, he will be ok. Stay the course and take care of him and yourselves as you start this tough journey. It gets better don't worry :)

Darren Apprentice
Darren
Posted

Also make sure you check everything he consumes for gluten. Be more strict than you think you need to be...toothpaste, spices, medications, everything that is processed...check ingredients diligently and look up products on websites to ensure he isn't exposed to any gluten sources anywhere. Takes a hike to become an expert but like all things it comes with time. 

GFinDC Veteran
GFinDC
Posted

Hi Salina,

I am sorry to hear about your son's pain.  It does take some time to heal from celiac damage to the gut.  My gut had spasms for about 5 to 6 weeks after going gf.  The worst of it will probably be over in a week or 2 though.  In the meantime, the cleaner of gluten you can keep his diet the faster he will recover.  Celiac disease is an autoimmune condition and the immune system doesn't give up very quickly.  The immune system is also very sensitive to invaders (gluten) in our case.

It is best to avoid sugar and carbs at first, and also dairy and processed foods.  Carbs, sugar and dairy feed bacteria that can cause gas and pain.  Eating mostly meats, veggies, nuts and eggs will allow his gut to heal faster.  Peppermint tea can be helpful for gas.  I would suggest Pepto Bismol for soothing the gut but there is some concern about aspirin in young children.  Well cooked foods (softer) are easier to digest for anyone.

The Newbie 101 thread has some tips for getting started also.

Welcome to the forum Salina! :)

 

cyclinglady Grand Master
cyclinglady
Posted

Just wanted to add that all first-degree relatives should be tested for CD even if symptom free.  

I am sorry that your son is so sick.  On a GF diet he should improve.  It just takes time.  Luckily, kids tend to heal much faster!  ?

RMJ Mentor
RMJ
Posted

Sometimes lactose intolerance goes along with Celiac until healing of the villi occurs,  you may want to try eliminating dairy for a while.

Salina Newbie
Salina
Posted
  • Author

Thank you everyone. All of your advice is so helpful. We will see how he feels over the next few weeks. Thank you again.

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Darren Apprentice
Darren
Posted

You're most welcome, any questions just ask and this group of good people will help. Your son will be ok, life throws curveballs, this one is hard at first but it is manageable and you'll adjust.  He will be ok in no time!

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    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
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      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
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    • JoJo0611
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      Thank you. 
    • deanna1ynne
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