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10 Yr Old Just Diagnosed, But Strange Symptoms
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Hi everyone. I hope someone out there has some advice. My 10 yr old son has been healthy his whole life, and has never had any digestive problems. Starting about 2 months ago, he began getting debilitating upper left abdominal pain. The pain would come in spasms. Appendix and gallbladder were ruled out. The GI did a hida scan and saw some inflammation where the small and large intestines meet. Did upper and lower scope and said he didn't see anything where he thought it would be but took some tissue samples just to have checked. GI office calls the next day and says the biopsy came back positive for Celiac, start taking Bentyl and start gluten free diet. They did the blood panel that day (we are still waiting on those results). He has now been attempting a gluten free diet for 5 days. The pain still comes and goes. Last night he got extreme vertigo and a migraine, back to the ER. Diagnosed it as a migraine, gave him med (I can't remember for the life of me what it was) and an IV and was getting ready to discharge him when he began having the same extreme pain in his chest. They basically said it was a muscle spasm and call the doctor in the morning. He was able to sleep for a few hours but as soon as he woke up the pain in his chest was back. His regular pediatrician did an xray, blood work and ekg, everything was fine. He said to stop taking the Bentyl for a few days and see if the spasms stop. 

 

I am so confused!!!! Are these common things with celiac disease? Can celiac disease just show up so quickly with so many symptoms? Any advice or suggestions are appreciated. Thanks!

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Wow!  I'm so sorry to hear about your 10 year old.  I'm sure others who have  kids with celiac disease will chime in, but I believe the meds given to your son probably caused some side effects.  

 

The vertigo and migraines can be Celiac related and should dissipate in a few more days or weeks.  And some people never have any symptoms!  It's a strange disease!  It's genetic, so others in your family should be tested.  I am thankful that I have a disease that can be controlled with a healthy diet! 

 

There's a newbie section regarding tips, ideas and suggestions for going gluten free.  The diet takes time to get used to it, but it is possible and it becomes second nature.  Healing can take a few weeks to a few years, but that's typically when if affects older people, like me! :o   It's imperative that he really does become gluten free -- no cheating!  Also, take a look at the University of Chicago's Celiac Center website.  It contains information that you can share with your extended family.  

 

Good luck and welcome to the forum.    Hang in there, Mom!

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Welcome to the forum!

 

Sounds like a possible reaction to the medication.  (Celiac is usually not prescribed medicine ~ just a gluten free diet.)  Some Celiacs need to be casein free (the protein chain of dairy) while the gut damage heals.

 

Every one's diagnoses journey can be very different. like... Didn't notice any symptoms, then showed anemic on a blood test -to-  in the hospital with life threatening malnutrition/dehydration.

 

A good test to run right now would be a check on vitamin and nutrient levels.  There was enough damage to get a diagnoses, so is likely that there is nutrient defiency.  Common defiencies... vitamin B12, Potassium, Calcium and the list goes on, but these standout to me right now as a possible link to the muscle spasm and migraine trigger.  Get some Methyl processed sublingual vitamin B12 tablets and drink a smartwater (with the added Magnesium, Potassium, Calcium combo) and relax breathe deeply and see if that leases some of the migraines and muscle cramps/ spasms. 

 

It is common to be iron defienct.  That you need to get tested and work with a doctor as iron can have a toxic level to the body.  Always research and discuss with a doctor the use of nutritional supplements as some are toxic (i.e. can cause death or brain damage ~i.e. Calcium) at certain levels.  Sometimes checking these levels can also show/ diagnose illness.  Dangerously high Calcium levels help diagnose my dad's cancer even though the symptoms of Calcium toxicity seemed like he had a stroke.

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Migraines are certainly common. Smartwater helps  or taking a magnesium tablet and eating a banana a day with PLENTY of water daily can help too.  Keeping my DD super hydrated  with a magnesium tablet 3 x  week reduced her migraines by 80 %, but that's us!!!

 

You can try switching out Lactaid for regular milk and use hard cheese like cheddar for a bit see if it helps with any tummy pains. Stay away from any non gluten-free oats.  It may take weeks/months ( it took us 2 months) before you see big changes and he may go thru some personality/emotional issue's while that is happening. 

 

Is your whole house gluten-free , if not triple check all his pots/pans /toaster etc... hidden gluten is everywhere

 

good luck !!

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Hi KJDaniels,

 

Welcome to the forum! :)

 

Here's a listing of reported side affects from Bentyl.  It seems to be kind of a mixed bag, which is pretty normal with drugs.  Some people have little negative affects, others have more severe affects from the same drug.  The doctor is wise to take him off the Bentyl for a wile to see if it is causing a reaction.  Another thing is to make sure the bentyl pills themselves are gluten-free.  They probably are gluten-free, but it's a good idea to check with the manufacturer to be sure.

 

http://www.askapatient.com/viewrating.asp?drug=7409&name=BENTYL

 

Celiac disease has 300 reported possible symptoms.  So just about anything seems to fit!  The classic GI symptoms are well known, but there are many other symptoms that are not GI related at all.  Some celiacs have no GI symptoms in fact, but only other symptoms.

 

It's helpful at the beginning of the gluten-free diet to stick with a simple diet.  Forget about fancy foods and processed foods and just eat whole foods, cooked at home from scratch.  There are far fewer ingredients to worry about in whole foods than in processed foods.

 

There are gluten-free breads, cereal, cake mix, cookies, donuts, pizza and tortilla wraps available now,  You can often find those in the freezer section.  But it i s generally expensive, and not as nutritious as gluteneny foods are.  So it's best to keep those things for treats than make them a regular part of the diet.

 

Symptoms from celiac can linger for quite a while.  It takes time for the immune reaction to taper off, and the attack on the gut to stop.  Because celiac damages the gut, people can become deficient in vitamins and minerals that are needed for the body to grow and repair itself.  That's one way they used to identify children with celiac, they didn't grow and had a pot belly from bloating and irritation.

 

Anyhow, keep the diet simple, and try to eliminate cross-contamination.  The fewer ingredients in a product, the fewer chances of hidden gluten.  Some of the tips below don't apply to your son but others should help.

 

Some starting the gluten-free diet tips for the first 6 months:
 
Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.
Watch out for cross contamination.
 
Helpful threads:
 
FAQ Celiac com
 
Newbie Info 101

 

 

 

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Keep a food journal to see if there are any other food sensitivities.  Cross contamination sites i.e.(going to barn on Saturday causes reaction~ what did you do at the barn? ~ fed horse oats.)  (used "pretty" soap at Sally's house ~ mom checks with Sally's mom ~ decorative soap has oats and wheat in it)

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Both symptoms (vertigo and migraines) are very common with undiagnosed Celiac Disease.  I had horrible vertigo that completely resolved after being on the gluten-free diet for awhile.

Chest pain can come from the gut, such as acid reflux problems...again, Celiac related.  I am so sorry your son is going through this at such a young age.....medical testing is horrible enough without being a kid.  Keep him strictly gluten-free and these issues should resolve and go away....probably faster with him than with us older folks!  Don't let the docs load him up with meds......he won't need it once he clears the gluten out and starts healing.

 

Bets of luck and fast healing to him!

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    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
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