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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store.

10 Yr Old Just Diagnosed, But Strange Symptoms

7 posts in this topic

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.


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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