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Not Celiac Or Even Gluten Intolerance

stanleymonkey

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stanleymonkey Explorer
stanleymonkey
Posted

we were referred by our gastro to gastro clinic at our local kid hospital (daughters history on earlier posts) he wanted new doc to scope to see what is going on inside

we were given a diagnosis by new doc of intermittent diarrhea , told to give Zantac for reflux, no follow up, no directions on meds, told to buy it over the counter, try giving a 2 yr old a tablet! He says she probably has nerve damage from a virus, this kid has been sick 3 times her whole life (flu, tummy bug, group all AFTER the tummy troubles started) and nothing else we done as all blood work is perfect

so frustrated and unsure of what to do, meanwhile the big d continues and she is being thrown out of preschool as she can't stay awake

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mommida Enthusiast
mommida
Posted

I haven't found your other posts as the background for this post.

"Possibly some nerve damage"? I think this doctor needs to explain that statment. You sound like that doesn't make sense to you either. Does this mean that there is evidence your little ones system isn't working?

Falling asleep at school? Was her iron level checked? Are there any other signs of low iron? Like PICA (the craving of non food items) This can also be a child chewing food but spitting it out instead of swallowing it.

Your options are going back to the same doctor. You will have to be more forcefull and ask specific questions. Ask the doctor to fully explain any findings and ask for specifics of what to do next.

Or find another doctor. Bring all of your child's records so no tests will have to be repeated. (You should always ask for a copy because doctors forget to mention way too much.*)

If you start a gluten free diet, you will not be able to test for Celiac. You can get the genetic test, but just because a person has the genes it does not mean they have Celiac. Many doctors will blow you off and say you don't have a diagnoses.

It is a horrible position to be in as a parent. You still have to find a doctor that can at least listen to you for your child's care and well being. The doctor will have to be supportive of the gluten free diet, especially when prescribing medications.

*Just double checked my daughter's most recent scope report. She was diagnosed with Eosinophilic Esophagitus again. The ped. gastro. made no mention of the stomach biopsy result "moderate chronic inactive gastritus". I guess her stomach still is having damage done to it that 7 years gluten free and 3 years of gluten, egg, fish, shellfish, and peas free diet hasn't kept her free of. Negative test result for H. Ployri. Facts I should have been told, but I guess the doc forgot to mention.

beebs Enthusiast
beebs
Posted

When they did the bloods did they check for deficiencies? I had lots of trouble getting anyone to take my little one seriously - had a Paed tell me there was nothing wrong when he was so iron deficient he couldn't breathe and developed a heart murmur. I then started researching and found the best Paed GI who knew heaps about Celiac. And lucky for me he was good, he even went as far- in the beginning- to say he thought there was nothing wrong, but that we would see what unfolds - a year later he told me I was right! So - if you are sure there is something wrong, keep a symptom diary for her and start looking for the best paed GI where you are. One that will listen to you and not just fob you off.

mushroom Proficient
mushroom
Posted

I can't believe that they just blew you off like that. There is obviously a problem and you need to keep seeking until you find someone who can discover what it is, or at least help you with managing her in the meantime.

Do get a copy of all her records, and maybe call your local celiac society for a recommendation of a pediatric GI who specializes in celiac.

beebs Enthusiast
beebs
Posted

Yeah- even if it isn't gluten related there is obviously something going on there. They always try and pass the buck with the ole "Toddler diarreha" call. So irritating!

GottaSki Mentor
GottaSki
Posted

The doctors you have been in contact with may be done...but you can find the solution. Time to network, here...Celiac Foundation....UOC -- University of Chicago has some excellent resources as do other teaching hospitals -- holistic, etc. Hang in there...the fight seems overwhelming and unfair...but well worth it if you can improve your child's health and quality of life. I didn't read the history but my kids and grands have all been misdx'd with one thing or another...including asthma, gerd (asparating acid during the night to cause endless smoker's cough), IBS, mental problems, worms, etc, etc, etc....that were ALL food based issues.

AVR1962 Collaborator
AVR1962
Posted

I have 4 grandkids, all on gluten-free diets. None have been doagnosed with celiac and none have gone thru all the testing like your little guy. You have to do what is best for his health and by the sounds of it he needs to try a gluten-free diet. THere may be some deficiencies going on if there was mention of nerve damage. If labs were done I would ask for a copy. If not, make sure he goods a good multi and his diet has enough vit D, calcium, magnesium, potassium, iron, B12, and c.

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stanleymonkey Explorer
stanleymonkey
Posted
  • Author

she has pica but all her test were okay

they checked all her enzymes thyroidd even re did her cystic fibrosis test

we have gone gluten free day 1 done, but the Proctor was insistent Most books tests and the fact her weight is finally back to where it was a year ago means nothing is wrong besides maybe some nerve damage I feel like giving him some never damage

stanleymonkey Explorer
stanleymonkey
Posted
  • Author

think my previous posts were in pre diagnosis ...... Oops

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