Relapse Of Symptoms

[cdmama]

So my daughter was dx by biopsy and genetic testing. Her serum levels were elevated but not positive. We went completely gluten-free, she improved dramatically and all of her nutritional levels returned to a normal range within 7 months. For the last 3 months, she is having symptoms again. We eliminated dairy and she improved, but still having stomach aches and head aches. What next? 2nd day of school and she's absent. Been sleeping for hours.

[StephanieL]

How old is she?  Is she at the "trying to sneak it to be normal" age?  Have you added any new products that may be an issue?  Any new pets or anything?

[cdmama]

How old is she?  Is she at the "trying to sneak it to be normal" age?  Have you added any new products that may be an issue?  Any new pets or anything?

She is 8. No I don't think she's sneaking anything, just started school yesterday and our whole house is gluten-free. Her baby brother has multiple class III food allergies so all our "junk food" is allergen free. I make everything from scratch except for a box of enjoy life bars that are shelf stable for diaper bags and school back ups etc... No new pets. I made her a GI appt for tomorrow but I'm not sure what exactly to ask. She did have a fainting episode that was ruled a hypoglycemic event, I'm worried about diabetes, but she's not text book for that. (underweight, not overly thirsty) Ugh?

[StephanieL]

Hugs.  

 

When was the last time she had blood work? Have they looked at the labs for compliance lately?  I would start there and get things like nutritional panels, thyroid and general blood work while you're there. 

 

I hear you about all the things going through your mind. We are 4+ years gluten-free with a still as of yet not normal tTG on a strict gluten-free diet. I know he's not sneaking because he has anaphylaxis to several other foods that would be in anything glutony he would get. It's so frustrating.  I'm sorry you are having to deal with this.

 

Is she a nervous kiddo at all?  

[SMRI]

Diabetes is really hard to diagnose in kids, just an FYI.  Their blood sugars are hard to catch.  It might not be food related too.  Urinary tract infections can do weird things to you for example.  Underweight for Type 1 diabetes is very common and often one reason dr's look at that with kids.  Given she already has Celiac, diabetes is, unfortunately, not uncommon.  I'd put in a call to your GI and see about getting her blood sugar tested--she will probably have to fast to do that so you need to plan some before tomorrow.  

[cdmama]

Thank you. No her tTG hasn't been rechecked yet (10 months gluten-free). She had her nutritional levels checked in April and they were good then (dramatic improvement). Dr didn't want to recheck serum at that time seeing as it had only been about 6 months. The thing is that her bloodwork never showed an actual positive (I believe her highest was a 27, 30 is positive) before. We went off her symptoms and a mild class I wheat allergy, and then confirmed with a biopsy and genetic testing. She also had misdiagnosed DH at 18months of age for a full year. Planning on asking for the blood work, but what about food allergies or other autoimmune diseases? I've read about intolerances associated with celiac disease and "trigger" foods. I don't have a lot of faith in GI drs at this point seeing as my sons severe multiple food allergies went diagnosed as "reflux" for 3 years until I convinced his ped to pull the basic allergy panel as a last resort. All that aside, we're both sick of her being sick, tho she is in a much better state than pre dx. Thanks for all the input:)

 

Note: I had the bloodwork for celiac disease done on my 3 children and they were all less than 7  

[StephanieL]

The thing with allergy testing is it is notoriously inaccurate.  So even saying they have a + allergy result there is a 50% chance it's a false positive.  If there hasn't be a recognizable reaction (breathing, hives, throwing up and that kind of thing) general stomach ache isn't going to be an allergy.  Allergies present in 20 minutes to 2 hours and aren't really vague which it sounds like you are saying her symptoms are.  

 

If you are convinced it is something she is eating, you are better of making a very detailed food log (after getting general blood tests to look for other things).  That is the only way you will definitively figure out if it's something she's eating.

[cdmama]

Yes very true about the food allergies. My sons symptoms were far more severe and confirmed by an allergist. We do keep a food journal, but since I make everything at home, I would almost need to include recipes (we are dairy, gluten, egg, soy, peanut, treenut free) because a banana muffin isn't just a banana muffin when you're modifying everything. I just feel bad for her always hurting. Definitely have a starting point tomorrow and I put in a call to ask about glucose testing. Thanks again for all of the suggestions.

[SMRI]

Thank you. No her tTG hasn't been rechecked yet (10 months gluten-free). She had her nutritional levels checked in April and they were good then (dramatic improvement). Dr didn't want to recheck serum at that time seeing as it had only been about 6 months. The thing is that her bloodwork never showed an actual positive (I believe her highest was a 27, 30 is positive) before. We went off her symptoms and a mild class I wheat allergy, and then confirmed with a biopsy and genetic testing. She also had misdiagnosed DH at 18months of age for a full year. Planning on asking for the blood work, but what about food allergies or other autoimmune diseases? I've read about intolerances associated with celiac disease and "trigger" foods. I don't have a lot of faith in GI drs at this point seeing as my sons severe multiple food allergies went diagnosed as "reflux" for 3 years until I convinced his ped to pull the basic allergy panel as a last resort. All that aside, we're both sick of her being sick, tho she is in a much better state than pre dx. Thanks for all the input:)

 

Note: I had the bloodwork for celiac disease done on my 3 children and they were all less than 7

 

I guess it depends on the scale but most scales I've seen would put a 27 as a weak positive but back up with genetic testing and the biopsy, she is positive.  Also, is the GI a celiac specialist?  If not, well, they know some, but not all.  Look at it this way, say you sprain your ankle, you go to your GP, they tell you to ice it, wrap it in an ace bandage and tell you to stay off it for 2 weeks and hand you a pair of crutches.  Well, that is one way to take care of it, but if you went to a sports medicine clinic they would have you ice for 24 hours, then use contract baths for the next 72+ hours, then they would have you start rehab exercises in those baths to start building up the tissues again and would get you using your ankle as soon as possible.  They are both "right" but the second one is just more right.

 

If you have a child with multiple issues, relying on your GI to diagnose allergies is like asking your dermatologist to deliver your baby.  Then, people get upset because that doctor is wrong when they are really looking at the condition from their specialty.  Your son probably DOES have GERD, it's VERY common with allergies, but, your GI isn't an allergy dr and if you suspected allergies, you should have gone to an allergist.  What I would suggest is going to a pediatrician, present your concerns, and then have the ped work with you to schedule appointment with the appropriate specialists as need.  Or, if you are able, going to a clinic like Mayo that WILL look at everything from every angle to get a better diagnosis.

 

Also keep in mind, people want to make medicine an exact science, it just is not and there are twists and turns to every single patient.

[StephanieL]

Yes very true about the food allergies. My sons symptoms were far more severe and confirmed by an allergist. We do keep a food journal, but since I make everything at home, I would almost need to include recipes (we are dairy, gluten, egg, soy, peanut, treenut free) because a banana muffin isn't just a banana muffin when you're modifying everything. I just feel bad for her always hurting. Definitely have a starting point tomorrow and I put in a call to ask about glucose testing. Thanks again for all of the suggestions.

 

 

Yes it is more an ingredient list. We've had to do it and I would write things like pancakes and list the ingredients the first time or if I changed anything I would not the change.  If it was something prepared I would add the brand and save the packaging.  This was the only way we figured out DS's coconut/palm oil allergy and it took a while!  

[mommida]

You didn't specify the Celiac symptoms that have returned.

 

That being said...  My daughter was diagnosed and started on a gluten free diet when she was about 16 months old.  When she turned 6 in October her "Celiac " symptoms returned (but worse)

vomiting (this was getting worse and worse by the day up to 5 times a day) she was admitted to the hospital for dehydration, she also vomited blood and diagnosed with a virus

weight loss (no height growth either)

constipation and "D" cycles

dark circles

tired (exhausted really)

her hair started falling out

 

I went through everything thinking she was getting gluten.  (she was hospitalized for dehydration at least once a year, because when she started puking she just couldn't stop)

We had to go back to the pediatric gastroenterologist.  The way to diagnoses was an endoscopy with biopsy as these symptoms are common for a number of disorders/disease.  {H. Ployri. infection, parasitic infection, congenital defect, hernia, EE, and the list goes on}  She was diagnosed with Eosinophilic Esophagitus when she was 6. 

 

There is now a known connection between Celiac and EE

 

Go back to the ped. gastro. for an endoscopy ASAP.  do NOT change the diet (possibly removing the trigger and never getting a proper diagnoses) and there is a possibility the "trigger" is a seasonal allergy (as most cases are diagnosed at the end of summer/ early fall flare up of symptoms)

 

Good luck with testing and if you have any further questions don't hesitate to ask.

[dilettantesteph]

A special diet was developed for celiacs with ongoing symptoms that you could discuss with your doctors.  You can find it here: Open Original Shared Link

 

It can apply to children and you can read the story of a 9 year old girl who went on this diet here: Open Original Shared Link

 

I wish that we could get an updated story.  I hope that you child feels better soon.

[weluvgators]

Any new shampoos or toiletries? Any dental or orthodontic work happening? Good luck figuring it out. It is really hard working through these seemingly idiopathic, chronic issues. Feels like looking for a needle in the haystack sometimes....ah, that just makes me sick to think about that haystack anymore!