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My 6 Year Old Son, Worried
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12 posts in this topic

Hello everyone

 

It's me... again!

Anyone out there know about kid's blood tests?

I'm still waiting for my son's celiac panel to come back but in the mean time he's had his FBC done.

 

Most of it is normal...

except his lymphocytes are REALLY down 2.4 (range 5.5-8-5)

and eosinophils are up 0.7 (range 0.0-0.4)

 

My doctor said its all fine, not to worry, he doesn't want any further investigation.

 

I'm worried. Can't help it. Anyone???

 

I've researched a bit, seems as the auto immunes can play a part in lowered lymphocytes, (as well as lymphatic/blood cancers, of which at this moment i am ignoring due to not wanting to panic!)

 

(My son is active, and energetic but does suffer from lots of colds, viruses, things hit him bad... he very often has dry cracked lips or ulcers. And occasionally complains of feeling sick in the morning after getting up, or tummy ache through the day.... not every day, just here and there.)

 

Would really appreciate some help, I know my useless doctor won't help, I know I'm on my own... except for you guys! And I'm now worried about my angel :(

 

Help. pleeeeaase.

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Sorry, I don't know.  Sorry you are going through this.  I hope it will resolve nicely and you will get some definitive answers that you can rest on.

 

Diana

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Sorry, I don't know.  Sorry you are going through this.  I hope it will resolve nicely and you will get some definitive answers that you can rest on.

 

Diana

Thanks Diana for answering.

This is all so stressful :( 

I live for my little boy, this has really knocked me down.

I hope you are right and someone knows something helpful and calming

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Our daughter had a high eosophinol count and we were told she had an allergy to something and was reacting, our allergist did skin testing and wanted our GI to test for eosophiniloc esophageas ( sorry can't spell it), of course he refused

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Our daughter had a high eosophinol count and we were told she had an allergy to something and was reacting, our allergist did skin testing and wanted our GI to test for eosophiniloc esophageas ( sorry can't spell it), of course he refused

thanks for that... what was the outcome may i ask?

has she got celiac? or eosiphiniloc thingy? (can't spell it either!!)

 

it's so worrying, i know my son does have allergies but hasn't had any reactions to anything recently...

i can just about cope with all the crap that i have just been through, but now for my little angel, i really can't bear it. 

 

i'm quite depressed over it all, i know i need to get a grip, but just wanna cry my eyes out :(

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Our GI refuses to test her, he told us she had no issues with gluten,mans no chance of EE even though her allergist said she did.

He diagnosed her with reflux, and told us not to change her diet. After her getting even sicker, we cut out gluten. She miraculously got better. We went back to him and he told us off for removing gluten, said if we kept her on it he would of scoped her. Asked if he would scope her if we put her back on gluten, he said why would you want to make her so sick, a gluten challenge could kill her. Ummmmmm he said she had no issue! Our allergist was furious wishes she had seen her first she said she would have diagnosed her on the spot with celiac disease based on her symptoms and genetics, and would have made them scope her for EE.

Our official diagnosis is possible gluten sensitivity.

Our allergist thought the high eosophinol count could have been her immune system was so taxed with the gluten it was just doing what it knew best...make allergy cells. A high eosophinol count means he is reacting to something. Skin prick tests are unreliable, food allergies come from eating something and it entering your digestive system, not putting it on your skin! Our daughters skin prick for milk was a tiny hive, but ingesting it sent her into anaphylactic shock. Keep a food diary, allergic reactions are not necessary the full hives, vomiting, or anaphylaxis type. Kiwis makes my hands burns. Keeping a diary you may find something that makes him a bit "off".

As for celiac disease, the testing in kids is very unreliable, especially the younger they are. When my youngest starting showing symptoms and became anemic our ped said forget all the official testing cut out gluten for life, and assume its celiac disease waiting for a positive test is just going to make her really I'll and do irreprable damage.

The high lymphocytes could be from a virus he had, my youngest had croup and a month later the doc could tell she been Ill just from her blood tests, lymphocytes take a while to come down after a virus or infection.

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OK my daughter has both Celiac and Eosinophilic Esophagitus.  (EE or EoE).

 

I haven't heard of an EE kid only having 1 trigger.  So a scope in the future (if problems are still going on) might diagnose EE.

 

There is now a known connection between Celiac and EE.  Newly diagnosed EE should have Celiac testing done.

 

It is fairly common for EE patients to test negative in all aspects of allergy testing.  It truely is not an allergy.  The immune system responds to a trigger (food allergen or airborn) and starts produces eosinophils.  Once activated, eosinophils stay active for up to 12 days.  An elimination diet can be the only way to try and determine what the individuals "triggers" are.  It is usually suggested as the top 8 allergens (wheat, dairy, eggs, soy, fish, shellfish, nuts, and tree nuts) peas are also highly reactive.  In your case glutenfree too.

 

This is not an easy diet to follow but can be done.

 

It would be best to get a scope done, get the eosinophil count.  Do the diet and responding with better health.  Get the scoope done see the healing.  Then try to challenge the suspected foods.  (small amount in simplest form for 3 days if tolerated.)

 

Any questions feel free to PM me or just post here.

 

Been living with Celiac since my daughter was 16 months old, EE since she was 6, and now she is 10.

 

But seriously get a different doctor!

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One more comment:  As a mother of 7

 

I think it is usually more stressful to deal with a child's illness than your own.  When they have a headache, I think about the worst headache I ever endured, multiply it by two and consider my child has that!  Most things do get less scarey over time.  Hang in there.

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Desperate Lady has that right!

 

There is also a list of illnesses/disorders that can present as severe GERD (with vomitting).  You should go over these possibilities with your gastro. and ped.  It can be as simple as parasite infection.  (I say simple because it can be solved with medication, not a forever diet change.)

 

Things would be going much smoother if you had  a better doctor to work with. :)

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Our GI refuses to test her, he told us she had no issues with gluten,mans no chance of EE even though her allergist said she did.

He diagnosed her with reflux, and told us not to change her diet. After her getting even sicker, we cut out gluten. She miraculously got better. We went back to him and he told us off for removing gluten, said if we kept her on it he would of scoped her. Asked if he would scope her if we put her back on gluten, he said why would you want to make her so sick, a gluten challenge could kill her. Ummmmmm he said she had no issue! Our allergist was furious wishes she had seen her first she said she would have diagnosed her on the spot with celiac disease based on her symptoms and genetics, and would have made them scope her for EE.

Our official diagnosis is possible gluten sensitivity.

Our allergist thought the high eosophinol count could have been her immune system was so taxed with the gluten it was just doing what it knew best...make allergy cells. A high eosophinol count means he is reacting to something. Skin prick tests are unreliable, food allergies come from eating something and it entering your digestive system, not putting it on your skin! Our daughters skin prick for milk was a tiny hive, but ingesting it sent her into anaphylactic shock. Keep a food diary, allergic reactions are not necessary the full hives, vomiting, or anaphylaxis type. Kiwis makes my hands burns. Keeping a diary you may find something that makes him a bit "off".

As for celiac disease, the testing in kids is very unreliable, especially the younger they are. When my youngest starting showing symptoms and became anemic our ped said forget all the official testing cut out gluten for life, and assume its celiac disease waiting for a positive test is just going to make her really I'll and do irreprable damage.

The high lymphocytes could be from a virus he had, my youngest had croup and a month later the doc could tell she been Ill just from her blood tests, lymphocytes take a while to come down after a virus or infection.

Thank you for that, really appreciated.

And useful. The whole allergy thing is a nightmare, my son has multiple food allergy. And funnily enough, as he was being tested for celiac i tried to get more gluten into him everyday (not much gluten in our house), and his lips started swelling on bread rolls??? What a nightmare.

Im SO exhausted by it all, it's actually making me dpressed, somewhere I can't afford to go to again.

So maybe then these eosinophills were up because of the reaction to bread?? His lymphocytes were down though not up...

 

Thanks again, grateful mummy :)

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OK my daughter has both Celiac and Eosinophilic Esophagitus.  (EE or EoE).

 

I haven't heard of an EE kid only having 1 trigger.  So a scope in the future (if problems are still going on) might diagnose EE.

 

There is now a known connection between Celiac and EE.  Newly diagnosed EE should have Celiac testing done.

 

It is fairly common for EE patients to test negative in all aspects of allergy testing.  It truely is not an allergy.  The immune system responds to a trigger (food allergen or airborn) and starts produces eosinophils.  Once activated, eosinophils stay active for up to 12 days.  An elimination diet can be the only way to try and determine what the individuals "triggers" are.  It is usually suggested as the top 8 allergens (wheat, dairy, eggs, soy, fish, shellfish, nuts, and tree nuts) peas are also highly reactive.  In your case glutenfree too.

 

This is not an easy diet to follow but can be done.

 

It would be best to get a scope done, get the eosinophil count.  Do the diet and responding with better health.  Get the scoope done see the healing.  Then try to challenge the suspected foods.  (small amount in simplest form for 3 days if tolerated.)

 

Any questions feel free to PM me or just post here.

 

Been living with Celiac since my daughter was 16 months old, EE since she was 6, and now she is 10.

 

But seriously get a different doctor!

Yep, getting the forms for a new doctor today... seriously... i had a telephone 'chat' yeaterday with him... he said it's nothing to worry about, but we'll keep a close eye on him.... huh??? why do you need to keep a close eye on him if he's fine? he spent 10 minutes telling me it was completely normal.

 

So. EE. Interesting, what are the symptoms?? I will google it!

My son has multiple allergies (nuts, peanuts, peas, eggs, some fruit, lentils, and now bread or something in it, used to be to fish  but we got white fish back)

We have a very restricted diet for him already, and I have a restricted diet my self... 

Thank you for your help. Very appreciated.

 

3rd time lucky with new doc. UK is useless you know... I had my scope last nov, and i havent had a follow up appointment yet?!

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One thing that is not mentioned in symptoms is bad breath and large spotted tonsils.  Read up and let me know if you have any other questions I (or others here) can help you with.

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    • Thank you for going through my long post and responding. I have been both dairy and gluten-free free for 10 months now. Yes, even I was worried about other food allergies. I mentioned it to my GI doc and asked if I need food allergy test to eliminate other allergens. He said, food allergy tests give a lot of false positives and are not accurate. He said: not everything is because of food allergy and it's refractory celiac which is causing issues as the jejunum biopsy, done recently, is showing villous flattening.

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