Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

My 6 Year Old Son, Worried
0

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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 :(

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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. :)

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

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?!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,662
    • Total Posts
      918,516
  • Topics

  • Posts

    • Celiac - Not yet diagnosed but feel like I'm dying.
      Hi Dylan I just wanted to join SLLRunner in welcoming you to the forum and yes, do ask to be tested for Celiac and Chrons. My nutritionalist told me that celiac disease is a great mimicker of many illnesses which I think must make a doctor's job all the harder when it comes to diagnosis.  For many of us it took us  a long time to get a diagnosis - for about eight years before my own diagnosis I had ulcers,  odd migraines and hallucinations on waking, anxiety, elevated blood protein but no obvious cause for it, anemia, numb hands and arms in the mornings, and eventually the abdominal pain and severe diarrhea. It was all scary stuff but  it was only when I got the last two symptoms, for six weeks, that I was tested for celiac disease (for the protocol here in the UK is that if you have a new gastric symptom for more than six weeks you should have further investigations).  I still wonder if I hadn't had that gastric pain and diarrhea whether my doctors would have even thought it was celiac related? After all you have been through it is not surprising that you are feeling depressed.  A lot of people feel very depressed and anxious before their diagnosis.  You are doing the right thing seeing a new doctor, and hopefully you are just around the corner from getting some long awaited answers.   Keep us posted.  You will find  some great advice here and support during your journey.  All the very best.
    • Costco
      This forum post came up when I Google searched Kirkland Dish Soap. I called them today and they said there is no gluten in the dish soap. Janis 
    • Food tolerance issues post-diagnosis
      In light of the studies that found some probiotics that are labeled gluten-free yet tested over 20ppm I wouldn't touch them. Now those would be the powder or pill forms. Yogurt is not affected by that. Since you don't have a problem with dairy then I would say eat some yogurt every day. I like Chobani Greek because it has more kinds of cultures. Remember now that powder or pill forms of probiotics do not come under the gluten-free labeling law. The same for OTC & prescription meds. You need to check every single one of those. There are a few online sites where you can check things like that or ask here but as far as prescription meds -- call the manufacturer EVERY TIME. I also wanted to tell you in case you didn't already know that since celiac is genetic and can present at ANY age then all your first degree relatives need to be tested every 2 years in the absence of symptoms and immediately if symptoms present between the 2 year periods. As far as the digestive enzymes go, I tried Digest Gold for a short time & it really didn't seem to do anything for me however I will say I had a lot of issues going on at the time so I might not know if they helped or not. I decided to quit them in order to take that out of the equation so I could try to pin down what was causing me distress. The fewer things in the mix you know. I have heard people report the same as your consultant said. Some say they helped & some say they didn't. Remember Jammy, you're just in the beginning stages. I KNOW you want to heal & heal FAST. Been there, done that! It's like this: you didn't get sick overnight & you're not going to heal overnight. Patience is the watchword here. It's hard I know! You just want to get on with your life. We can all relate.  Again, I'm going to say to eat foods easy on your gut. WELL cooked foods. No raw carrots, coconut, nuts & stuff like that. Easier on your gut would be nut butters.... peanut butter, cashew butter, almond butter etc.... It's sort of like being a baby ---  soft, easy to digest foods. Bone broth is a great healer for you gut & extremely nutritious as well as being easy on the digestion. Here's just one recipe: http://wellnessmama.com/5888/how-to-make-bone-broth/
    • Food tolerance issues post-diagnosis
      Thanks for the tip! Will try that out in the next few days. By the way, has anyone had any joy with probiotics or digestive enzymes in terms of symptom relief/speeding up the healing process? I asked my consultant about this when I saw him last week and he said that some people find them beneficial while others don't, but obviously I'm keen to try anything that may help, with uncomfortable fullness/bloating/gas still being my main issue  - is it worth giving them a go?
    • Are The Following Gluten-free?
      I realize that this is an old thread but I would just like to say something about label reading. Just because a product says gluten free on the label doesn't mean that you don't have to read any further and can have complete trust in the product.  There are a lot of products that state that they are gluten free on the package and then you find out that they are processed in plants that also produce wheat products. If you are super sensitive, you need to know that information. I am afraid that there is no escaping reading labels in supermarkets unless you know that the company makes it's products in a truly gluten free environment (even then you should read labels because ingredients can and do change, even in products made in gluten free facilities), It's a pain to stand there and read labels but if you are super sensitive, you might just have to do that. For example, I am gluten and lactose intolerant but also sensitive to nuts and sesame. While it may be fine for other gluten intolerant people to eat something that's labeled gluten free which is produced in a gluten free facility that also processes nuts, for me it is not.. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,753
    • Most Online
      1,763

    Newest Member
    The sweet cheeks
    Joined