Pediatric Celiac And Hashimoto's

[Nicnicsmom]

Hello!  We truly need your help!!!  My son is almost twelve and we've been fighting *this* particular fight for the past two years, and I really hoping *someone* out there recognizes this!!!  I'm also hoping someone is located in our City (major Southern Metropolitan Medical Center in Texas    ).  Here's what's up (and bear with me as, for a while, you're going to go...umm.....we're all here for Celiac......?):

 

Kiddo has had long, long medical history of immune insufficiency; drug resistant Strep\ENT infections (which required loads of antibiotics); drug induced Tardive Dyskinesia (Parkinson's) brought about by interaction between anti-viral medicine (for stomach yeast [Autism protocol - son **was** diagnosed as HF Autistic\Aspberger's....but that's another story] and Seroquel XR); serum iron deficiency and Vitamin D Deficiency; years of high positive ANAs and anti-Double Stranded DNAs.  And that's the highlights...lol.  Soooo....

Kiddo has had croup every few months since birth....even until now...and he's almost 12.  Here's the kicker:  his neck swells up with swelling in front of his thyroid, and the subglottic area of this throat swells and constricts.  He gets inspiratory stridor with it as well.  Sometimes a croupy cough, sometimes not.  This "attack" comes and goes....sometimes for a day or two, sometimes for a few days.  I first noticed the neck swelling out like a tire when he was five and in the hospital for emergency tonsil surgery (they were closed together).  The docs at [very large downtown medical center hospital in a well known Southern Texas hospital] saw the enlargement and said "meh...must be part of the tonsil problem" and did zero to investigate....and discharged him].  Then came Autism and Parkinsonian movements (tardive dyskinesia) and I just got used to seeing his neck out like that.  

 

So, I've been to every specialist you can think of and we've done every single bloody lab you can think of......Endocrinologists (who said "hey you've got big neck muscles....everything else is just fine"); Rheumatologists ("hey labs are fine but you have muscle contracture!"); one ENT ("yeah you've got subglottic edema...go see a endocrinologist!  Bye!"); Pedi said "hey....what about Celiac...let's do a lab."  Negative.  Thyroid labs, done quadruple times by different docs, perfect!

So, here we are at our most recent incantation of the croup\neck\stridor\hoarseness thing, and we get a second opinion at another, brighter, ENT who goes "What the hey!!!  I see it!!!  We need to figure this out!  This is crazy!  Hey....there's some new research out there about Celiac and Hashimoto's...here let me print off some of that research for you at PubMed so you can read for yourself."  Ahhh, the heavens opened and the angels sang.  "Oh, and let me try to get you in with my wife's Endocrinologist...who typically doesn't see kids."  Of course, I haven't heard anything back from ENT's nurse on Endo appt.

See, you were wondering when I'd get around to Celiac, weren't you?  The smart ENT thinks it's Celiac *with* Hashimoto's as he said recent research has  found a high incidence of Hashimoto's with Celiac and vice versa in kids.  ***Is this ringing any bells with you guys???***

 

We actually have a Gastro appointment for July 31st and we're on the call list (as it's technically still active).  We do not have an Endo as of yet.  We're at the "celiac panel your pedi did came back as negative" stage...which I've found in our city means no doctor will do anything until you have positive labs.  And yes.....we've considered Celiac for some time as my kid has just about every single marker\symptom for Celiac. 

If any parent out there has experience with this, or with Hashimoto's with Celiac I've love to talk to you.  

[nvsmom]

Welcome to the board.

 

He's right, celiac and Hashis are linked. About 5% of Hashi's patients have celiac disease compared to less than 1% of the regular population.

 

Some celiacs do not have positive blood work. It appears to be more common in kids. What tests were done?  The DGP IgA and DGP IgG are the best tests for kids. Doctors usually give the tTG IgA and tTG IgG, and the EMA IgA (which detects advanced damage). If you have the old tests, feel free to share the results; there are many knowledgable people around here who could help interpret them.

 

I just have my own personal experience to share. I have had celiac disease since babyhood and I am certain that I have had thyroiditis since my early 20's, it is possible that I had it younger but I have no proof.  I do feel much better know that we have everything under control (gluten-free for a year and thyroid is mostly suppressed (TSH is 0.11 and free T3 is top of the reference range) with natural desiccated thyroid (synthroid didn't cut it for me).

 

This mom (Stephanie) is dealing with both right now. This is a post she made about it: https://www.celiac.com/forums/topic/102924-ttg-back-up-after-anaphylactic-reaction/#entry879058

 

Best wishes.

[Nicnicsmom]

Welcome to the board.

 

He's right, celiac and Hashis are linked. About 5% of Hashi's patients have celiac disease compared to less than 1% of the regular population.

 

Some celiacs do not have positive blood work. It appears to be more common in kids. What tests were done?  The DGP IgA and DGP IgG are the best tests for kids. Doctors usually give the tTG IgA and tTG IgG, and the EMA IgA (which detects advanced damage). If you have the old tests, feel free to share the results; there are many knowledgable people around here who could help interpret them.

 

I just have my own personal experience to share. I have had celiac disease since babyhood and I am certain that I have had thyroiditis since my early 20's, it is possible that I had it younger but I have no proof.  I do feel much better know that we have everything under control (gluten-free for a year and thyroid is mostly suppressed (TSH is 0.11 and free T3 is top of the reference range) with natural desiccated thyroid (synthroid didn't cut it for me).

 

This mom (Stephanie) is dealing with both right now. This is a post she made about it: https://www.celiac.com/forums/topic/102924-ttg-back-up-after-anaphylactic-reaction/#entry879058

 

Best wishes.

Thank you!!!!!  I'll see about getting copies of the latest round of Thyroids labs to post. All we ever hear is "nope, they're all normal."  

 

Docs and I have been putting off the biopsy for years. Even our ENT said that half the time the biopsy was negative. Sooo..what is ya'll's experience with that?

Heh..just got a call from ENT doc saying that the Endocrinologist they were trying to get me into doesn't see anyone under seventeen.  Yeeees...we knew that five days ago.  Kiddo was up last night with the barky cough part of croup and a breath output in the red zone. No ER.

 

I'll check out that post and thanks again!!  

[mommy2krj]

Hugs! I am in a smaller...probably much MUCH smaller metropolitan area in central Wisconsin....we are currently in the I don't know what's going on anymore, stage. Little man had positive blood work but apparently has had a negative biopsy. We see the GI doc today for the results so I guess I'll know more after that. Hopefully.

There is lots of information here and incredibly helpful people. It's simply nice sometimes to know that you aren't alone. We're not dealing with Hashimotos.....though who knows at this point, we could be. I'm dealing with frustrating doctors that only felt like running two of the tests of the Celiac panel (still don't understand why they wouldn't run the whole thing!) as I did panic a bit and got everyone in my family tested. We all came back negative, but I'm really not positive that's the case. Pretty sure my older son and my husband would benefit greatly from going gluten free....and myself and my daughter probably would to a lesser extent too. And the only thing they saw so far as I know from the endoscopy was a diagnosis of gastritis....which from all I've been reading can go hand in hand with Celiac. So, right now I really don't know what we're going to find out at the doctor today. I'm crossing my fingers that this doctor really knows what's what with Celiac.

[StephanieL]

Hi, Welcome and Hugs!

 

We do deal with Celiac (that was dx 3.5 years ago) and just recently got to the root as to why his Celiac tests were wacky due to Hashi's.

 

Our story is similar in the "All's well, alls well, alls well" dept. We have been through 6 allergist, 3 GI's 3 Endo's and a few others here and there for good measure.

 

Here's what I would do.  Get the FULL Celiac AND Thyroid work ups. All of them again.  If you get negative serology, Go for the genetic test. This will not prove it IS Celiac but if it's negative, you can still have a non-celiac gluten intolerance.   You can then decide if you want to push for an endoscopy if the Celiac genetics are there.  Keep him ON GLUTEN till you decide about the endoscopy. 

 

After that, got gluten-free.  See what happens.   Also, does he have a goiter? Could that be part of the problem with the breathing/croup like things?

 

Feel free to message me if you want. 

[Nicnicsmom]

 

Hugs! I am in a smaller...probably much MUCH smaller metropolitan area in central Wisconsin....we are currently in the I don't know what's going on anymore, stage. Little man had positive blood work but apparently has had a negative biopsy. We see the GI doc today for the results so I guess I'll know more after that. Hopefully.

There is lots of information here and incredibly helpful people. It's simply nice sometimes to know that you aren't alone. We're not dealing with Hashimotos.....though who knows at this point, we could be. I'm dealing with frustrating doctors that only felt like running two of the tests of the Celiac panel (still don't understand why they wouldn't run the whole thing!) as I did panic a bit and got everyone in my family tested. We all came back negative, but I'm really not positive that's the case. Pretty sure my older son and my husband would benefit greatly from going gluten free....and myself and my daughter probably would to a lesser extent too. And the only thing they saw so far as I know from the endoscopy was a diagnosis of gastritis....which from all I've been reading can go hand in hand with Celiac. So, right now I really don't know what we're going to find out at the doctor today. I'm crossing my fingers that this doctor really knows what's what with Celiac.

Huge Hugs to both of ya'll!!  Thank you for the great advice and an understandable ear!  First as for the goiter:  docs *feel* an larger than normal thyroid, and see swelling *in front* of the thyroid...but a CT scan and Ultrasound say that it's just fine.  What the hey!  A Vibroscope (as in an imaging tool that there are only 2 in Houston) found the subglottic edema, but the CT scan and Utrasound on the same day found zero.  Our Pedi did a "Celiac Panel" that I have not seen (and need to get) which came up negative.  As for thyroid labs, they've been done by Pedis and Rheumatologists - all fine.  

I'd love to have all these labs run again (with an Endo and Gastro running them) as well as an uptake scan of his Thyroid.  I swear his thyroid flares up.  As for Celiac....good Lord the boy has just about every symptom you can name:  low iron (also low Vitamin D); constipation\diarrhea; he can and has cleared a classroom with his gas (for years); sees PT for Balance issues; loads of behavioral diagnosis (ADHD, anxiety, etc.) and stomach, back and joint pain.  If I let him eat bread or anything with lots of gluten in it, it's like he turns into a junkie....he'll cram as much as he can as fast as he can.  Then his behavior goes off the chart for 3-4 days.  Same with sugar.  Any of that sound familiar?  

Heck....if and when we EVER get an Endo or Gastro appointment, I'm hitting that kid with eggs, dairy, bread...you name it!  And we're still having ugly croup issues at night.  This makes a solid week.  The boy's 12!

 

I'm really glad you guys took the time to write (and hoo ray I'm not the only one out there trying to figure Celiac and Thyroid out together).  Hugs again!

[mommy2krj]

Oh yes...the acting like a junkie part sounds familiar...though not with my Celiac kid. My older son, when he was younger, would go through a loaf of bread a day. I was a young mom then and thought nothing of it for a while....until it kept going on. It took quite a while before I was able to get him to chill out on his bread intake. I thought, out of my whole family, if anyone else was going to test positive with Celiac...he most definitely would. But he didn't. I did research bread addiction type behavior....but this was quite a while ago and I had never heard of Celiac's. Bringing it up to the doctor just got me the "he's a boy and they eat a lot" speech.....actually I got that a lot. But there was something in his eyes back then that just made me think it was something more. I should have listened to my gut more but he was an incredibly "high maintenance" child and we had gotten into a groove that seemed to be working at the time. Looking back now though.....there are so many things I would have changed with him. Ah, hindsight.

Oh...and both my boys (15 year old and 6 year old) go insane with sugar.....though not all sugar is equal in their reactions and they don't react the same way. The older one (and this is probably due to his age, now) just seems off in general. The little guy? Oh yeah. You pretty much don't want to be around him when he's gotten too much sugar....he is not a pleasant person. Emotional meltdowns, bouncing off the walls and then anger. It's good fun. Chocolate (not good chocolate but what they use in regular candy bars...and generally not chocolate milk...in small doses...) and ice cream are pretty bad culprits with the behavior issues. Those seem to have mellowed out a bit though as he's gotten older.

Oy! I still think a User Guide or Manual or something should be handed out when you have a baby....and not necessarily for the babies but for all the ages AFTER 3. That would handy! Good luck...hope you get it all figured out and sooner, rather than later!