9 year Old going through testing

[cjmm2002]

Hi everyone,
I am a new member here and just a very concerned mother looking for answers. My son who is 9 years old, has been dealing with abdominal pain, acid reflux, constipation for all his life. He is 4'6 and weighs 57 lbs placing him in the 28th percentile for his age group in weight. His height is in the average range.

Here are some of his symptoms:

-abdominal pain cramping

-decreased eating due to the cramping/ pain 

-acid reflux

-ADHD

-anxiety

-He does not vomit, but he complains of food coming into his mouth and then going back down,

As a baby he had silent reflux and was on a specialized formula, then we had a gluten free diet till he was over 2 years old. We started introducing gluten and he tolerated it fine. (Or we thought)

I have taken him to see a GI specialist who did some testing and has him scheduled for an endoscopy June 6th. The GI doctor thinks he could possibly have Eosinophilic Esophagitis. So he wants to wait till June 6th, so that my son has been on PPI for 6 weeks.  I personally do not think that Eosinophilic Esophagitis is the issue.

His labs did come back and they showed.

IGA level of 122

TTG IGA was 5.7

What would any of you suggest? Would you request that the endoscopy happen earlier?

Thank you,

Jennifer

[Gemini]

The GI doctor needs to do a complete Celiac panel.  I take it this was not done?  Then the endoscopy should be moved way up because all of his symptoms and growth issues scream of celiac so waiting until he takes meds for 6 weeks,  which he should never have to be put on at that age, is ridiculous.  How does the doc figure that his poor growth is related to EE?  He may also have that but the main focus should be on ruling Celiac in or out.  This just makes me so mad......putting a child on PPI's should be outlawed until the diseases that can cause that are looked into. 

Make him do the full panel and re-schedule the scope....good luck!

[cjmm2002]

Thank you Gemini,

I have emailed the doctor and he is not opposed to having my sons Endo done earlier. He did not run the full panel of Celiacs, but I will request this to happen. The doctor thinks that my sons issues are all related to Eosinophilic Esophagitis. I have called and requested to get the endoscopy done earlier.
 

Thank you,

Jennifer

[Gemini]

Anxiety and ADHD are related to EE?  That's news to me!    Your son may very well have EE also but those symptoms are symptoms that most Celiac's suffer from and I am also one of those small people who ended up having celiac.  I hope you get answers when the testing is done!

[cyclinglady]

This is interesting.   Like Gemini, I push for the entire celiac panel.  But, for the last few years, even the University of Chicago and the British and American GI Associations were sure that the TTG tests were best.  But since then, they have realized that the TTG does not catch all celiacs (but it was good for insurance companies.....save money.....).  They used to think it would catch up to 95% celiacs but turns out they were wrong.   I used to list all the celiac disease antibodies tests.  Now that the University of Chicago has updated their excellent website, I have noticed that they include all the tests.  That reduces my typing or cutting and pasting from my "notepad."  

Open Original Shared Link

If my old celiac-savvy GI did not order the entire panel on me, my diagnosis would have been missed. My TTG test is always negative even on follow-up testing and no one knows why!   The DGP tests are supposedly better for small children (usually babies and toddlers) but I think it catches many older kids and way older adults (like me!).  

Your son could easily have EE, so that should be investigated.  Please understand our frustration.  We see so many people coming on celiac.com because their doctors are not up to date on diagnosing celiac disease.  I completely agree that giving drugs to a kid to relieve symptoms is not acceptable.  That's just laziness!  Finding the cause is critical to long-term health. 

Keep advocating for your kiddo's health!!!!! Way to go Mom!  

 

 

[cjmm2002]

Thank you everyone! I'm an RN and have been doing research, I'm sure that frustrates the MD because I will not give up.   I forgot to mention he has had constipation issues in the past. The MD said that his abdominal pain was related to constipation, No Abdominal x-ray to confirm constipation.  He wanted us to do a full clean out. So we did a full clean out this weekend. We started the clean out at 10am and by 3pm his stool was clear and liquid. I have done a many clean outs for my patients and it always takes longer than that for anyone who is constipated.  I do not believe his abdominal pain is from constipation.

Thank you for the support and help.

 

 

[Gemini]

3 hours ago, cjmm2002 said:

Thank you everyone! I'm an RN and have been doing research, I'm sure that frustrates the MD because I will not give up.   I forgot to mention he has had constipation issues in the past. The MD said that his abdominal pain was related to constipation, No Abdominal x-ray to confirm constipation.  He wanted us to do a full clean out. So we did a full clean out this weekend. We started the clean out at 10am and by 3pm his stool was clear and liquid. I have done a many clean outs for my patients and it always takes longer than that for anyone who is constipated.  I do not believe his abdominal pain is from constipation.

Thank you for the support and help.

 

 

I like your tenacity and thought processes in figuring out what seems right and what doesn't!  I agree with you wholeheartedly.  You know, my mother has constipation problems and I do think she may have a gluten problem.  They keep blaming her GI problems all on constipation but I keep saying.......what the hell is making you so constipated?  They just don' t get what I am saying!

I think you will figure this out soon because you know what to do now and will not stop until you have answers.  Gotta work those doctors to get what you want!  

[cjmm2002]

Just got home from his endoscopy and they found what they think was thrush in his esophagus. Has anyone ever heard or seen this before?

 

thank you, jenn

[Gemini]

14 minutes ago, cjmm2002 said:

Just got home from his endoscopy and they found what they think was thrush in his esophagus. Has anyone ever heard or seen this before?

 

thank you, jenn

Yes, jenn....thrush can be common with Celiac.  I had thrush problems for years and it never truly resolved until I discovered the Celiac.  I would follow the anti-candida diet and take meds but it always came back, until I went gluten free.  All the good gut bacteria that keeps yeast and other organisms in check are not usually there when a person has Celiac or eats a poor, processed food diet.  So, the bad bacteria run amok and you end up with thrush.  It can also happen with repeated antibiotic use because antibiotics wipe out all the good bacteria, along with the bad.  You are an RN so get what I am saying.  Did they prescribe anti-fungals?  Poor kid.......it can be painful if it gets bad enough.

[cjmm2002]

Well the first results are back and the white spots are not yeast. Now waiting on the results from the rest of the results

.

[cyclinglady]

22 minutes ago, cjmm2002 said:

Well the first results are back and the white spots are not yeast. Now waiting on the results from the rest of the results

.

Maybe it is EE (Eosinophilic Esophagitis), but first make sure celiac disease is ruled out for now.  Here's more information about EE and Mast Cell Activation Disorder  (might be a cause for EE and something else to research).  I am not suggesting MACD, but many doctors are not familiar with it.   Search the forum for EE.  We have plenty of parents here and their children do have EE.  

Keep us posted.   

[cjmm2002]

Thank you! 

[cjmm2002]

Well all the biopsies came back negative, regular samples. We are going continue on the gluten free diet. But I am so frustrated and sad for my son. It is not normal for a 9 year old boy to be in pain. Yesterday while walking home from school he would stop and hunch over holding his upper abdomen area. He said he was getting sharp cramping pains.

Any suggestions or ideas.  

[cyclinglady]

The gluten free diet might be helpful (it can not hurt), but I would investigate the EE issue.  I know you want concrete answers, but be very happy he does not have celiac disease.  Here's more about EE.  

Open Original Shared Link

Open Original Shared Link

 Other foods may be triggering his abdominal pain.  You need to find the source.  A good way to find out is to keep a food and symptom diary.   Hopefully, your doctor has some suggestions.  

Keep on advocating for him!  

[Gemini]

jenn....did they ever do a complete Celiac panel?  If not, then they haven't done enough to rule Celiac out.  A negative biopsy does not rule it out, either.  I say this because all the symptoms your son has and has had, both gastro and neurological, scream of gluten intolerance on some level.  I would not rule out Celiac or NCGI just yet!

[cjmm2002]

Thank you Cycling lady and Gemini.

They have not done a full panel for celiacs. The GI doctor seems very reluctant to talk about Celiacs. According to the biopsies EE is ruled out. He is now thinking it could be gastroparesis.

 

[cyclinglady]

What?  I assumed that they also took biopsies for celiac disease too!  I urge you to find another GI or at least get your GP/PED to run the entire celiac panel or the missing portions (DGP iga, etc.)

Gastroparesis?  What's the cause of that?  Type 1 Diabetes, CELIAC DISEASE......ugh!  Get another doctor!  

[Gemini]

Yes, I agree with cyclinglady.  Think of it this way......Celiac Disease can cause ADHD, anxiety and the list of other issues your son has suffered from.  ADHD is not a diagnosis of anything.  They are symptoms and most doctors symptom treat by putting these kids on meds, which makes me crazy.  No 9 year old child should have all these adult problems so there is an underlying cause to it all.  So many people have come onto this forum and told their stories of horrible symptoms such as these and then after going gluten-free, over time, they all disappeared.  Even myself, who never had any anxiety issues ever in my whole life, will have 2-3 days of severe anxiety if I take a gluten hit.  I have not been glutened since Sept. of 2014 and that was the last time I had any anxiety issues.  There is most definitely a connection!

[cjmm2002]

Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant. 

 

 

[frieze]

On 4/29/2016 at 4:26 AM, cjmm2002 said:

Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant. 

 

 

another possible symptom of celiac disease.

[Gemini]

On 5/1/2016 at 8:11 AM, frieze said:

another possible symptom of celiac disease.

The clues keep mounting, don't they?  If more docs paid attention to all this, they wouldn't be complaining about how many people go undiagnosed!  Part of the problem is the medical attitude.

[frieze]

16 hours ago, Gemini said:

The clues keep mounting, don't they?  If more docs paid attention to all this, they wouldn't be complaining about how many people go undiagnosed!  Part of the problem is the medical attitude.

Yes, ATTITUDE, in all caps, and i am in the field of health care...!

[notme]

because they make more $$ treating symptoms   every time i see the new 'miracle' pills for 'ibs-c' and 'ibs-d' it just makes me crazy.  ibs is just a symptom..........  as are all these other things that can be reversed just by changing the diet.  but shhhh let's not talk about it, keep the patient ill and miserable, and keep that $$ rolling in.   and to leave a child ill and in pain is just deplorable.  i'm sorry for him.  go git 'em, mama!