5 Year Old With Inconclusive Tests

[LittleMama]

Hi I'm new here. My little boy has been through the ringer. Diagnosed MSPI as a baby, then Food Protein Induced Enterocolitis Syndrome a little bit later. Supposedly outgrew all his intolerances(oats, rice, soy and milk) by 4 but still has a lot of issues. Was diagnosed failure to thrive at 2, tested for Celiac and had low IgA so test was void. Retested at 4 and was completely IgA deficient(>6), diagnosed Selective IgA deficienty. Doc ran the IgG panel which Quest LOST(yeah, I know) and also ran the HLA panel which he was positive for(one of them, I think the more probable one, sorry for my ignorance.) So doc wants to do a biopsy based on his symptoms and positive HLA. Here are his symptoms, which may or may not be related.

 

-Previously(not currently) Failure To Thrive, but VERY small

-Random tummy pain

-Completely reliant on Miralax to have bowel movements, and even with it he still has trouble and gets backed up for days

-Intermittent diarrhea

-Intermittent EXTREME moodiness that just disappears as quickly as it came

-Intermittent inability to pay attention and hyperactivity(again, not consistent at ALL)

-Unexplained cerebral palsy(neurological muscle spacticity and weakness, no damage shown on MRI's but definite disability)

-Selective eater

-Previous multiple food intolerances

-Selective IgA deficiency

-Asthma, eczema, allergies

 

My older child has a lot of symptoms as well and we will test him after we get the little one's results. I have been gluten free for a year after doing a low Fodmaps diet for extreme IBS and have never turned back. So I have no idea if I have celiac or not. I am VERY sensitive and get glutened very easily. My husband has no symptoms. In my family we have a lot of colitis, short stature and failure to thrive, IBS and food intolerance.

 

I think I just had to get it all out, but it sounds probable, right? And if he is negative, doc wants to try gluten-free with him anyway, do you think that's a good plan? We go to CHOP and are in good hands....

 

Thanks!

 

Ali

[greenbeanie]

It does sound like more celiac tests are worth pursuing, and giving the gluten-free diet a good long try after the biopsy also seems like a good plan. I only have a minute and can't write much now, but my daughter had all sorts of neurological problems since early infancy. The neurologist thought she had CP for a while - her reflexes were very delayed, she hardly slept and twitched constantly in her sleep when she did (but had no evidence of seizures), her muscles were tight and she kept her fists clenched long past the time when other babies opened them, etc. She also had frequent projectile vomiting, constant irritability, and GI problems, though the neurological stuff was the most worrisome. The GI and allergist eventually had me stop breastfeeding and put her on Neocate formula, since we had no idea what was wrong but it definitely seemed food-reflated. She improved almost instantly. Then things went downhill again when she started solids. Things worsened and the neurologist concluded that her symptoms weren't really consistent with CP, but later she was diagnosed with Sensory Processing Disorder and had extreme sound sensitivity and other issues. The good news is that once we figured out she has celiac when she was 4, EVERYTHING got majorly better very quickly. It's been almost a year, and she now only has minimal sensory issues, no unusual muscle tightness, still a somewhat distended belly but tTG levels had fallen from 16x normal to just over 2x normal at her last check-up, etc. Although they never tested her for celiac as an infant, I feel very sure that these problems had been from gluten all along.

Anyhow, I really hope you son feels better soon, and that you get to the bottom of whatever's going on. It sounds like you have sensible and attentive doctors, which is great.

[NoGlutenCooties]

Hi LittleMama and Welcome!

 

If you get symptoms from getting accidentally glutened, then you can rest assured that you have either Celiac or non-Celiac Gluten Intolerance.  Your son's symptoms sure do sound like probable Celiac.  I agree with GreenBeanie that additional tests to rule out other ailments would be a good idea - but with the family medical history I'd be very surprised if gluten was not in the equation.  After that, I would try a strict gluten-free diet as your doctor suggests... which is the only way to detect NCGI anyhow.  If your son improves and also has a reaction to reintroducing gluten into his diet after being gluten free for a few months or so then you'll know.

 

Good luck!

[tri-gal]

Hi Littlemama,

A quick note for now and I will try to post more later.

You mentioned FPIES and celiac, so that caught my attention.

IMO, I think you should go for the diagnosis while you can. I would also re-do the IgG test since the lab lost the blood or the report (how does this happen, yet similar things happened to us!?) And, yes, then try gluten free but wait for the endo.

 

Very similar situation for me and my family:

I am unDX but sure I have celiac with severe onset post delivery.

Have son who is 17 mo with multiple FPIES, which started appearing at 5 months, but also had issues while nursing. he is also gluten IgG or enteropathy as well as multiple other food IgG intolerances/allergies.

I am gluten free, so can't be tested, but my gut was not working when he was nursing (still is nursing) and while he was introduced to solids..

 

our daughter, now close to 6, is showing signs and is on gluten till we blood test her. She had FPIES to oats, which she outgrew by about 3 years.

ok, i must go for my baby, but see post "how my baby saved me" if you want to compare FPIES and celiac experiences. I want to explore the link.

take care good luck and let us know what happens!

[LittleMama]

Hi Littlemama,

A quick note for now and I will try to post more later.

You mentioned FPIES and celiac, so that caught my attention.

IMO, I think you should go for the diagnosis while you can. I would also re-do the IgG test since the lab lost the blood or the report (how does this happen, yet similar things happened to us!?) And, yes, then try gluten free but wait for the endo.

 

Very similar situation for me and my family:

I am unDX but sure I have celiac with severe onset post delivery.

Have son who is 17 mo with multiple FPIES, which started appearing at 5 months, but also had issues while nursing. he is also gluten IgG or enteropathy as well as multiple other food IgG intolerances/allergies.

I am gluten free, so can't be tested, but my gut was not working when he was nursing (still is nursing) and while he was introduced to solids..

 

our daughter, now close to 6, is showing signs and is on gluten till we blood test her. She had FPIES to oats, which she outgrew by about 3 years.

ok, i must go for my baby, but see post "how my baby saved me" if you want to compare FPIES and celiac experiences. I want to explore the link.

take care good luck and let us know what happens!

I definitely wonder if the FPIES was really Celiac in disguise. Very interesting. I will check out your post!

[tri-gal]

okay, could be if he didn't have clear FPIES to non-gluten items. Our case is quite clear. The FPIES was and is definitely classic FPIES. To rice, chicken and potatoes so far.

But our son also has enteropathy  to gluten, but his intestines are much better now that he is gluten free. For this reason, I wonder if he actually has celiac disease.

But the FPIES remains a separate  issue so we have to be careful on food trials.  given my strong likelihood of celiac disease, I wondered if there is a connection, not so much meaning to say that he didn't have FPIES but whether there is a link between  celiac disease families and FPIES families.

[tri-gal]

sorry to do this in a second reply, I don't know how to "multi-quote" yet.... but

., to follow up on the question of a potential link between FPIES families and celiac disease families.... is it possible to tell me whether your son had classic FPIES (you mentioned rice, oats, soy, milk)? As in: severe vomiting and lethargy approx 2 hrs following ingestion of FPIES trigger, followed by explosive bowels/diarrhea and intestinal pain for several days. Open Original Shared Link

Or was it that the medical community said: "maybe he has FPIES" but they weren't sure, but he did not present with classic FPIES vomiting reactions on food trials.?

hope this makes sense. A few distractions going on in our household.

[LittleMama]

sorry to do this in a second reply, I don't know how to "multi-quote" yet.... but

., to follow up on the question of a potential link between FPIES families and celiac disease families.... is it possible to tell me whether your son had classic FPIES (you mentioned rice, oats, soy, milk)? As in: severe vomiting and lethargy approx 2 hrs following ingestion of FPIES trigger, followed by explosive bowels/diarrhea and intestinal pain for several days. Open Original Shared Link

Or was it that the medical community said: "maybe he has FPIES" but they weren't sure, but he did not present with classic FPIES vomiting reactions on food trials.?

hope this makes sense. A few distractions going on in our household.

 

They definitely diagnosed him with FPIES but he didn't have classic symptoms. He had chronic symptoms from certain foods, like constipation, but milk and oats did make him vomit, just not to shock.

[StephanieL]

My DS has FPIES as well. I've never heard of constipation being an FPIES thing. It's typically the opposite with profuse vomiting and diarrhea with a crash at the end.  I also wonder if it wasn't something else going on.  Also, you don't have to end in shock to have FPIES.