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5 Year Old With Inconclusive Tests

LittleMama

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LittleMama Newbie
LittleMama
Posted

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

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greenbeanie Enthusiast
greenbeanie
Posted

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 Contributor
NoGlutenCooties
Posted

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 Rookie
tri-gal
Posted

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 Newbie
LittleMama
Posted
  • Author

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 Rookie
tri-gal
Posted

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 Rookie
tri-gal
Posted

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. :D

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LittleMama Newbie
LittleMama
Posted
  • Author

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. :D

 

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 Enthusiast
StephanieL
Posted

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.

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    • Theresa2407
      Is this celiac?

      By Theresa2407 · Posted

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I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable.                                                                                                                                              You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. 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I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. 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    • Wheatwacked
      Is this celiac?

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    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      Is this celiac?

      By trents · Posted

      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
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