Symptoms But Negative Test? (Sorry, Quite Long!)

[hathawayrc]

Hello! I've recently taken my son, aged nearly 4, to the doctor as he has been suffering for at least a year with persistent tiredness, irritability, tummy bloating, poor appetite, very waxy ears and nail ridges. In the past month he has had at least 3 infections, and seems to take longer to get over bugs than his one year old brother. I took him to the docs because he has developed dark circles under his eyes and has had several tantrums apparently caused by exhaustion, even on days when we have done relatively little exercise. Having said that, sometimes he can have a really good day and my husband and I question whether we are being paranoid by getting him tested for illness!

 

The doctor diagnosed anaemia after I insisted on a blood test (he said anaemia was rare in non-vegetarian children like my son) and gave us iron liquid, which we have to sneak into my son's food and drinks. My mother in law is a diagnosed coeliac, so I asked about a test for that but the doctor was reluctant to do it unless my son had been on the iron liquid for two months, improved and then relapsed into anaemia. After my son had a particularly bad week I asked to be referred for a private test, which has come back negative (ttg less than 0.1, hb slightly improved from 115 to 118 after a month on supplements). The consultant we saw is checking the IgA level, which I understand can cause a false negative if it's low, but it looks like we are going to have to traumatise my son further by having another blood test to rule out wheat, dairy and egg allergies.

 

I suppose my question is, has anyone's child had similar symptoms and tested negative on the ttg, but improved on a gluten-free diet? It is just impossible to do anything with my son sometimes as he is so irritable, and I am concerned that when he starts school in September he will be labelled a 'problem child'. He has already been referred for special needs assessment by his preschool because he does not want to join in with many activities. I am tempted to try going gluten-free anyway to see if it makes him feel better, especially as my husband (also negative on coeliac test) has many coeliac-like symptoms.

 

Any experience, suggestions or advice very gratefully received! I'm feeling a bit at my wits end, as you can probably tell...

[notme]

if you want to have him tested or the doctor wants to do an endoscopy, you don't want to remove the gluten because it will skew the test.  if gluten is an issue and he improves, it will be difficult to put him back on if you need to have testing done, for whatever reason.  sometimes a diagnosis is helpful in managing school situations and some countries subsidize your 'special' gluten-free foods, so you would need a dx for that.

 

some people remove the gluten, and then regret not testing later on.  me, personally?  if i took my kid off gluten (i wish 2 of them would, but they are grown and they can feel as sick as they want i guess :/)  and they improved, i would say done and done.  but that is your call.  it does sound like you are at your wits end.  if he does have a gluten problem, his behavior will certainly be affected.  good luck & welcome to the forum

[nvsmom]

I'm a celiac. I had my kids tested for celiac disease after I was diagnosed. The only test available to us was the tTG IgA and all three of my boys tested negative on that but I suspected celiac disease in at least two of them so I made them (and my home) gluten-free, and I'm glad I did.  My oldest and my youngest had their suspicious symptoms improve dramatically after a few months gluten-free. Normal poops, fewer headaches and fatigue, and my oldest's concentration and emotional issues improved dramatically.

 

I have no medical "proof" that they are celiacs but I suspect they are, and I tell them they are. If they want to do a gluten challenge whenn they are adults, fine... well, not fine but I won't be able to stop them anymore.  LOL  But as minors, they are gluten-free, and feeling better.

 

I also have a young cousin who was diagnosed with celiac disease with only cognitive and behavioral issues. Never had stomach issues. It happens.  

Good luck!

[BlessedMommy]

I would suggest seeing if you could arrange a biopsy. Also, you said that he tested negative on the Ttg. Did he have the other tests as well? Sometimes one test will show celiac and the others won't.

[mommida]

In our experience, please try and get a doctor to work with you.  Don't change the diet and do the endoscopy with biopsy.

 

My daughter was sooo sick when baby cereal was introduced.  (blown off by doctors for months and had to request Celiac testing)  Trying to have her eat gluten for the testing, she ended up being hospitalized for dehydration right after the blood draw for the Celiac panel.  There was 1 positive on the panel.  She went gluten free to be able to leave the hospital.  (4 days of an IV)  The window for an endoscopy with biopsy was gone.  (she was too sick and then she wasn't eating gluten) We opted for the genetic test, she was positive for two Celiac genes (DQ2 and DQ8) Diagnosed Probable Celiac at 17 months old.

 

She was doing well on a gluten free diet until she was about 6 years old.  (she was hospitalized about once a year for dehydration.  A"childhood" illness would go around and she was just start vomiting and not be able to hold anything down.)

 

A very nasty virus went around the kids in the neighborhood.  When she got it, she started vomiting blood.  Off to the hospital for another 4 days and no answers.  We waited until she recovered enough to have an endoscopy with biopsy.  During this waiting period she was vomiting small amounts into her mouth 5 times a day.  It was like severe GERD symptoms, but also ALL consistent with Celiac.  She was diagnosed with Eosinophilic Esophagitis when she was 6. 

 

It is now known that Celiac and Eosinophilic Esophagitis have an association.  All new diagnosed cases of EE should be screened for Celiac.

 

It would be best for a full proper diagnoses right from the start.  With a family history of Celiac and your child showing symptoms of Celiac (anemia, dark circles under the eyes, and then some)  Your Dr. is WRONG for waiting to do testing.