My Journey To Heal My Son, Could It Be Celiac?

[tj's mom]

Hello, my name is Sarah, and I am trying to figure out what is wrong with my son. I have attatched my story to better assist your in efforts. I have been doing a lot of research on Celiac, and am concerned about what kind of testing to request. my specialist has ordered what she called a titer to detect Celiac. I need to know if this is reliable, and recomended. Thank you for your time and consideration.

Sincerely,

Sarah

Ok, i'm sorry to bore those of you who are tired of frantic individuals who are only on this sight to educate themselves as to whether this might perhaps be the missing piece to thier health puzzle. The truth is, after a month of having a sick 3 year old, and the doctors dismissing it as being mere gastroenteritis, and even night terrors, I have no other choice then to take to the internet and try to figure it out myself. I know this is quite lengthy, but I feel like the more information I provide, the better equipped you will be to help me.

To give you a clear picture I will start from the beginning. On the night of Nov. 7th my three and a half year old son had a rather restless night of sleep, by the next night he was wailing in pain through much of the night stating "My tummy Hurts". Strangely however, he was without complaint much of the day. Monday the 10th I took him to our family practice physician who, after an X-ray, diagnosed him with constipation and gas. We went home and upped the fiber, but to no avail. By Wednesday, we were still up all night with a screaming child, and had noted two regular bowel movements in two days. At the request of our physician we went to the ER. After four days at the hospital, and countless tests (2 X-rays, CT, blood work, and srool culture) his symptoms had nearly subsided. Noting that appendicitis, and obstruction were ruled out, it was the assumption of the physician that it was possibly viral, or possibly even night terrors (because the pain occured much of the time at night). I was heartbroken to take my son home with no answers, but with a prescription of antacid, that is where we were sent.

As my son was reluctant to take the antacid, and I to give it to him, not knowing the origin of his pain. We were incompliant with his medication. On the night of the 26th, ten days from when we were dismissed from the hospital, we wre up again, with a screamming kid who states, "My tummy hurts". The day was calmer, with less complaint of pain, possibly, with the activity, a busy three year will old tend to ignore all twinges of pain.

With the night soon approaching, and the sleepless night before burned into our mind, my husband and I decided to take our son to ER once again. This time at a larger hospital, with specialists available. (It was Thanksgiving and all clinics were closed until the following monday). Upon assesement, a mere urinalylisis, it was noted that my son's ketones were high at 3+. The ER's pediatric physician said this was undoubtedly, the cause of his reoccuring abdominal pain. After administation of some IV fluids, she said he would be feeling better. Once in a room though, the admitting physician thought there might be another reason for his abdominal pain.

Once again, they did a battery of tests, this time including an edoscopy and colonoscopy. My son was put on a lactose free diet, on admission. All tests came back NEGATIVE. I was a bit put off with the specialist, who is a pediatric gastrointerologist. On atleast three occasions this woman requested I cancel the scope, stating she didn't plan on finding anything. I was determined to figure out the cause of my sons pain, which again, had nearly deminished completely. As she had expected the specialist found nothing abnormal during the scope, including, no sign of overproduction of acid, or acid erosion. And the three colon biobsis also reported nill. Also no apparent allergy was noted throught the testing. We were sent home once again with a boy, whose symptoms had lessened, but not totally dissapeared. The specialist has lifted the lactose restriction, and wants us to continue the antacids for atleast four months, which we are diong religiously this time.

Which brings me to the present. We have been out of the hospital for a week and have been doing pretty well for the most part. Thankfully, no sleepless nights. However, my son does complain several times a day of abdominal pain. I will admit, some of these more recent complaints may be attention derived, however, i'm not convinced that all of them are. I have witnessed him sound asleep and clutching his abdomen, as I would if I had a stomach ache.

I am at my wits end to figure out what is causing my son to have these symptoms. And heartbroken that I can't help him to get total relief. Lastly, I am exhausted with anticipation of the next big wave of pain, and tears.

Perhaps the specialist was right, and I need to stop worrying, and acccept the fact that my child is just going through something right now, and that sometimes kids have aches and pains. If on the other hand, you feel your insight can help, then please speak up.

The syptoms are as follows:

- abdominal pain (unable to indicate location, intensity, or type of pain)

- regular bowel movements, soft, formed, etc

- pain intensifying at night

- pain in waves, always mildly present, however,severe pain spiking, ten days apart

- no signs of rash or other skin changes

- no weight loss

- marked loss of appetite on days with increased pain

- dehydration and elevated ketones at times of more intense pain

- no fever

[Mother of Jibril]

Welcome to the group!

Certainly, we can't diagnose your son. BUT... I think you're right to keep looking for answers. It's not normal for a child to be in pain.

Getting a celiac panel is a great idea... the antibodies you want to test for are anti-gliaden, ttG, and EMA. Also, get a total IgA. If it's too low you won't get an accurate blood test even if your son has celiac disease and is eating tons of gluten. I would do this ASAP. And then... it can't hurt to try a gluten-free diet! I would get rid of the casein too (all cow's milk products). Hopefully he'll start feeling better in just a week or two. Kids can heal really quickly.

Also... since your son has had high levels of ketones... have you checked for diabetes?

[tj's mom]

Thank you so much for your quick reply. I am really not expecting a diagnosis, but support rather. I feel the doctors are a bit dumbfounded, and want me to just accept with my sons pain. In fact, our family practice doctor won't even return my calls. I am the one that requested a Celiac test, after everything else was negative. Thank you for stating that children should not have unexplained pain. No one wants their child to be in pain, and I will not except it. Again, thank you for your insight. Regarding the diabetes, the doctors say there is no indication of such.

[Mother of Jibril]

I feel the doctors are a bit dumbfounded, and want me to just accept with my sons pain.

Unfortunately, I know what you mean

My son has a severe intolerance to casein. By the time he was six weeks old he was crying for hours at a time, hardly sleeping, projectile vomiting, and having green diarrhea with streaks of blood. The nurses tried to tell me it was just a "phase" his body was going through. The doctor suggested that he was "straining" during bowel movements. Really??? I figured out the casein intolerance on my own... within a few weeks he was completely back to normal. As long as he doesn't eat anything with casein, corn, or gluten he is such a happy, calm little guy.

A mom knows her child better than any doctor!

[tj's mom]

Wow, casein, corn and gluten! I feel for you. What are these doctors thinking? Your insight has been enchoraging and reasurring. Thank you.