Newly Diagnosed

[katerzz]

My baby boy is 21 months old and was just diagnosed with Celiac's Disease. It has been a long year and a half fighting doctors and trying to get answers and even though this was the answer we wanted to avoid, we are grateful we now know and won't be giving him poison in the future.

It all started when he was 4-6 months when my son started crying in pain any time he would pass gas. His older sister never had issue like this and the pediatrician just told us, "All kids are different". So months past by with the same problems of him waking up in the middle of night screaming in pain. He ended up in our bed with us because it was easier to comfort him and get him to sleep longer periods of time.

Our friends and family made fun of us as the months went on of him sleeping in bed with us and not sleeping through the night. He was a pain in the butt too, he would ALWAYS be crying. Even from an early age he would cry uncontrollably with no explanation. My husband had a hard time dealing with him so then it became a "well he's a mama's boy" and we marched on. Every well visit I would bring it up with the pediatrician and he would pretty much shrug it off like nothing was wrong. At about 9 months I started questioning his bowel movements and why they were all so runny and so often. He was having 8-10 poo'ey diapers a day. By this stage my daughter was one solid poop a day and was very regular. They ate the same too.

At 12 months his pediatrician said he was lactose intolerant and to put him on Lactaid. After a week of that with no change (it actually was worse) the doctor told us to put him on Soy milk and to get rid of diary completely that he had to be allergic to milk. So, we did that. A couple weeks later no change. The doctor told us he must have acid reflux and that we should put him on medication. I wasn't convinced and refused to do it. So we continued with the no diary and we got really involved with food lists and labels and making sure he had NOTHING diary. At his 15 month appointment the doctor recommended to put him on a probiotic, so we did that too. The probiotic seemed to be the key and helped a lot but I decided I wanted answers. The doctor told us that he could just have "toddler diaherra" and there was no cure other than he would grow out of it. I mentioned that my husband's aunt has celiacs and I demanded that he run blood and stool tests. It took awhile but finally we got the results and was told everything was fine. I wasn't happy with that and got a referral to an pediatric gastrologist the first thing he asked was if he had been to an allergist. When I told him no, he sent us to one right away.

The allergist did a complete medical history.. more questions about my son and our family lifestyle than ANYONE had asked and then we did a skin test. Everything came back negative so we were allowed to put him back on diary and see how things went. We continued to give him the probiotic and things seemed to be better.. not fine, but better.

After my son's 20 month well visit the pediatrician told us he shouldnt be on the probiotic that long and to take him off. So we did, and he started having problems all over again. The diapers never really cleared up but at least they were manageable. After taking out the probiotic it increased and got worse (almost pure water at times) So I decided to call the gastro doctor again and just see what he thinks we should do.

At that point I was the "paranoid mom" who was fighting against what everyone kept saying he would grow out of. I told the gastro doctor that I really don't want to put him through anymore tests but I just felt like something isn't right. The doctor agreed that no almost 2 year old should have that many stools (especially loose) in one days time. We also discussed his eczhema, extended tummy and gas issues. One other thing I mentioned was his foul breath.. his breath always smells like poop. The doctor agreed to do an Upper Endoscopy and check things out and do some biopsies since celiacs is in the family.

We went in for the procedure and I told them before it started that if it comes back negative that I won't push it anymore and let him grow out of it. It was a short 15 minutes before the doctor came out with a shocked look on his face. He told me and my husband that he had to be honest he wasn't expecting to find much and instead he found my son's tummy was white and full of bacteria. His small intestine was bumpy and not smooth, covered in ulcers (9 in one picture) and irritation. He told us that he would call with the results of the biopsy.

Four days later we got the call that the doctor suspects celiacs is for sure the cause and that he is going to send him for genetic testing before making a final confirmation but at this time he has very little doubt that is what is causing the problems. We're working on the genetic testing results now.

The moral to the story is that only you know your child. I think of the things that could have gone wrong if I didn't persue this more. Diabetes, cancer... my son was never "under weight" or failing to thrive so apparently the doctors thought I was nuts. What would have happened if those ulcers ruptured it could have been tragic. This whole time I think of how we were making him sick every time he ate. Thank god we found out what we can do to help him. Now our whole family will go in to get tested, including my daughter and baby I am due with in May. We will also be getting a new pediatrician because I cannot stand that he refused to listen to us and shrugged me off like an over-reacting mom when something WAS really wrong with my poor little guy.

The only thing I wish is that I would have pushed this more 6 months ago and faught harder to get tests and results so that we didn't have to make him suffer while I doubted if I was crazy or if the doctors just didn't have time to care. So if you have any doubt that something more is wrong... then follow through and push for results and answers. At least if you push it and nothing is wrong you can sleep better at night and your child doesn't have to suffer longer because a doctor doesn't want to hear your concerns.

[mznia504]

Thank you for sharing. It's sad that you had to fight so long when your son was actually showing the "classic" symptoms. We had to fight as well b/c my son WASN'T showing classic symptoms. He was diagnosed with reflux at the very tender age of 2 weeks old. And MSPI at 6 months old. The GI drs made me feel like a paranoid first time mom. I grew to hate the question "Is this your 1st child?" When we started solids, Jayden grew more and more ill. The only problem was that he was always a very happy baby, even when he was sick. So I'd bring him to the Dr and the Dr would say "He doesn't look sick, maybe mommy's sick!" Wow. Jayden was and still is always constipated. And actually constipated isn't exactly the problem. He has 1 BM a week and it's still soft and a bit runny when he does have it. Never hard as you would expect since he only goes once a week. This led me to believe that his bowels just don't move. Not too mention the horrible odor and seedy texture. When he was 2 yrs old, I demanded at least an endoscopy. The Dr didn't agree with my suspicion of Celiac disease b/c "Celiac Disease presents itself with diarrhea." which is BS. But they went ahead and did the endoscopy and found stomach irritation (lower stomach), and ulcers. The GI told us, "It's his reflux." and they increased his reflux meds. I never even filled the prescription. Instead we found a new GI dr. I went in, gave a full history, and the GI Dr said "Hey that all sounds like Celiac Disease." She requested the results from the endoscopy and the biopsy and called us to come back into the clinic. The biopsy showed flattening of the villi, classic symptom of celiac disease. The Dr told me she was pretty sure my baby had celiac disease but she sent him for blood tests as well. They came back positive for Celiac Disease.

So you definitely have to keep fighting until you are comfortable with the diagnosis. And just b/c you are already seeing "the best GI in town", it doesn't always mean that it's the best GI dr for your child. Not all GI docs are trained to recognize celiac disease, so if you have a sinking suspicion, fight for your child and switch Drs as often as you need to in order to get the health care your child deserves.

[bestofthebunch]

Thank you for sharing. It's sad that you had to fight so long when your son was actually showing the "classic" symptoms. We had to fight as well b/c my son WASN'T showing classic symptoms. He was diagnosed with reflux at the very tender age of 2 weeks old. And MSPI at 6 months old. The GI drs made me feel like a paranoid first time mom. I grew to hate the question "Is this your 1st child?" When we started solids, Jayden grew more and more ill. The only problem was that he was always a very happy baby, even when he was sick. So I'd bring him to the Dr and the Dr would say "He doesn't look sick, maybe mommy's sick!" Wow. Jayden was and still is always constipated. And actually constipated isn't exactly the problem. He has 1 BM a week and it's still soft and a bit runny when he does have it. Never hard as you would expect since he only goes once a week. This led me to believe that his bowels just don't move. Not too mention the horrible odor and seedy texture. When he was 2 yrs old, I demanded at least an endoscopy. The Dr didn't agree with my suspicion of Celiac disease b/c "Celiac Disease presents itself with diarrhea." which is BS. But they went ahead and did the endoscopy and found stomach irritation (lower stomach), and ulcers. The GI told us, "It's his reflux." and they increased his reflux meds. I never even filled the prescription. Instead we found a new GI dr. I went in, gave a full history, and the GI Dr said "Hey that all sounds like Celiac Disease." She requested the results from the endoscopy and the biopsy and called us to come back into the clinic. The biopsy showed flattening of the villi, classic symptom of celiac disease. The Dr told me she was pretty sure my baby had celiac disease but she sent him for blood tests as well. They came back positive for Celiac Disease.

So you definitely have to keep fighting until you are comfortable with the diagnosis. And just b/c you are already seeing "the best GI in town", it doesn't always mean that it's the best GI dr for your child. Not all GI docs are trained to recognize celiac disease, so if you have a sinking suspicion, fight for your child and switch Drs as often as you need to in order to get the health care your child deserves.