Please, Help Me Find An Answer

[Lk's mommy]

I have a six year old son. As an infant, he didn't seem to tolerate traditional formula well because he was always constipated and gassy so we put him on soy formula. When he was a year old, we introduced him to whole milk. Immediately he began to have diarhhea. His Dr.'s advice was to start back with the formula and gradually introduce the milk by mixing the formula and milk (gradually increasing the amount of milk he was having until his body had adjusted to it). His poor bottom stayed scalded (and believe me, I did everything in my power to ease the pain and help it heal) for three whole months! Finally the diarhhea stopped, but to my surprise it developed straight into constipation. And I don't mean a little bit, he stayed that way nomatter what we did. He had GREAT nutrition, loved his veggies and fruits, didn't care about junk-food (at all). Finally, (after plenty of suppositories and crying for both of us) his Dr. referred him onto a specialist who performed a colonoscopy. There were no structural abnormalities, all he could find was some inflammation in a section of his bowels. Nothing more ever came of that until I insisted on taking him to Children's hospital in Arkansas. They ran some blood tests and things (I honestly can't remember, it's been so long ago) including one for celiac disease. They were all negative. They told me to give him time to grow out of it and come back if he doesn't. Well, I'm kinda scared of taking him back now (4 1/2 yrs later) because putting him through all those tests was horrifying for him (and me). However, he has had to take miralax every other day for the past 4 1/2 years to keep him from getting constipated (and don't think I haven't forgotten occasionaly and kicked myself repeatedly when he became constipated). I have had this lingering feeling for years now that celiac disease was a possibility. Now I'm in nursing school and have been learning about casein and how it's in milk, but also linked to celiac disease. Please, if you have any ideas, let me know! I have yet to find someone who can answer my questions...and I've tried for years!

[LL04]

Please don't be scared or stress too much over this. Just remember that you are THE advocate for your son and this means not taking 'no' for an answer. You need to go to your pediatrician and tell him your concerns regarding celiac's and ask him to have a gastroscopy done on your son. Do not take 'no' for an answer. If he refuses, take your son to see another doctor and another until you get what you want. A colonoscopy will not do but the gastroscopy will be definitive in giving you your answer regarding celiac's. Don't give up and don't be bullied by doctor's who are completely ingnorant when it comes to celiac's. As a mother you will do what you need to, to see that your son gets well and don't let anyone tell you that you are crazy or overreacting or just worrying for nothing and that he will 'grow out of it' because these are all things you are sure to hear and they are all most certainly untrue. Stick to your guns woman and good luck!

[Roda]

quote name='Lk's mommy' date='Mar 3 2009, 11:36 PM' post='515196']

I have a six year old son. As an infant, he didn't seem to tolerate traditional formula well because he was always constipated and gassy so we put him on soy formula. When he was a year old, we introduced him to whole milk. Immediately he began to have diarhhea. His Dr.'s advice was to start back with the formula and gradually introduce the milk by mixing the formula and milk (gradually increasing the amount of milk he was having until his body had adjusted to it). His poor bottom stayed scalded (and believe me, I did everything in my power to ease the pain and help it heal) for three whole months! Finally the diarhhea stopped, but to my surprise it developed straight into constipation. And I don't mean a little bit, he stayed that way nomatter what we did. He had GREAT nutrition, loved his veggies and fruits, didn't care about junk-food (at all). Finally, (after plenty of suppositories and crying for both of us) his Dr. referred him onto a specialist who performed a colonoscopy. There were no structural abnormalities, all he could find was some inflammation in a section of his bowels. Nothing more ever came of that until I insisted on taking him to Children's hospital in Arkansas. They ran some blood tests and things (I honestly can't remember, it's been so long ago) including one for celiac disease. They were all negative. They told me to give him time to grow out of it and come back if he doesn't. Well, I'm kinda scared of taking him back now (4 1/2 yrs later) because putting him through all those tests was horrifying for him (and me). However, he has had to take miralax every other day for the past 4 1/2 years to keep him from getting constipated (and don't think I haven't forgotten occasionaly and kicked myself repeatedly when he became constipated). I have had this lingering feeling for years now that celiac disease was a possibility. Now I'm in nursing school and have been learning about casein and how it's in milk, but also linked to celiac disease. Please, if you have any ideas, let me know! I have yet to find someone who can answer my questions...and I've tried for years!

[climbmtwhitney]

Hi Lk's Mommy,

I'm so sorry you son is struggling so much. It IS possible that gluten is causing your son's constipation and dependence on Miralax. So, here's my disclaimer.....I am NOT saying that it IS causing it, only that is possible.

My daughter, 10, sounds similar to your son. As a baby, she frequently had "blowouts". Messy, messy! She also had a lot of constipation. We gave her mineral oil then switched to Miralax when she was a toddler. She needed it EVERY day. And every time I tried to wean her from it, she paid dearly. Fast forward to age 10.....she was diagnosed Celiac last August. By the 4th week gluten free she was completely Miralax-free. And she hasn't needed it since. Not once! Incidentially, she is also casein free. But, we know it was the gluten because we didn't remove casein until she was already Miralax-free. So, that's how I know it's possible. My dd also had a boat load of other symptoms too.

You should definitely have your son re-tested for Celiac. He may also be gluten intolerant (which means his Celiac panel would be negative) but he would still be having gluten-related symptoms. It may not be gluten at all, but you owe it to your son to check it out. Remember, he's older now, so re-testing shouldn't be as overwhelmingly scary for him. Maybe promise him a treat afterward such as his pick of lunch out with mom or a small toy, etc. Also, remember, you can always try a gluten-free diet to see if his constipation clears up. Just DON'T do it before the tests because it can lead to false negatives.

If you do find he needs to go gluten-free (or just want to try it post-testing), we discovered pretty quickly that we needed to reduce the dose of Miralax--like within days. We gradually reduced it, until about 4 weeks later we dropped it all together. So, watch closely. If it is the cause, then you'll definitely have to play with the dosing so he's not running to the bathroom.

Good luck. I hope you figure it out soon.

Jillian

[Mother of Jibril]

If your son is eating foods with gluten I think it's a great idea to get a blood test for celiac disease! Get a copy of the results... even if the test comes back "negative" it's still a good idea to try the gluten-free diet if there's any evidence of antibodies to gluten.

My son also has a severe intolerance to casein (and corn). By the time he was six weeks old he had colic, projectile vomiting, and diarrhea with streaks of blood. Now the tiniest bit gives him eczema on his face. I have read that kids can "grow out" of casein intolerance. I've also read that you never really grow out of it... your body just adapts and the symptoms change (maybe headaches instead of eczema), but the damage is still being done.

My son recently turned a year old... I'm not planning to let him have casein until he can tell me how he feels and take some responsibility for his own health! Dairy products are NOT necessary for good nutrition. I wish my parents had recognized my food sensitivities when I was still young.

[Lk's mommy]

Thanks everyone, I have found alot of similarities on your replies. My son, too, has abnormally large tonsils (he chokes very easily-to the point I've performed the heimlich manuver, or however you spell that). Not to mention has always snored, has had strep atleast 3 times for sure, and nomatter how many hours he sleeps he always seems tired and whiney. Behavioral issues, geez...when he was three I thought I was going to pull my hair out (lol) because we were "locking horns" all the time. He has no drug allergies, but seasonal for sure. Fresh cut grass can swell the whites of his eyes up to the point of them looking warped! He's begining to outgrow that allergy now thank goodness. I guess I just feel insecure because they all wanted to ask me "is he getting enough fiber? Are you sure?". Well, let's see....When it first started he didn't like junk food or meat of any sort. Vegetables, fruits, and peanut butter were his main intake. So, I know fiber wasn't the problem. Then my in-laws said maybe he was getting too much fiber and causing it to bulk, but if that were true, the syptoms would've subsided once he started consuming fats and meats (etc). I am having his tonsils removed this summer while he's out of school, so I hate to put him through anymore than that. However, he too is in the 25th percentile for height (but then again his dad's only 5'6"). I don't know yet what to do when, but now atleast I feel like there is some jusification to testing.

[Roda]

I am 5' 7" and my husband is 6'. However there are enough "short" people on both sides of the family that he might just be on the shorter side. My Dad is 5" 11" and my brother is only 5" 10". Some short genes in mom's family and my husbands. He has two uncles that are brothers. One is over 6' 3" and the other is like maybe 5' 8-10". It is funny seeing them beside each other they look like an elephant and a @@@ ant.

My oldest had his tonsils out at 4 years old and did very well. The only problem we had was he did not like the taste of the pain meds so he would not eat/drink because his throat was sore. With in a few days he was acting like nothing happened. It was really hard to keep him from rough play for the recommended time. My youngest also had to have his adnoids out at 19 mo. He did remarkable. Within a few hrs you would not have guessed he had anything done either. We thought we were going to need his tonsills out also at 2 yrs old. He developed tonsillitis that was not improving on two rounds of antibotics. I asked for him to be cultured and it turned out he had MRSA in his tonsils. We went then went three rounds of clindimycin before he got rid of it. Luckily, believe it or not, he has not had a tonsill infection since then and he is now 4. They are large from all the infections he had, but not to the point that they interfere with him breathing or swallowing.