doctor says encopresis for DS but it doesn't sound right(new upd. post 17)

[meg-momto2]

DS has been having stomach issues since he started school in the fall. we also started eating wheat and dairy again after being off of them for many months(DD was intolerant). we've been off dairy since Christmas(with a few small slip ups) this is my second time mentioning it to the doctor. after an exam she said he's backed up and loose stool is passing by the blockage causing accidents, foul gas and stomach aches. i'm not buying her explanation. DS has rarely ever been constipated in his life. he's a 1-2 times a day kid. also, would a BM that's passing by a blockage be really, really loose? his BM's are still we'll formed but pale and completely fall apart when flushed. he'll have the occasional really loose BM.

she wants us to started using Miralax and bring her back a stool sample. she also kind of blew off my concerns with wheat/gluten intolerance twice. i plan on talking to her again before taking the sample back to get a clear anwser about what they'll be screening for. she couldn't even tell me if they'd check for yeast or gluten in the samples. i would like to know so i can order a test from Enterolab and screen him before we start a gluten free diet.

if you've dealt with encopresis did you/your child have regular BMs? we're they ever well formed or always really loose?

[ScootchsMom]

We're going through something kind of similar, except DD has never really had constipation issues. She's bee complaining of stomach upset for 2 months. We've had three trips to the ped and they FINALLY sent us for some bloodwork and an x-ray. The x-ray showed some constipation and they wanted me to give her miralax. I think Miralax is overkill for a mild constipation issue that is a symptom of what is going on. We opted to give plentiful amounts of apple juice and water, and guess what, she cleared right up 20 minutes later.

Anyway, we are waiting on the celiac panel results since I really think that is what is going on with her. It may just be an intolerance to gluten or wheat, or celiac, I don't know.

But I had her gluten free for 2 days this week and she didn't complain of her tummy hurting one bit and her behavior was outstanding. Than I gave her a sandwich from Subway yesterday just to see what happens, and right in front of my eyes, within 5 minutes of starting to eat her face flushed, her under eye circles darkened and her tummy ache came back. She was miserable last night, refused dinner and cried for 10 minutes before bed. She also had one of her "rages" that are usually over nothing.

Anyway, if the celiac lab comes back negative, we're going to do the Enterolab test as well. Even if it comes back positive, I might do the Enterolab test anyway, to see if she is allergic/intolerant to anything else as well.

As for your son, I'm pretty sure I read on one of the celiac sites this past week that pale stools are a celiac symptom. Its hard, there are so many symptoms that can be attributed to gluten intolerance/allergy or celiac disease. And if you go completely gluten free, the tests are not accurate.

I would try insisting on a full blood work up and an x-ray to see if stool really is backed up. Like I said, we had to go in three times to get them to do anything other than prescribe prevacid, saying it might be heartburn. What finally got their attention was her weight loss of 3 lbs since this started. I had to specifically ask for the celiac test, or I don't think they would have done it

Good luck!

[meg-momto2]

wow, i can identify so much with you and your daughter. DS has behavior problems as well. he's got a lot of signs of allergies and intolerance as do i. i'm going to call back on Monday when the other doc in is and talk to her. she's know our history better. i'm gearing up to go off gluten in the next week of two either way.

thank you for sharing with me. i hope you can get some answers for your daughter.

[ScootchsMom]

Thanks. The ped office just called in the last two minutes and said the celiac test was negative. They told me on Monday it would take 2 weeks for the test to come back, so now I'm skeptical on the results

I think I'm just going to order the enterolab test and start there. I asked the nurse what we should do next, and all they could recommend was staying on the Miralax (I didn't say anything about not giving it to her at all) and that it could take a week for the constipation to go away. This is why I can't stand this stuff. They are focusing on a SYMPTOM, not what is causing a perfectly healthy 4.5 year old to suddenly become constipated and lose weight

I than asked about other allergy testing, and they said to give it till Monday to see if she is still complaining about pain. If she is, than they'll order other tests like allergies.

I'm also going to call back now and ask for a copy of the results. I want to see her numbers myself and see which testing they did.

Liz

[meg-momto2]

ugg, i feel your frustration. this is why i don't like western medicine doctors. they never seem to want to find to cause. i had a allergy and celiac test done earlier this month. my celiac results came back with a reaction but still under the "normal" amount. i also came back with a ton on environmental allergies.

i don't now if DS has lost weight but he definitely doesn't gain much. he's about 39-40lbs at 6y2m old. his last full check up put him under the 25% for both height and weight. have they offered a stool sample test? they gave my three large vials to fill up for testing. like i said before she couldn't tell me what they were testing for but i guess ti's better then nothing.

[meg-momto2]

*sigh* so i went ahead and did the Miralax. i gave him half a cap almost every day. i forgot a few times. the other day he doubled over in pain for about 2 hours. i gave him some tums and he stopped complaining so loudly. today he barely ate and his teacher said he was complaining of stomach pain all day. that's the first time he's mentioned stomach pain at school. i called our ped. again and she said his stool sample we all normal and wants to send us off to a GI. she's writing up a blood work order for allergies and Celiac testing that'll i pick up first thing in the morning. i'm taking him off gluten tomorrow. i've been off it for three weeks and have felt 1000x better. my mom and sis both have gluten and dairy intolerance as well. hopefully well get some answers from the blood work or improvement with the diet.

[WuWei]

Here are a few ideas. Be sure that he is getting plenty of fluids before and during outdoor activities.

The binding foods to avoid are BRAT: bananas, rice, apples and toast. Prune juice increases motility, but just use a little!

You could increase animal fats, butter, coconut oil, magnesium, bone broths, vitamin C, probiotics (specifically Lactobacillus casei Shirota). Try aloe tea, Rhubarb root extracts, carrot juice 1:1 with spinach juice, plantains, dandelion tea, coconut, Blackstrap molasses, cabbage juice, almond oil with milk. All have stool softening properties, or increase motility.

Additionally, foods high in potassium help bowel function as it improves peristaltic movements of the colon: kale, cabbage, yellow tomatoes, spinach, carrots, broccoli, cucumbers, cauliflower, alfalfa sprouts, goat milk, sesame seeds, wheat germ brewers yeast, flax seed, green peppers, pineapple, beets, potatoes with skin, Blackstrap molasses.

http://altmedicine.about.com/od/cons...nstipation.htm

You might offer some rescue remedy in juice or water just before and during a bowel movement, if it is uncomfortable. Rubbing the abdomen clock-wise gently with lavender essential oil helps to increase motility also.

Epsom salt baths, or a itsy bitsy pinch of Epsom salts in water or juice (has magnesium) will often help constipation. Or a larger dose of vitamin C has a tendency to cause loose stools. Warm drinks also trigger a peristalsis movement of the bowels in some folks. So, just a warm tea might do the trick. Or warm soup.

Most of us are deficient in magnesium. Some Natural Calm for Kids helps with constipation and relaxation.

I trust that one of these possibilities will be agreeable. And if he is uncomfortable, you could try a glycerin suppository. (not my first choice) But, I'd just add some whole food probiotics on a regular basis and that will help his gut health, all around. :-) I just add a tablespoon of kefir to juice. That is a ton of beneficial probiotics.

HTH, Pat

[WuWei]

A friend just this moment sent this article!
Gluten and milk linked with constipation in kids


Pat

[ScootchsMom]

Originally Posted by meg-momto2

*sigh* so i went ahead and did the Miralax. i gave him half a cap almost every day. i forgot a few times. the other day he doubled over in pain for about 2 hours. i gave him some tums and he stopped complaining so loudly. today he barely ate and his teacher said he was complaining of stomach pain all day. that's the first time he's mentioned stomach pain at school. i called our ped. again and she said his stool sample we all normal and wants to send us off to a GI. she's writing up a blood work order for allergies and Celiac testing that'll i pick up first thing in the morning. i'm taking him off gluten tomorrow. i've been off it for three weeks and have felt 1000x better. my mom and sis both have gluten and dairy intolerance as well. hopefully well get some answers from the blood work or improvement with the diet.

Still in the same boat here too. We're scheduled for a GI doctor on April 8th. They asked that we not do any dietary changes again until she is seen and the may recommend a scope to visually see what is going on. I've already turned down an upper GI x-ray series because I don't want DD exposed to the barium or multitude of x-rays or the psychological damage I can see occurring because we would have to force her to drink the barium.

We ended up trying the Miralax as well, and her pains worsened and she got diarrhea from it. She is definitely not stopped up now and I don't think she was to begin with. We're still doing plenty of fluids, cut back on binding foods like rice and bread and she takes an Epsom salt bath every other night. I tried adding milk back in to her diet and she got worse again, so we took almost all dairy out again, except for the little bit as ingredients in things. If she drinks straight milk, she has a massive attack of diarrhea and her self control (temper tantrums, screaming, crying, emotional wreck) becomes non-existent.

Her bloodwork all came back normal, but the peds office refuses to do any allergy testing, saying it is too unreliable. Hopefully the GI has some ideas, otherwise its on to a total elimination diet to see if that helps. She's had some weird complaints lately - that her teeth itch (which boggles my mind) and that she has a pain right under her left nipple, in the bones there.

I hope you (and us!) find some answers soon. I'm so mentally exhausted from all of this and my own health is now suffering from the stress.

Liz

[ScootchsMom]

Originally Posted by WuWei

A friend just this moment sent this article!
Gluten and milk linked with constipation in kids


Pat

Thanks for that article - very interesting!

And by the definition of constipation used in the study, DD was definitely never constipated to begin with

[WuWei]

Originally Posted by ScootchsMom

We're scheduled for a GI doctor on April 8th. They asked that we not do any dietary changes again until she is seen and the may recommend a scope to visually see what is going on.

Personally, I'd much rather try dietary alternatives than to scope, which often requires sedation and all that. Docs don't believe folks will keep up a diet, so "why bother". And it is easier for them to just visualize the gut. But, not easier for children (or adults), imo.


Pat

[ScootchsMom]

Originally Posted by WuWei

Personally, I'd much rather try dietary alternatives than to scope, which often requires sedation and all that. Docs don't believe folks will keep up a diet, so "why bother". And it is easier for them to just visualize the gut. But, not easier for children (or adults), imo.


Pat

We've thought of that too. Believe me, we aren't jumping on the scope if its offered either. I'm worried she has some kind of damage though, either causing the problem or as a result of the problem. Dietary changes are definitely in our future either way. We've already had to make some changes because DS had an allergic reaction to eggs last week and I'm either allergic or sensitive to eggs now too. I have allergy testing for myself scheduled as well, but it isn't until July DP is reluctant to do a total elimination diet, he thinks it is too extreme and the ped only recommended cutting each food out for 2 weeks, not all at once. And the GI doesn't want anything done yet at all until she is seen. Its all very frustrating.

[meg-momto2]

thanks Pat. i'm always in awe of your knowledge.

Originally Posted by ScootchsMom

Thanks for that article - very interesting!

And by the definition of constipation used in the study, DD was definitely never constipated to begin with

yep. same here.

our ped. worked with a GI office for a while and i think that's why she's being so helpful. all his issues are terribly familiar as i went through something similar as a kid. no one could figure out what was causing my stomach aches and i was put on Zantac in second grade. now i've found out my mom and sister have gluten intolerances. i've been off gluten for 3 weeks and have had a massive improvement with my sinuses and headaches and the brain fog has been lifting. i wouldn't be the least bit surprised if gluten is the source of his pain.

[ScootchsMom]

Originally Posted by meg-momto2

now i've found out my mom and sister have gluten intolerances. i've been off gluten for 3 weeks and have had a massive improvement with my sinuses and headaches and the brain fog has been lifting. i wouldn't be the least bit surprised if gluten is the source of his pain.

From the reading I did on gluten problems and celiac, it is definitely genetically related, so I wouldn't be surprised if that was his problem either. I really hope you get it figured out, it sucks to see our kids sick and in pain.

[WuWei]

Originally Posted by ScootchsMom

DP is reluctant to do a total elimination diet, he thinks it is too extreme and the ped only recommended cutting each food out for 2 weeks, not all at once. And the GI doesn't want anything done yet at all until she is seen. Its all very frustrating.

I don't your child's age. But, the allergy forum is a huge resource. Personally, I don't believe partial elimination is likely to identify culprit foods easily. But, I also don't believe in a TED for longer than 2-4 weeks due to nutrient deficiencies and the cascade of detox issues which develop.

The IgG testing might help with creating a rotation diet more quickly. The ladies there are more familiar with the least invasive testing alternatives to provide the most useful information. A food journal is the gold standard for finding culprit foods, regardless. Meds only suppress symptoms, not address intolerances or causes of inflammation.

Here is Gut healing Where to start? Help 101 Check the "Cliff Notes" at the bottom for foods to add to increase gut healing.


Pat

[WuWei]

Originally Posted by meg-momto2

i've been off gluten for 3 weeks and have had a massive improvement with my sinuses and headaches and the brain fog has been lifting. i wouldn't be the least bit surprised if gluten is the source of his pain.

This was exactly my experience. Although, I quit gluten and dairy when ds was nursing (due to intolerances he was having) and was stunned at the health benefits, no more daily sinus headaches, no more throat congestion, no more stinky gas, no more bloating and cramping, etc.!!

Pat

[meg-momto2]

we had his GI specialist appt. yesterday. the doctor was wonderful and i loved him. he was ready to diagnose Celiac Disease just based on his symptoms and how he looked(very pale, petite and dark circles under eyes) but we have to wait on the blood work. it was so wonderful to have him validate my mommy instinct and listen to me. we had blood drawn last Friday. they did allergy testing, Celiac panel and CBC. i should know more by the end of the week. i think i will go ahead with the endoscopy to confirm if it's offered. i need to know if this is really CD or just a bad intolerance.

[deditus]

Originally Posted by meg-momto2

we had his GI specialist appt. yesterday. the doctor was wonderful and i loved him. he was ready to diagnose Celiac Disease just based on his symptoms and how he looked(very pale, petite and dark circles under eyes) but we have to wait on the blood work. it was so wonderful to have him validate my mommy instinct and listen to me. we had blood drawn last Friday. they did allergy testing, Celiac panel and CBC. i should know more by the end of the week. i think i will go ahead with the endoscopy to confirm if it's offered. i need to know if this is really CD or just a bad intolerance.

Glad the GI is supportive - dd's was supportive of a gfcf diet despite the fact that her celiac panel was negative.

[ScootchsMom]

Originally Posted by meg-momto2

we had his GI specialist appt. yesterday. the doctor was wonderful and i loved him. he was ready to diagnose Celiac Disease just based on his symptoms and how he looked(very pale, petite and dark circles under eyes) but we have to wait on the blood work. it was so wonderful to have him validate my mommy instinct and listen to me. we had blood drawn last Friday. they did allergy testing, Celiac panel and CBC. i should know more by the end of the week. i think i will go ahead with the endoscopy to confirm if it's offered. i need to know if this is really CD or just a bad intolerance.

While I'm not *happy* for you, I'm so happy you found a supportive GI and a likely diagnosis! Keep us updated please

Liz