Author Topic: MSPI/Celiac? Symptoms - help please  (Read 5191 times)

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Offline writelydivided

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MSPI/Celiac? Symptoms - help please
« on: July 05, 2009, 20:24:12 pm »
For one week now, I've eliminated milk, soy, wheat/gluten (at least all that I can recognize) from my son's diet. Samuel is about 14 months, and has struggled so much with his bowels. I think it started around 6 months with solids, but has gotten progressively worse.

It's like constipation, but not at the same time. He'll strain (cry, sweat, shake, grunt, sometimes even scream) up to 20 times a day sometimes  :'( . Some days he'll have 5-6 bowel movements: I'd consider them "normal" (whatever that is!) in size, not like the "rabbit pellets" the doctor asked to determine if he was constipated. But some days he'll have massive, large, long poos (sorry) that honestly, I don't think most adults have. If he has one of those, he'll be happy as a clam the next day with no poos. But then the whole process starts over again.

At first I thought wheat. . . . Tried to eliminate or at least severely cut back on breads, etc. Seemed to help a  little, but then started again because we didn't see much difference.

Then we thought maybe it was the milk, after switching from BM/formula to whole milk. Tried to go back on the formula, but again, maybe a slight improvement, not much.

Then, instinct told me to take him off all of it, and once he's better, slowly reintroduce to determine what the problem is.

It's been a week now. A few days in, we thought it was maybe getting better, but then we've had 3 -4 days in a row again back to the same, sad results. I know it can take more than a week to see a difference, but just wondering if anyone's seen/done anything similar.

I figure if he's not better at the end of the week, we'll go back to the pediatrician (who basically was no help and shrugged it off at the 1 yr appt), and go for a second opinion if no help then.

Any insights or ideas? I'm also struggling to figure out how to get enough fat in--especially because he's pretty little (maybe 21 pounds now? Was at about 20 at the year appt; had lost a lot of weight between 6-9 months--worried there might be a nutrient absorption issue, because he'll eat like a horse at times). Will add coconut to the rice milk this week, have been doing avocados, trying to add olive oil in to more and more. So hard to know what to give him.

Thanks in advance.

--Rachel
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Rachel

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Offline Spectra

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Re: MSPI/Celiac? Symptoms - help please
« Reply #1 on: July 07, 2009, 11:18:59 am »
Hi there, It doesn't sound like Celiac's as with that the symptoms are chronic diarrhea, loss of appetite, weight loss, failure to thrive, irritability, and swollen abdomen.  As well with MSPI the stools are sometimes soft with mucus, irritability, gas, stomach upset, skin rashes.  They don't need to have all these symptoms, as my son didn't, but usually one or two.  


Have you tried giving him more fruits?  I wonder if it's more a constipation issue.  Your descriptions reminds me of my daughter, she has constipation issues and is using Lactalose right now to help with her stools.  I notice she loves her breads and pasta, but even when these grains are high in fibre it makes no difference.  The only time I see a difference is when she eats fruits, even if it is just 10 grapes a day it makes a world of difference.  When I brought this up with my Dr he said that her diet needs to focus more on fruits, for snacks which meant no more cookies, sweets, etc.  It's still a struggle as my daughter is a picky eater, so tiny, and some days will just not eat the fruit.  I'd also make sure he's getting LOTS of water.  I know with my daughter she loved her wheat cereal in the morning, so I'd always put in 3 TBSP's of Prune mush with it and it helped BIG TIME.  If all this fails I would get that second opinion, wouldn't hurt.

Can you list what foods he eats daily, so we can get an idea??

« Last Edit: July 07, 2009, 11:32:10 am by Spectra »
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Offline LisbonMom

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Re: MSPI/Celiac? Symptoms - help please
« Reply #2 on: July 07, 2009, 12:08:14 pm »
My dd2 struggles with poos as well. My SIL is finiching a degree on Chinese traditional medicine and we actually talked about it very recently, as I had been giving dd a CTM medicine that wasn't doing anything. Her answer was that in her case it's not a "water" issue (she actually drinks and pees a lot) which is why the medicine wasn't working. That means it's a motility issue, which means lots and lots of fibers and exercise.

I know how it is to see them struggle ... Hang in there!
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Re: MSPI/Celiac? Symptoms - help please
« Reply #3 on: July 07, 2009, 12:24:43 pm »
We struggle here with lots of the same, and I am wondering if DS's refusal to eat ANYTHING lately is less of an age/phase and more of a way of him telling me he's not feeling well.

I think that one week is way too short of a time to notice a difference -- give it more like a month if it is a food allergy or intolerance. Not only does the food that is upsetting him need to clear out of his system, which can take a couple of weeks, but his bowel would need to heal and start working properly again before you would notice. My mother had celiac disease and I remember that one tiny bit of food accidentally eaten could affect her for weeks.   

We did a "soy challenge" a couple of weeks ago with DS - started with introducing bread as it has soy flour in it.  I did bread for three days and he was having explosive BMs.  He's been back off of the soy for about 7 days now and it's still not cleared up.

So, I would keep going with it. My own experience with doctors is that you sometimes do not get the support and information you need with food problems, and so read up as much as you can from reputable places (ie/ celiac or MSPI associations) and keep food diaries, list symptoms and troubles and such, and keep at it diligently for a while.  When you feel you have a good armload of evidence, then take it all in to a doctor and ask for referrals if they are not helping you out much.

HTH
Mashi

Offline writelydivided

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Re: MSPI/Celiac? Symptoms - help please
« Reply #4 on: July 08, 2009, 04:25:02 am »
Thanks, all. I really appreciate the input.

I don't think it's a lack of fruits or vegetables: that's about all I'm giving him now (and he had fruits and or vegetables with every meal previous to the restricted diet I've started him on as well). I don't think it's a lack of liquids, either; he drinks anywhere from 20-24 oz of milk (rice milk now) and from 2-6 ounces water or juice each day as well. Can't get him to drink more than that.

I didn't mention he did have diaper rash with open skin (ouch, poor little guy). I'm wondering if the same open skin is present internally, and that's what's making him so pained and reluctant to push those poos out. The rash is starting to heal just today. I'm still thinking Celiac is a possibility because of very light colored, very stinky poos (stink is starting to go down); I read  that diarrhea or constipation can be a result of Celiac. He also had weight loss from 6-9 months, and has very slowly gained back. (Went from 50% at birth to below the charts at 9 months, to 5% at 12 months).

The motility issue seems relevant; my MIL (a pediatric nurse practitioner, unfortunately, out of state!), suggested an X-Ray might show if he's just backed up. . . .

Diet recently has consisted of:
eggs
avocados
brown rice
rice pasta
beans (of all sorts. . . )
pears
peaches
blueberries
grapes
prunes
bananas (very little; less than a half a very ripe banana a week)
green beans
rice flour bread
gluten/dairy free waffles
gluten/dairy free cookies
sweet potatoes
potatoes
olive oil
mandarin oranges
applesauce (limited)
peas
lentils
carrots
corn (took 4 days to go through his system: seems long; same with he lentils)
don't know what else to give him at this point!

Obviously not all in a day. :-)

Before I started the above, we'd added ground flaxseed to oatmeal or yogurt to try to help. Saw no real difference. (Well, except the addition of flax flakes to his poos!)
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Offline Mashi

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Re: MSPI/Celiac? Symptoms - help please
« Reply #5 on: July 08, 2009, 07:06:17 am »
I read  that diarrhea or constipation can be a result of Celiac.

This is correct.  However, I suspect if it is constipation your LO is suffering from, you will have a much harder time with getting a family doctor / gp to agree.  Less than 2% of people with celiac suffer from constipation; celiac is malabsorption of the small intestine and by definition, that is diarrhea.  As soon as constipation is involved they automatically start disagreeing that it is celiac.  My mother went through nearly 30 years of trying to get a diagnosis and despite bowel biopsies that confirmed celiac, because she was one who had constipation, she had doctors who would say the biospies were wrong.

One question though, and I may be misunderstanding, does your LO have BOTH diarrhea and constipation, sometimes one, sometimes the other? Because I do think that would be not really right for celiac - I would think it would be chronically one or the other.  BUT just because I've not heard of both doesn't mean I am right!  It could be that he is extremely constipated and then after a while of that, he sort of .... "explodes" and gets it all out over the course of a few days. Sorry, gross, I know.....

Offline Spectra

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Re: MSPI/Celiac? Symptoms - help please
« Reply #6 on: July 08, 2009, 16:12:56 pm »
Thanks Mashimaro for the clarification on the poos, didn't know that less than 2 percent people suffer with constipation.

Rachel thanks for the food list.  It does look like he's getting lots of good foods, I wish my daughter would have that variety!  Perhaps it would be good to go back on the gluten free diet for a few weeks this time, perhaps more time is needed to tell if it will work or not.
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Re: MSPI/Celiac? Symptoms - help please
« Reply #7 on: July 08, 2009, 16:45:58 pm »
My LO used to have a lot of issues with constipation.  He also can't eat wheat.  I have to be careful because a lot of the rice breads and pasta have minimal fiber and are binding for him.  I found a bread mix in my grocery store that is free of wheat, soy, dairy, eggs, etc and it doesn't seem to adversely effect him.  I also give him quinoa for breakfast, instead of oatmeal (there is some controversy over oatmeal and wheat/ gluten, so I just avoid it) and it is really high in fiber and protein.  When I add prunes to that, I can definitely get a BM out of my LO.  Also, pears seem to have the same effect.  Apples, carrots, and bananas are binding for him.

Regarding adding extra fat, you could alway give your LO fish oil.  Cod is the least allergenic fish and you could get that kind of oil.  Flax is also an option, but it looks like you are adding that already.
Kara


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Re: MSPI/Celiac? Symptoms - help please
« Reply #8 on: July 08, 2009, 19:19:25 pm »
(there is some controversy over oatmeal and wheat/ gluten, so I just avoid it)

Yes, until recently oats were considered just as much a food to avoid by celiacs - the four grains that contain gluten are wheat, rye, barley and oats.

However, in the past few years it has been discovered that the gluten in oats are almost completely from contamination by other grains grown in the same fields or processed in the same factories. Oats grown completely in their own fields and processed in their own factories contain very little gluten.  The UK (or Cdn? can't remember which) provides limits on how many completely "clean" oats a celiac should eat per week, and the limit really is quite low. However, some celiacs are more sensitive than others and can't even handle trace amounts of oats.  I would say to avoid them completely, but it is a good gluten-containing grain to start with when you decide to start out introducing gluten.  I would then go to barley, as it is quite low on the allergen scale, and then to rye, and wheat last as wheat itself can be allergenic (as in, the wheat itself is the problem, not the gluten in the wheat).

My LO's diet is quite similar to yours, as he is MSPI, and I kept him gluten free until 10 months. He always has had a very fragile digestive system and I've been worried about celiac but am trying my hardest to  "find" the problem is elsewhere in hopes that it is not celiac at all.  He is the same in that he will go a few days constipated and then have about a week of horrible explosive massive BMs.  I can think of many occassions when my DH has changed a nappy and said to me "Honestly, I'm telling you, it was a LOG. I'd have been proud of myself for that one...."   ::) Men. Sigh.

So a a couple of other things I've thought of looking at your LO's diet, only because they are observations that I have noticed in my own LO.

eggs -- we still only do yolks here and seem to be ok
avocados -- am pretty sure they give DS softer poops, I do try to give him a lot to get fats up
brown rice -- when he would eat it, very constipating
rice pasta -- ditto, the few times i tried, 2 pieces of rice pasta resulted in 2 days of no poop and then 3 days of hard lumps
beans (of all sorts. . . ) -- only done green beans and we are fine on them
pears -- DS eats one a day, days or weeks he misses pears don't seem to affect poop
peaches -- ditto
blueberries -- a small handful (8 - 10) has the same result as rice pasta, we avoid them like the plague unless he has diarrhea
grapes -- fine
prunes -- only used when consipated and they soften stool but do not have the "instant" effect that most moms say they will
bananas (very little; less than a half a very ripe banana a week) -- i use bananas as needed to manage poop! very ripe when he is constipated  and less ripe when he's got diarrhea
green beans - see above on beas
rice flour bread - never tried it, but do rice flour pancakes and they are fine
gluten/dairy free waffles - never tried
gluten/dairy free cookies - never tried
sweet potatoes - used to eat them as his main carb (and squash) and aside from orange poop, no problems
potatoes -  he won't touch them!!
olive oil - i add to food or fry with when i can, and he's fine with it
mandarin oranges -- these are fine for DS if I get them tinned, he can eat about 1/4 of a can every second day and be okay. any more than that and we get diarrhea.  i have switched to fresh clemintines/satsumas now that they are available and he has had the most disgusting horrible awful diarrhea in the world, and i am wondering if they are extremely laxative
applesauce (limited) - i used to do this a couple of times a week and he was fine as long as there were no other binding foods like bananas in the same day
peas - fine, but they come out whole  :P
lentils - never tried, i've never eaten them myself so not a clue what to do with them!
carrots - we don't really have probs with carrots, DS doesn't like them sooooo...
corn (took 4 days to go through his system: seems long; same with he lentils) - i find the same with corn, it takes 3 or 4 days to get through his system and when it does, poop is soft, icky and the corn is whole. and there is a LOT of it.  yuck

Not sure if that helps at all or if it's pointless. I'm just thinking that our LOs seem to have similar digestive issues and VERY similar diets.  My paed suggested that DS's back'n'forth bowel movements are because I limit his diet and that as soon as I get him onto table food without questioning what he's eating, that his poop will sort itself out.  Paed really pushing me to get him onto soy now though, but wants me to wait until he's 2 for milk/dairy.  The day I started allowing products that contained soy was also the same day that I started buying clementines fresh instead of tinned. Within 24 hours his poop went to unbearable disgusting diarrhea.  I cut soy out about 4 days ago and have not noticed improvements, so today eliminated oranges as well.  Will see how we get on.  It will be easier for me to live without oranges than to continue soy free so my fingers are crossed!

The only things I can think of that my LO eats in addition to yours, that are still milk, soy, gluten free--
salmon
butternut squash
kiwi
mango
meat - DS loves ham (ie/ sandwich ham), and will eat most other meats incl chicken, beef and turkey, but i do find that they are quite constipating for him as well, so again, i try to balance it out based on what else he is eating.
Organix corn snacks (are you in the UK ? not sure if they sell them outside of here, but they are puffed corn with carrot powder on them, shaped like wotsits or cheezies. they are DS's only "treat" and he loves them and i don't feel guilty because they are just corn!)

that's really it.  it is a very limiting diet to work within and it is harder with the back'n'forth bowel movements.

not sure if any of this helped or if it is just mindless rambling on my part, so will stop now!!!

Offline writelydivided

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Re: MSPI/Celiac? Symptoms - help please
« Reply #9 on: July 09, 2009, 02:36:30 am »
Wow - thanks for all the posts - especially re: foods. (We had salmon tonight, sweet potatoes, green beans. I'll have to buy some squash. I'd forgotten about squash. My three year old inexplicably gags and makes himself throw up if he eats squash - or corn. But that a whole different issue! Thanks for the quinoa idea for mornings; for some reason, I really struggle with figuring out what's for breakfast, so used to ease of oatmeal or yogurt). It's so helpful to know my little guy is not the only one out there!

Honestly, I'd look forward to a diarrhea case. I don't think he's ever had diarrhea. (Was worried he'd have major blowouts like his older brother does when we had to have him on antibiotics for a pneumonia incident, but, nothing.)

He actually rarely skips a day of poo. Usually, it's anywhere from 2-6 poos, and they're generally not small (definitely get the "log" comments from the husband--must be a male universal--sigh). But, like I said previously, he'll strain, grunt, cry up to 20 times a day like he has to poo, and nothing comes out during those. If he has a HUGE poo, then he might go the next day without any, but that's as long as it's been. He'll be really happy on that day, because of no straining. Sometimes he's straining so bad, I'll put him on the changing table and hold his legs. Since we're way beyond TMI considerations  :D , I'll let you know I can see the big poo about to come out, but then he doesn't get it out, and it might not be till the next day that he actually poos. I'd be uncomfortable too!

On the good news front, the diaper rash/open skin is nearly gone. That's making me think that SOMETHING we eliminated is starting to have some effect. Whether dairy, soy, or gluten, I don't know. . . .

We're definitely going to continue with the limited diet for at least another week or so. May take a trip to the doctor next week if still no improvement in the straining.

He seems to be getting hungrier, so I'm worried about whether he's getting enough fat. Have you all added coconut milk to rice milk?
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Samuel James, born 05-12-08
Maggie Jean, 08-15-09

Offline MasynSpencerElliotte

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Re: MSPI/Celiac? Symptoms - help please
« Reply #10 on: July 09, 2009, 02:52:01 am »
Just poking my nose in  ;D, Spencer has been having nasty smelling/looser stools since we started feeding her anything other than fruits, veggies and formula. At home we have been giving her cheerios, whole wheat toast, and I tried pasta a couple of times. She also had a bad reaction to oatmeal when she was about 6 months old (hives, cramps, bad poos). So, I've backed off the grains a bit, but now our problem is that at daycare they are not following their procedures and recording what she eats everyday so I have no clue what is going in (having a little chat with them tomorrow...)

Mashi, just wondering about the oranges, could it be too much vit C causing the diarrhea? Oranges do that to me if I eat too many  :-X

Heidi
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Offline Mashi

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Re: MSPI/Celiac? Symptoms - help please
« Reply #11 on: July 09, 2009, 07:09:31 am »
Interesting about the vit C. I never thought it was a nutrient /vitamin prob but the food itself. Thanks - will see if he is okay on oranges on days with little other vit c.

Rachel - one thing I strongly suggest is that you pursue the elimination diet for longer than just a couple of weeks. If there IS a food problem, it can take a couple of weeks just to get the problem food totally out of his system. Then once it is out, the bowel needs to heal from the damage done by the food. That can take a LONG time.  I would keep him on the limited diet until his bowel movements turn "normal" - I would suspect at least a few months, but if this takes more than that then I would see the doctor about it. Then, when you start to introduce new foods GO SLOWLY. Choose which you are going to go with first and stick to that one in small quantities for about 7 - 10 days to see if there is any adverse reaction.  Then add the next item and do the same. 

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Re: MSPI/Celiac? Symptoms - help please
« Reply #12 on: July 09, 2009, 14:07:22 pm »
About the rice milk and coconut milk, I added 1-2oz of coconut milk to the rice milk to add fat.  I bet it tasted better too.  :)
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Offline writelydivided

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Re: MSPI/Celiac? Symptoms - help please
« Reply #13 on: July 09, 2009, 23:02:17 pm »
Thanks, Mashimaro - we will keep going longer, as needed. Still straining, but rash almost completely gone. Maybe the internal stuff will start to follow!

Going to keep looking for the coconut milk and try that for added fat. . . .
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Maggie Jean, 08-15-09

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Re: MSPI/Celiac? Symptoms - help please
« Reply #14 on: July 10, 2009, 16:54:34 pm »
Are you having a hard time finding the coconut milk?  I found it in the Asian section of the grocery store, it comes in cans usually, for cooking.
Melanie
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