Should I Keep Searching?

[Nic]

I am looking for some advise because I know you all have been in similar situations. I have posted many times about my son still having syptoms about once a month even though he is gluten free. His blood was tested and the antibody levels are normal now, a year ago they were threw the roof. I know he is getting healthier because he looks super good and has gained 10 pounds in the past year. But, I still feel as though his life completely revolves around pooping. At least once a month, a cycle begins where he poops a small amount for several days and then dwindles to nothing for days. Then he passes some poop on the firmer side, not hard, and then diarrhea. He is consistantly on Mirolax (stool softener) and fiber which keeps his bowel movements very, very soft. He can not seem to go at all if it is not super soft or it is a tremendous effort for him. When his stomach is bad, he feels and acts awful. I have brought this up to my ped GI many times. But I get no where. He feels that Jacob simply has severe constipation. But then goes on to say that out of all the cases of constipation he has seen in his career, Jacob seems to be in a league of his own.

Before Jacob was diagnosed his constipation was tremendously severe. Suppositories, enimas, and even the drink before a colonoscopy did not make him go. He was initially tested for Hirschsprungs Disease. It was a negative but in the mean time, tested positive for Celiac. After his dianoses he was still having trouble and were going to test him for Ultra Short Segment Hirschprungs Disease. They decided against it. The advise I am looking for is, should I just except that this is just how it is for him. He just can't poop unless it is mush? I can't help but wonder if we just happened to stumble arcross the Celiac while trying to find the real reason for his syptoms. Regardless, he is getting ready for Kindergarten in September and I feel as though I need to get this resolved. It took him three trips to the bathroom today, each time sitting for quite some time, to be able to have a bowel movement. How will he do this in school?

[Ursa Major]

Nic, does Jacob still have dairy? If yes, you may want to try eliminating dairy to see if this helps. Also, soy and/or corn could be a culprit. Or just about most anything, if he is intolerant to it. Most people with celiac disease also have other intolerances, the most common ones being the ones I mentioned. You may want to investigate that.

Most of those would NOT show up on allergy testing. The best way is an elimination diet. Cut out the suspected culprits for a couple of weeks, and then reintroduce them one at a time, a week apart from each other (to rule out delayed reactions, which are common), to see if he reacts to those foods.

I hope you figure it out before he starts Kindergarten!

[CarlaB]

I agree with Ursula. I just read that 50% of celiacs also have a casein intolerance. I also believe that dairy is a huge cause of constipation.

Soy and corn are questionable, too, although I personally don't avoid corn. I watch soy as it gets me bloated (Just once a month or so, I really want a cup of coffee with cream -- so soy it is).

[Nic]

Hi, thanks for the advise. I was wondering about the dairy. Does anyone know of a milk substitute that tastes close to milk? This is a boy that loves milk.

[jerseyangel]

This is the one I use--it's soy, grain and nut free--

Open Original Shared Link

[TCA]

I use various soy and almond milks for cereal, but for drinking, the only thing I can stand is Silk Very Vanilla. Silk and 8th continent chocolate are pretty good too.

[shayesmom]

Hi, thanks for the advise. I was wondering about the dairy. Does anyone know of a milk substitute that tastes close to milk? This is a boy that loves milk.

Vance's is okay. We also like Pacific brand rice milk, coconut milk, hazelnut and even almond milk as well. We do not do soy milk however as soy can cause the same intestinal damage as gluten does in some people (and I suspect dd is one of those people). As with everything else, it takes a while to get used to differences in flavor and texture.

Rice Dreams ice cream is gluten-free so you can still have "ice cream". We also opt for sorbets. As for drinking a glass of milk.....there really is no substitute at first. The taste buds do adjust though.

You know, my dd is completely intolerant to casein in dairy. And yet, she is able to tolerate raw goat cheese. Goat milk contains beta-casein whereas cow's milk contains alpha s1-casein. For some, this substitution actually works. It also helps to sometimes stick to raw dairy as the pasteurization of conventional (and organic) forms causes a change in the alpha s1-casein which is ends up being detrimental to so many of the dairy intolerant. I believe that I read somewhere that beta-casein is the type of casein found in human breastmilk (but you may want to search more into that to be sure).

In any case, it may be best if you eliminate all dairy for at least a week or two to see if there is a difference. If dairy is your culprit, you can then experiment a bit to see what your limitations are and just how sensitive your ds is.

If nothing else, there are several foods you can use that may also help in alleviating symptoms. Here's a list of suggestions that I got from Healing with Whole Foods by Paul Pitchford:

Foods to treat constipation

Foods that lubricate the intestines:

Alfalfa sprouts

Almond

Apple

Apricot

Banana

Beets

Carrots

Cauliflower

Honey

Okra

Peach

Pear

Pinenut

Prunes, stewed

Seaweed

Sesame oil

Soybeans

Spinach

Walnut

Foods that promote bowel movement

Asparagus

Black sesame seed

Bran from oats, wheat or rice

Cabbage

Castor oil

Coconut

Fig

Papaya

Peas

Sweet potato

Flora-Enhancing foods (probiotics)

Acidophilus

Chlorophyll-rich foods:

Dark green veggies

Micro-algae (wild blue-green and spirulina)

Wheat grass

Dairy yogurt with “live cultures”

Kefir

Miso

Sauerkraut

Seed yogurt

**Overconsumption of poor-quality milk products is a primary cause for constipation.

[Nic]

I have another question. Is being dairy intolerant the same as lactose intolerant? I looked in the store today and found a product called "Lactaid" that says it is whole milk but 100 % lactose free. Is this OK? I tasted it and it tastes fine. Is this the wrong kind of product?

[cmzirkelbach]

Lactose is carb and can be a problem for some people.

But, if dairy is a problem for your son, it is just as likely the casein, which is a protein found in dairy products.

I know this sounds tough, but try to stay away from any dairy product to see if there is an improvement with your son's bowels.

[Nic]

I am sorry to sound so ignorant about this but I had a revelation. When Jacob was an infant he was formula fed. He would projectile vomit regularly so they kept switching his formula. Finally they put him on Nutramigen and that worked. He stayed on that until he was 12 months and then switched to cows milk and that is when the constipation problems started. We went through many pediatricians in the first few years and I kept addressing the constipation but no one took it seriously. Until, last year when he got so sick that 4 enimas in one er visit could not help him. Then all the test began and led us to celiac. Could it have been dairy all along and we fell upon the Celiac (my father has celiac also). Regardless, why hasn't anyone (doctor's) discussed dairy with me? I wonder if they ran any tests for that and it came back negative and that is why it was never brought up. Sorry to vent, I am feeling very panicked that it might be a milk protein allergy and not lactose. The lactaid tastes like regular milk and I can't imagine having to take anything else that he enjoys from him. He has been through so much.

[Guest DONNAJ]

I am sorry to sound so ignorant about this but I had a revelation. When Jacob was an infant he was formula fed. He would projectile vomit regularly so they kept switching his formula. Finally they put him on Nutramigen and that worked. He stayed on that until he was 12 months and then switched to cows milk and that is when the constipation problems started. We went through many pediatricians in the first few years and I kept addressing the constipation but no one took it seriously. Until, last year when he got so sick that 4 enimas in one er visit could not help him. Then all the test began and led us to celiac. Could it have been dairy all along and we fell upon the Celiac (my father has celiac also). Regardless, why hasn't anyone (doctor's) discussed dairy with me? I wonder if they ran any tests for that and it came back negative and that is why it was never brought up. Sorry to vent, I am feeling very panicked that it might be a milk protein allergy and not lactose. The lactaid tastes like regular milk and I can't imagine having to take anything else that he enjoys from him. He has been through so much.

hi, my daughter had a similar problem with pooh when she was born and had similar tests, turned out to be severe reflux - cause from the formula they put her on (and she now at 2 still can't tolerate milk) so maybe the answer to your question its diary or casein - suggest you try your own food challenge - we noticed a change immediately once we stoppd all milk/dairy. good luck!