Is This Normal?!

[annofthejungle]

My five year old son has lost weight since going gluten free 3 months ago. He was at an all time high of 40.5 pounds last November when the diarrhea started, was holding steady at 38 pounds for several months, and all of a sudden this month is down to 36.5 pounds. He had a biopsy and tested negative for celiac, but the gluten free diet is the only thing that has worked to stop the liquid diarrhea. We had almost instant results going gluten free (had his first formed poop in 2 months within 3 days of being gluten-free). We've messed up twice in the last month and the poop has been pretty unbelievable. I told his doctor to imagine taking the contents of her toilet before flushing, grinding it up in a blender, and then pouring it out on her floor, rugs and furniture -- truly unbelievable!!! He's hungry all the time and eats almost all day long, but can't seem to gain weight. I read somewhere on here that kids with celiac look like the starving kids in India and that's what my son looks like! We go in again in two weeks and I'm hoping like crazy his weight will be up. The GI doctor recommended Pediasure. Any other ideas?

To complicate matters my son has Down syndrome and is on chemotherapy for leukemia (chemo ends August 30 -- Woo hoo!). Last week it was discovered that he had a bladder obstruction that had the effect of stretching his bladder beyond anything the urologist had ever seen in a child his age. He's able to hold 800ml (about 27oz.) in his bladder. Mix that in with the liquid poop and you have quite the volume of mess! You can have a look at my sweet little man here:

Open Original Shared Link

[ShayFL]

What a beautiful little boy.

I am an adult, but I wanted to tell you that I lost about 5 lbs in the first month of gluten-free. Weight I did NOT need to lose!! And I was STARVING all of the time....eating everything I could. Im still too thin. But I have gained that 5 back in the last 6 weeks. I am on month 4.

I hope this helps.

[Ursa Major]

I hope me suggesting this is not going to get me angry replies and abuse. But my research suggests that leukemia is not cancer, but a fungal infection.

If that is true, his problem may be fungi, candidiasis and secondary to that, possibly parasites.

Here are some links to read through, before you dismiss this:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I could find more, but I have been looking for an hour already.

The fact is, that most leukemia patients (maybe all) have a systemic fungal infection. After everything I've read, it is not the leukemia that comes first and then the fungus comes along, but rather that the fungus caused the leukemia.

So, you can be upset with me or blast me for my opinion (formed after years of research of the available data), or you can do your own research and act on your findings.

I hope that your sweet little John will get well.

[annofthejungle]

Ursa Major,

None of the links your provided came from medical journals or cited controlled studies. It's true that some people on chemotherapy develop fungal infections because of their weakened immune systems, and people with weakened immune systems are more likely to develop a fungal infection even if they don't have cancer. John has been tested for fungi, candidiasis and parasites and all tests came back negative.

My son has been on chemotherapy for three years. The implication of your post is that I haven't done any research of my own in all that time. What do you think I've been doing for the last three years? You're not the first to suggest to me that modern medicine has it all wrong, but what do you suggest I do with that information? Do we stick with the tried and true knowing there's an 85% chance our son will live, or do we ignore the doctors and rely on anecdotal evidence, treat him for a fungal infection and change his diet, crossing our fingers and hoping for the best? There are many who claim cancer can be cured by diet alone, and we cancer parents cry, "Show me the evidence!" I don't see cancer in your long list of ailments. Until you've dealt with it firsthand, I won't have much patience with what you suggest.

My original question had to do with weight loss and what to do about it. If anyone has any ideas pertaining to that, I'd love to hear them!

[Pattymom]

My dd, just turned 4, had an initial gain goign gluten free, then nothing for some time. When we also took out dairy and added digestive enzymes she finally started really gaining and growing. I give her bromelain and acidophilus at every meal--chewable and yummy. Let's see we were gluten free in Feb, inititally gained 1/2 lb., then another half pound until the end of May. With the enzymes from end of may to last week 1 1/2 lbs of weight and nearly 2 inches of height, which for us is incredible. I can only imagine what additional stress and weight loss the chemo brings on his body, not to mention the leukemia. I would imagine healing is going to be a long process. Hang in there.

Patty

[angie315]

Could you tell me more about these enzymes. My daughters doctor hasn't mentioned the use of these. What do they do? What kind of research has been done on there useage? We are still waiting for weight gain....

My dd, just turned 4, had an initial gain goign gluten free, then nothing for some time. When we also took out dairy and added digestive enzymes she finally started really gaining and growing. I give her bromelain and acidophilus at every meal--chewable and yummy. Let's see we were gluten free in Feb, inititally gained 1/2 lb., then another half pound until the end of May. With the enzymes from end of may to last week 1 1/2 lbs of weight and nearly 2 inches of height, which for us is incredible. I can only imagine what additional stress and weight loss the chemo brings on his body, not to mention the leukemia. I would imagine healing is going to be a long process. Hang in there.

Patty

[Ursa Major]

Ann, I had no intentions of making you feel like you haven't done your own research. The reason that there is no mention in medical journals is, that the medical profession has a vested interest in making money with chemo and radiation, and won't even look at alternatives. Cancer is big business.

Chemo will destroy the immune system. I understand that it would be very scary to go against your doctor, especially because they claim you (or your kid, which is worse) would die without it.

Chemo will cause weight loss, from all I've read. Maybe he won't gain until he is done with it?

I think the enzyme and probiotic idea is a good one.

[gfpaperdoll]

I know where you are coming from Ursa & I totally understand the mom's dilemma. We are in the middle of a medical change in this country, but cancer has not been touched by it yet. I have been thru that leukemia scare myself - I know it is not the same - because if your child has it - you just hold your breath. But it turned out that I did not have leukemia, although I already had a doctors appointment at M D Anderson, before I got a diagnosis, helps to know doctor people sometimes. Believe me I did plenty of research. I will say that I did get a second opinion & NOT from the referral from the doctor that "diagnosed" me. If you ever get a disease & you want a second opinion - I would advise NOT to use the referral from your doctor.

& as someone chastised me today on another post about doctors, I have more experience with doctors than you can imagine & lived with one for longer than I want to remember. I spent years talking to doctors & their wives & attending all the medical meetings. One of the things that I learned helped save my life later on, that was a time when the controversy was going on behind the scenes about hormone replacement for women. Almost all women of a certain age were on hormone replacement. Interesting though that none of the doctor's wives took them. So I never took them either. Several of my friends did take them & ended up with cancer...

I hold my breath afraid that my grandchildren will get leukemia - high risk for them because they are all big gluten eaters & have issues. If they did - the first thing that I would do - would be a clone of Ursa & force the parents to keep them gluten-free plus dairy free & soy free & a couple other things...

I do have a friend that has an aunt that lives next door to her & the aunt will be 100 in Jan 2009. She has had lymphoma for several years now - my friend, whose mother died of undx celiac & had major complications from diabetes & probably had DH, has had this woman gluten-free for 3 years now & her cancer is disappearing & when I talked to the friend the other day, she said the doctor said that it was almost gone... She did not get any cancer treatment because of her age. The doctors thought it would kill her & they expected her to die any day anyway... This woman lives by herself & potters around & makes her own breakfast & lunch & does her laundry etc. My friend does make her dinner & drives her to the store, church & to the doctors offices. You can take chances with an old woman because you "have nothing to lose" but with a child it IS different...

I do think that what will help the child immensely is to go on a gluten free diet & dairy free with as little grains as possible. & please do not make the mistake of buying into the soy hype. I suggest the book "Good Calories Bad Calories"

unfortunately, in this country there is not much chance that the parents have a choice as to treatment - the child will be taken from them if the community thinks they are being mistreated.

I will not go into all the details of cancer that will only upset a mom, but I will say that your child is almost through the chemo & now is the time to insure that he gets healthy by giving him an excellent diet, preferrable with no grains, except some corn meal & coconut flour etc, most days. oddly our tastes do adjust & although I keep supplies here to bake anything that I want, I would rather have fresh fruit or some meat.

as to adding calories for the child, I suggest that you buy the first pressed coconut milk & cook with it, make a cream soup with it - use it with fruit in smoothies, also fry foods in coconut oil. It is good to give the child sweet potatoes, you can fry them like white potatoes. I would not give too many white potatoes. Make cornbread with coconut milk & cornmeal - no flour added. I also suggest bacon, as much as he will eat & do not drain it & you could heat up a White Corn Tortilla to go with it, in a little of the bacon fat. Cook some fried eggs in the bacon fat. Cook fatty pork chops & keep them on hand for a cold snack. Meat fat is healthy for everyone. Avocadoes also have the good fats. Stir fried kale is good or torn in a salad, if your little guy likes greens. serve spaghetti sauce over rice - white rice is easier to digest. If he does not like veggies you can puree them & hide them in the spaghetti sauce.

[taweavmo3]

I don't have much to add, except that since it has only been 3 months since you started the diet, I would give it a bit more time. If you've made a few mistakes (as we all do in the beginning), his intestines haven't had a chance to start healing yet. Once you really get a handle on the diet, I think you'll see some weight coming back on.

Also, since his little system has been under so much stress, you might look into supplements. I would start with some quality probiotics (there are lots for kids out there), some cod liver oil (we use Nordic Naturals for kids), and digestive enzymes. You also might consider cutting out dairy, if you haven't already. This is the one thing I SWEAR by!!!! Taking out dairy has made the biggest difference in my kids health. There are plenty of calcium supplements, and lots of other foods with calcium. And I would also really limit his sugar intake if you can, just to give his body a jump start on healing.

I also wanted to second the suggestion regarding coconut oil....good, quality coconut oil and coconut milk (like the Thai Kitchen c.milk you can get at any store) is extemely beneficial for the body. It has antifungal, antimicrobrial properties, lauric acid (lauric acid is also found in breastmilk), and healthy fat. I try to add as much healthy fat into our diet as possible, so we use coconut oil to cook and bake with, coconut milk instead of cow milk (or almond/rice milk), and I also try to add avacados wherever I can. I add olive oil to alot of our foods too.

This may seem extreme, and you won't find many mainstream docs who will be able to sit down and tell you what supplements/substitutions will help. But I promise you, this stuff works! I hope that helps somewhat....best of luck to you and your little boy!