So Down Right Now About Enterolab Results On My Kids

[Sarah8793]

My kids have been gluten-free/cf now for 3 days. I'm digging and searching like mad for nutritous snacks and lunches for them. I keep feeling guilty (irrational maybe) for testing them when they have no symptoms. I understand the gluten sensitive, but the casein sensitive is bothering me. I know gluten can be asymptomatic, but can Casein?? I just keep thinking that if they have a problem with casein, then my son who used to drink 2 cups of milk everyday would have atleast 1 digestive symptom. Please help if you know anythng abuot this. I'm just really struggling right now.

Sarah

[Fiddle-Faddle]

Some kids who have problems with casein don't have intestinal symptoms--they might have recurrent ear infections, colds, or even eczema.

Also, if the kdis have a gluten intolerance, the body may be attacking casein as well because (I think) the proteins are vaguely similar; after being gluten-free for a while, many people find that they can again tolerate casein. Lactose is another story, but it's relatively easy to deal with.

[Ursa Major]

Sarah, my husband has a cousin who is casein intolerant. Her only symptom when she has milk products is severe depression, no digestive symptoms at all!

For a while she was severely depressed, nothing helped. Because milk allergy runs in the family, she eliminated milk (her mother and father are/were both doctors), and the depression went away within days. But after a while she questioned the casein problem (she loves milk products), and ate some ice cream. The depression hit her like a sledgehammer by the next day.

So, casein (just like gluten) can attack the brain, rather than the digestive system. Or maybe other parts of the body, like the skin. My oldest granddaughter had the most horrible eczema you would ever want to see as a baby and toddler. She looked like she had scales, from head to toe. It was so itchy, that during her first winter they put her to bed in a snow suit, with hood and mittens, so she wouldn't be scratched totally bloody by the morning.

When she got tested and was found to be intolerant to all dairy, and my daughter elimininated dairy from her diet, the eczema cleared up within weeks. She now has the most beautiful, smooth, translucent skin (she is six now).

[Sarah8793]

Sarah, my husband has a cousin who is casein intolerant. Her only symptom when she has milk products is severe depression, no digestive symptoms at all!

Ursula,

I react this way to gluten. Within an hour of having it I become very depressed and tearful. But I can't think of any symptom my 4 year old dd has. Are you saying that there may be an effect on her that I just can't see? The only things I notice in my 7 year old ds, is he is very sensitive and can be emmotional sometimes, but is not depressed.

[Ursa Major]

Ursula,

I react this way to gluten. Within an hour of having it I become very depressed and tearful. But I can't think of any symptom my 4 year old dd has. Are you saying that there may be an effect on her that I just can't see? The only things I notice in my 7 year old ds, is he is very sensitive and can be emmotional sometimes, but is not depressed.

Well, in kids depression doesn't necessarily get expressed the same way as in adults. Being very sensitive and emotional could be signs of depression.

Anyway, I do believe that they may have symptoms you aren't aware of. You may be surprised by the changes in them once they have been both gluten-free and casein free for a while.

[CarlaB]

I have casein intolerance. When Enterolab told me that, I had been gluten-free for almost three months and was feeling so much better that I didn't eliminate casein. Then, each time I thought I had gotten glutened, I realized that I had consumed dairy. I finally eliminated dairy 6 months after the gluten and am finally feeling great.

So, even if they don't seem to have the casein reaction, it would probably become evident at some point. Maybe not till they're older ... I was 43 and sick all my life!! I never in a million years would have guessed dairy was a problem for me.

[Nantzie]

Hugs Sarah...

When I went gluten-free, I was just trying to get rid of the gas and diarrhea.

However, the list of symptoms that went away after going gluten-free is longer than my arm. 90% of which I had no idea was connected. Some of which I had no idea was happening.

The oddest was that my daily headaches went away. The odd part was that I didn't realize I was having headaches. At all. I'm not kidding. A year ago I would have sworn up and down that I never, ever, EVER got headaches. Never.

Once I went gluten-free, my head, which I never realized was hurting, stopped hurting. I kind of had a spacey feeling there for a few days, because the lack of headache that I never realized I had in the first place, created the distinct feeling of lack of head. Very odd. Very, very odd.

Now, one of my main signs that I got glutened is a miserable headache. To think that I lived all those years with a constant headache just stuns me.

The thing is that unless you live inside another person's body there's no way to know how they feel. So your child may feel SO much better gluten-free/CF, but have no real way to express it. There's no way to know from the outside.

Those are the things I'm reminding myself of with my daughter too. I'm positive she has a gluten problem. Enterolab proves it. My doctor trusts their results. But in the back of my mind part of me wonders if maybe we can wait. Maybe a couple more months, heck a couple more years of damage couldn't really hurt. Maybe we should leave it up to her when she understands it. But the front of my mind remembers being 4 and 5 years old and crying because I was so tired, but I couldn't sleep because my brain felt like it was buzzing, being in 2nd grade and not being able to concentrate enough to follow what the teacher was saying. And being in 4th grade and almost failing because I couldn't understand simple math. And being in 7th grade and being so exhausted... And getting D's and F's and fighting for the C's in high school just so I could graduate. And the D that started after I had mono. And not being able to even get through one semester of community college. And picking jobs that would accommodate my insomnia because after having nightmares and anxiety dreams and the buzzing brain and not being able to sleep night after night after night, I was so exhausted by the time I fell asleep around 3 or 4 am, that I would sleep until noon and still have to drink coffee all day to stay awake. And the pain that started when I was pregnant with my second child to the point where I could barely pick him up. Not being able to even take my kids out in my own backyard to play, much less go to the park or even the store.

None of this stuff is anything I ever thought to mention. Honestly, I just thought that this is how EVERYBODY felt. I thought everybody had to lay awake for hours before falling asleep. I thought everybody was tired all the time. I thought everybody had to fight tooth and nail for knowledge that would stay in their heads. I thought that mentioning it would just make me a whiner. Because everyone else was dealing with it.

It was only in the last six months at the age of 35 and a half that I realized that I was just really, REALLY sick.

The front of my mind is just screaming a lot louder than the back of my mind.

Nancy

[Sarah8793]

CarlaB and Nancy,

I am reading your posts this morning and am almost in tears with relief from the guilt I have been feeling about starting them on casein free. I guess I have been too focused on obvious digestive symptoms becase that is what I had with casein. With gluten I mainly had the mental and brain symptoms. But casein may have been affecting me the same way years ago before it showed strong digestive symptoms. Thank you so much! I would be a wreck without this community.

Nancy,

In your post, I was able to see some of my ds. You mentioned some things (like not being able to concentrate in second grade. My ds was just beginning to get like this at the end of last school year (First grade). And, while he gets very good grades, he also decided that he s math now. A total surprise to me. He also occasionally suffers from night s. So in retrospect these are possibilities. Your examples of non-digestive symptoms were very helpful! Oh and by the way, I read your signature of your symptoms from being glutened and it could be cut and pasted on mine. I am affected exactly like you.

Sarah

[Nantzie]

Well, it looks like we're officially going down the same road together. Celiac is so weird isn't it?? To have all that for years and (for me at least) not even show up positive on blood or biopsy. When I think about all the people who go to their doctors with symptoms but are told they don't have it because the tests are negative it makes me really sad.

I'm just so grateful Enterolab is here. Dr. Fine should get the Nobel Prize in Medicine. Or Sainthood. Or both.

You know, I remember my dad telling me once that in the summer between 3rd and 4th grade he completely forgot everything he had learned in 3rd grade, 2nd grade and 1st grade. He could still read and write, but he lost all the knowledge he had and couldn't remember how to do math or anything. His parents totally thought he was being lazy or trying to pull something and never thought to take him to the doctor or anything. He was able to learn from that point on, but he said that it was like starting from scratch. Scary that that happened as an older child. They moved around a lot and eventually he was just able to catch up with the rest of the kids as he went from school to school.

Hugs to you Sarah...

Nancy

[chrissy]

so are your kids diagnosed with the gluten intolerant gene, but not the celiac gene? is there something different about the gluten intolerant gene as compared to the celiac genes? you can have the celiac gene but not have celiac. am i understanding that if you have the gluten intolerant gene you are automatically gluten intolerant-----it doesn't need to be activated like the celiac gene? is the casein intolerant gene the same way?

[Sarah8793]

so are your kids diagnosed with the gluten intolerant gene, but not the celiac gene? is there something different about the gluten intolerant gene as compared to the celiac genes? you can have the celiac gene but not have celiac. am i understanding that if you have the gluten intolerant gene you are automatically gluten intolerant-----it doesn't need to be activated like the celiac gene? is the casein intolerant gene the same way?

Hi,

My kids each have one main celiac gene and one gluten sensitive gene. I'm not sure about the difference between celiac and intolerant genes affecting a person differently and I'm not aware of a casein intolerant gene. Sorry I'm not able to answer your questions. Someone else may be able to. I discovered that my kids were presently gluten and casein intolerant through enterolab. So they have the genes and activation.

[chrissy]

i have been trying to figure out the gluten intolerant gene question for a little while---i guess i should post a general question on the board.

[heli]

i have been trying to figure out the gluten intolerant gene question for a little while---i guess i should post a general question on the board.

Sarah - I think this thread started out about snacks. One of the best snacks that I have found (and carry with me at all times) is the Think Organic food bars. Some are not gluten free so, check ingredients.

My reaction to casein is muscle aches all over and severe fatigue for 1-2 days. It's like I have been drugged and I can't get out of bed but no digestive symptoms at all.

By the way, I do have a background in science so I could try to explain gene questions. I have had enterolab tests done. I am DQ2, 7 and both of my daughters are DQ2,6.

[azmom3]

Hugs Sarah...

When I went gluten-free, I was just trying to get rid of the gas and diarrhea.

However, the list of symptoms that went away after going gluten-free is longer than my arm. 90% of which I had no idea was connected. Some of which I had no idea was happening.

The oddest was that my daily headaches went away. The odd part was that I didn't realize I was having headaches. At all. I'm not kidding. A year ago I would have sworn up and down that I never, ever, EVER got headaches. Never.

Once I went gluten-free, my head, which I never realized was hurting, stopped hurting. I kind of had a spacey feeling there for a few days, because the lack of headache that I never realized I had in the first place, created the distinct feeling of lack of head. Very odd. Very, very odd.

Now, one of my main signs that I got glutened is a miserable headache. To think that I lived all those years with a constant headache just stuns me.

The thing is that unless you live inside another person's body there's no way to know how they feel. So your child may feel SO much better gluten-free/CF, but have no real way to express it. There's no way to know from the outside.

Those are the things I'm reminding myself of with my daughter too. I'm positive she has a gluten problem. Enterolab proves it. My doctor trusts their results. But in the back of my mind part of me wonders if maybe we can wait. Maybe a couple more months, heck a couple more years of damage couldn't really hurt. Maybe we should leave it up to her when she understands it. But the front of my mind remembers being 4 and 5 years old and crying because I was so tired, but I couldn't sleep because my brain felt like it was buzzing, being in 2nd grade and not being able to concentrate enough to follow what the teacher was saying. And being in 4th grade and almost failing because I couldn't understand simple math. And being in 7th grade and being so exhausted... And getting D's and F's and fighting for the C's in high school just so I could graduate. And the D that started after I had mono. And not being able to even get through one semester of community college. And picking jobs that would accommodate my insomnia because after having nightmares and anxiety dreams and the buzzing brain and not being able to sleep night after night after night, I was so exhausted by the time I fell asleep around 3 or 4 am, that I would sleep until noon and still have to drink coffee all day to stay awake. And the pain that started when I was pregnant with my second child to the point where I could barely pick him up. Not being able to even take my kids out in my own backyard to play, much less go to the park or even the store.

None of this stuff is anything I ever thought to mention. Honestly, I just thought that this is how EVERYBODY felt. I thought everybody had to lay awake for hours before falling asleep. I thought everybody was tired all the time. I thought everybody had to fight tooth and nail for knowledge that would stay in their heads. I thought that mentioning it would just make me a whiner. Because everyone else was dealing with it.

It was only in the last six months at the age of 35 and a half that I realized that I was just really, REALLY sick.

The front of my mind is just screaming a lot louder than the back of my mind.

Nancy

Hi Nancy,

Other than the fact that I'm a year older than you, any of my friends or family reading this would think it was me! I am getting the blood test tomorrow and can't wait for the results. It would be amazing to me if all these years of problems could finally be over by simply (well, maybe not so simply at the beginning!) changing my diet. Thanks for your post!

[Nantzie]

My advice to anyone that has celiac symptoms is to try the gluten-free diet no matter what the blood and biopsy says. My medical tests were all negative. It was just me deciding that I was going to give it a shot anyway that changed my life.

I hope that finding this board is the first step on the road to feeling better.

Nancy