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I Feel Like The Worst Mom Ever!

Ginger7

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Ginger7 Rookie
Ginger7
Posted

I've made a few posts since December 2011, all about myself. I have gluten intolerance/Celiac. Call it what you like though I do not have a positive biopsy. My genetic testing was a category 7 from Prometheus, very high risk, w/ only 8 as highest risk number.

I have three kids, 8 yo boy, 2 yo girl and six month old girl. My son has always been small but we always brushed it off to us not being huge. I'm 5'4" 120 lbs and hubby is 5'10".

I've been gluten free for six weeks and I'm 75% better, mostly related to going from persistent D (10/day sometimes) to normal BMs. Have been thinking about testing kids but today it really hit me about my son...

He is in 5th% or less for height

He has only lost two teeth so far

Definitely, always the smallest kid, people ask if he is 6

Dark circles Under eyes

Gets a lot of stys around eyes

Extremely dry skin, ESP on hands

Loose large volume stools

Occasional abdominal pain w/ constipation

Runs like H to the bathroom (ie urgency) though I always brushed this off to him being a busy boy

He might have canker sores now and then

I'm crying while writing this bc I feel so terrible about this.

Have I set him up for being short his whole life, to be made fun of for this reason?? Is he in pain everyday and doesn't tell me bc a tummy ache daily is his normal? Why didn't I see this b4? I was so wrapped up in myself and my own symptoms that I didn't connect the dots with him.

I'm obviously calling the ped tomorrow to demand blood tests. Want a bunch besides full celiac serology and genetic panel. Also want CBC, Vit D, B12, ferritin, thyroid, cholesterol, LFTs and anything else I might think of. The ped better not F w/ me bc I'm not playing that game. We also live close to DuPont Children's hosp where there is a doc listed on celiac association, so will be making an appt, but will see if ped orders bloodwork in the meantime.

I will also get my 2 yo tested but guess I have to wait with my six month old.

Any words of encouragement or advice are welcome.

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alex11602 Collaborator
alex11602
Posted

First of all, definitely not the worst mom ever. You care about your son and know that you realize something is wrong you know to take care of it. It is difficult to realize that our children aren't 100% healthy when it is the norm for them. And besides that sometimes we as moms have to get better ourselves to realize that something is making our kids ill. Knowledge is power and now you have the knowledge to help your son.

Jestgar Rising Star
Jestgar
Posted

You are the best Mom ever!

You healed yourself so now you can take care of your kids. And he has plenty of time to catch up on the growth curve, if it turns out that he has gluten issues too.

Hang in there - you are doing everything right. :)

kareng Grand Master
kareng
Posted

Honey! I have 2 boys 16 & 19. The amount they grow between 12 and 16 is incredible! My 19 year old even grew an inch to 6 1 between 18 & 19. You get it taken care of at 8, he could likely be taller than dad.

Ginger7 Rookie
Ginger7
Posted
  • Author

And I want to say I had no idea he had loose large volume stools until I finally "caught" him in the bathroom today, looked at it and yes I took a picture with my phone. I don't care if people think that's gross, actually I don't think this community would...he is 8, it's hard to get him to tell me what his poop looks like!! The other symptoms are very sketchy and it's only when you put it together that I now feel like a dumb a@!

Roda Rising Star
Roda
Posted

Your not a bad mom. You are a good mom for picking up on this. Sometimes we look at things with a new perspective after we figure things out with ourselves.

I didn't know anything about gluten or celiac after I had my youngest son. He had so many issues as a baby and as a result I eliminated dairy, rice, oats, and tree nuts from my diet. In hindsite I was pretty gluten light.(I breast fed him for 16 months) After I started adding things back into my diet is when it all hit the fan. It took me another 2.5 years to figure out I had celiac disease.

I had both my boys blood tested after my diagnosis and they both had normal labs. They both continued to eat gluten. Two years later my youngest son had started having symptoms so I had him retested and he was positive. He was diagnosed with celiac also. In hindsite I think all of his issues as a baby were from gluten. No wonder his reflux never got better because I was feeding him barley cereal! He was always one of the smallest for his age, but let me tell you he has made up for it in the last 15 months since he has been gluten free. He has grown over 4"!! He is now in the 50th percentile for height from the 10th. He is not that far behind his brother that is 4 years older.

As for older brother, he was always small for his age to, but stayed consistent on his growth chart. Last year or so he started falling on the growth chart and just quit growing. He had other symptoms as well, but the stalled growth really concerned me since his little brother was playing catch up. All his testing is still negative, scope/biopsy as well, but I finaly decided to trial him gluten free. OMG, the changes in him also. He did challenge gluten, and had some minor side effects and has decided to stay gluten free. He says he feels so much better. He has grown 1/2" and put on 6 lbs in 5 months. I toyed with the idea to put him gluten free for about 2 years, but never could commit without positive tests.

Don't for one minute think you are a bad mom. Hindsite is 20/20. We can't play the would've, should've game with ourselves. There were plenty of signs with both my boys looking back. We did/do the best we can at the time with the information we have. There is plenty of time for him to catch up. My youngest son sure has and the oldest one is starting!

Ginger7 Rookie
Ginger7
Posted
  • Author

Thanks everyone, I feel alittle better. At least for my son, regardless of testing outcome, I will be going gluten free for him since I know my tests weren't 100%, but I feel tremendously better gluten free.

All my vitamins were very very low due to malabsorption and seeing him in the bathroom sealed the deal for me as it reminded me of me!!

Having trouble sleeping with my mind racing, and my 6 month old thinks it wake up time..,

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come dance with me Enthusiast
come dance with me
Posted

My 8yo was like that, but a year on a gluten-free diet has her to an average height and almost to a normal weight. You are not a bad mother, I also knew nothing about it and thought nothing of her symptoms until her paed wanted her tested. Suddenly it all made sense.

Juliebove Rising Star
Juliebove
Posted

I don't have celiac but I do have food allergies. I was not diagnosed until I was an adult. I was constantly sick to my stomach. My parents knew it but didn't know why. I just assumed everyone felt that way. I can remember getting angry when I'd see people smiling and laughing. I would think... How can they be acting that happy when their stomach hurts so much?

Food allergies are something that I think most Drs. just don't even bother to think about and I think celiac is pretty much the same thing.

The good news is that now you can get your son tested. If he does have it, he will get better when he is on the right diet and things might straighten themselves out. At least you know now more than you did before. And you can do something about it.

I know a girl who has all the signs of celiac. I did mention this to the mother but she just brushed it off. The girl does have serious food issues. For some reason she is fearful of most foods, thinking they will make her sick. Not sure why. She will eat wheat pasta and bread. And that's about it.

Ginger7 Rookie
Ginger7
Posted
  • Author

Why is it that my ped dr has no idea what I'm talking about regarding Prometheus testing??? They said first they do bloodwork, then celiac testing then referral to GI. Why on Earth would you subject an 8 yo to multiple lab sticks when a parent has Celiac? I ordered the test kit myself, it will be overnighted to my house and I'm bringing the requisition slip for her to sign when I get there for appt tomorrow. I actually think it is quite scary how little drs know. They are generalists w/ little specialty knowledge unless there are special circumstances. I'm going to get this test so I'd better spit out my gum b4 we go in...jk I will start out nice and polite.

merjill Newbie
merjill
Posted

I've made a few posts since December 2011, all about myself. I have gluten intolerance/Celiac. Call it what you like though I do not have a positive biopsy. My genetic testing was a category 7 from Prometheus, very high risk, w/ only 8 as highest risk number.

I have three kids, 8 yo boy, 2 yo girl and six month old girl. My son has always been small but we always brushed it off to us not being huge. I'm 5'4" 120 lbs and hubby is 5'10".

I've been gluten free for six weeks and I'm 75% better, mostly related to going from persistent D (10/day sometimes) to normal BMs. Have been thinking about testing kids but today it really hit me about my son...

He is in 5th% or less for height

He has only lost two teeth so far

Definitely, always the smallest kid, people ask if he is 6

Dark circles Under eyes

Gets a lot of stys around eyes

Extremely dry skin, ESP on hands

Loose large volume stools

Occasional abdominal pain w/ constipation

Runs like H to the bathroom (ie urgency) though I always brushed this off to him being a busy boy

He might have canker sores now and then

I'm crying while writing this bc I feel so terrible about this.

Have I set him up for being short his whole life, to be made fun of for this reason?? Is he in pain everyday and doesn't tell me bc a tummy ache daily is his normal? Why didn't I see this b4? I was so wrapped up in myself and my own symptoms that I didn't connect the dots with him.

I'm obviously calling the ped tomorrow to demand blood tests. Want a bunch besides full celiac serology and genetic panel. Also want CBC, Vit D, B12, ferritin, thyroid, cholesterol, LFTs and anything else I might think of. The ped better not F w/ me bc I'm not playing that game. We also live close to DuPont Children's hosp where there is a doc listed on celiac association, so will be making an appt, but will see if ped orders bloodwork in the meantime.

I will also get my 2 yo tested but guess I have to wait with my six month old.

Any words of encouragement or advice are welcome.

I'm in the same boat - just realizing this week that my daughter has celiac, or gluten intolerance w/o celiac. She was tested 5 years ago for celiac - but all blood tests were negative. She did okay for a few years, and now she is failure to thrive. I feel awful.

Ginger7 Rookie
Ginger7
Posted
  • Author

Well, here is an update.

CBC pretty normal, lots of low normals but within range. A few interesting results,

B12 high normal

Ferritin 17 with low end of range 10

Vitamin d low 34 with low end of range 31

I've read that both iron and vitamin d are absorbed in duodenum vs b12 in the terminal ileum, early celiac disease often presents with low iron and vitamin d but normal b12 until the disease progresses. So, that made sense...

Today the celiac panel, from Prometheus came back negative across all five parameters. His total IgA is 93 within the range which starts at 44. He does have the DQ2 gene.

We have a GI appointment Thursday where I imagine we might discuss endoscopy. I guess I'm mad, frustrated, etc. Not that I want my son to have celiac, but all the symptoms point to celiac and I thought the tests would show it.

kareng Grand Master
kareng
Posted

Well, here is an update.

CBC pretty normal, lots of low normals but within range. A few interesting results,

B12 high normal

Ferritin 17 with low end of range 10

Vitamin d low 34 with low end of range 31

I've read that both iron and vitamin d are absorbed in duodenum vs b12 in the terminal ileum, early celiac disease often presents with low iron and vitamin d but normal b12 until the disease progresses. So, that made sense...

Today the celiac panel, from Prometheus came back negative across all five parameters. His total IgA is 93 within the range which starts at 44. He does have the DQ2 gene.

We have a GI appointment Thursday where I imagine we might discuss endoscopy. I guess I'm mad, frustrated, etc. Not that I want my son to have celiac, but all the symptoms point to celiac and I thought the tests would show it.

After your GI appointment, if they aren't going to endoscopy, you can try gluten-free. He could have intolerance which doesn't show up in blood tests.

  • 2 months later...
Sofire Newbie
Sofire
Posted

How did it go?

You are not a bad mom

1974girl Enthusiast
1974girl
Posted

On his height....have the ped. look at his curve. Has it gone down? I have some friends with very short kids and short parents. They say that the kids are fine because they have always been on the low curve. No change. However, my child was 50% for 6 years then dropped to 21%. Turns out to be low thyroid. (celiac 4 years later) They go together, too. So if you do have celiac concerns, also have his thyroid levels taken. My pediatician said that parents bring their overweight kids to her and ask for their thyroid to be tested. She said she knows it isn't it IF their are of normal height. For some reason it affects height in kids more than weight. My daughter played "catch up" and they told me that she would. 4 years later, she is back at 50%. Just thought I'd throw that out there.

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