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So Skinny :(


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26 replies to this topic

#1 StephanieL

 
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Posted 04 May 2014 - 08:28 PM

DS is 7, dx at 3 1/2 and gluten-free since. He also has life threatening food allergies to dairy, egg, peanut, tree nuts, banana and blueberry.  Hypo thyroid which is controlled with meds.

 

He is so think it's like skin literally draped over bones.  His tTG's are also a bit over "normal" after finally getting them down after years. Not sure why, nothing has changed in what he eats or procedure at school/home.

 

We don't limit what he eats but he doesn't really ask for much. He gets his three meals, an after school snack and a snack before bed. Sometimes seconds of breakfast and sometimes dinner too.  I just can't help but think I'm missing something because this can't be healthy. 


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#2 dilettantesteph

 
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Posted 05 May 2014 - 09:06 AM

I'm sorry.  You say the ttG are up, so I'm guessing that means that he is getting some gluten cross contamination.  While you haven't changed anything, it is possible that one of your food manufacturers has changed something.  I remember that happened to me one time.  My quinoa supplier added a wheat berry product that was packaged in the same facility as the quinoa.  Quinoa that had been just fine now seemed to bother me.  I'm assuming it was due to cross contamination in the facility from the wheat berries.  You might want to look into that sort of thing.  I hope that you can figure it out.


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#3 nvsmom

 
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Posted 05 May 2014 - 09:28 AM

The slightly elevated tTG IgA could be due to his thyroid problems.  I've been gluten-free for almost years but my tTG IgA was still hovering above normal - I'm guessing my thyroid problem is keeping it up as I am 100% sure I have not been glutened in the past year.  That being said, it is possible that he's had a bit of gluten while out of sight.

 

As a general rule, people gain weight when they eat more starches and sugars. Breads, noodles, muffins, rice, cereal, fruit juices and any sweets will help add weight. Extra calories will do it too, but it is hard to eat excessive veggies, proteins and fats.

 

Maybe add drinks with some "oomph" that he can drink in school. Ensure types of drinks or smoothies with protein powder and fruit.

 

Best wishes.


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#4 IrishHeart

 
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Posted 05 May 2014 - 09:48 AM

Stephanie

From the many posts I have seen you comment on through the years, I know what a diligent and careful Mom you are, so I am sure he's not getting gluten somehow.

He is eating, which is good. If he were turning down food or not keeping it in somehow, I'd be more concerned, but I am neither a doctor nor (sadly) a mother, so maybe others have more thoughts on this.

My first thought was maybe you could bring him to someone like Dr. Gaundalini or Dr. Fasano for a consult over the summer?

Just a thought.


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#5 StephanieL

 
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Posted 05 May 2014 - 11:01 AM

Thanks all. I do appreciate you taking the time to answer me!

 

Food CC- I call manufacturers all the time and I don't think that's the issue. He's not super sensitive AFAIK but with his allergies, I don't leave things to chance. I have testing things in the past that I was suspicious of but I really don't think that's it this time.

 

Sneaking- While I can not say 100% I feel I can say with 99.999% accuracy no.  Anything with gluten most likely has dairy or egg. Either go those two, even in small amounts will send him into anaphylactic shock. I believe with that high a certainty that no, he's not sneaking because of that!

 

Thyroid-  Did yours return to normal then jump back up? His was WNL back in July of last year after being on synthroid for a while.  It's now gone back up :(

 

Supplemental drinks- Haven't found a safe one for him :(  Not sure he would drink one even if we did.

 

IH- Thank you. You are very kind and I appreciate someone remembering my craziness enough to know how diligent I am with my boy! lol DH and I have spoke about taking DS to Dr. Fassano in the past.  I am wondering if that is our next step.  He books 6 months out last time I called so that should give me enough time to get paperwork in order too ;) lol Now flying with him and his allergies.....that is another hurdle to consider.


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#6 IrishHeart

 
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Posted 05 May 2014 - 11:13 AM

 

 

IH- Thank you. You are very kind and I appreciate someone remembering my craziness enough to know how diligent I am with my boy! lol DH and I have spoke about taking DS to Dr. Fassano in the past.  I am wondering if that is our next step.  He books 6 months out last time I called so that should give me enough time to get paperwork in order too ;) lol Now flying with him and his allergies.....that is another hurdle to consider.

 

The last thing I would do is call you crazy, Stephanie. You're dealing with multiple issues with your boy and I am in awe of you.

Not sure where you are, but is driving out of the question?


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#7 kareng

 
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Posted 05 May 2014 - 11:22 AM

I don't know what he is eating, but can you up the calories on the foods he is being offered?  For example, don't let him fill up on strawberries until he has eaten his meat. Up the portion size of the meat, maybe give him full fat hamburger, add olive oil to cooked veggies, etc.  Give him the higher fat & calorie foods first.  Add some extra fat foods?  Give him juice or gatorade to drink instead of water?

 

Its all so counter to what we normally want to do with kids.  


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#8 cyclinglady

 
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Posted 05 May 2014 - 11:54 AM

Hashi's can be very unstable.  Over the past 20 years, I have had some stability that lasted for years and then wild fluctuations.  

 

Have you talked to family members (e.g. grandmas)?  Does he look like anyone in the family at that age regarding weight?  I say this because my cousin was like Olive Oil  (or just released from a concentration camp)  and she still is very thin and lanky!  My niece is following suit.  Another portion of us are short and tiny.  Comments from doctors are to fatten us up.  But we are just little people and the fat eventually catches up when we get to middle-age.  My ped was always after me to fatten up my daughter who was always in the 5% weight bracket but was 50% in height.  I told him that he was just used to see "big" kids and babies.  I reminded him to think about what kids looked like in India (where he was from) and he "got" it.   I just let her eat when she was hungry and by age five or six, her weight crept up to the 25% bracket and now at 13 she's at 50% (she is negative for celiac disease).  My nephew's ped insisted that his mother take him to dietitian to fatten him up.  My mother intervened insisting that her kids were tiny when they were small (think of school class line-ups and we were always in front of the line being the shrimps).    My brother was so thin that we would joke that you could see his spine from the front!  But he turned out to be normal.  

 

Just food for thought.  


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#9 StephanieL

 
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Posted 05 May 2014 - 12:31 PM

IH- driving would mean more time out of school but it isn't out of the question. We are planning a trip in Sept. and we are flying for that, I have already asked my GP for a script as I think I'll need it for the flights ;)

 

Kareng-  We insist on protein first and he's goos about that. We use hemp and coconut milks. Add EVOO to anything we can sneak it into.  Extra "butter" on his stuff too.  Tried it all I feel :(

 

CL- DH and I were both pretty pretty chunky in middle school and "average" before that.  He favors my side of the family which would be more overweight but I think the celiac disease genetics actually comes from DH's side. They are very thin people.  I just get this nagging thing that with his tTG's still being high there is SOMETHING else lurking under there with his lack of weight :(


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#10 kareng

 
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Posted 05 May 2014 - 12:40 PM

 

 

Kareng-  We insist on protein first and he's goos about that. We use hemp and coconut milks. Add EVOO to anything we can sneak it into.  Extra "butter" on his stuff too.  Tried it all I feel :(

 

 

 

I have the opposite issues - 

I have a kid that we always let him eat his fruit first so he didn't eat too much of the higher calorie stuff.  He still does that as a "mostly grownup".

 

  Is he active and happy?  I do know a couple of kids that looked like they would break, but they were always active.  Now as "mostly grownups" in college, they are still thin but no longer look like they could float away.             


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#11 StephanieL

 
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Posted 05 May 2014 - 12:58 PM

He's very active!  Soccer, baseball and running around with his little sibs ALL DAY LONG! lol  I think another issue is he seems to have urinary issues.  He can't hold his bladder to save his life!  Like a racehorse I swear.  That made me look at diabetes esp. with the other auto issues. He's checked out fine for that too though.


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#12 nvsmom

 
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Posted 05 May 2014 - 04:32 PM

Thanks all. I do appreciate you taking the time to answer me!
 
Food CC- I call manufacturers all the time and I don't think that's the issue. He's not super sensitive AFAIK but with his allergies, I don't leave things to chance. I have testing things in the past that I was suspicious of but I really don't think that's it this time.
 
Sneaking- While I can not say 100% I feel I can say with 99.999% accuracy no.  Anything with gluten most likely has dairy or egg. Either go those two, even in small amounts will send him into anaphylactic shock. I believe with that high a certainty that no, he's not sneaking because of that!
 
Thyroid-  Did yours return to normal then jump back up? His was WNL back in July of last year after being on synthroid for a while.  It's now gone back up :(
 
Supplemental drinks- Haven't found a safe one for him :(  Not sure he would drink one even if we did.
 .

I never thought about knowing if he snuck food because of his allergies.... That makes a lot of ( unfortunate ) sense. Poor kid.

My tTG IgA seems to be getting lower but the last time it was checked, when it was almost normal (20.9 when normal is less than 20) I was on some mild steroids so that may ave affected it. Prior to that I was having numbers like 29 and 35; when I was diagnosed my numbers were over 200. I haven't had it checked for about ten months now so I don't know what it's like lately.

I am sure that I am gluten-free. No doubt at all.

We use Vega One protein powder. It's vegan and as no dairy or eggs. I checked for blueberries and bananas and saw nothing, but it does have a other berries in it like acai and goji. It is nut free too - we have a nut allergy and dairy intolerance too.

I make my boys smoothies often. A typical smoothie will have 2 scoops vega powder, bananas ( my boys love'em), carrots, cucumbers, spinach, avocado, hemp seeds, apple or pears, and a combination of coconut yogurt, coconut milk (in a carton), and/or coconut cream from a can. We switch to stuff like pineapple, mangos and berries too.

Sugars are a good way to put on weight so sweet fruits, and dried fruits like raisens will probably help too.

My boys are all a skinny bunch too. I swear the widest part of of their legs are their knees. Lol. But I think slim is not necessarily a bad thing because they are active. My kids are skinny but fit - my six year od has the beginnings of a six-pack that most twenty year olds would envy. LOL Two of my kids are slim and tall and one is shorter than the others, and he has thyroid problems too that I hope will be resolved soon.

How is your son's growth curve? Is he pretty steady?


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#13 StephanieL

 
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Posted 05 May 2014 - 05:48 PM

I think the thing that is worrying me most is the elevated tTG, the peeing thing and being skin and bones.  Those three together just have me on edge really.  

 

I will look into that powder. Not sure what I could add it to. I haven't found any dried fruits that are safe for us. Esp. when so many of those companies have/process nuts.  I will keep looking thought at that as well!

 

His growth curve- he was big as a baby  through toddlerhood (80-90th percentile). He's *just* on the chart now but not sure for how long!


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#14 kareng

 
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Posted 05 May 2014 - 06:24 PM

Can you make him Popsicles with juice he can drink and the protein powder? Or mushed fruit, his milk & powder? You could look into drying your own fruit - I think a dehydrator is nice but I think some fruits can be done in the oven? I know it has been discussed a year or so ago.
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#15 dilettantesteph

 
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Posted 06 May 2014 - 05:03 AM

It does look like elevated ttg can mean other things besides gluten in the diet: http://www.curecelia...sent-in-my-diet

Do any of those things apply?


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