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So Skinny :(
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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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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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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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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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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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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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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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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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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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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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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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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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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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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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It does look like elevated ttg can mean other things besides gluten in the diet: http://www.cureceliacdisease.org/archives/faq/after-going-gluten-free-can-a-positive-ttg-mean-anything-other-than-gluten-present-in-my-diet

Do any of those things apply?

That's my concern and what I'm trying to figure out. His labs are all WNL except for the tTG's being elevated still.

 

On top of all this I crushed the kids dreams today. Through a round about discussion I informed him he will never be able to join the military (he's said forever he wanted to be an Air Force Pilot). Now I'm sure he'll change him mind a million times before he's grown but this was bad, sad and right before school. Kid was in tears as was I.  :(

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That's my concern and what I'm trying to figure out. His labs are all WNL except for the tTG's being elevated still.

 

On top of all this I crushed the kids dreams today. Through a round about discussion I informed him he will never be able to join the military (he's said forever he wanted to be an Air Force Pilot). Now I'm sure he'll change him mind a million times before he's grown but this was bad, sad and right before school. Kid was in tears as was I.   :(

 

 

Maybe not the Air Force, but there are ways he can get the "military " experience.  ROTC in high school.  Depending on your area, but there are civil air patrols - my cousin did one in high school.  They like the HS kids for search and rescue - they are spotters in the planes or helicopters.  Some fire departments have junior firefighters if you take some training.  Police departments do ride alongs.   Parks/forestry departments have stuff.  When they are 18 they can fight wildfires - my son's friends said they were no where close to the fire.  Mostly clearing brush so the fire couldn't advance & hauling water and protein bars.

 

Maybe you could look up the ROTC in the high school near you and show him that when he gets home if he is still bummed?  

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Thanks.  He's still young but those are great ideas to show him!  I just feel like such a jerk right now.  Like I said I've been so worried as is and now this :( I knew we would cross these things but...  I also know that in the next few years there is an expected shift in thinking about allergies too where they start to understand the ramification more. I just feel sunk right now :(

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Thanks.  He's still young but those are great ideas to show him!  I just feel like such a jerk right now.  Like I said I've been so worried as is and now this :( I knew we would cross these things but...  I also know that in the next few years there is an expected shift in thinking about allergies too where they start to understand the ramification more. I just feel sunk right now :(

 

You can turn this around.  Focus on being a pilot -- no problem there.  If he stays focused on the military aspect -- take him to an airfield -- just sit and watch the planes -- quiet time and perfect to explain that we don't know everything about celiac yet -- luckily he has many years to grow strong and healthy while improvements are made thru science and education.  Way too early to say he can't be in the Air Force.

 

IMHO : )

 

Hang in there Mom!

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I did tell him we have time and that perhaps things will change by the time he's old enough.  I said maybe they will change the rules or perhaps there may be medicine to help but we just don't know yet.  Always hope!  

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You can go to flight schools at 15? 16?  Its expensive - $10,000 to go all the way to a license.  I have seen a program where you can just take a few lessons and not get a license, too.  Not sure about your budget, but it might be something to save for? 

 

 

This is one near me.  For $110 you can go up and see what is involved in flying.  Of course, it could make him more interested.   :(

 

http://www.kcac.com/index.php/home/flight-academy/

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I did tell him we have time and that perhaps things will change by the time he's old enough.  I said maybe they will change the rules or perhaps there may be medicine to help but we just don't know yet.  Always hope!  

great kids need repetition -- keep on that train of thought

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On top of all this I crushed the kids dreams today. Through a round about discussion I informed him he will never be able to join the military (he's said forever he wanted to be an Air Force Pilot). Now I'm sure he'll change him mind a million times before he's grown but this was bad, sad and right before school. Kid was in tears as was I.   :(

awww  :( this made me tear up.  my son has diabetes type 1 - he was diagnosed at age 19, when he was still deciding whether he was wanting to join the military.  his sister is in the air force and he thinks it's awesome.  when he got his dx, that option came right off the table.  he is still a little wistful about it.  anyways, he got his dx, and he floundered!  he ate what he shouldn't have, his sugar was out of control and we didn't see him from day to day because he was away at school.  now that he's been home for a few years, he has taken charge of it.  he eats low carb, calculates his food intake, works out and runs everyday.   he had to figure out that he was strong enough to own it, do you know what i mean?  just like any other kid (and i know, mine is not 7) with a disability, you have to build them up.  their (and ours, too) handicap makes them more, not less :)  we have to be sharper and more clever and creative -  we have to be more educated than the average eater, therefore more knowledgeable than joe cheeseburger.  that makes us (and him) actually, forces us to treat our bodies better, which is so smart :)  

 

he is awesome!  we can do it!  different isn't less!  :D

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So true Arlene!

 

just a side note -- in case you haven't figured this out -- took me a while with my boys -- having never been a 7 year old male -- after you said "no military" he heard nothing else in the conversation -- he may have seemed engaged, but I can all but guarantee he didn't hear anything but "NO Air Force".  Thus the need for repeat conversations -- preferably during a quiet walk or other such activity away from our busy lives.

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Aw.  :( Poor guy.

 

Is there anything like a cadets program where you are? It could be a Canadian thing... Anyway, Cadets starts at age 12 up here, and one can join army, sea or air cadets.  It is very military run with learning to shoot, sail, fly and all sorts of stuff.  My 11 year old joined the junior Naval cadets (ages 9-12) and loves it. They do lots of marching, standing at attention, learning naval information, going to camps (band, shooting, general, etc), and some join extra sections like band or guard. This spring they get to learn how to sail.... for free!  An awesome experience for someone who likes the military.

 

What about being a spy?  That stuff is almost as cool.  We have one young friend who is determined to join CSIS and is teaching himself french so he will be prepared. LOL

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
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