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Toddler, Should I Do The Endoscopy?


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29 replies to this topic

#16 rachelh4207

 
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Posted 14 March 2012 - 06:35 PM

everything went well with the procedure and we will have the results within the week. thanks so much for all the help everyone:)
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#17 Ninja

 
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Posted 16 March 2012 - 03:10 PM

I'm glad it went so smoothly. :) Fingers crossed keep us posted!
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#18 come dance with me

 
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Posted 16 March 2012 - 07:31 PM

I was of the understanding that it's pointless testing bubs 2 and under because it's so unreliable. My nephew is 10 months old now and since his mum went gluten free he became more settled and put on weight. She did the elimination diet and by that time my mum and daughter had been diagnosed with it so we thought it was worth a try. When he is older they will test him.
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Lord please give me patience, because if you give me strength, I may just beat the living crap out of someone...

#19 rachelh4207

 
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Posted 17 March 2012 - 08:22 AM

I was of the understanding that it's pointless testing bubs 2 and under because it's so unreliable. My nephew is 10 months old now and since his mum went gluten free he became more settled and put on weight. She did the elimination diet and by that time my mum and daughter had been diagnosed with it so we thought it was worth a try. When he is older they will test him.



I believe it is pointless. But after going back and forth on it for days we decided to do it- but we are still treating it like it is celiac even if it is negative. She is gluten free now and doing much better already! I would LOVE to know *forsure* so that I can know if I need to be worried about my other girls also.
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Rachel

#20 Fiddle-Faddle

 
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Posted 18 March 2012 - 09:11 AM

I would LOVE to know *forsure* so that I can know if I need to be worried about my other girls also.


I don't think any test can tell you "for sure."

Doctors don't agree on whether gluten intolerance belongs under the subheading of celiac, or vice versa. Some think they are two completely separate conditions, while others believe that gluten intolerance is simply early-stage celiac.

Genetic tests can indicate likelihod, but plenty of people without DQ2 and DQ8 alleles have either full-blown celiac or "just" gluten intolerance with symptoms at least as severe as those of someone with biopsy-diagnosed celiac.

Environmental triggers play an enormous role in triggering celiac, no matter what the genetic predisposition.

If your other daughters have the same gene pool, the same general diet, the same home, the same schools, etc. then they are facing the same environmental triggers.

It doesn't mean that they will all develop celiac.

But it means that you should be on the lookout for any symptoms that might indicate a problem with gluten. Yes, this means the obvious intestinal symptoms, but there are other symptoms as well, and for some people, the autoimmune reaction mysteriously skips the intestines, or for some, their intestinal damage is "silent," meaning that they have damage but no discernable symptoms.

Other possible symptoms of celiac:
eczema/psoriasis
thyroid issues
type 1 diabetes
joint pain
migraines/headache
vestibular issues (dizziness, tinnitus, etc)
neurological issues (including depression and bipolar disorder)
unexplained weight GAIN
carbohydrate "addiction" (particularly to wheat, obviously)
repeated candida infections
anemia
unexplained vitamin deficiencies (for example, in spite of supplements, which would indicate malabsorption)
small stature
ADD/ADHD/Asperger's/autism diagnosis
unexplained tiredness/exhaustion

I'm probably leaving a whole bunch out. I'm sure someone will fill in whatever I'm missing!
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#21 rachelh4207

 
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Posted 18 March 2012 - 06:11 PM

I don't think any test can tell you "for sure."

Doctors don't agree on whether gluten intolerance belongs under the subheading of celiac, or vice versa. Some think they are two completely separate conditions, while others believe that gluten intolerance is simply early-stage celiac.

Genetic tests can indicate likelihod, but plenty of people without DQ2 and DQ8 alleles have either full-blown celiac or "just" gluten intolerance with symptoms at least as severe as those of someone with biopsy-diagnosed celiac.

Environmental triggers play an enormous role in triggering celiac, no matter what the genetic predisposition.

If your other daughters have the same gene pool, the same general diet, the same home, the same schools, etc. then they are facing the same environmental triggers.

It doesn't mean that they will all develop celiac.


Wow what a helpful post seriously. I am So very (obviously) new to this and really appreciate the post. I am actually starting to believe Emalyn has a tolerance issue to milk and eggs now that I am more aware of the stuff. I have cut out a lot of things and let her have milk after two weeks without it and she had issues. Sometimes I get so over-whelmed at all of this. If there are any books or anything that you recommend, please share and I will get them. I know there are plenty out there, just wanted to see what you all recommended. Thanks again!
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Rachel

#22 mamaupupup

 
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Posted 18 March 2012 - 09:01 PM

Hi there!
I'm a newbie...my twin girls (fraternal--so as alike as your kiddos) will in all likelihood be confirmed celiac this week (they have high ttgs, the gene pair, plenty of symptoms--although each girl has a unique set of symptoms).
My favorite book is Celiac Disease by Green--I paid extra on Amazon to get two day shipping and read it in a weekend. My second book is gluten free kids by Korn. It's written by a mom and has lots of parent-views on the topic (like what to do when a kid "cheats" on a gluten-free diet).

Hope that helps!

Wishing you all the best!
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#23 rachelh4207

 
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Posted 19 March 2012 - 06:45 AM

Well doctor called and biopsy was negative. So that is a good thing that she doesn't have internal damage, but I still do not know what to think. I *knew* going into this that the test could be negative and mean nothing, BUT now that the tests are negative, I am thinking, "Am I imagining all this??" :(

I guess the only thing I can do is keep on the gluten free diet and then give her some in a few months, right?
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Rachel

#24 rachelh4207

 
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Posted 21 March 2012 - 11:21 AM

So we are still Gluten Free for three weeks now. She has had gluten TWICE when I was thinking about putting her back on it for the biopsy. So these are the changes (i think)
-Night sweets/nap sweets almost completely gone. They stopped within three DAYS of stopping gluten. She has sweet a little during nap but our air has been messed up and it has been around 75 in the house so I am thinking that is why.
-Walking much better on her leg and trying to run now! Seems more energized seriously.
- Sleeping better at night and when she DOES wake up, she doesn't scream bloody murder. She just comes to our bed room.
- Much friendlier and has not been so moody and so easy to "set off" I guess you could say. My other daughters use to have to walk on egg shells with her at times.
- Stool has been much firmer most all the time but not every time.
- Stomach has went down a lot BUT she did have to do a liquid diet for three days so that might have helped with that....

Okay so one other thing, when I gave her cows milk (after two weeks without it) she got a little sick and also one night after she had eggs for dinner, she screamed most of the night.


So with negative blood work (after a week of gluten free) and negative biopsy (with two weeks of gluten free) Where do I go from here? How long do I give the diet a try before doing a "test" to see if she reacts? or do I just keep gluten free and don't look back?
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Rachel

#25 mamaupupup

 
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Posted 21 March 2012 - 01:50 PM

Hi there! No, you're not imagining things--although I would be asking myself the same thing in your shoes. Also, my DH really pushed me on my observations--he was skeptical of all that I was seeing (or maybe from his point it was imagining). So, some double-checking of thinking is healthy.

I'm a newbie, so here are some of my thoughts (based on my experience with my twin 5 yr olds):
- Gluten affects the neurology of children (especially our Twin A)

- Gluten seems to affect the sleep patterns of some children, sometimes in opposite ways (Twin A sleeps like a log--possibly because her body isn't getting enough nutrients. Twin B slept through the night a total of 5, yes five nights between birth and two years old.)
-Gluten seems to affect Twin B's joints (note that I forced the pediatrician to get a rheumatology order to rule out arthritis)
- Many people say that lactose intolerance and gluten issues/celiac disease often go hand in hand (including our Pediatric GI who is a Celiac researcher)
- It's fairly well documented that tests for children at 2 yrs old are not necessarily reliable, try to get a celiac expert to see your child (Dr. Pietzak at USC/Children's Hospital LA is excellent).

- If being off gluten works for your child, that is good news!

One scary thought I'm going to put out there based on some of the reading I've done and watching a friend with cancer (who by the way survived and is thriving): night sweats were one of her symptoms. Also, limping in children should be well examined to rule out horrible things like bone cancer. I spent a lot of time trying to figure out if our Twin B had more than "growing pains" and had to really push the doctors on this.

Most importantly, you're a great Mom, on top of things, figuring out your little one's puzzle. Hang in there! It took us 2.5 years to get many of the answers we were seeking!
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#26 rachelh4207

 
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Posted 21 March 2012 - 10:58 PM

One scary thought I'm going to put out there based on some of the reading I've done and watching a friend with cancer (who by the way survived and is thriving): night sweats were one of her symptoms. Also, limping in children should be well examined to rule out horrible things like bone cancer.


The limping is due to her broken leg that isn't healing quite right. I do remember her limping a little before though and of course the pedi brushed it off as no big deal. She has just always had more trouble walking and stuff (poor balance and strength)

About the night sweats and cancer- How would I know? she has had the full CBC stuff and everything came back normal, would something have shown up if it were cancer?

Question if you don't mind my asking, what will you do from here if your daughters don't get a positive on the biopsy? Did they have positive blood work?
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Rachel

#27 TJSpin

 
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Posted 24 March 2012 - 05:29 PM

Well doctor called and biopsy was negative. So that is a good thing that she doesn't have internal damage, but I still do not know what to think. I *knew* going into this that the test could be negative and mean nothing, BUT now that the tests are negative, I am thinking, "Am I imagining all this??" :(

I guess the only thing I can do is keep on the gluten free diet and then give her some in a few months, right?


Did you see the results on paper? I would double check to see how many samples they took. They should have taken 4-6 different samples because the false negatives go way up if they take fewer.

Might want to ask. Also, I heard that the anti-gliadin (I believe it was anti-gliadin) isn't useful for kids under two. They don't produce the anti-biodies like an older child would. I listen to Dr. Thomas O'Bryan a lot and these come from his statements.

Tori
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#28 TJSpin

 
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Posted 24 March 2012 - 05:36 PM

Okay so one other thing, when I gave her cows milk (after two weeks without it) she got a little sick and also one night after she had eggs for dinner, she screamed most of the night.


This is what you stated earlier: "And she had allergy test at 1 that just showed some egg/peanut sensitivity". I would recommend completely removing any foods that she has any response to. Maybe not a dairy issue at 1 because she hadn't had any yet?? I am not sure how that works. Dairy issues, as others have said, can go hand-in-hand with gluten sensitivity. I thought I heard someone say that up to 50% of those who are gluten sensitive(or maybe it was intolerant??) also have dairy issues. Look into cross-reactive foods and you might find some useful information.

Just a thought!

Tori
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#29 mamaupupup

 
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Posted 25 March 2012 - 07:00 AM

Hi there,
I'll ask my friend about the night sweats/cancer. She was severely anemic which is how they started investigating cancer. She is amazing and has removed all sugar from her diet (cancer feeds on sugars) and is a raw-foodie. She is inspirational!

For us, yes, we have kiddos with positive bloodwork (ttgs) and lots of symptoms (no D or C) but joint pain and itching for one and irritability and belly aches for the other. On the spectrum of little kids, they are exceptionally healthy from a traditional standpoint (one has had antibiotics once, the other never...). Regardless of the biopsy outcomes, our home is now and forever gluten-free and we will pursue a gluten-free lifestyle for the kids.

Celiac Disease can develop at any age, so we believe we may have caught it on the early side (they're 5). We've decided to respect that the disease has given us signals (positive ttg and positive gene pair), so that's enough warning/confirmation signals for us! We believe that if their guts look good it's because they eat such healthy foods (tons of fruits and veggies, seaweed, all organic, no beef, healthy fish) and get great sunshine exposure since we're super outdoorsy. We would like an actual Celiac Diagnosis for school, etc.

Thinking of you!
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#30 rachelh4207

 
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Posted 07 April 2012 - 11:04 AM

Hi all, I wanted to update with my little ones progress. As you know, her biopsy and blood work were both negative for celiac, but with her age we question the accuracy of them.

So we are 5 weeks into gluten free and the results so far, are pretty amazing.

  • Her hair has grown a good 1-2 inches and before it was very very short like a boys hair cut.
  • She is sleeping pretty much all night again
  • She is walking SO MUCH better. She is actually trying to "run" the best she can with her bad leg.
  • I have not actually measured her yet, but based on her clothes, I think she has grown quite a bit! Am planning to call her doctor and find out what her last measurements were soon.
  • Her belly has went down so much. Before it was huge. Now it looks more like my other daughters stomachs did at this age.
  • Her bowel movements are more solid
  • She is less clingy to me and will actually go to sunday school again without screaming for hours. She is much easier to deal with period.

We took her to the Pediatric Orthopedic doctor last week and they diagnosed her with "cozen fracture" Her break on the tibia and fibula were so close to the growth platelet that the increased blood supply that was trying to heal the break- also caused the bone to grow. Resulting in it being uneven. Her knee buckles so much that when they do the line from her hip bone to her ankle, it doesn't even TOUCH her knee and it is suppose to go right down the center of the knee. They are giving it until the end of July to correct it's self and if it doesn't, they will have to do surgery. We are praying that it corrects its self and we can avoid that.
I also went off gluten the same time as her and got SO SO SO sick three weeks later when I tried some. Since then I have been "glutened" another time and was sick for a week! We are currently all gluten free (emayln, her three sisters, me and husband) and going to just "try" some gluten with them at the end of three weeks and see how they tolerate it (next week) and go from there as far as determining if our whole home with be gluten-free or not.

The Pediatric GI doesn't seem convinced that it could be "gluten intolerant", and just told me that I could try an elimination diet if I wanted too. I am thinking about following up with a different doctor that knows more about gluten issues and celiac.

Also, My little girl threw up this morning after having eggs for the first time in a few weeks. Pretty sure we have our answer on that. Going to start a Paleo type diet to try to find all her problem areas.
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Rachel




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