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Toddler, Should I Do The Endoscopy?

rachelh4207

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rachelh4207 Apprentice
rachelh4207
Posted
  • Author

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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TJSpin Rookie
TJSpin
Posted

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

TJSpin Rookie
TJSpin
Posted

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

mamaupupup Contributor
mamaupupup
Posted

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!

  • 2 weeks later...
rachelh4207 Apprentice
rachelh4207
Posted
  • Author

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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