Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Toddler, Should I Do The Endoscopy?
0

30 posts in this topic

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?

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,144
    • Total Posts
      919,570
  • Topics

  • Posts

    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,177
    • Most Online
      1,763

    Newest Member
    lolobaggins
    Joined