Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

Toddler, Should I Do The Endoscopy?

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?


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.



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!



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!


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.


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

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • First of all- who are these a-holes making fun of you? It's making me heated just thinking about it. Coworkers? If you don't like your job much I suggest taking a diarrhea sh*t in a bag and leaving it on their desk. Then see how hard they laugh. (sorry I have quite an interesting sense of humor/need to make people realize how not funny their jokes are). I haven't had a whole lot of people who poke fun at me, I get the annoying "oh! That must be why you are so skinny- you are SO lucky!" Even one of my very close friends says that to me sometimes- that she wishes she wouldn't absorb all the nutrients in her food so she could lose wait. I'm sorry WTF did you just say to me?! Seriously? IF you are that desperate to lose weight maybe TRY to do something about it instead of complain to me and wish you had some effed disease. Phew- tangent. Um. This might be against what others think or recommend. But I want to share so maybe you feel less overwhelmed. I didn't worry about other cross reactive foods or even think about it until later on. And with some worries about this and that (coffee mostly) I stopped thinking about it and stopped googling it. There are enough things for me to worry about just avoiding gluten. And I still drink coffee. Dairy has only recently become a (noticeable) issue after 3 years gluten free. The kissing thing- I don't worry about either. Maybe because I have been with the same guy for 11 years but we don't do a whole lot of hard make out sessions right after dinner. LOL. I don't know how sensitive you are- I don't know if you even know how sensitive you are. It takes a long time to really figure this whole thing out. And then once you get it figured out- something changes (just like parenting small children!) I think with the other foods issue, because you are feeling so depressed- I would just worry about the gluten part for now (after you get through this nightmare of eating it again). Do you have to have the diagnosis? Is it really worth it in the end? I know having the official diagnosis can make it easier to see necessary specialists and get tests done- when you stay in the hospital they try to feed you the right food. But. I don't know. Hard for me to say because my dr went about things a little differently and gave me a diagnosis just based on my symptoms being better without gluten and having a genetic test that was positive. After reading what you are going through I would bail in a heartbeat- eating that gluten for that long and still working and all that is a lot. And it will make the depression you are already going through seemingly worse. I am in no position to suggest what you should do in this instance but just a thought I wanted to share. Anywho- hang in there. Hire a hit man perhaps to take out these evil people. or leave flaming poop bags on their porch (so you can keep your job  )
    • A new understanding of CD30 expression in EATL may lead to better therapies using anti-CD30 monoclonal antibodies, like brentuximab vedotin (BV). View the full article
    • There is a low starch diet that is paleo with reduced or eliminated starch for people with ankylosing spondylitis, or any of the spondyloarthropathies. It was developed by Dr. Ebringer in London so it was at first known as the London Low Starch Diet. You can find out more information about it at a support group called Kickas dot org. I have axial spondyloarthritis and I do much better not simply gluten free, but low starch (grain free, legume free, and reduced starchy veggies and fruit). Best wishes!
    • Hello, I have a new possible Celiac diagnosis and was hoping y'all could help me! I am 25, and after going to see many different doctors with no real answers as to why I felt generally sick all the time (headaches, GI symptoms including stabbing stomach pains, weight fluctuation with no explanation, fatigue, brain fog, etc.). I went to a more homeopathic doctor a couple of months ago (still an MD) who was more receptive and ran a ton of tests. She diagnosed me with Celiac based on a blood test. I went off gluten (that was about 7 weeks ago) and while I did start to feel better (certainly less stomach pain & brain fog) I have also just felt like my body was completely knocked out of whack since then--weird issues with blood sugar where I've felt like I was going to faint sometimes, my period came two weeks early (rare for me), stomach not hurting but just acting bizarre, etc.  I went last week to a Celiac specialist. I know going off gluten before doing more testing was going to skew the results, but I couldn't get this appointment for 6 weeks after the initial diagnosis and I didn't want to wait. Plus, my sister has Celiac (diagnosed 6 years ago through blood tests--though we don't think she had the genetic test--& had an "inconclusive" biopsy--she has been generally symptom-free since going off gluten). So I went to talk the specialist and she agreed to do the blood tests again even though I'd been off gluten (personally I wanted to know if they had gone down, plus with 6 weeks of gluten I knew there was a chance they'd still be high). This doctor now says she wants me to try a gluten challenge and agree to do the tests again and the biopsy--but I am not super interested in that. It seems that she would still recommend never eating gluten again if additional tests were inconclusive, so I just don't know what the point would be. Every doctor I've been to said the endoscopy could be negative for damage and they'd still recommend not eating gluten.  I also have had some nutrient deficiencies in the past year. I became a vegetarian a year ago and three months ago a different doctor realized I had iron & B12 deficiencies (which she attributed to not eating meat though I was watching my diet very closely to make sure I was eating right... so that supported the next doctor's Celiac theory). So my iron & B12 went back up with supplements. I asked the Celiac specialist to do some other nutritional panels just to see, though, and my zinc was low (only one she did where I am not supplementing). I thought that was odd. Also, my CRP has decreased since going gluten-free which I found very encouraging (I have also been supplementing since August with turmeric, however).  Here are the relevant test results (as they appear on lab reports): Aug. 19, 2016 TTG igG - 10.2 U/ML (positive >9) High Sensitivity CRP - 5.0 MG/L (high >3.0) Oct. 18, 2016 (after about 7 weeks gluten-free) Deam Gliadin IgA Ab - 7 U (standard <20 U) Tissue Transglutaminase IgA Ab - 7 U (standard <20 U) Tissue Transglutaminase IgG Ab - 7 U (standard <20 U) C-Reactive Protein - 3 mg/L  (standard <5 mg/L) Zinc - 0.59 ug/mL (standard 0.66 - 1.10 ug/mL) Though I don't totally understand the new test results (and the doctor isn't going to discuss with me until our next follow up) my interpretation is my antibody levels are now normal, which would be consistent with going off gluten... I guess I am just generally frustrated. I would really like to "buy in" completely to the Celiac diagnosis and not have nagging doubts that there's still something else I need to be doing and I'm never going to feel better. I know going gluten-free can take more than 7 weeks to relieve symptoms, but it's hard when I still don't feel great. Also, for the record, I've had a sister with Celiac for 6 years, so I am very confident that I have actually been gluten-free for the past 7 weeks (it wasn't something totally new to me). The Celiac diagnosis FEELS more right to me than anything doctors have told me in the past, but it still feels like there's some piece missing, I guess. But maybe it just hasn't been long enough.  The Celiac specialist also started me on Xifaxin (antibiotic) for symptom management whether or not I have Celiac. Only been on it for a couple of days, though. I have also been trying digestive enzymes and have experienced some relief in the past week or so--one question I've been grappling with is whether I should eat meat for awhile--the veggie/bean heavy diet can't be easy while my stomach is supposedly healing--but I of course would rather not.  Any advice?
    • Hi, I went to a GI doctor in August 2014 because I was on NSAID medications and developed some anemia which led to a question of stomach bleeding, so he wanted to do an endoscopy on me to check my esophagus and to check for stomach bleeding.  I had NO SYMPTOMS of celiac or gluten intolerance at the time. During the endoscopy, he biopsied my small intestine because he noticed inflammation.  I already knew I had inflammation because I was being treated for RA with NSAID's which is what led me here to begin with.  After this biopsy, he called and said I should stop eating gluten right away.  He asked me to come in for blood work to confirm celiac disease and I did and he said it was confirmed.  I don't know how the blood test works or what they look for, but hearing this news was a shock since I had no symptoms. Never the less, I stopped eating gluten COMPLETELY and officially in October of 2014 (2  years ago).  It has been very difficult.  I'm extremely careful when I'm going to go out to dinner or when I buy groceries and I always either read the ingredients or, if we're going to dinner, I talk to the manager about their policy on gluten-free. My inflammation never got better after this.  At least not in my connective tissue and joints.  Since I wasn't having symptoms of celiac to begin with, nothing about my digestion changed either.  In fact, I noticed more problems after cutting wheat out. I'm thinking about slowly reintroducing wheat to check for a reaction.  Mind you it's been TWO YEARS since I ate anything with wheat, barley or rye.  I did eat something with malted barley by accident about 4 months ago and nothing happened. I'm just wondering if anyone here who was diagnosed with celiac has tried to reintroduce wheat into their diet and been successful.  Thanks for reading!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member