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

8-Year Old With Celiac Disease .. No Idea Where To Go Next
0

8 posts in this topic

My 8-year-old son was diagnosed with Celiac Disease back in February 2007. The doctor ran blood tests and his nurse called to inform me that the tests came back positive. That is all they did. No further information was provided in regards to the "what next."

My sister was diagnosed a few months before my son, and when her blood tests came back positive they performed an endoscopy on her. She has been insisting that I need to get after my son's physician to get further testing, but no matter how many times I insist he ignores me.

Any suggestions???

0

Share this post


Link to post
Share on other sites


Ads by Google:

You need a new doctor.

0

Share this post


Link to post
Share on other sites

He is already diagnosed celiac by blood work so I would continue to keep him gluten free or put him gluten free if he isn't already. I agree you need a new doctor as they should have given you some direction. If he hasn't been gluten free you could always request the full celiac panel: total IgA, IgA/IgG tTG(tissue transglutaminase antibody), IgA/IgG DGP( deamidated gliadin peptide antibody) and request a scope with biopsy. They must take a minimum of 6-8, some references are now saying 8-11 biopsy samples from the small bowel. If you want to redo this have it done while he is still consuming gluten. If he is already gluten free then he would have to go back on gluten, eating appx. the equivilent of 2-3 slices of bread a day, for three months.

1

Share this post


Link to post
Share on other sites

Did you take him gluten free at that point? What doctor has he seen (for anything) since he was diagnosed?

0

Share this post


Link to post
Share on other sites

Hi Mom2CjJaedonEthan,

Have you taken him gluten free? If so, that's great! If not, the parents here are so knowledgeable and can help you through that process. Can you get a referral to a pediatric gastroenterologist?

All the best...

0

Share this post


Link to post
Share on other sites




My 8yo was diagnosed by blood test and I took her off gluten from then without anything else happening. I wouldn't agree to anything invasive for her because the end reult is the same = a gluten free diet for life.

1

Share this post


Link to post
Share on other sites

I am reading this thread and wondering if my biopsy was correct if the endo Dr. said he only took 1 sample. Is my confirmation accurate if he only took 1 sample?

One poster said you need many for an accurate diagnosis. Someone please explain.

0

Share this post


Link to post
Share on other sites

I am reading this thread and wondering if my biopsy was correct if the endo Dr. said he only took 1 sample. Is my confirmation accurate if he only took 1 sample?

One poster said you need many for an accurate diagnosis. Someone please explain.

I'd say if you only had one sample done and it showed up positive then in a weird way consider yourself lucky it showed in that sample. Doing multiple biopsies just helps get a more accurate test since damage can be patchy.

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
      104,092
    • Total Posts
      920,314
  • Topics

  • Posts

    • WOW.  That looks eerily familiar.  Last December the temporary provider here at my local (rural) clinic gave me doxycycline to experiment with, but it was a mere ten milligrams.  Lol, no wonder it didn't help!  I'm glad you're feeling better.
    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,123
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined