Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Possible SCD for my 12 year old.


CrystalW

Recommended Posts

CrystalW Newbie

Hello, I was wondering if a modified SCD might be helpful for my 12 year old son.  He was diagnosed a few months ago with an allergy to wheat, rice, corn, peanuts, and tomatoes.  IKR! This diagnosis came after a year or more of his constant struggle with nausea, indigestion, rash, and gas.  On a side note--which may be of import here--he has been dealing with behavioral disorders for years.  He has a current diagnoses of OCD with generalized anxiety for which he takes medication.  As if that allergy list alone hasn't made shopping impossible, today his GI added sweet potatoes, milk, shellfish, and oats to the list after his allergy test.  So while shopping and agonizing over what I was going to put in his lunch tomorrow (the loss of cheese was a blow to him), I came home and did some research.  I think that this SCD might be a good start for him, with modification for milk and nuts of course.  Also the GI doctor never acts like any of this is a big deal; is it common for a kid to have this many allergies? Any input or suggestions would be super helpful here as we are feeling very overwhelmed. 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master
2 minutes ago, CrystalW said:

Hello, I was wondering if a modified SCD might be helpful for my 12 year old son.  He was diagnosed a few months ago with an allergy to wheat, rice, corn, peanuts, and tomatoes.  IKR! This diagnosis came after a year or more of his constant struggle with nausea, indigestion, rash, and gas.  On a side note--which may be of import here--he has been dealing with behavioral disorders for years.  He has a current diagnoses of OCD with generalized anxiety for which he takes medication.  As if that allergy list alone hasn't made shopping impossible, today his GI added sweet potatoes, milk, shellfish, and oats to the list after his allergy test.  So while shopping and agonizing over what I was going to put in his lunch tomorrow (the loss of cheese was a blow to him), I came home and did some research.  I think that this SCD might be a good start for him, with modification for milk and nuts of course.  Also the GI doctor never acts like any of this is a big deal; is it common for a kid to have this many allergies? Any input or suggestions would be super helpful here as we are feeling very overwhelmed. 

A GI doctor did food allergy tests?  Seems unusual.    The one for wheat - was that a Celiac blood test?  Food allergy testing is a bit iffy, but Celiac testing is more accurate.

CrystalW Newbie

The first test they did a few months ago was a blood test.  The test they did today was a scratch test.  Hth

kareng Grand Master
16 minutes ago, CrystalW said:

The first test they did a few months ago was a blood test.  The test they did today was a scratch test.  Hth

I actually was trying to be helpful, but never mind.  Maybe you should ask the doctor what he should eat?  Or for a referral to a registered dietitian?  Good luck.  I hope your son feels better.

CrystalW Newbie

I am sorry if I misunderstood your question, and I did assume you were trying to be helpful.  I did ask his doctor what he should eat and he basically just answered , "Not those foods," and points to the allergy list.  Btw, he doesn't have the best bedside manner, lol.  They did do a Celiac test on him and it was negative, but they said there is another kind they need to check as well? I definitely will look into the dietitian thing though. 

tessa25 Rising Star

The full celiac panel includes:

TTG IGA and IGG

DGP IGA and IGG

EMA

IGA

Most doctors only test one or two of those as a screening test. Hopefully your doc will order the tests that haven't been run yet.

 

cyclinglady Grand Master

Hi!  

I would recommmend that you get a copy (and maintain) of all your son’s medical records for a variety of reasons.  You might want to consider a second opinion from another GI or an allergist.  Your son may not have received the entire celiac panel.  I can tell you that personally, I test weird.  If my doctor just gave me the standard screening TTG, my diagnosis would never have been caught.  I would hate for your son to miss a diagnosis because of that.  The. There are seronegative celiacs (10%).  Did the GI offer an endoscopy?  Rule out other things like Crohn’s?   It would be nice to firmly rule out celiac disease before altering his diet as all celiac testing requires you to be on gluten.  

As far as the diet goes, did he test positive to an actual wheat allergy?  You might want to find a dietitian to help you.  Your son is growing and he is a kid.  A dietitian could help him with making good food choices that will not impact his growth (he also might listen to him/her over you).  They might suggest a rotational diet and provide tips on preparing meals, planning and shopping.  If that option is not available, you could trial the diet for a month (it should not cause harm).  

Keep advocating for your son.  I wish you well.  


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,977
    • Most Online (within 30 mins)
      7,748

    Redrayvyn
    Newest Member
    Redrayvyn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It sounds like your gastroenterologist is becoming increasingly confident that celiac disease is the likely diagnosis based on both your older and newer lab results. Her suggestion to call each Monday for possible cancellations is actually a great strategy—especially given how long the wait is until your August 29th appointment. It’s also a good sign that she’s advocating for you to be seen sooner, which shows she’s taking your case seriously. The fact that some labs might not have been drawn yet due to overlap with your functional health doctor’s upcoming testing adds a layer of confusion, but that’s unfortunately common when multiple providers are involved. Hopefully, the GI’s remaining labs will still get processed, or she can reorder them if needed. As for the colonoscopy prep, it’s totally understandable that you're dreading it—many people rank it among the least pleasant medical experiences. You’re definitely not alone in preferring the pill prep option over the liquid kind, especially if you don’t drink Gatorade and had a rough experience with Miralax in the past. Hopefully, your doctor will approve the pill form, especially since you’ve tolerated other options poorly before. Fortunately, the upper endoscopy doesn’t require any bowel prep—just fasting, usually starting the night before—so that part should be easier to handle. It’s great that you’re already trying to boost your gluten intake, but yes, tracking gluten content can be surprisingly tricky. You’re right that the general rule for wheat-based products is to multiply the protein content by about 0.75 to estimate the gluten content. That means foods like oyster crackers, while convenient, may not pack enough gluten to help reach the recommended daily goal of around 10 grams before biopsy. It’s helpful that you caught that early, and switching to more gluten-dense foods like regular wheat bread, pasta, or wheat cereals might make it easier to hit your target. It’s not easy eating more gluten when you’re trying to manage symptoms or just not used to it, but doing so can make a big difference in ensuring your biopsies are accurate. You’re on the right track—hopefully with a little luck, you’ll get a cancellation and be seen sooner.
    • cristiana
      Thanks for sharing that film, @trents.  I am not sure how I missed that film as I see it is a few years old, but it is very good.  I think you should be fine if you take your own packed lunch and eat it from your own lunchbox etc.  Might be worth doing a lunchtime recce to see how cramped the room is before making a decision - for all you know, there may be other people  there who don't eat gluten?
    • cameo674
      The GI doc messaged me this afternoon that she believes that the new blood work added to the old is definitely  looking like a celiac diagnosis is in my future.  She wants to me to call into scheduling each Monday to see if I can get my August 29th appointment moved up due to cancellations.  I have never had a doctor recommend that.  She also said there were additional labs that she requested still out that have not come back yet; so, they may have been missed drawing those since the functional health doctor has a whole slew of labs that I am suppose to be waiting until August 27th to do. I am still waiting to hear on whether or not she will allow me to do pill prep versus the typical gatorade prep that I did 8 years ago for that colonoscopy.  I do not drink gatorade to begin with and that miralax prep kept me in the bathroom up until we drove to the procedure.  My younger brother said the pill form was fairly easy when the liquid form is hard to swallow. Colonoscopy prep is definitely close to number one on the list of things I never want to experience again if I could avoid it.  Number one is a different medication that caused severe cramping that had me in tears until it wore off.  Never having had an endoscopy, I have no idea of what that prep is like, but it cannot be worse right? I started munching on oyster crackers last night.  It is shocking how filling they are.  I just read that I need to pay attention to the protein content of the wheat bread product or I will miss the gluten goal of 10 g per day prior to testing.  The post said that I should look at the protein and multiple that number by .75 if it is a wheat flour product to see how much gluten is in it.  No more oyster crackers for me.  I would have to eat 10 oz bag everyday to meet my goal.  not going to happen.
    • Alibu
      Well, I've made if from the pre-diagnosis forum to here!  I've been diagnosed with "latent" or "potential" celiac and my doctor has suggested me to go gluten-free before my appointment with him in October (first available, LOL).  My ttg-iga was 152, my EMA was positive, I have the gene, but my biopsy was negative (and he took 12 samples), so it makes sense to go gluten free to see if I improve. I know the basics - I can find lists of things to avoid, I know about hidden dangers, etc. all of that.  Where I'm struggling is just STARTING.  I need to go shopping and stock up on some staples.  My goal is to not try to find gluten-free alternatives, but to focus on naturally gluten-free foods like proteins, veggies, fruits, and carbs like potatoes and rice.  However, the rest of the household will not be gluten-free, which is fine, I don't want them to for various reasons.  But I have SO much food in my house in the pantry and fridge and cabinets, and it feels like I need to get rid of a lot in order for me to start fresh, but at the same time, I can't get rid of everything. I guess it's just feeling overwhelming and I've never given up gluten before so this is going to be a huge shift for me and I feel like I need SPACE, but I can't quite have that. Any advice on just getting started and organizing myself would be great!  
    • Scott Adams
      It’s great that you were finally able to see a gastroenterologist—and even luckier to get in the same day as your referral! It sounds like your GI is taking a very thorough approach, which is reassuring given your complex symptoms and history. The confusion around your different tissue transglutaminase (tTG) antibody results is understandable. The variation between your December and June labs may be due to multiple factors, including differences in the lab performing the test (Quest vs. Mayo Clinic), the specific assay used, and the amount of gluten you had been consuming before each test. Antibody levels can drop significantly when gluten is reduced or eliminated from the diet, even partially, which might explain why your recent tTG IgA was now negative and your tTG IgG was borderline high. That’s likely why your GI mentioned it was “usually the reverse”—typically, tTG IgA is more commonly elevated in confirmed celiac, not IgG alone, especially when IgA levels are sufficient, as yours are. Your gene testing confirms that you carry HLA types (DQ2.2 most likely) that are permissive for celiac disease, meaning you can develop it, but not everyone with these genes will. These genes don’t explain why your symptoms are milder or different from others with celiac—many people have so-called "silent" or atypical presentations like yours, with issues like long-term heartburn, loose stools, nutrient intolerances, or just gradually adapting to symptoms over time. It’s not uncommon to assume these symptoms are just aging, medication side effects, or lifestyle-related until someone finally connects the dots. It’s a good thing your daughter advocated for you to be tested—many cases are missed for years because they don’t follow the “textbook” presentation. As for the immunoglobulin tests, your doctor likely ordered those to ensure your immune system is functioning normally, particularly your IgA level, since a deficiency can cause false-negative celiac blood tests. Since your IgA level is normal, your tTG IgA test should be reliable (assuming adequate gluten intake), but again, if you weren't eating enough gluten, that could explain the lower antibody levels now. The comprehensive metabolic panel and negative stool parasite results are additional pieces ruling out other causes of your symptoms, like infections or organ dysfunction. The upcoming endoscopy and colonoscopy should provide more definitive answers, especially with biopsies looking for celiac disease, eosinophilic esophagitis, and microscopic colitis. It’s completely valid to feel unsure about what you’re experiencing, especially when your symptoms have been lifelong or gradually worsening without being severe. You’re not alone—many adults with celiac or gluten-related disorders report subtle or chronic symptoms they’ve normalized. You’re doing the right thing by staying on gluten now through your procedure date in August. Try not to stress about reaching the full 6-slice equivalent each day, but do increase your gluten intake as much as tolerable (e.g., a couple of pieces of bread, pasta, crackers, etc.) to give the biopsy the best chance of detecting any damage. Good luck with your upcoming procedures—you’re closer than ever to answers and a clearer direction forward.
×
×
  • Create New...