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

So Does My Little Man Have A Diagnosis- What Now?


Merry

Recommended Posts

Merry Newbie

My son is 16 1/2 months. I was concerned about his lack of speech and eye contact and considered going on a gluten, casein free diet (for autism) which runs in my family. He is not diagnosed with anything, I was just trying to be on top of things- to see if it helped with his speech. Before starting the diet I decided to bring him in for a test for Celiac's disease. I have a couple of family members (cousin's child, great-grandmother) that have it. I knew if I started the diet before the test I could skew the results. Anyway, the doctor called me this morning and said his antibodies were high (she might have said very high- its a little bit of a blur) and she was going to refer me to a GI. She seemed a little surprised. He throws up occasionally and has 4-5 smelly BM a day but he is a chunker. He weighs 32 lbs (which is big for a 16 mo old. The nurse hasn't called me with a GI yet, but I freaked a little. I didn't really expect the diagnosis so I have been doing some quick google research. So here are my questions (sorry for the long e-mail).

(1) should I start a diet now? I feel like I am poisoning my child if I feed him gluten now but I don't want to screw up any future testing they are going to do when I am referred?

(2) can Celiac's disease explain his slow speech? He says "Uh-oh" (and nothing else), babbles, points, does not wave

(3) I raided our local version of whole foods- bought bread, and snacks- but help with chicken nuggets. Its really my son's main food and I cannot find a gluten free version. I tried making it with rice flour and it was a no go.

I would really appreciate any help.


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



Celiac.com Sponsor (A8-M):



ptkds Community Regular

First of all, you have come to the right place. This place has been wonderful to me and i have learned so much.

My 3rd dd was also diagnosed at 16 1/2 months old! But we didn't have a family history of Celiac disease that we knew of. She was having some GI symptoms. Now my 4th dd is 18 months old. She was diagnosed around 14 months old and has been gluten-free since then. She doesn't talk much either. She just started saying Mama and Dadda in the last week. She has MAYBE 5 words (bear, uh oh) I have taught her a few signs, like eat and more. She was evaluated a couple of weeks ago for a speech delay, and they said she was only 1 month behind. I was shocked, but also relieved. It is very frustrating, though.

As for the diet, that is up to you. I personally didn't put my 3rd dd through the endoscope. I felt like I was poisoning her, and I didn't want to put her through the IV sedation. It is a personaly choice. Some ppl want to have that absolute diagnoses (esp. if the family would give you a hard time w/out it).

Good luck!

ptkds

Juliet Newbie

Chicken nuggets - Whole Foods often carries two brands:Wellshire Farms & Ian's. At least by the Whole Foods near us, Wellshire Farms brand (and they're shaped liked dinosaurs) is over by the meat section. Ian's is in the freezer section right next to their non-gluten free counterparts. It's sometimes a little difficult to see the difference, although it does say "wheat free gluten free" right in front of the package (I still miss it sometimes, and I've been doing this for going on two years).

Problem with these is that they are VERY expensive. We only do this once a week at best now. But there are some pretty good recipes out there, even on this website. I use Pamela's Products Ultimate Baking & Pancake Mix as the breading mixture. I dip in a mixture of egg, milk, salt, pepper, and a little gluten free hot sauce (it doesn't make it spicy at all, just a little more flavor), then dredge in Pamela's mixed with a little salt, pepper, and Italian seasoning (McCormick is gluten free). Bake in a greased pan at 375

Merry Newbie
Chicken nuggets - Whole Foods often carries two brands:Wellshire Farms & Ian's. At least by the Whole Foods near us, Wellshire Farms brand (and they're shaped liked dinosaurs) is over by the meat section. Ian's is in the freezer section right next to their non-gluten free counterparts. It's sometimes a little difficult to see the difference, although it does say "wheat free gluten free" right in front of the package (I still miss it sometimes, and I've been doing this for going on two years).

Problem with these is that they are VERY expensive. We only do this once a week at best now. But there are some pretty good recipes out there, even on this website. I use Pamela's Products Ultimate Baking & Pancake Mix as the breading mixture. I dip in a mixture of egg, milk, salt, pepper, and a little gluten free hot sauce (it doesn't make it spicy at all, just a little more flavor), then dredge in Pamela's mixed with a little salt, pepper, and Italian seasoning (McCormick is gluten free). Bake in a greased pan at 375

Merry Newbie

Thank you for your help. The doctor made me an appointment with a GI for Monday so I think in the meantime I am going to experiment with the Chicken nugget receipes (I found out there is a whole foods a half hour away). I bet they have Pamela's (the store I went to did not) and the pre-made nuggets. I will just stock up. And after Monday I will start. I feel really bad for my little man. Snack time at daycare is going to be so tricky. Thanks again.

kbtoyssni Contributor

I crush gluten-free corn flakes and use those as a chicken nugget coating.

If you want to do an endoscopy, you do need to keep the little guy on gluten (since your appointment is Monday, this might not be so bad). If the blood test was positive, I don't think I'd do a scope unless there's something in addition to celiac a GI wants to look for. You've already got your diagnosis.

Yes, celiac can cause speech delays.

Darn210 Enthusiast

My family's preference for store-bought gluten-free chicken nuggets is Bell&Evans (black box I believe - make sure it says gluten free).

However, they prefer the homemade chicken nuggets:

I use 2/3 cup corn flour and 1/3 gluten free flour mix (whatever I currently have mixed up)

salt & pepper & onion powder to taste

beat one egg with ~ 2 Tbl of water.

Dredge chicken pieces in egg/water and coat with flour mix.

I usually make a HUGE batch. We have some for that meal and the rest go into the freezer for a quick meal later (reheat in a 350 degree oven for ~ 15 minutes)

I found my corn flour at an asian market.

My kids prefer my new recipe to the previous gluten one.

Lucky you . . . that's really quick to get in to see a GI. I would probably keep your son on gluten at least until you've talked with him/her; then make your decision on the endoscopy. In the meantime, read, read, read . . . this sight is great for doing your research.

Good Luck


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
      127,357
    • Most Online (within 30 mins)
      7,748

    Rhondaponda
    Newest Member
    Rhondaponda
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.1k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      We've got plenty Tiernan's over here across the Irish Sea! I think anything will irritate an open wound in the skin. My dermatologist suggested Aveno moisturiser and E45 Emollient shower cream when she thought it was Eczema. I'm sure they will help during a dermatitis herpetiformis outbreak, or be the least irritating. Rinsing off after exercise should give you some relief. Dapsone is an antibiotic and it does reduce the skin inflammation associated with dermatitis herpetiformis blisters as well as eliminating the itch. I don't think it affects the immune system like oral steroids though. My GP said it can affect the bone marrow ... I believe in terms of red blood cell production. It causes them to break apart prematurely. They measure the reticulocyte count (immature red blood cells) in your blood while on Dapsone to see it's effects. People with a G6PD deficiency are more susceptible to Dapsone side effects. Here's a leaflet from the British Association of Dermatologists explaining Dapsone in more detail ... https://www.skinhealthinfo.org.uk/condition/dapsone/ Your dermaotolgist would need to determine how long to be on Dapsone. I guess if the antibodies in the skin are reduced over time with a strict gluten-free diet, then the need for Dapsone is less likely when glutened. So, Knitty Kitty's advice on Niacin and all things dermatitis herpetiformis related is spot on.  Have you had the skin biopsy yet?
    • disneyfamilyfive
      Good morning, I thought I’d quickly update this post.  A week or so after my test results were posted, my doctor’s nurse called to say 2 of 3 blood tests showed elevated numbers and referred to GI for further evaluation.  It took about 3 -4 weeks to get into a GI, it was over the holidays too, so I’m sure that pushed things out a bit.  Met with the GI who was great, really listened and said that even though the main celiac test was still in normal range, there are 2 tests that are not and in his experience not all 3 tests need to be positive to take the next steps.  He said after listening to all my symptoms, and looking through my recent medical history he felt that celiac was very likely.  5 days later I was in for an endoscopy (and colonoscopy just to cover all bases at once) and 6 days later the biopsy results came back as positive for celiac sprue.  GI of course said a strict gluten free diet, referred to GI registered Dietitian and come back in one year for a repeat endoscopy to determine healing. If symptoms don’t subside (or improve) after gluten free diet for a couple then return sooner. 
    • knitty kitty
      @Matt13  I understand where you're coming from.  Seemed I was reacting to all sorts of foods there for a while, but a low histamine Paleo diet really helps.   We make histamine in our bodies as a useful  neurotransmitter (causing alertness), and also as a response in the immune system.  Histamine is made and released by Mast Cells.  Mast Cells can become hypersensitive to stimulus and release histamine easily, like having an itchy trigger finger.  Mast Cells need Thiamine Vitamin B 1 Benfotiamine in order to NOT release histamine.  Mast Cells that do not have sufficient Thiamine release histamine easily and at the slightest provocation.   Plants and other animals make histamine, too.  By removing high histamine foods from the diet, more histamine can be removed from the body.  We need Pyridoxine, Vitamin B 6, Vitamin C, Cobalamine, B12, and Thiamine B1 to make Diamine Oxidase, an enzyme that breaks down histamine.  If we don't make sufficient DAO ourselves, DAO supplements are available over-the-counter.   Removing Nightshades (tomatoes, potatoes, eggplant and peppers) was very helpful.  Nightshades contain alkaloids that cause Leaky Gut Syndrome wherein large molecules of food can pass through the walls of the intestines into the bloodstream, traveling to other organs and structures where they promote inflammation.   After a few days on the low histamine Paleo diet, the Autoimmune Protocol diet, I started feeling better.  My diet was really restricted, but I felt so much better, I stuck with it.  Eating foods that were easy to digest and low in histamine allowed time for healing.  After a few weeks, I was ready to add one food at a time (two week period) back into my diet.  I had setbacks when I ran into a food my body didn't like, and had to go back to the start, but it was worth doing.  Celiac is a marathon, not a sprint.   Blood tests are not accurate measurements for various B vitamin deficiencies.  Vitamin levels in the bloodstream are different from the amount stored inside cells inside organs where they are utilized.  You can have symptoms of a deficiency yet have "normal" blood levels.  The best way to test for a B vitamin deficiency is to take it and look for health improvement.  B vitamins are easily excreted because they are water soluble.  Malabsorption in Celiac can affect all the vitamins and minerals our bodies need, not just one.  Do talk to your doctor and nutritionist about supplementing while healing.  
    • Morgan Tiernan
      A little late to the party in terms of seeing this and responding to it, so apologies! But I wanted to responds as this sounds exactly like my experience. I had covid, followed by shingles, followed by strep… that unlucky bout of infections is what lead me here with dermatitis herpetiformis. I was also self diagnosed in the beginning and turns out I was absolutely right! Currently waiting for biopsy confirmation though. In terms of swollen lymph nodes, I get this when my rash is present. Mostly in my neck and they’re a lot more swollen if I’ve been cross-contaminated with gluten and when the rash is at its worst!   
    • knitty kitty
×
×
  • Create New...