Jump to content
  • 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
      132,919
    • Most Online (within 30 mins)
      7,748

    globello
    Newest Member
    globello
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.