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

Merry

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Merry Newbie
Merry
Posted

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.

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ptkds Community Regular
ptkds
Posted

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
Juliet
Posted

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
Merry
Posted
  • Author
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
Merry
Posted
  • Author

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
kbtoyssni
Posted

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
Darn210
Posted

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

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      High DGP-A with normal IGA

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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