DD5 tested positive for celiac

[dsmama]

My DD age 5 has been complaining for weeks that her stomach hurt, especially right before dinner. DH and I thought she just didn't want to eat, since we have a rule that we must try everything on the plate at least once.

 

Finally, one day I called her bluff and asked if she wanted to go to the doctor. She said yes. Now, a week later, I get a call that DD's blood work showed a positive (high, actually) result for celiac disease.

 

Since my mom has celiac, I know the drill somewhat, but BOY do I feel terrible for not taking her complaints too seriously. We called a family meeting this afternoon so that we could all apologize to her and talk about what this might mean for the family (eating differently, doctor visits, etc.).

 

We follow up with a gastro next week, where I assume he'll order additional testing to confirm. I'm not having her go gluten-free yet, as that might affect future results. But if anyone has any advice, web sites, etc., please feel free to share. Thank you!

[Jean in Newcastle]

:grouphug: It might have taken you a while but you did take her to the doctor. I'm glad that they found out what the problem is. :grouphug:

[HappyCrazyMama]

:grouphug:

[JudyJudyJudy]

Personally I would put her on a gluten-free diet now and would not make her go through a biopsy. Of course, that's a decision you'll have to make for yourself, and likely the doctor will tell you that she needs to biopsy for confirmation.

[july19]

Don't be hard on yourself - we didn't take our sons complaints too serious either and he came back with a horrible lactose intolerance. I felt horrible, too. My mother told me that the most important thing was he was seen by a doctor and that we were being proactive in bettering his health - no matter how long it took :)

 

We are gluten and lactose free here. I personally love Bob's Red Mill Recipes section. Also, I'm not sure if you are familiar with Pioneer Woman and her Tasty Kitchen section, but there are tons of wonderful gluten free recipes there, too.

 

:grouphug: Hope she starts to feeling like herself again soon!

[dsmama]

Thank you all for your reassurance and suggestions!

[Soror]

We didn't do a biopsy here either but if it was paid by insurance and you can get in soon I would go ahead and keep her on the 'normal' diet and do it. Have you looked at http://www.celiac.com? It has lots of info including safe food lists. Also, they should tell you as well that a lot of times celiacs cannot digest milk either due to the damage from the gluten, so that is a consideration. That should return about the gut has healed though(hopefully). I think it is easier just to cook naturally gf but you might want to start hunting for some gf substitutes for her favorites. Celiac.com has good message boards as well.

[NicAnn]

Personally I would put her on a gluten-free diet now and would not make her go through a biopsy. Of course, that's a decision you'll have to make for yourself, and likely the doctor will tell you that she needs to biopsy for confirmation.

 

This would be my opinion too, as someone with a daughter w/ Celiacs. I would assume she has it, especially since there is a family history...then when she was older and had a better understanding of her body, she could make the decision to get a biopsy. Good luck with that hard decision, though!

 

Don't be hard on yourself! I suspected that DD had it when she was about 1 and put her on the gf diet. Then a year later I took her off because I second guessed myself. Major reaction within the week. Boy did I feel terrible!

 

I really like http://www.thespunkycoconut.com for recipes.

[prairiewindmomma]

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Edited November 10, 2021 by prairiewindmomma

[NicAnn]

I was diagnosed last week. :(

 

I am loving recipes from gluten free girl and gluten free goddess. I find them to be less expensive than those from gluten free on a shoestring, generally speaking.

 

Sorry about your diagnosis! It really gets so easy after a few months. Now I can plan a months worth of GF meals very quickly. My gf baking has gotten so good that most can't even tell it's gluten free. :tongue_smilie: Good luck on your journey!

[Carrie12345]

From what I've seen, getting diagnosed at five is FABULOUS! So many people go decades without knowing. Good job, Mom! :grouphug:

[craftyerin]

My son is gluten and casein free (not celiac, but intolerant--causes gut and behavior issues). This blog is awesome for recipes: http://www.adventuresofaglutenfreemom.com/

 

Also, make a list (and enlist the other members of your family to contribute) of things that are YES to eat. Post it in your kitchen, and keep a good supply of those foods. You'll be less overwhelmed if you think about what you CAN serve the kids for breakfast, lunch, snacks, etc. than what what you CAN'T.

[bettyandbob]

So, it sounds like your dd got the gene from you. Have you been tested. You could be silent celiac.

 

I have a good friend who was diagnosed as a child so long ago they told parents you grow out of it. She started eating wheat again as a teen and in 40s learned you don't grow out of it. When she went gf again, she said she had no idea she had felt bad all those years. Her perception of "feeling good" was completely distorted. You should consider requesting testing.

 

You should watch your other dc closely as well. My oldest went on the gf diet when my dd was diagnosed 9 years ago. Being on the diet produced significant changes behaviorally and attention wise. We had not suspected him to be celiac initially, but put the whole family gf to help dd adjust (she was 4 at the time). Oldest was later genetically tested and has both genetic markers for celiac.

[dsmama]

Thanks again for all of the support and ideas!

 

@Betty -- I have been tested and am negative. My son was also tested, since Down syndrome kids have a high instance of celiac. My oldest was adopted.

 

But given DDs diagnosis, I have a feeling that our whole family may shift somewhat, diet wise. And if we frame it as "eating healthy" with lots of fruits, quinoa, etc., I think we may all see a change!

 

Thanks to all! Keep any ideas coming.

[amo_mea_filiis.]

Just an fyi- Annie's GF mac and cheese is really good! It's made with rice pasta.

 

I recently made Bob's Red Mill GF bread, again it was really good. We had french toast the following morning.

[Soror]

We made GF Mama's pizza crust last night and it was awesome. Such a special treat for the kids, they thought it was so cool. Generally I don't buy packaged food at all but I dont usually bake gf and don't keep all the flours on hand(usually I cook with almond and coconut flour). Godfather's Pizza(if you have them) have gf pizza but they are not dairy free. We tried those a week or so ago and I thought this crust mix was incredibly better and obviously cheaper.

[greenvneck]

Way to go for trusting your dd and catching it early! My son was diagnosed when he was almost four years old, but I knew that *something* was wrong since he was an infant. Our doctor did not think that he should be put through the biopsy; his numbers were ridiculously high, and he had already been on a GF diet for three weeks at that point. He said that if we wanted to do the biopsy, he would order it, but we just couldn't subject our son to it--not because of the actual procedure, but because, for the first time in his life, he was WELL. He had energy, was starting to gain weight, wasn't throwing tantrums...it was like having a different kid.

 

Good luck on this journey, and don't beat yourself up if (when) you make mistakes.

[LaxMom]

I'm the GF one in our house, but we pretty much have moved to a completely GF household. They do eat regular bread - GF is just cost prohibitive - while I grab mine from the freezer, and there are some things that are wheat flour based that I don't normally eat anyway - pancakes - so I make them standard... At least until the 50lb sack of King Arthur Special runs out. We eat the same stuff we've always eaten, just with GF substitutions for pasta, breads, etc. Some of it is better than "regular", like Let's Do Organic ice cream cones. :)

 

I didn't have a biopsy. I have positive antibodies and feel better gluten free; that was plenty of evidence for me. Just my 2 cents.