Not Sure What To Doo Now!

[ericamricard]

My 4 year old daughter has been sick for five months now. She is always telling me her tummy hurts and can't go to the bathroom. She was tested for celiacs and it was neg! The doctor told me that she was a holder. But she is on meds to make her go to the bathroom and that still doesn't work! She was tested for Cystic Fibrosis and she has the gene but not the disease!! Thank goodness!! Now are 23 month old was tested for the CF gene and she has the gene but also has a low iron count. Then my doctor told me her blood work came back postive for Celiac's. The only problem with Trinity was her iron...she has no problems!! The only thing that points to Celiacs is when she poops it is grayish and oily and that she has low iron. If anyone has had their child tested for everything under the sun and still can't go to the brathroom please let me know what to have her tested for! She thinks her tummy is always going to hurt and she will not eat! I am worried this will hurt her when she starts school. As for my other daughter any help on changing to the gluten free food would be a big help!

Thanks

mom in need

Erica

[gfpaperdoll]

The daughter that is constipated needs to be on a gluten free & dairy free diet right away the same as the other daughter. Negative celiac tests mean nothing, while a positive is a positive.

You should see improvement in both girls right away.

& P.S. If I can indulge myself & say how ridiculous for an MD to say a child is "a holder", oh geez...

if you want to test the one child that tested negative for celiac, just test her thru enterolab.com

[Ridgewalker]

Hi Erica!

For your younger daughter-- I know it's bewildering to think she has to go on a gluten-free diet when she seems healthy. But unfortunately, the facts that her poop is oily and her iron is low show that she is already suffering from malabsorption. That's the beginning of a whole host of malnourishment problems. She is extremely fortunate that this was discovered so young!

For your older daughter-- I agree with gfpaperdoll, it is absolutely worthwhile to try her on a gluten-free diet and see if she improves. Frankly, with the stomach pains, constipation, and a Celiac sister, she is very high risk. Blood tests have a significant percentage of false negatives, and that percentage goes up with small children.

Advice for going gluten-free--

The diet must be extremely strict. Your daughters' foods must not even come into contact with wheat, barley, rye, or oats- or any of their derivatives.

** Do not put their gluten-free bread in your old toaster, it will contaminate the bread. Buy a new toaster that is only for gluten-free bread. I keep a pretty kitchen towel over my gluten-free toaster, which keeps stray wheat crumbs out and keeps my husband from using it accidentally.

** Wooden spoons and bowls absorb gluten. Do not use them, or buy new ones for gluten-free cooking/serving. Ditto with pizza stones and cast iron pans.

** Gluten is extremely difficult, if not impossible, to remove from collanders, scratched non-stick pans, pastry brushes. The best thing to do is buy new ones for gluten-free cooking.

All of the above sounds horridly expensive, I know. Instead of buying everything at once, I bought as much as I could each week. It took about a month to get everything replaced. Do the toaster first!

No double-dipping a knife into mayo, peanut butter, jelly, mustard, butter, etc. If you swipe a piece of wheat bread and then dip the knife back into the jar, the jar is contaminated.

More advice on cross contamination can be found on this thread: Open Original Shared Link

Some of my kids' favorite foods are:

* Van's gluten-free Waffles. Check the front of the box for "gluten-free" because Van's also does wheat waffles. (Find at Whole Foods or some grocery stores.)

* Glutino Pretzels (Whole Foods)

* UTZ brand chips (Regular store)

* Pamela's Pancake and Baking Mix. Can make pancakes, cookies, muffins, many things with this good mix. (Whole Foods)

* Mainstream cereals that are gluten-free: Fruity and Berry Pebbles, Cocoa Pebbles, Trix, and Dora the Explorer Cinnamon Stars. Also, Envirokids Gorilla Munch is very good, kind of like Kix or Captain Crunch. (Envirokids is at Whole Foods and some regular stores.)

* Tinkyada Pasta. This is the only brand of gluten-free pasta that they really love. It's hard to mess Tinkyada up. Many other brands overcook very easily, and then are horrible. Another favorite brand on this board is Biaglut, but I haven't been able to find it anywhere. (Tinkyada can be found at Whole Foods.)

* My older son really likes EnerG tapioca bread, which we order online, but a lot of other people here hate it. My favorite gluten-free bread is one that I make from scratch. The recipe is here:

Open Original Shared Link All premade gluten-free bread benefits from being toasted. Even homemade needs to be toasted after the second day.

My 4-year-old is often constipated, and is afraid to use the bathroom as well. One thing I've done to help him is sit in the bathroom with him and sing songs. We also go through the alphabet and think of words that start with each letter. Sometimes we try to think of the silliest words, or animal words, etc. If he looks like he's trying to hold it, I'll gently flex his knees upward, which causes the butt muscles to relax a little.

He has been gluten-free for almost 3 weeks now, and we are seeing lots of improvement! My older son has been gluten-free since the spring.

[ericamricard]

Thank you guys so much!! I is so hard to think my baby has Celiac's because she has been fine. Serria has been tested for celiac's an her bisopy came back neg. I have thought about just putting the whole family on a gluten-free diet just so nothing get mixed up with the sitter! She is smart and all but it would be so easy for anything to happen.I feel like after going to a GI doctor for 3 months they would have something by now...But all he says is she is a holder!!! That to me is well I can say what I want to... She trys so hard to go but she can't and she is on 8tablespoons of meds to help her!! That for a four year old is way too much!! Any info on what to do with her and make the change to gluten-free is welcomed!!

Thanks

[gfpaperdoll]

erica... what part of the country are you in? We can see if there is a support or ROCK (raising our celiac kids) group near you.

Of course I think that the easiet best thing is to take the whole house gluten-free. Those that want can eat gluten outside of the house. I think you will be amazed at how much healthier all the family becomes. Just feed them regular home cooked meals with plain meat, veggies, fruits, nuts & seeds.

for instance cook a big pot roast (just do not brown in flour or add a gravy mix) either cook with an onion, carrots, potatoes, or serve with rice veggies, and a salad etc.

check the recipe thread here for meal tips etc. anything specific you want to cook, just ask us & I am sure one of us makes it the gluten-free way. !

check in & let us know how the kids are doing...