Confused, Need Clarification On Test Results

[lisa49]

When my son was 5, he was diagnosed as sensitive to wheat milk and eggs. He had no symptoms of wheat allergy, just general food allergies. We had to take him off of wheat, milk and eggs. Wheat became difficult, so we added it back to his diet and he didn't seem to have a reaction. We kept it to a minimum, but did not cut it out.

Three years later. He breaks his arm and goes to the hospital where they find an abnormal heart rythm. My husband and I decide to cut wheat to see if it helps, but it becomes too difficult. I decide I need a definite diagnosis in order to justify the diet since I see no benifit and it's so hard. I take him to the naturapath and tell her that I want the antibody test and the genetic test for celiacs.

I just called and got the results of the antibody test and think I'm going to cry.

The woman who read the results was not very clear, but this is what I got.

Gliadin IgA positive over 1.10

Gliadin Igg positive over 1.10

Transgluten positive over 1.10

I haven't gotten the genetic results back. Is this a definite diagnosis? I know I wanted this test, but it still hasn't sunk in what this means. Is it a positive celiacs? My dr. is out until next Tuesday, so I didn't talk with her yet. What if the gene test is negative? Should we all get tested now? Ugh. Help me be ok with this or tell me there's hope and that this test doesn't really mean anything. I'm seriously holding back tears here.

[Mother of Jibril]

Welcome to the group!

Yes, your son has celiac disease. False negatives are pretty common, but false positives are not. Ttg is very specific for celiac disease. Considering that your son is having problems with his heart, it's very, VERY important that you get him on the gluten-free diet and follow it to a T. This includes not just wheat, but also barley, rye, and oats.

This forum is a great place to get some help What have been your problems in the past with the wheat-free diet?

Testing for your whole family would definitely be appropriate. Considering that celiac disease is genetic (although a lot of people go undiagnosed) a gluten-free diet might be the best thing that ever happened to your family. It would make cooking a lot easier if everyone was doing the same kind of diet.

Don't be afraid to ask lots of questions!

[climbmtwhitney]

Hi Lisa,

Yes, it sounds like your son does have Celiac. Your doctor will probably want to do a biopsy.

I'm so very sorry. It is perfectly o.k. to cry. I sure did. My 10 year old daughter and I were diagnosed Celiac in August. And, my 5 year old son is very gluten intolerant. I cried. Then cried some more. Yes, the diet is very difficult. I tossed everything in my pantry and freezer and started over. After a month or two it got SO much more doable. Then we found out that we were also casein (milk) intolerant too. Then my daughter and I were diagnosed soy intolerant. Now, looking back, removing just gluten seems rather "simple" compared to cooking/eating now. Who knew?

They have great mixes on the market for bread. We love Pamela's Wheat/Gluten Free bread mix. I make 2 loaves at a time and freeze one. Tinkyada makes great pasta in a bizillion shapes. Kinnikinnick has graham crackers that the kids love and a great pizza crust too. Envirokids makes yummy "Gorilla Munch" cereal. The list goes on. Just email me if you want more help getting started. I've mastered a homemade chocolate chip cookie, a sugar cookie and a vanilla cake too. I keep cupcakes in the freezer to send to birthday parties. The kids have a "cookie jar" in their classroom at school to they can have treats when the rest of the class is enjoying a birthday treat.

Is it more work? Absolutely. Is it difficult to dine out? Absolutely. Is it life changing? It was for us. But, you know what? It is SO VERY worth it to see my children thriving. So worth it.

So, have a good cry or two or three. Then, get started. It will get easier. If you are very positive and upbeat about it, then it will be so much easier for your little one to be as well. Good luck. You can do it!

Jill

[lisa49]

Thanks for responding. It took me forever to find this thread again! I've had 3 years of practice with gluten-free replacements and have gotten pretty good at baking and cooking. My problems are when we're out and about. Spices? Knowing the small minute, important details. We've avoided wheat for periods of time with success, but never paid attention to the details of true wheat-free living. The details are overwhelming.

Also, my son seems sicker on the wheat-free diet. I'm sure it's because we've never done it correctly. He is just so picky. He loses weight (he's skinny to begin with) and refuses to eat anything. When he does eat , he gets gassy and has stomache aches.

We're all going to go completely gluten-free and will raid the pantry/spice cabinet tomorrow. I'm just so sad about it. I'm not a very disciplined person, but I have to become a master of this way of life for my son's sake.

Luckily, I have a favorite bread recipe!

Does anyone know how to go about finding a good nutritionist? How do you even go about using a nutritionist?

[lisa49]

Hi Lisa,

Yes, it sounds like your son does have Celiac. Your doctor will probably want to do a biopsy.

I'm so very sorry. It is perfectly o.k. to cry. I sure did. My 10 year old daughter and I were diagnosed Celiac in August. And, my 5 year old son is very gluten intolerant. I cried. Then cried some more. Yes, the diet is very difficult. I tossed everything in my pantry and freezer and started over. After a month or two it got SO much more doable. Then we found out that we were also casein (milk) intolerant too. Then my daughter and I were diagnosed soy intolerant. Now, looking back, removing just gluten seems rather "simple" compared to cooking/eating now. Who knew?

They have great mixes on the market for bread. We love Pamela's Wheat/Gluten Free bread mix. I make 2 loaves at a time and freeze one. Tinkyada makes great pasta in a bizillion shapes. Kinnikinnick has graham crackers that the kids love and a great pizza crust too. Envirokids makes yummy "Gorilla Munch" cereal. The list goes on. Just email me if you want more help getting started. I've mastered a homemade chocolate chip cookie, a sugar cookie and a vanilla cake too. I keep cupcakes in the freezer to send to birthday parties. The kids have a "cookie jar" in their classroom at school to they can have treats when the rest of the class is enjoying a birthday treat.

Is it more work? Absolutely. Is it difficult to dine out? Absolutely. Is it life changing? It was for us. But, you know what? It is SO VERY worth it to see my children thriving. So worth it.

So, have a good cry or two or three. Then, get started. It will get easier. If you are very positive and upbeat about it, then it will be so much easier for your little one to be as well. Good luck. You can do it!

Jill

I would love a good vanilla cake recipe!

[climbmtwhitney]

I would love a good vanilla cake recipe!

Here goes, Lisa......

Vanilla Cake - GFCFSF

1 bag Pamela's Classic Vanilla Cake Mix

4 eggs

1 box jello instant vanilla pudding

1/4 c. canola oil

3/4 c. water

Mix all ingredients about 1 minute. Pour into a greased pan and bake* 325 for:

1 9" pan, 35 - 42 min

2 8" pans, 25 - 30 min

1 9 x 13 pan, 28 - 32 min

cupcake pan (3/4 full), 20 - 26 min

*Baking times approx.

Double recipe for 2 9" layers and you'll have a bit extra for a few cupcakes.

We love this cake! Awesome flavor. Not at all gritty. A tad dense. Delicious! No need to worry--"Regular" eaters can't tell it's gluten-free.

We usually frost it with a blended mixture of 1/2 Pamela's Vanilla frosting mix and 1/2 Pillsbury Creamy Supreme Vanilla frosting. There is minor soy (lecithin and soybean oil) in the Pillsbury frosting. Too much for me, but o.k. for my daughter. This frosting works best for the 9 x 13 variety or cupcakes. It droops a bit too much to frost a layer cake--except for the top. Yum.

Jill

[ravenwoodglass]

Also, my son seems sicker on the wheat-free diet. I'm sure it's because we've never done it correctly. He is just so picky. He loses weight (he's skinny to begin with) and refuses to eat anything. When he does eat , he gets gassy and has stomache aches.

We're all going to go completely gluten-free and will raid the pantry/spice cabinet tomorrow.

The reason he most likely was sicker was because the diet was wheat free and not gluten free. You eliminated enough gluten to make him more reactive to the smaller amounts he was getting. Once the home is gluten free and you get proficient in finding hidden gluten you will find he improves.

You have found a great place to learn the ins and outs of the gluten free lifestyle. Now is the time to test other family members before they are gluten free. Once they are gluten-free they willl show negative on the tests.