Country Girl

She is correct for the blood testing, but the endoscopy will still show the blunting of the villi.

We are traveling to Atlantis in May and I wondered if anyone has had any experience attempting to eat gluten free there? I got us a suite with a full kitchen so I could cook for my son. I don't want to buy food in another country though. I have called the airline and they said I could carry on food in cooler, as long as the size meets carry on standards. Does anyone know if this is really true? No liquids,just pizza, chicken nuggets, (i.e. kid food)

Thank you!

I was doing the same thing a silver slipper and making food fun made all the difference. I stopped worrying about him eating a wide variety of foods and just started letting him eat foods he likes (within reason). If he wants chicken nuggets 2 days in a row, I let him have it. I think he reached the point where he was so used to not eating that it didn't bother him and meals became a battle. Once he got used to knowing what a full belly felt like it was much easier to start introducing more balanced meals.

At our doctors recommendations we stopped snacks. That really helped. We do have an afternoon snack, but I make sure that he is served nothing besides water for 1.5 hours prior to our dinner so he will be hungry. He is now eating more calories than when he was taking a bite here and there.

I also put butter and ranch on to anything I can. We dip everything in ranch. We also use a prescription weigh gain our doctor gave us to add to his vitamin D milk.

On side note, In the nursing facility I work in we use peanut butter cups to put weight on patients. They are high in protein and fat, plus they taste good.

My son had a biopsy at 22 months. It wasn't a big deal at all. I don't see the point of blood test in a child this young, b/c they are often wrong. I also didn't want to make life long altering decisions with out sold proof. I was in the room with him through out the procedure. I held his hand while they gave him gas, then they drew blood. The endoscopy only take 5 minutes and I am glad I got to see how his insides look and to have doctor walk me through what she saw and what happens with Celiacs. He woke up in about 15 minutes, the sleepyness went away fast and he was drinking juice in less than 30 minutes from when we entered the room. The endoscopy is not only for confirming celiac disease, but for ruling out other conditions you will never see with changing external factors like food.

Goodluck, I know how scary it is. I hope you little guy starts to gain soon

Research has shown that colons do not need cleansing when they are not impacted with feece (constipation). Enemas clean out the large bowel and gluten is absorbed in the small bowel so it would have no effect to reduce the side effects of being glutened. Understanding your frustration, but this will not alleviate the issue

Dr. Elizabeth Schaeffer with St. Vincent Hospital in Indianapolis is fabulous pediatric GI doctor. She even spent an half-hour on the phone with me on a Sunday b/c I had questions

My recommendation is to not blame the entire hospital if the failure was isolated to a single nurse. Give that nurses name in the complaint or the day and shift she worked so that she can be educated. I understand your frustration, but if when there are hundreds of employees it is more likely for the hospital system to educated one or two nurses as opposed to a whole hospital.

If the problem was throughout the hospital and over repeated days, I would ask the hospital to contact you for follow so you can ask them how they are going to prevent the issue in the future. Goodluck!

I breastfeed my son who has celiac dx until he was 11 months old and I definetly think gluten passed through (Although at the time we did not know it, it is very apparent now that he has been gluten free). When he was exclusively breastfeed he had so many problems that have now gone away. For me, I enjoyed the bond of breastfeeding enough that I would have given up gluten if I would have known. The fact that you have breastfeed this long, I have now doubt that if you want to continue to breastfeed you can make the diet change successfully.

This is great link. I am a licensed health facility administrator and there are so many things going on when a patient admits that this will be helpful to nurses. When a patient is able to provide basic helpful information to staff it gets everyone off to a better start. Unfortunately, as we have all experienced, celiac disease is not a disease people are well versed in and we as family members and patients must take control.

Our dietician visit was covered completely by United Health Care, and it was very valuable. I believe someone already told you to call and ask for a medical review by a physician. I would also call a rep at the company and let them know you will be filing an appeal through your state's Insurance commisioner and the office of the inspector general (both can be done online through your states website). This phrase usually gets me what I want.

Magianos has great Italian food and the Chef is pleasant to work with. They come to your table and cook specifically for you.

Potentially the cramping could be caused by a lack of Calcium. I believe you said she is nutrionally defecit. Calcium is not only important for strong bones, but is needed for muscles to contract. A calcium defeciency can cause muscle cramping. Many celiacs' can not consume dairy and many Americans' have a Vitamin D defeciency, both needed for your body to absorbe Calcium.

When I stopped taking my calcium supplement I began to get muscle cramps.

My son is close to you daughters age and we have choose to not make our entire house gluten free (at this time...). BUT, he has his own pots/pans/toaster, pantry section, fridge/freezer sections. For us this has worked better because he is understanding from a young age that his foods are different from others. I do make a lot of gluten free foods, but when I don't his plate looks identical to ours (just made differently). I can't protect him forever, so I want him to know it is okay to eat a different food and to pick out what he wants not just what everyone is eating.

I am also very diligent about cleaning and this method does produce a lot more dishes.

Thank you for this question. We also just booked our first vacation, post dx, to Disney World and also are staying at the Port Orleans resort. We were so worried about how this would go. I called the park and customer service said it would not be a problem, at each restaurant the chef would help us. I thought that she was just appeasing me and it was too good to be true, but it sounds like they do make it work from what I am reading here. Such a relief!!

Thank you all for your responses. It makes me want to cry to think that my son was having these feelings for 2 years, but knowledge is power. I think being able to explain to our families and friends how people feel when they get glutened will make everyone around him to be more diligent and careful around him. His disposition has changed, he was very cranky all the time, but at only 2 we thought at the time that is was just "his" personality.

Thanks again

We had our son tested through a hospital and used promethesis. Insurance covered the entire cost and the negotiated rate that was paid was $385.

From a healthcare professional, know that if your insurance will not cover it and you choose to pay out of pocket you should know that everything in healthcare is negotiable. Call the lab company and try to work out a deal for a cheaper rate.

My son is 26 months old and was dx last month. He has become a completely different child since he is now on a gluten free diet and we are very strict about it. I feel a lack of control in managing this disease though, b/c he is too young to truly communicate to me how he feels. So my question to the adults is two fold:

1. Tell me how you feel when you ingest gluten, and does it matter the amount or is it the same feeling regardless of the amount?

2. If you became unable to care for yourself, what would you want your caregiver to know about celiac disease?

The picture you posted of the boy, is (or was) my son. He looked like children you see in impoverished countries. At 2 he was diagnosed with failure to thrive and malabsorption. After 1 month of being on a strict gluten free diet, he start gaining weight. His physician has put him on prescription creon to assist with the weight gain. (do not use over the counter creon as it is unregulated you do not know what you are getting).