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Member Since 07 Sep 2008
Offline Last Active Jul 12 2009 01:14 PM

Topics I've Started

Liver Damage In Children

19 April 2009 - 05:43 PM

My 3 year old son went for his 1 yr gluten free check up. At that appt, his liver was 13 cm - confirmed by ultrasound. His enzymes were 790 and 1420 (not sure which was alt/ast). We had a live biopsy done on April 3rd - biopsy shows scarring of liver not as a result of celiac disease or hepatitis. They think he has glycogen storage disease and we are going to Duke for an open liver biopsy.

Has anyone - adult or child - had this issue due to celiacs disease.

Also, my sons stomach is flat in the morning, but continues to grow and bloat during the day. Tonight his stomach just looked painful. He does very limited dairy (cheese slices or yogurt only and not every day) and limited soy. I do cook with Pamelas Mix and I use Soy milk. However today he did not have those. My son had whole grain rice pasta with gluten free chicken stock (about 1/4 cup); 8 oz bag of cool ranch doritos (snack); 1 1/2 ians chicken nugget for lunch; 8 oz bag of cool ranch doritos for snack; 1 pamelas pancake with syrup for dinner. He also had 5 Lays Pot chips with 1 slice of american cheese. My son drinks koolaide mixed with EO 28 splash or Neonate Jr. He was drinking crystal light but I though that the sweetner could becausing is bloating, but he has not had it for 3 days. My sons stomach measurement this morning was 21 1/2" and this evening is was 24 1/2".

Any ideas on the liver damage or bloating?

Cross Contamination

14 April 2009 - 06:48 AM

Ok - I have thrown away all plastic plate, bowls, colenders etc. We use china, glass, metal or cast iron now. I clean the table, counter and anything else with soap and water. Is there anything else I should be doing to prevent cc in our house. I do not bake with gluten products, but my hubby and daughter eat gluten foods. Thanks for the help!

Help! My Son Is Eating Dirt

25 March 2009 - 01:30 PM

At the end of Feb, we went for my sons 1 yr check up and found that this liver was 13 cm and that he had non fasting hypoglycemia (51mg) and liver enzymes were 700 and 1400. He grew 5 inches but only gained one pound, so he actually lost weight. He is the size of a two year old and is not on the growth chart. We started him on EO 28 Splash and he is doing ok. However, before the EO 28 and after, he is eating dirt in our backyard - by the spoonful. I know that he is malnurished, thats the reason for the EO 28 Splash. I know I read somewhere that eating dirt means you are missing some type of vitamin, but I don't remember which one. Has anyone ever had this happen to them or their kids and what vit did they need?

A little background. I just found out that gluten is passed in breastmilk - thats what happens when you live in the middle of nowhere and no one to answer questions!. So I went gluten free, since my son refuses to wean. This was done after we got the recent results back from the GI. Guess I was glutening my son and did not know it.

Thanks so much,

Flour And Bread Mix

05 March 2009 - 12:51 PM

I currently use Pamela's mix for pancakes etc and Gluten Free Pantry for bread mix. My son now needs to be dairy and sugar free and I am looking for an all purpose mix and bread mix that taste good. Do you have any suggestions on those items? Thanks for your help.

Ee And Celiacs Disease

16 February 2009 - 04:54 PM

My two year old was diagnosed with celiac disease and EE last May so I am very familiar with the GI side of celiacs disease. Over the years I have had strange things happen in which no doctor can explain and I wonder if it is related to celiacs disease and EE. I had an endoscopy done in may also which was negative for celiacs and EE, but I am DNA positive.

About 10 years ago I began to have heart palps (like a skipped beat). I had the holter monitor on and the heart dr said there was nothing wrong with my heart and that is was life style causing it. At that time I noticed that everytime I ate bread I would have palps. My family dr and heart dr both said it was not related. Shortly after the palps started, i had a hard time breathing and swallowing. It was to the point that I went to the ER twice because it felt like I could not breath. It felt like something was in my throat area right near the top of my breast bone (in the area of the thryiod). They did thryiod test and they were all negative. About a 2 weeks after the throat thing, i began to get chest pains on the right side of my chest so bad I thought I was going to die. My family dr finally put me on an antacid which helped with the chest pain. He took xrays of my throat - nothing wrong. ENT numbed by throat and shoved a tub down and and saw nothing. After about 4 weeks of thinking I was going to die my family dr put me on steriods and all my symptoms went away.

Every once in a while, I have the heart palps and I can feel that thing in my throat. It makes me want to swallow all the time to clear what ever it is away. It lasts a day or so then goes away.

I have also had issues with nausea after eating and in the morning. I figured it was hormones. The nausea comes and goes during the day, but I have never vomited from it. I was diagnosed with gastritis at my endoscopy.

Does any of this sound like celiacs disease or EE? What exactly does EE feel like, how long does it last etc? My son is only 2 so its hard to get answers from him on celiac disease and EE!!!!! Thanks for your help. Buy the way, went gluten free to see if my nausea would go away. I have been gluten-free for 3 days and feel wonderful and have lost 3 lbs!

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