Toddler Celiac Concerns

[KrisTJ]

My concerns are with my two year old daughter.  She does not present and serious symptoms of Celiac Sprue disease besides mouth sores that nobody seems to be able to identify what they are.  She has a consistent diaper rash and her stomach often looks bloated.  Constipation occurs periodically.  She is overall a pretty healthy two year old.  

I have many family members that have been diagnosed with the disease along with others that probably should be  tested and probably have it.  I believe my daughter should be tested for this.  I feel that it will prevent problems from occurring later on down the line if a blood test can be done to find out if she has it or not. However, I can not find a doctor who thinks that this is appropriate.  They tell me that if I don't have it and she does not present any symptoms then I should not worry about it.  They feel there is no need to put her through the pain of having her blood drawn.  I agree, I just feel like I am getting advice from doctors who are not fully educated on the subject matter.  They refer to it as a food allergy and suggest that I try a gluten free diet to see if I notice any changes in her.  Would it be appropriate to to have her tested even though she does not show any serious symptoms?  If a blood test is done and suggests that she does not have the disease, is it necessary to test again later on in life?  Or would this test confirm yes or no?  I understand a biopsy would need to be done if blood tests are positive. I would appreciate suggestion or "education" on this matter.

[zmombomb]

My grandson has been diagnosed with Celiac's and seems to now be growing out of it.  He's 18 months old now and since taking him off breast milk at 2 months, he's had diarrhea severely, and blisters on his butt, and his tummy was bloated like a pigmy.   He was given a coloscopy a few months ago where the doctors took 7 biopsies of his colon, and was found to be allergic to gluten, soy, and dairy proteins, as well as sucrose and fructose.  He has since eaten only home cooked meats (lunch meats have milk in them), fresh fruits and vegies, eggs, peanut butter, and rice.  His bloating went away, he's finally gaining weight, and is much happier.  Check out the gluten free diets on the net, and put your  little one on it.  Once they are on it, they wouldn't show up positive on a biopsy/colonoscopy.  The colonoscopy is truly a lot of agony for a child.  My grandson went 26 hours without food or liquids for this test and it was horrible to deal with.  All you really have to do is cut all the gluten, dairy and soy from her diet, and keep her off it for about 6 months....then gradually introduce her to a very small amount of each item, one item per week.  My grandson is now able to have 2 ounces of milk a day and is tolerating it, and last night had real pasta and was fine.  this a.m. he had a real pancake and has had no tummy trouble from it.  So, I'm assuming he's growing out of it.  If he were to have any reaction, such as diarrhea or crying from the tummy aches again, he wouldn't get them again for a couple more months.  

[aimeenky]

There is no cure for celiac disease except to maintain a gluten-free diet for LIFE.  Yes your child will feel better after 6 months, but ONLY because they are not consuming gluten. Don't let anyone EVER tell you that the celiac diet is a quick fix or something that can be used for only a short term. If you or your child are gluten intolerant you must not eat gluten for life. Celiac disease can leave individuals at risk for other autoimmune disorders, cancer and digestive stress if one does not take the diet seriously.

[finepickle]

I have read that the antigen tests are not reliable in very young children, and that is why some doctors don't do the celiac tests.  The theory I read was that the immune system is still developing and the results just don't show up like they do in adults.

Agree 100% on the not growing out of it part.  Celiac is a genetic disease and it doesn't get better over time.  The genes don't repair themselves.  If you got it, you got it.