8 replies to this topic

[Jen85]

So I was recently diagnosed with Celiac Disease so I had my 7 year old daughter tested due to some symptoms she has been showing. Her blood work came back normal. Her pediatrician of course said we can't be 100% sure she doesn't have this if we don't do the biopsy. She is 7 I don't want to put her thru that. The blood work was traumatic enough. Her doctor suggested we try a gluten free diet to see if any of her symptoms clear up instead. I am not stressed about it since i am gluten free. Her dad on the other hand had never had to deal with it. She spends 50% of time with me and 50% with him. So i nned to educate him on this life style. Any suggestions on some of the most important basic knowledge i should share with him? I have printed him off a bunch of paperwork but I just want to make him understand. Please Help. Thank You

[GottaSki]

I'd start with the most important information. Your daughter has symptoms that may be related to gluten ingestion. Your doctor believes this because you have Celiac Disease and there is a very strong genetic link in Celiac. I would add that many children test negative and if gluten is the cause of her symptoms, the damage will only get worse.

Besides endoscopy the only way to confirm this is to completely eliminate ALL gluten from her diet for at least three months (six would be better) to see if her symptoms improve &/or resolve.

For this test to be useful she will need to be very consistent in both homes. Then provide basic info - maybe print out the "Newbie 101" thread and tell him if he has any questions he can call you OR search for answers / ask questions here.

Having no idea what your current level of communication is with her father - I'd add: He may be resistant or wish to have the endoscopy performed - just somethings to be prepared for.

Hopefully he will see this as a necessary action to improve your daughter's health, but if he does not you may need to consider the endo to validate the need. I hope you don't, but would think it wise to prepare for all scenarios.

I hope your daughter is feeling better very soon

[1desperateladysaved]

Train your daughter what to do. Seven is old enough to be able to explain. I know, because my little ones 7 and 9 constantly help guard me from gluten. They know what I can not have and besides they read labels! If she knows what to do it will help immensly in her care.

You can give em papers. If there are some reactions he is likely to get the idea.

[Jen85]

I know he will be helpful in this situation. He knows how important it is but he also is calling me frantically with "what do i feed her" "what do i pack her for lunch" "i dont even know what to buy at the gorcery store" and i understand it is over whelming i just keep trying to give him tips on how to understand....but yes the best bet will probably just to educate my daughter. Thank you for your suggestions =)

[GottaSki]

I know he will be helpful in this situation. He knows how important it is but he also is calling me frantically with "what do i feed her" "what do i pack her for lunch" "i dont even know what to buy at the gorcery store" and i understand it is over whelming i just keep trying to give him tips on how to understand....his girlfriend just looks at me with complete confusion...but yes the best bet will probably just to educate my daughter. Thank you for your suggestions =)

Glad to read he is willing....he's got the desire, so he'll learn

[Mizzo]

Another thought to consider ;

an Endoscopy is a fairly easy procedure and performed on a out patient basis. The child is put to sleep in a mask before the IV is inserted making life tolerable or everyone. In addition if you go gluten free now and decide to retest for Celiac later you will have to go back on Gluten for 3 months making all your lives horribly upset. In addition the only way to get any action from the school system is to have and positive test result from an Endoscopy.

IMO If you can get the Dr to do one soon, that is your best long term solution.

[shadowicewolf]

endo's are very easy. A small iv, and they knock ya out.

I'm more worried about what you'll have to do while she's in school. She won't be able to play with playdough, eat the snacks that the other children have, etc.

An official dx would get her a 504 plan and the school would be required to support whatever the dx is and accomodate.

[Skysmom03]

I agree with the last two comments. Get the endoscopy. My son had one and he did very well. He even wanted to go to school when we left.
And they are also right about the school not having to accommodate. The only way to "officially" diagnose Celiac is through a endoscopy. The school will not do a 504 until they have an official diagnosis from the GI. I must also let you know that many kids with Celiac have ADHD or learning disabilities as well.... If they are accidentally glutened this may cause them to not be able to concentrate and do as well. The 504 protects them from just doing poorly on something because they felt bad because of accendental glutening. It can also speed the process if you suspect a LD since this is something that is tied to having the disease.

[GottaSki]

While I agree that an endoscopy is the best route when there are symptoms along with negative test results, I would add that it would be wise to check with your pediatrician with regard to their view on diagnosis. It is possible to be diagnosed by family history and symptom resolution after removing gluten - it is rare to find a doctor that will diagnose by these two factors, so they should be asked if they will.

This doctor did suggest the gluten trial, so ask if your daughter will be diagnosed with Celiac Disease should she have symptom resolution on diet.

As the other posters have already mentioned - you do not want to lose the ability to protect your daughter in the future.