Telling Family

[wsieving]

Ok, so now that we are scheduled to see a specialist, and we are 99% sure DD has Celiac, we have started talking to our families about it. I just can't believe some of the responses I get. The biggest one I am perturbed about is my MIL who is dingy anyway (she was once watching the weather channel, the TV was showing something coming from the NW, and she said, yep, not warm, got that right! We are explaining to her what it is, and why they think she has it. She is head strong that she couldn't possibly have something like that and asks me, did you have them check her thyroid? I bet her thyroid is out of whack..... So again I re-list all of her symptoms, which mostly have nothing to do with low/high thyroid levels. She just changes the subject because she doesn't want to listen to it. I love my MIL dearly... she is the best there is. But with this, I have to wonder if I leave my child with her after we take her off of gluten, if she will gluten her because she thinks she is all knowing.

Have any of you experienced this when telling your families?

Also, we are suggesting to our brothers and sisters that it might be a good idea if one of us tests positive for celiac also that it may be a good idea for them to be tested (we see symptoms in my Dad, and in DH's sister and kids.). My brother just doesn't give a rats hiney, and most others just kind of blew us off also. I just really don't get it.

[MySuicidalTurtle]

A lot of people are "afraid" to get tested even if they are sick!

Good luck with your family and keep your daughter's health your priority.

[jcnfc]

We are having a similar problem with my MIL. She'll say "one cookie won't hurt". It's so frustuating. We went to the Children's hospital of MA website and found some literature to print out to give them which also has a section on how to tell your family about the importance of treating Celiac. We haven't done this yet but will soon especially since we use her for babysitting at times. Good luck and stay persistant.

[Amyleigh0007]

It's a huge lifestyle change and I think that's why a lot of people are afraid to get tested. It's crazy that people would choose crappy food over good health.

In dealing with your family, I look at it this way. Your daughter has a serious disease. You have to keep her safe and healthy. You are her mother. It's your job and responsibility to keep her from harm. If she is not old enough to tell people she can't have gluten then you are her voice too. If she is old enough to tell people then you must teach her what to say when people offer her gluten goodies. If your family persists I would not be around them. Period. Your daughter is worth it. When they see that you are serious hopefully they will come around. Good luck to you and your daughter!

[Fiddle-Faddle]

Ask the doctor to write a letter to your MIL about your dd's situation.

You can also try writing out a letter yourself on your home computer, printing it out, and ask your doctor to sign it.

Address it to: "relatives and caregivers of ____________ (your daughter's name)

List, as simply as possible:

the direct cause: (gluten: ANYTHING made from wheat, rye, oats, barley, and their derivitives)

the symptoms: (terrible stomach aches, diarrhea, vomiting, reflux, etc), as well as the fact that the symptoms will likely occur much later, after the child has left the caregiver's or family's home

the unseen damage: (damaged lining of small intestine; antibodies in blood that cause immune system to attack the body)

the worst risks down the road if diet not STRICTLY maintained: (CANCER, fibromyalgia, lupus, autoimmune thyroid disease, diabetes, other autoimmune disorders)

This is perhaps the only disease that can be controlled 100% by diet-- but like peanut allergy, screwing up on the diet can have devastating consequences.

Include a printout of basic symptoms of celiac from celiac.com or gfutah.com--make sure you find a page that lists how serious it can be!

Personally, I think every GI doc out there ought to have a pamphlet with this kind of info on it--we see pamphlets like this all the time for reflux, ADD, migraines, restless legs syndrome, etc, but those are all funded by the pharmaceutical industry, as they are basically advertisements for drugs, disguised to look like patient education pamphlets.

[MarsupialMama]

Well, I am used to dealing with crazy family members, so it is probably easier for me to do this, but I absolutely would NOT leave my daughters with family (or anybody else) who does not believe that there is a problem.

You may want to give it time for those who oppose to get used to the idea and be educated about it because these things are not very easy for some people to take and understand.

But I would not trust them to not give your child off-limits food. My mother - after years of me being allergic to dairy - decided to "test" (against my knowledge) to see if it really made me sick, or if I was just faking. I don't know why she would think I was faking it, since I loved dairy, cheese, yogurt, etc (just couldn't eat them). But she intentionally put milk in my mashed potatoes, and a few bites later I couldn't eat Thanksgiving dinner because of it. :-( Not to mention the bad reactions I had physically. Even today my mother has the opinion that "a little won't hurt" because that is how society teaches us, but your child's health is worth being called a "stick in the mud" or "over-protective mother".

My daughters had reactions bad enough to cause panic in our family (severe weight loss, anemia, etc) to where I would rather become fanatical over their diet and cross-contamination, then to take a laid-back attitude about it (of course I try to find the balance now) so maybe that's what sparks my motherly instincts so intensely. But I think all people, especially family, need to be respectful of your boundaries, regardless if they agree with you or not. If they cannot do this, or are unwilling, I would not be willing to put any trust in them taking care of my children to cause them more potential health problems.

[dandelionmom]

After you encourage your family to get tested there's nothing else you can do. It can be frustrating but hopefully they'll come around in time.

Our rule is anyone who doesn't take celiac disease seriously will never be alone with our child. I know that sounds harsh but we're more concerned about keeping our daughter healthy.

[wsieving]

Thank you for all of your responses. You are right, I should not leave her with anybody who cannot be trusted. I hope this doesn't become an issue, but if it does, I will just have to stick to my guns because my daughter is too important. The letter about what it can cause to happen is a fantastic idea! I had already thought of giving a list of what she cannot have, but never considered letting them know the full repercussions (they already know she gets diarrhea and rashes, but don't really understand why). Thanks for the helpful advice!