How Do You Stay Sane?

[Mummyto3]

I've just counted 6 people we have to deal with due to daughters recent celiac disease diagnosis, and I'm thinking, my God, there's a lot going on! I've been in several meetings with inclusion lady at school for months, I've got app for a dietician, got daughters gastro and the dr covering for her for a month, surgeon who'll do biopsy and a nurse in the bowel clinic we see. How do you deal with so much going on? I'm in UK so not sure if its different in the US.

[Mizzo]

The getting of the diagnosis is the hard part. We also had 2 years of pedi appt.'s because we were being treated as a diet issue. My DD is overweight and always has been in the 90th percentile with high BMI. So we were instructed to put her on low carb/high fiber and whole grains, more veggies diet ( it took me a year to get her to eat green beans without the pschyed=out vomiting) . When her stomach pains got to be near daily I demanded a GI. From there it was 2 Dr. visits, bloodwork and appt's in 3 different hospitals in a month.

Good news, Once diagnosed you start eating right and healing. There is a light at the end of the tunnel.

BTW you do the best you can , sane may not be appropriate. I went a little crazy before finally saying to the DR's your missing something get me a specialist.

Good luck!

[SilverSlipper]

I have another daughter with a significant disability and sometimes I get absolutely sick of doctors, appointments and school systems. I keep a calendar with me at all times for scheduling and a small business card book to hold business cards from all our medical people. I used to keep a small notebook with me that contained notes from appointments and school meetings. Since I felt like I was going nuts, I assigned myself one day a week to relax and I scheduled zero meetings of any sort on that day. Sometimes it helped get me through to know that I had only a few days until my next 'break'.

For meals, I sat down and wrote out 'menu' cards. At first, it was grilled meat of some sort, rice or baked potato and steamed veggie. I made sure I had enough for three meals and then I started looking around. I eventually managed to make the transition to kid foods - pizza, spaghetti, mac and cheese. Then put together some casserole combinations. I used my menu cards until my mind was programmed to think gluten free for meals. (We all eat gluten free meals and dessert).

I make a 'master list' of things I know my daughter will need for school and shop for those when I shop for school supplies. And, we started teaching her very quickly how to look after herself. We're very lucky that she was already a fruit/veggie kid so the switch to Celiac was not traumatic. She has moments of sadness a couple of times a year, especially around Christmas, that she can't eat what other kids do, but we work hard to make great substitutes.

Because of the demands of the household (we have two other kids, one who needs full time care with daily living tasks like bathing, brushing hair, etc), we have a housekeeper come in once a week to clean. Next year, I'm hoping to hire one of the paraprofessionals at the school to come in and babysit for all of them so my hubby and I can take an evening out. As invested as you are in your kids, you need to save time for yourself or you will go nuts.

All the best

[Cara in Boston]

Hang in there. The first few weeks are the most overwhelming. We had tacos for dinner about 4 nights a week because that was the only thing I could think of (duh! turns out that MOST of the meals we had been eating were close to being gluten-free anyway. Just took me a while to come to my senses.)

I found that I had all these people and appointments during the testing and initial diagnosis but after a couple of weeks, it is kind of the opposite - you are kind of left on your own to figure it all out. We don't see the MD again until the fall (6 months from final test) and we had one visit with the nutritionist. That is all.

We are doing it all again with my older son (endoscopy next week) but this time it is less overwhelming)if he is positive, I already have a gluten-free kitchen so it will be a piece of cake. (gluten-free cake)

Now, three months in it all seems normal.

Every time I think something is going to be a big deal (family party, school event with food, etc.) we just figure out a plan, talk about it in advance (my son is 6) and it always turns out fine.

You can do it.

Cara

[Mummyto3]

Thank you so much for your replies and supportive words. It just feels so overwhelming. My test is tommorrow as well as hubbys although its my family history that I think is the reason my daughter has this. Nurse said she'd ask doctor about the test and I said that I will insist on having it as I'm not risking getting osteoporosis, bowel cancer etc. I already have thyroid disease which is linked with Coeliacs Disease. I felt sorry for her in end as I was getting quite emotional about it

Just hope this biopsy comes through soon. Still no phone call although I keep chasing it up. Feels like its all on my shoulders as I have to deal with kids more as I'm at home and having all these appointments and phone calls. Its tough.

[weluvgators]

Big hugs, Mama! It IS overwhelming!! I have three little ones and all are gluten super sensitive. We came to our gluten knowledge because of our middle child, and it has been a huge learning curve for our family. At times, I have felt like I crash landed in the gluten free world. We just don't have any choice but to be super duper gluten free. It has required some very focused medical care for us, as we try and understand what is going on. And we have had to take care of several emergent problems related to gluten exposure (some of it was past gluten exposure that left permanent damage that progressed to emergent health conditions and some of it has been incidental exposures that led to medical crisis). I understand how it is to feel sorry for the whole situation. And with the state of our children's severe gluten issues, I can't help but suspect that it took TWO of us to make it so . . . but only *I* had to go so strictly gluten free due to my nursing relationship with my children. On one hand, I am incredibly grateful for this immense knowledge that my children have given me, and on the other hand I wonder why I have to know . . . as it simply changes everything. And it has been a very emotional journey for me and my family, but most particularly me. And that can be very exhausting in itself at times. And when I think back over the years and doctors that I visited for this and that with shrugs of shoulders, I can't help but wonder why no one ever said anything about celiac to me before!!! I wish you well in this new phase of your lives.

One of the most helpful things for me has been a list of "stress relieving" things that I can do rather easily. I have a list of about 15 things that bring me relief and peace (like baths, using essential oils, being outside playing with my kids, etc.). When I am feeling very overwhelmed, I go back to that list and make sure that I am doing as many of those things as I need to feel relief on a regular basis. If I need to do more of those things, then I do it.

I do keep a calendar with me to make notes of things that need to be discussed with our medical team. It has been critical for us to have timelines and notes associated with our care. We have had to see many doctors, and it simplifies communicating the progress of our condition with them when I can read my notes from my calendar. We also take a fair amount of photos to show our doctors, but we have a lot of gluten induced skin issues that are communicated well through photos.