So my daughter finally got to see a pediatric gastroenterologist who told me what I suspected, she's down to the last two potential diagnoses: Celiac or Crohn's. At this point I am of course hoping for celiac, but I am very anxious and wondering how this will impact the whole family.
Sadly, when I told a friend she sent me wikipedia information (like I didn't know this already) and essentially blamed it on our farm. When I told my sister she went on a rant about insurance and obamacare literally yelling at me about how she felt about them. The whole time all I could think of was how self centered they both were being and what I really wanted was a sympathetic ear and maybe some concrete information about what was coming next.
How are those of you who are already living with this managing? How badly does it hit the family finances? Does it make it harder for you to work if you're managing their healthcare? Is your food bill noticeably higher or is it just more labor intensive to find what you can eat?
We're waiting results from blood work (third batch) now and the scheduling of her endoscopy and upper GI, which should be soon. What comes next?
I will look up the information you ll gave on alternative therapies. We have another week before her scope so I;ll post an update then.
These two are like apples and oranges. Celiac you just change what you eat. Chrohn s is a whole different ball game. What symptoms has she been having. How old is she.
My son and I both have celiac disease. It is not easy, but not the end of the world either.
You will have to change your way of eating and cooking - I find it easier to make the whole household gluten free.
The food is more expensive and it is more labor intensive making everything from scratch - but in the long run we both feel better.
There are lots of resources available for gluten free cooking - some of the food is even better than gluten containing food.
It is better to make the food home made versus buying the pre-made gluten free food - taste better and much less expensive.
Good Luck - I hope your daughter is feeling better soon.
The first year after my celiac diagnosis was hard. I'm not going to lie. Lots of ups and downs but 5 years later I've never felt so good and I would never consider cheating on the diet on purpose. Once you learn the ropes for the diet, if it is celiac, then it just becomes the new normal. GF is becoming more common and doing things like eating out is easier than even 5 years ago. Yes, it takes some planning - on busy weeks I use the crock pot a lot and I have a feezer full of muffins and cupcakes - but I eat healthier now than I ever did. The diet gets expensive when you start purchasing premade GF foods. Find a few good cookbooks and make your own for her and it will cost less. They have a Gluten Free for Dummies book which is a good place to start to get the basics down.
I'm not familiar with Crohns but my BIL has it and is on daily meds and no dairy. He feels a lot better on the meds even tho he hates taking them.
Either way I hope she starts feeling better soon!
I'm so sorry to hear about your daughter's diagnosis. Someone in our family had Crohn's and was on multiple daily medications. It affected everything. He was actually cured through Gonstead chiropractic help. Maybe it won't work for everyone, but is Something to consider.
Everything is hard when you first start!
We just switched to Gluten Free due to behavior issues/ADD/ADHD symptoms. I have NO regrets. Yes, our food bill is higher but it is worth it for the health and saftey of your child. There are many replacement products. Once you find the products you like/use for your family the internet is a great place. for Ceiliac, you can just do Meat, veggies, Fruit for a while until you can intergrate the breads back in.
Most of our house is gluten free, we still have some products left over. but over all I will not but it if my son can not eat it.
Good luck.
Both celiacs and chrones are symptoms- they have a root cause in high adrenal hormones. LDN/ low dose naltrexone has had a lot of good report for use, with chrones especially.
Look up' chrones and high cortisol' or 'chrones and cushings syndrome'.
It really depends how severe it is. I know two people with Chrones. One manages it well with a vegan diet and one, with a very severe case, had most of her intestine removed by age 7.
As for Celiac, i think its a huge learning curve, but you adapt to cooking wheat free and it gets easier. But you learn and adjust. I think when you are dealing with this level of food sensitivity, it is easier for the whole family to adopt the new diet.
I've had the Celiac diagnosis for 10years and it's a lot more than a diet change, because every individual's responses are different. I'm sick within 45mins of eating and continue to be sick/in pain for 3 weeks until the damage that was done starts to repair. My husband's co-worker goes into anaphylactic (sp?) shock just passing a bakery. Because of the damage and exposure to my intestines I have to have colonoscopy every 3years and a double scope every 5 years - each time they find polyps 'just in time'. Eating non-gf food (which is far more than wheat free) is more than cheating, it further damages/exposes your intestines and increases your chances of colon cancer. You also have to limit your intake of potatoes/rice/corn, as many Celiac sufferers eventually acquire allergies to those foods from being over-exposed.
As far as expense with Celiac - if you stay as whole food as possible (unlimited lean proteins, fruits, vegetables), then the expense is not much different. Once you start finding gf substitutes for all the carb/starch faves, then the money adds up quickly, as well as weight (since the gf subs have triple the carbs, triple the calories, double the fat and almost no protein). But if you go gf, there are a kazillion more options for eating out, substituting fave foods, there are blogs popping up every day with info.
If I were you, I would wait for the diagnosis, to avoid doing work/research on the wrong thing. With the accurate diagnosis, you can focus on the right info and support groups. Good luck!
