Celiac's disease

marievinejackson

Any one on here suffering from celiac's?
I was diognosed a few weeks ago so need all the advise and tips I can get.

M

martybartram

The Specific Carbohydrate Diet is a lifesaver, their website has great lists of do's and don'ts particularly for shopping. We bookmarked it and were constantly checking it when we shopped. If you bake or are want to bake your own breads, Nuts.com is a great source for almond and coconut flour. A yogurt maker will be a great help as well. Good luck!

jorinya

My auntie's four grown up kids all have it. There are lots of things now you can buy that are ok for you to eat. Check out the website in the above post ^^^^

marievinejackson

Thank you! I will take a look.
Iv been kind of left to my own devices and I feel like I am winging it.
My GP has not been very helpful.

jorinya

Try going to someone who knows about your condition. Btw its a condition not disease. The oldest of my auntie's kids is going on 40 and has had kids, craved lots of things she couldn't eat during all four pregnancies and is leading a fantastic life. Surely they gave you information to read and a referral to someone who can help??

marievinejackson

I had my children years ago so not worried about that.
I have been referred but it takes time it took me 6 months to see a dietitian last year for a different reason. I'm unemployed at the moment so I don't have insurance or the cash to see a private clinic.
The information they gave me was minimal so had to rely on the internet for guidance.

jorinya

Ok here is something that worked for me when my youngest son needed a referral: I was told my my GP, who is also my old class mate (comes in handy), if you call them up and ask to put you on the cancellation list so if someone cancels you get bumped up the list into their place. Not sure if it would work for you but its worth a try. His was not the same as yours but it worked. Let me know how you get on. Feel free to add me!

marievinejackson

Thanks honey I will ask tomorrow. The sooner I get some help the better.

GinaNation

I'm glad this post is here because I've been recently diagnosed, too. Also, it is, in fact, a disease. An autoimmune disease to be precise. I think the condition you are referring to is gluten intolerance.

http://en.wikipedia.org/wiki/Coeliac_disease

marievinejackson

Hi Gina, mines definitely coeliac disease after weeks of testing they finally worked out what was wrong.
I am having vitamin shots to bring up nutrient levels, they make you feel lively for a few hours!
I can't exercise because I feel so weak (except after the shots) A hours walking nearly kills me.
I struggle with the diet, as I said before my doctor wasn't the most helpful, don't eat wheat was about the highlight of it.
Hopefully the specialist will explain more. A while ago i was in hospital and they discovered that a small section of by bowel had "died" and wasn't contracting and that's why I had stomach problems but now it's all now being linked with the coeliac and hopefully they can work out something that will allow me to get back to normal.

Apparently it's quite common in the UK but I don't know anyone with this.

Good luck and hope your not feeling to sick right now.

M

nickycat73

My husband was diagnosed 18 years ago and my oldest daughter has Celiac. Ask me anything.

marievinejackson

Thanks Nicky

BeginnersBootcamp

Feel free to add me! Celiac for years

marievinejackson

Added. Thanks honey

RunsOnEspresso

I was diagnosed in March (doctor's were all surprised I'd been running half marathons and working out as much as I did - no wonder I was always exhausted!). The good news is all fruits and veggies are safe as well as most meats and dairy products. You have to read labels and look for hidden gluten (wheat, rye and barley). If you aren't sure, don't eat it.

This is a wonderful website: http://celiac.org/celiac-disease/what-is-celiac-disease/
As is this one (and free gift basket with diagnosis): http://www.cureceliacdisease.org/living-with-celiac/guide/symptoms
This one: http://www.glutenfreeresourcedirectory.com/
This one: https://www.gluten.org/
This one: http://www.csaceliacs.org/celiac_disease_defined.jsp

These are the resources my dietician and doctor gave me. I went to Mayo Clinic which is one of the leaders in this disease. Yes, it is an autoimmune disease, not an allergy or intolerance. It was recommended that for the first year I stay away from oatmeal, even gluten free, as there is some mixed thoughts on if it is ok or not.

I would be really careful with what people tell you and use the resources above. I've had people try and tell me that Corona was gluten free. From research, it may not bother someone with a gluten intolerance but it should not be ingested by someone with celiac.

Oh, and you may need some new kitchen items. I had to toss my wooden spoons because they are more porous than plastic and even washed still made me sick. I also have to have my own toaster and waffle maker because they are difficult to clean. Let me know if you need any more help or add me as a friend. I have been dealing and researching this since January (got a probable diagnosis then) and have a friend who was diagnosed a few years ago so I learned a lot from her.

glutenfreechic

Celiac disease here too. By the time i got a nutritionist appointment months after my diagnosis (colonoscopy, gastroscopy) I'd learnt everything myself anyway by using internet and reading labels. I'd have starved otherwise! Definitely get your own toaster!

cindytw

You are better off on the internet honestly! The average dietician doesn't know much, like what you could be cross-reactive with or anything. scdlifestyle.com/?_ga=1.71158937.848389175.1430096447?_ga=1.71158937.848389175.1430096447 I found this helpful to start, then to move on from that as you tolerate it. As stated above, those links are good and I also like celiac.com/articles/181/1/Safe-Gluten-Free-Food-List-Safe-Ingredients/Page1.html

marievinejackson

Thanks everyone I will have a good look through the sites.
Thank you x

gabylewis22

I was diagnosed aged 7 (I'm now 23) - as you can imagine I was diagnosed when it was pretty rare and there was barely any choice for gluten free foods etc. I was tested again when I was 21 and they decided that I didn't have it after all. So I went back to a wheat-eating diet and the weight piled back on haha. Anyway, the point is, the selection of foods to eat is far greater now than it was 15 years ago - you shouldn't have a problem! And not eating wheat/gluten will do WONDERS for your waist line. You should try and see it as a positive as much as you can!

RunsOnEspresso

Celiac disease here too. By the time i got a nutritionist appointment months after my diagnosis (colonoscopy, gastroscopy) I'd learnt everything myself anyway by using internet and reading labels. I'd have starved otherwise! Definitely get your own toaster!

You are better off on the internet honestly! The average dietician doesn't know much, like what you could be cross-reactive with or anything

Wow, I had my endo on a Wednesday and follow up on Monday which included meeting with a dietician. And she was a dietician dedicated to gi issues/diseases. I also had the option of more appointments with her but declined because she gave me so much info and resources at the first appointment. She was very knowledgeable. Glad I went with Mayo, despite higher cost and longer drive.