Possible Celiac and my experience with doctors...

Regardless of diagnosis, I would eat whichever way makes you feel good and heathy and happy.

BeckaShine wrote: »

kimdawnhayden wrote: »

Was it Elisabeth Hasselbeck who found out she had a gluten problem when she was on Survivor and ate only rice while she was there. She decided to not be tested because she felt so much better without it.

I didn't know about that. I wonder how many people are like me who feel horrible every single day but have no idea what to do. I feel like I have a new life now that I don't live in pain.

I did it for 40 long years.

BeckaShine wrote: »

I feel like I can go talk to my doc now and give me valuable information about my suspicious now and get to the specialists that can help me best figure this all out. I have an appointmet next week to get a referral for a scratch allergy test so I can find out if there are other things I should stay away from. I printed a few pages of my past food diary logs from before I went gluten free and my current logs that show what I've been eating since cutting out suspect food to show my doc along with a few questions I wrote down as well.

I am surprised that so many of you had the same type of experience as I have had talking to the doctors about my problems. I don't feel so alone in that respect anymore. I appreciate all the great advice!

Sounds like you have a solid plan, keep us updated!

My only addition to all the good advice you've gotten is to know that since celiac is an autoimmune disease, it increases the odds of other autoimmune illnesses. This matters because without an official diagnosis, many doctors won't consider that connection. They may not think you or your family has an increased risk of the other illnesses without that testing and may then not he proactive in other areas. Also, if you have a new doctor, without an official diagnosis you can end up being seen as just another person following a fad, which can lead to not being taken seriously. Just some things to consider, but as others said, it's a risk vs reward since you'll have to eat it to do damage to get a positive result.

Celiac disease has a high genetic component so there are probably other family members who can benefit from your explanation of your experience.
If you had gone to a dermatologist for a biopsy during the itching rash of "dermatitis herpetiformis" (do you have have pictures) you would have an official diagnose by now.
Other wise it is up you and doctors to decide whether or not you have an official diagnosis.
Good luck to you.

At the age of 65 I have figured out over the years a self diagnosis that fixes me is better then an 'officical' diagnosis. That is what I call eating for better health. If I can get at least as good results by changing my WOE as the doctor expects with Rx meds after an official diagnosis my brain knows to go with the former.

I think if you realized during those 28 days that the problem is gluten then I think you should just cut the gluten out. My whole life I've been suffering from stomach issues and IBS I had to take out my gallbladder when I was like 17 years old. I've been on heartburn reducing pills I would say for about 18 years or so. Finally I started getting really sick. I felt weak all the time and light headed and every time the doctor would test my blood I was anemic. There were nights when I was always itching but the thing that I sufferered from the most were these pains that felt like fibromyalgia and numbness of the hands and feet it was horrible. So I went to spine doctor thinking you know maybe it's my back and they tested me for fibromyalgia and it wasn't but apparently Celiac is very similar to fibromyalgia and the only thing that I found out from going to the spine specialist was that I was super Anemic like he wanted me to go to the hospital. So when I went to my regular doctor he found out about the new studies about celiac disease. He sent me to get tested by the way the test is like $1,500 just in case you don't have insurance and the test usually comes out inconclusive if you already took gluten out of your diet but by the time I went to the doctor I had already been eating differently. I realized that the minute I took gluten out of my body I felt so much better I no longer get the numbness on my hands I don't get those shooting pains I'm not lightheaded or weak and I'm taking lots of iron supplements. But the best part about this whole journey has been that since I stopped eating gluten in January I've lost about 20 pounds and it was really hard at first because I really love ice cream and I love pasta and I love subs and I love breaded chicken and I love all those things but you learn to start making modifications. The hardest thing seems to be eating out but even then you can always look at the menu when there's a lot of gluten free menus. If you know what your problem is or at least if you feel better from not eating gluten then I suggest you keep on with your gluten-free diet. You don't need a doctor to tell you what you have. I mean you can if you want but ...do it for yourself. I feel better and I'm never going to eat gluten again at least not intentionally because it did not make me feel good and now I feel great!

I came off wheat for a short period, I had it again and was sick it was due to my body not accepting it. Any good doctor will tell you unless you're coeliac never stop eating wheat as it's really important for our diet! I am on the FODMAP diet and I try to still have 1 piece of bread every few days to ensure I still have gluten in my body as it's so important.