New With Some Quetions!

[ar-poe]

Hey guys! I'm new to the forum, but not to Celiac. My aunt (who I share a lot of genetic similarities with) has Celiac disease, and was misdiagnosed for about 25 years.

I've had stomach problems my entire life, which was made obvious when I was just a baby and was allergic to most baby formulas. Now that I'm older, I have many of the same symptoms as my aunt had/has. While my stomach problems aren't as bad as they used to be, they're still there, but I have all of the neurological symptoms that are associated with Celiac, as well as the ringing ears, numbness and tingling in limbs, etc. etc.

I had blood work done when I was younger to test for Celiac as well as intolerance and other allergies, but it came up negative. However, my aunt was misdiagnosed by blood work, and I've heard that the majority of the time it can only be diagnosed through a biopsy.

My physician says she doesn't feel comfortable with a biopsy. My aunt has said over and over for a couple years that the thought I should go on the Celiac diet myself, and I just never have. About a week ago, I started it, though, and have noticed an improvement in my sleeping.

Wow, guys, sorry for the mega-post. I'm just wondering if it's safe to go on the diet without a diagnosis? I'm currently on a few medications, all of which are gluten free, and I feel that as long as I maintain healthy eating habits and everything while on it, I could see some improvement on my own.

Also, I was wondering which chemicals in the ingredient label you have to watch out for that are derived from wheat? I can't seem to find a list anywhere...

Thanks for your time! I know it was a super long post!

[ravenwoodglass]

Just because you had a negative blood test when younger doesn't mean it will be negative now. If your doctor is willing you can have them write you a script for the test and pick it up and have it done.

That said you don't need a doctors permission to go gluten free and the diet is actually a healthy one. There is noting in gluten food that you can't find in other foods.

If your comfortable just letting your body give you the answer then go ahead and get started on the diet. It is good that you have checked the meds you are on. Do keep in mind that some of them may be medicating things that will resolve on the diet. I was tough to diagnose and ended up doing a physican guided elimination diet. When I did it I weaned off all of my scripts first, under doctor supervision, and never did need to add any back in. So keep your doctor up to date on your progress with the diet so the doctor can modify any script dosages if it is needed.

I hope you are feeling better soon.

If you go to the home page here you will find lists for safe and forbidden as well as other info.

Forbidden list from home page here

https://www.celiac.com/celiac-disease/forbidden-gluten-food-list-unsafe-ingredients-r182/

[sb2178]

The blood is worth repeating. The tests have changed in the last 15 years, and there are false negatives. Pursue the biopsy if you need the piece of paper to stick to the diet. You should also have nutrient levels checked-- especially B12 with your neuro symptoms! (One of the things that made me nudge until I got answers was a weirdly high loss of bone density over about 14 months.)

In terms of diet, you'll want to make sure that you get enough iron, fiber, and calcium. Keeping your dark green leafy vegetable consumption up there helps a lot with that. Whole grains can be a challenge initially (although some people prefer to go grain free), but there are good options out there!

Try:

buckwheat

quinoa

millet

brown rice

amaranth

teff

There are also some good replacement foods out there, if you want them.