Scared, Depressed, Hopeful

[alexandra512]

Hi all! Wondering if anyone could provide some insight/similar experiences to mine

[RiceGuy]

Well, since you didn't mention going gluten-free, I'd HIGHLY recommend that you do so immediately. Also, avoid dairy at the same time, as it has proven very helpful for many on this board.

As for B12, yes, it can certainly be involved in how you feel. However, you do not need to wait until a doctor suggests taking supplements in order to try them! So I'll recommend the sublingual methylcobalamin form of B12, along with a magnesium supplement. Also, a decent B-complex would probably help too, and vitamin D3 (cholecalciferol). Take at least 3mg B12, and start with 400mg of magnesium, adjust as needed. Many here have found supplementation helps tremendously, even when tests say levels are within "normal" range.

A doctor can give or prescribe B12 shots, which can be a real boost, especially in the beginning. The only thing there is if you have to wait for tests, and they may not believe you need it. There is no known level of overdose for B12, so there's no need to wait!

There are other nutrients which you might need, but the above are the first which come to mind. Others which are commonly deficient in celiacs are calcium, zinc, and iron.

I cannot stress this enough - the above can make a huge difference!

I'm sure you'll get a number of helpful suggestions. You've come to the right place!

[ravenwoodglass]

It does sound like you belong here but before you go gluten free you should get a celiac panel done. If you are going to want a endoscopic biopsy for 'gold standard' diagnosis you will need to continue on gluten until that test is done. However diagnostic testing for celiac is far from perfect, even if the test results are negative you should still do a dietary trial. Being gluten free will negate the tests, you need to still be consuming gluten for them to even have a chance of being positive. However you do not need a doctors permission to be gluten free and if a doctor derived diagnosis is not something you feel you need then of course you could start the diet. Celiac is strongly genetic though and it is sometimes hard to get family to get tested when you are selfdiagnosed. Enterolab can test you for gluten antibodies and also do a gene panel up to a year after you have been off gluten. That may be another way to go.

[Rachel--24]

I recommend getting tested for Celiac (full panel), once testing is out of the way start the diet. If symptoms persist check into Lyme. No, you're doctor is not correct in saying this cannot be caused by Lyme.

Light sensitivity and other eye symptoms can occur with Lyme.....same with sound sensitivity.

I had severe eye symptoms (the worst pain I ever experienced) and I also thought possible MS in the beginning (had a clear MRI ).

The eye symptoms can be caused by neurotoxins. Lyme produces neurotoxins....its the toxins which cause illness.

You can check out the Lyme thread (leaky gut forum) for info. on getting properly tested/evaluated for Lyme.

[alexandra512]

Thanks to everyone sooo much for replying! I'm def. going to try going gluten-free and B12, but i think i might wait until my visit w. the new GP- not b/c i feel i need their consent, but because i want to be tested at my worst, if that makes sense!? I think i'll get a truer result. I do, however, hate the fact that I could just be making everything worse by just sitting here and let my body destroy itself.

I'll also make sure i'm tested for Lyme, I just think it's odd that I never had a rash, or remember a bite, or ever got that flu/arthritis stage. Mine would be purely neurological. Is that even possible?

Anyway, again, thanks for all of your responses!!! It feels great to get some support from people who get it!

[Rachel--24]

I'll also make sure i'm tested for Lyme, I just think it's odd that I never had a rash, or remember a bite, or ever got that flu/arthritis stage. Mine would be purely neurological. Is that even possible?

Totally possible. Actually most people with chronic Lyme do not recall having a bite, rash or flu-like symptoms. Not everyone develops a rash after being bit....its common to not experience any of these tell-tale signs and yet still be infected.