Hi everyone,
I am new to this forum and in desperate need of some advice. I was diagnosed with gluten sensitivity after having YEARS of chronic D, misdiagnosed with IBS, have been dx'd with FM, and am exhausted still after going gluten free, soy free, dairy free. I had the tests done by the enterolab. I have been looking on celiac.com for answers and have been reading the different threads but not much help on that forum in regard to what I should try next. The problem is my blood tests for thyroid, lyme, and anemia are normal, but I still am exhausted and hair is falling out, headaches, nausea, joint pain. I started another thread on the herbal supplement topic and asked about a thyroid supplement, but now I read so much about the lyme tests and I am wondering if maybe it is lyme. I had anemia in the past, but am in the normal range now. I am so frustrated I feel like I am just fading away sometimes and there will be nothing left of me soon. Every day I am losing a part of myself. Sorry for the pity party, thanks for any suggestions.
Edit: I am NOT suffering from depression, just bummed at being sick!!!!

Hi Shay,

I'm sorry to hear about your challenges. How long have you been GF, soy-free and dairy free? Sometimes it takes awhile before you feel better. I can't help you with the Lyme's disease, but I know there are tests for it.

You may consider IgG testing for food allergies. I did this a couple of months ago and found out I was reacting to soy (already suspected) and nuts and seeds, which I wasn't expecting. My reactions are delayed 24-48 hours, so I had a hard time picking it out myself.

I'm sure others will have some good suggestions, like checking your B12 levels. There's another group about Vitamins here and you can also check The Gluten File on B12 as well.

Claire

I second the suggestion to read the B12 link in the The Gluten File posted above! It has helped me so much. I was of the opinion that as long as I was eating a healthy whole foods diet, I had no need of supplements (although as a vegan, I did supplement with a very small amount of B12). I have learned that gluten sensitivity can cause your body to not properly absorb nutrients, so I began a vitamin regimen a few months ago, including a B-complex, cal/mag/D, and large doses of methylcobalamin. I *think* my fatigue is finally starting to improve (I wonder if I too need to eliminate soy). I have suffered some hair loss (noticeable only to me - at least I like to think that - LOL), but I've recently noticed new hair growth! I was gluten-free for around a year before I started the vitamins. So the two may need to go hand-in-hand.

Go with the Thryoid as a possibility and get it tested, complete panel tested.
The Diet Cure by Julia Ross has the complete list of symptoms and test required for proper dx.

I had a lot of fatigue I thought was thyroid related. It took me about 6 months after going GF (and later casein free) to get rid of it. It has been a year now and I don't have the cold intolerance any longer either.

You might need to give it more time or perhaps you still have something you're intolerant of still. If it isn't any of those, I'd look into other autoimmune diseases. They all have fatigue as a component.

Just going gluten free and cesium free is not enough. You need the right nutrition too. I know that food allergies or sensitivities can be about having low histamine levels. This is treated by nutritional supplements (orthomolecular) and may require high doses of some nutritional supplements. This is not something you should do on your own because you could cause some other deficiency to develop. Case in point, the nausea, the hair thinning, the fatigue, for example, may likely be low zinc levels. Zinc is usually not absorbed properly when there are food issues because of the damage in the colon, I think.

You could try a Zinc Status test to see if you are deficient but you should really find a doctor to help with this. If you have a zinc deficiency your body could also be storing some heavy metals like copper, definitely copper, but some other ones too. This takes a qualified professional to help with this.

But just going GFCF is not all that you can do. You can also use digestive enzymes with food and also on an empty stomach to help reduce any possible inflammation from an allergic reaction that may occur. You may also want to consider healing your gut with some glutamine perhaps. Don't neglect your digestion now that you are GFCF because you may have some problems in this area.

Your GI tract may also be damaged because of the nutrients you were not absorbing properly.

But finding a qualified doctor who can help with this may be the hardest part.