Recently diagnosed Celiac after 30 years

I have been recently diagnosed with Ttg high at 95 and positive biopsy with marked villous blunting. I've been gluten free for 6 weeks now with no change in digestive symptoms - however, i'm now having more problems with fatigue.  The doctor found my Vit D was the lowest he has ever seen - listed as <4.  I'm assuming that is a low as it will list. That must explain the debilitating fatigue. I have concerns about cancer and refractory sprue since I have apparently had this for so long without a diagnosis.  I have peripheral nerve damage, tachycardia, orthostatic hypotension and the list just goes on and on.  My doctor is saying I need to give it 3 to 4 months to see if I improve before we look for the cause.  I'm just wondering if anyone else out there is dealing with similar issues and has any advice.  My health is just awful right now, and I'm afraid the damage will not recover.

[CalGal]

My husband must have had celiac his whole life until we figured it out when he was in his 50's. He took almost a year to start to stabilize with a GF diet and he also had to go casein-free since he cross-reacted to the protein in dairy. He's doing very well now, but still has a bit of fatigue at times.

Hand in there. Your body has been 'poisoned' by gluten for one heck of a long time. Things aren't going to change overnight, but they should start to get a lot better with time. Make sure you check and cross-check everything you put in your mouth and look for hidden sources of gluten. They're unfortunately every where and even a speck can put you down...........hard!

[cherlock12]

Thanks for the response...how does one know if they are reacting to casein - the protein in dairy products?  I can certainly identify with what your husband has been through.  I have so many health problems.  I watch everything I eat and am scheduled to see a dietitian soon and that will help too.  

[CalGal]

There is a test that can be done to check for casein cross-reactivity. Check enterolab.com for some of the details. I'm not sure what other testing facilities check for casein (IgA-based), but I'm sure there must be others. Check around and ask your doc to check.