Celiac Disease And Hereditary Hemochromatosis

[abaker521]

I was diagnosed with celiac disease last September and immediately eliminated gluten from all aspects of my life. I wouldn't even let my husband bring it in the house! I started to feel better.. but then I noticed weird symptoms began surfacing again about three months into the diet. Of course I thought it was CC or other food sensitivities so I became even stricter (stopped eating all grains and dairy). Still didn't feel any better. I had all my bloodwork retested and discovered I was vitamin D deficient so I started taking supplements everyday and didn't notice much difference there either. Aside from that the only lead I had was that I had very high ANA, macrocytosis (enlarged red blood cells, which wasn't from the obvious causes of alcohol, folate of B-12 deficiency) and I had high iron (my primary care doctor didn't even blink at that).

From February until now my hair has gotten extremely thin, my nails look totally wacky (the white part extends way down into my nail bed. They are also very brittle) my menstrual cycle isn't regular, I have constant brain fog, my skin looks orange (even though I rarely go in the sun), my joint hurts (especially in my hands and feet) and on any given day I'm an emotional mess. I had a colonoscopy and endoscopy done and my GI doctor said my villi are all healed from celiac. He also removed some benign polyps. Other than that I was fine. I went to an RA for the high ANA and he tested for every autoimmune disorder under the sun - including lupus - all came back negative. I was literally at my wits end!

My GI doctor mentioned that it was unusual that I had an elevated iron level considering I don't take supplements, I don't eat much red meat, and I menstruate. I didn't consider the high iron, because as a female you are always told you're going to be anemic and you always need iron. He ordered the test for hemochromatosis and come to find out I have the genes from BOTH parents (I'm C282Y Homozygous). Hemochromatosis matches almost all of my symptoms so I'm going to go to a hematologist soon for treatment. I REALLY hope that resolves everything.

I find it so strange that I developed celiac disease and hemachromatosis almost at the same time. Does anyone else have the same thing? I am also curious is this has caused my unexplained macrocytosis since iron plays a large roll in red blood cells. Still not sure why my ANA is so high, but hopefully that will resolve on it's own eventually. I want to he healthy again!

[GladGirl]

I was diagnosed with celiac disease last September and immediately eliminated gluten from all aspects of my life. I wouldn't even let my husband bring it in the house! I started to feel better.. but then I noticed weird symptoms began surfacing again about three months into the diet. Of course I thought it was CC or other food sensitivities so I became even stricter (stopped eating all grains and dairy). Still didn't feel any better. I had all my bloodwork retested and discovered I was vitamin D deficient so I started taking supplements everyday and didn't notice much difference there either. Aside from that the only lead I had was that I had very high ANA, macrocytosis (enlarged red blood cells, which wasn't from the obvious causes of alcohol, folate of B-12 deficiency) and I had high iron (my primary care doctor didn't even blink at that).

From February until now my hair has gotten extremely thin, my nails look totally wacky (the white part extends way down into my nail bed. They are also very brittle) my menstrual cycle isn't regular, I have constant brain fog, my skin looks orange (even though I rarely go in the sun), my joint hurts (especially in my hands and feet) and on any given day I'm an emotional mess. I had a colonoscopy and endoscopy done and my GI doctor said my villi are all healed from celiac. He also removed some benign polyps. Other than that I was fine. I went to an RA for the high ANA and he tested for every autoimmune disorder under the sun - including lupus - all came back negative. I was literally at my wits end!

My GI doctor mentioned that it was unusual that I had an elevated iron level considering I don't take supplements, I don't eat much red meat, and I menstruate. I didn't consider the high iron, because as a female you are always told you're going to be anemic and you always need iron. He ordered the test for hemochromatosis and come to find out I have the genes from BOTH parents (I'm C282Y Homozygous). Hemochromatosis matches almost all of my symptoms so I'm going to go to a hematologist soon for treatment. I REALLY hope that resolves everything.

I find it so strange that I developed celiac disease and hemachromatosis almost at the same time. Does anyone else have the same thing? I am also curious is this has caused my unexplained macrocytosis since iron plays a large roll in red blood cells. Still not sure why my ANA is so high, but hopefully that will resolve on it's own eventually. I want to he healthy again!

At the time I was sent to a hematologist, there were specific hereditary blood tests done for me. One was hemochromatosis because my ferritin level was elevated as well as my liver enzymes. However, my test for hemochromatosis was negative. The understanding I was given was the gluten was probably affecting my iron level as well. Truly hemochromatosis is manageable is my understanding by "bloodletting". The amount of blood taken at intervals would be controlled by a hematologist. The real sad truth to this presently, is they will not let you donate this blood due to high levels of ferritin! Hope you find that this process will be helpful as most who suffer from this do.