In The Process Of Diagnosis...high Iron?
Posted 28 May 2012 - 12:55 AM
So in the meanwhile, I got a call back from my regular doctor. They had decided to do a full iron panel because a prior blood test showed that I was anemic. They call me and tell me that my folic acid, ferrin, and something else was extremely high and to stop taking all iron vitamins/supplements. I also have to come back in to visit them about this. Funny thing...I'm not taking any supplements. I do every once in awhile, but it's only when I remember, which is seldom. I thought maybe it's my cereal? (It's usually fortified). Nope, 10% Iron. So I'm not sure what that is all about. And what confuses me is that if the other doctor thinks that I could have celiac disease, how do I have HIGH iron.
I read somewhere about a genetic connection between celiac disease and something called Hemochromotosis (Iron Overload). Does anyone know anything about this?
And just for the complete picture, here are my other symptoms:
Tourettes Syndrome, anxiety, Panic Disorder, Depression, Gastritis, chronic loose stools, anemia(???), fatigue, muscle aches, joint pain, vertigo, LOTS of canker sores, obesity, itchy patches on my skin that take over a month to go away, probably more...I'm a mess.
Thanks for any input!
Posted 28 May 2012 - 12:35 PM
Posted 28 May 2012 - 12:41 PM
pubmed celiac hemochromotosis
pulls up a LOT of references.
Hemochromatosis and Celiac Disease
Many patients with celiac disease have iron deficiency anemia, a condition characterized by the body's inability to absorb iron. At the opposite end of the spectrum is a condition known as hemochromatosis, a genetic condition that causes your body to absorb too much iron. While it's uncommon, two case history reports, published in the April 1993 issue of the "Journal of the Florida Medical Association" and in the February 2004 issue of the "European Journal of Gastroenterology and Hepatology," suggest that hemochromatosis may also be present in a small number of patients with celiac disease.
Here is a more recent cite on pubmed from 2004, the 2 patients with both diseases
What is really interesting is that it (hemochromatosis) might be a mutation to protect against anemia caused by celiac (or other diseases/conditions).
a 2002 paper in Gastroenterology by JR Butterworth, Cooper, Rosenberg,Purkiss, Jobson, Hathaway, Briggs, Howell,, Wood, Adams, Iqbal
The Role of hemochromatosis .... in celiac disease
In celiac disease, HFE gene mutations are common and are in linkage disequilibrium with different HLA alleles compared with controls. A disease-specific haplotype that carries C282Y and DQB1*02 is suggested. We propose that HFE gene mutations provide a survival advantage by ameliorating the iron deficiency seen in celiac patients.
A thread here on this site, with this subject
Yes, it is possible to have both conditions, although rare.
Posted 01 June 2012 - 06:18 AM
I did speak with the doctor that did the Endo, and he was able to pull up the test results. He said that I also had high folate, which is odd. I couldn't find any relation.
I'm STILL waiting on biopsy results. We're stationed in Turkey right now, so things don't exactly move quickly here. I do know that they are going to run another blood panel to make sure the first wasn't a lab error. So we'll see. It's just driving me nuts not knowing. I really want to just try going gluten free, but if they decided to run blood tests, wouldn't that throw things off?
Posted 01 June 2012 - 11:09 AM
No reason to make you wait on the second blood test for celiac.
Not unusual to have either a positive blood test result on one or more of the celiac blood panel tests, then yet a negative biopsy, and vice versa. (Just preparing you for the possibility that your biopsy will be "negative," while you still are sick.) The damage is patchy, and they have to take a sample from an area with damage. You may hit a snag with the specialist doctor then saying you cannot be celiac because you had a negative biopsy, so he/she won't do a full celiac blood panel test. Or he/she could be more proactive, and try again.
You can also have non-celiac gluten intolerance, which is a definite reaction to gluten, but it won't show up in the standard testing (at this time.)
If the rash is bad, you can get the skin next to a fresh outbreak biopsied, and a positive on that for DH is considered a positive test for celiac.
Posted 04 June 2012 - 05:44 PM
Some of my symptoms include: bronzed/orange skin, irregular menstrual cycles, thinning hair, brain fog, metallic taste in mouth, joint pain, loose stools, depression and fatigue.
I am not thrilled that I have to get blood drawn.. but if it means I'll feel better then I'll try anything!
Posted 05 June 2012 - 01:51 AM
So many on HH forums have to go gluten-free because it causes gluten intolerance anyway.
Here is lots of info on HH, and you can be anemic and have hemochromatosis.
The joint pains tend not to go away.
and go and read the forum there.
HH is not so uncommon!
And so avoidable, with blood draws before there is significant damage
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)
Posted 13 June 2012 - 05:12 AM
I also had a follow up with my other doctor about my iron panel, which he had me go get blood drawn for again incase of a lab error.
It showed a slightly elevated Folate level, but it was the iron that totally threw him for a loop. He actually commented that he'd never seen this before and had no idea what could be wrong. I'm not totally sure that it could be HH, but maybe it's just because i'm only 32? And my Ferritin is normal. It's the actual iron saturation that is WAY off the charts. He kept asking me if I was taking Iron supplements...which I'm not. So I sit here and wait for the test results to come back again...
Here were the results:
Ferritin + Iron Panel
Iron Binding Capacity Unsaturated: 14 (L) mcg/dL Ref Range (110-370)
Iron: 357 (H) mcg/dL Ref Range (46-178)
Iron Binding Capacity Total: 371 mcg/dL Ref Range (260-430)
Iron Saturation: 96 (H) <i> % ng/mL Ref Range (20-50)
Ferritin: 49.8 <i> ng/mL Ref Range (15-150)
Hemolysis Index: Normal <i>
Lipemia Index: Trace <i>
Icteric Index: Normal
Thanks for the link Nora_n!!
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