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In The Process Of Diagnosis...high Iron?


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#1 aeon077

 
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Posted 28 May 2012 - 12:55 AM

I always knew something wasn't right. But a couple weeks ago, I went into the doctor to get my prescription refilled for Nexium because my horrible stomach aches were starting to flare up again. When I visited my doctor and described my symptoms, which included the stomach pain, heartburn, loose BM's, sometimes blood in BM, he insisted that I visit a specialist for a colonoscopy. These symptoms come and go, and they've been going on for several years. Anyway, after doing a little bit of research before my appointment, I realized that these, along with lots of other problems I have, all described celiac disease. The specialist agreed with me, and decided to do both a colonoscopy and endoscopy, and take several biopsies. I'm still waiting on the results from the procedure, but he said that all he saw was a little inflammation, and everything else looked ok...and to wait on the results to see what is going on, on the microscopic level. He's still thinking it's celiac disease. We don't know for sure...but we'll find out! He also wants to go back and do blood testing.

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!
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#2 1974girl

 
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Posted 28 May 2012 - 12:35 PM

I will be interested to read any responses from this. My dad has hemocromatosis (sp??) and I have the genes for celiac. My child has it. Dad has had a endo and they didn't see any signs but they didn't do blood work. They are not really concerned about his hemo. If he gets levels too high, then he just donates blood.
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#3 Takala

 
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Posted 28 May 2012 - 12:41 PM

Google search

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.

http://www.livestron...emochromatosis/


Here is a more recent cite on pubmed from 2004, the 2 patients with both diseases
http://www.ncbi.nlm....pubmed/15076002

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
http://www.ncbi.nlm....pubmed/12145797


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
http://www.celiac.co...emochromatosis/


Yes, it is possible to have both conditions, although rare.
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#4 aeon077

 
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Posted 01 June 2012 - 06:18 AM

Thank you so much for that info! I did do a bit of googling, and read several articles. What's interesting is that I fit the profile for Hemochromotosis... My entire family on both sides is basically from the "Celtic" region. Scotland, Ireland and GB. So we'll see...
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?
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#5 Takala

 
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Posted 01 June 2012 - 11:09 AM

Yes, going gluten free would possibly skew the CELIAC blood tests towards a false negative. It should not mess up the other tests. Has anyone done a celiac blood panel on you ?

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.
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#6 abaker521

 
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Posted 04 June 2012 - 05:44 PM

I was diagnosed with Celiac back in September and just last week tested positive for primary hemochromatosis (I'm a C282Y homozygous, meaning I received the mutated gene from both parents). I never really got better despite going gluten free and I think it's because I have very elevated iron levels. I'm meeting with my doctor next week to figure out a course of action (if I need a liver biopsy or not). I'm only 27 so I'm happy I figured it out now I guess. Unfortunately, my father currently has stage four primary liver cancer, but I don't know if it's attributed to hemachromatosis or not. I hope not as his cancer might have been prevented if so. :(

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!
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#7 nora_n

 
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Posted 05 June 2012 - 01:51 AM

Hemochromatosis is on the same gene as celiac....

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.

http://www.toomuchiron.ca/

and go and read the forum there.

HH is not so uncommon!

And so avoidable, with blood draws before there is significant damage
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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
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)

#8 aeon077

 
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Posted 13 June 2012 - 05:12 AM

Well, I finally got my biopsy results back from my doctor. He diagnosed me with Chronic Gastritis and then he said the biopsy from my terminal ileum showed an irregularity consistent with a food allergy. HMMMM So they took blood to do a panel of allergy tests, as well as a fecal fat test. They didn't have me change my diet, fast, or anything before hand, they just took it that day. Is that common?

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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