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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

In The Process Of Diagnosis...high Iron?
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8 posts in this topic

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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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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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.livestrong.com/article/550942-gluten-intolerance-skin-hives-hemochromatosis/

Here is a more recent cite on pubmed from 2004, the 2 patients with both diseases

http://www.ncbi.nlm.nih.gov/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.nih.gov/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

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

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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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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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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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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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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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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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