Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

In The Process Of Diagnosis...high Iron?
0

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!

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,092
    • Total Posts
      920,314
  • Topics

  • Posts

    • WOW.  That looks eerily familiar.  Last December the temporary provider here at my local (rural) clinic gave me doxycycline to experiment with, but it was a mere ten milligrams.  Lol, no wonder it didn't help!  I'm glad you're feeling better.
    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,123
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined