since celiac disease is off topic to HH, I sent you a private message Feral.

I have recently been diagnosed by accident and it was due to bowel issues that i went to the doctor and had blood tests taken, i also had started to react very badly to red meat and doctor diagnosed mild IBS after an endoscopy they discovered things called polyps!! excuse my spelling, but basically its scarring that ppl get when the are about 40 or older, but the damage has started already at 25 which in my non medical opnion explains my bowel issues.

i discover more and more food and drink that my body has fallen out with all the time. gutted.
just joined today, its very good to read and share. thank you

Welcome Sunflower, I'm pretty new here myself!

I know what you mean about food, I love it, it's supposed to be a vice for us Cancerians (star sign). Well at least you found out about your HH early which has to be a good thing longterm.

I'm going to have to tackle the doctor again on this one way or another. (I'm going to cut all all gluten (incl. soy sauce etc thanks to webrocket) and see if that makes a difference. If not then I'll have to look at bacteria, . . . . . then . . .. .and then.

Anyhow, hope you start to feel better

Hi Sunflower - welcome. I was wondering where your polyps are. Presumable in the stomach, as they were discovered with an endoscopy? They're not scarring, by the way, but growths of tissue, usually attached by a stalk. Info here : http://en.wikipedia.org/wiki/Polyp_%28medicine%29. Are they going to remove/treat them, did they say?

Feral....My major complaint for years was stomach issues, constipation and bloating and pain, that was way before all the other symptoms started, like the arthritis and fatigue and such...My gastroenterologist is actually the one who diagnosed me!
I am now de-ironed, and have absolutely no stomach problems whatsoever.

wildkat
That's great to hear! I hope I have the same result as you, though I'm also looking into other reasons just in case.

My stomach is terrible. I take pills for IBS. I just had an endoscopy and they said gastritis.

Sorry for the late reply!

But in general, most of my symptoms are much better now that my iron is lower. It's just the lactose intolerance that's gotten worse. I pretty much can't handle any dairy now. I can take lactose supplements, but honestly that's hit and miss. Sometimes they help, sometimes they don't. and I really don't like to have to pay the consequence!

The only real problem I have now aside from the lactose intolerance being worse is joint pain in my arms. Most of my other symptoms have pretty much vanished! I feel much better. I was miserable when i was diagnosed.

Strype
I've seen a couple of other posts from people who mention they have been diagnosed with gastritis, while there may be no connection given that many things can cause it (I only had a quick read on wikipedia) it does make me wonder if HH can trigger it also (maybe via another mechanism, e.g. allowing rogue bacteria to thrive)

Lauren
Great to hear of another person who is much better now (in many areas, not just stomach etc), gives me hope.

@ Strype...I was recently told I may have gastritis and to take prilosec OTC. Did the gastritis clear up fast? What did you take? Prilosec OTC has iron oxide in it. Is that safe for HH people to take?

strype; the way to find out for sure if you have ibs is a colonoscopy. i have had it for 20 years. prior to dx of hh. i also have diverticulitis, hyadhl hernia, and ulcers. i have also been dx'd for gastritis.
gastritis is a kind of generic word for we aint sure what your problem is. i hope that helps ,.

Sorry to disagree, YR, but IBS is the diagnosis they give when all else has failed and they're stuck. I also have had endoscopy's and have (had) diverticulitis, H Pylori, ulcers and polyps. All the rest (which you describe to a T), bloating, diarrhoea etc, they put down to/as IBS as they can't find a cause and don't really know.

Try psyllium caps and probiotics, they really help.

Agree with EVERYTHING. i was diagnised because of the stomach issues by gastro doc. Had extreme bloating constipation, weird "output". Mostly the bloating and upper right quadrant pain. for two years, then pain in hands and arms came, then tingly feeling and red hands and feet and fatigue. finally a diagnosis. I have the H63D variation which causes a body to produce too much aspartate reception which are also utilized by free gluatamate, both neuro toxins in excess-- more gluten, more glutamate.. I think my IBS is related to iron oxidation and this. Have starteNot sure if C282Y is similar in this regard... I started a gluten/soy/dairy/corn free and limited glutamate diet (its in everything) and feeling a lot better after a month. my stomach shrunk from a 36 to a 32 in 3 weeks... YMMV best to all and good luck figuring this crazy disease out...jason

Jason what is aspartate reception and what are you doing for it? Does it relate to gluten, that which I have stopped eating?

Thanks christopher:-)

This is interesting. I was told that I have IBS back in '03 when I had bouts of diarrhea that would come and go mysteriously. I;ve never been able to identify the strange scent or color either, but metallic does seem to fit., well, the odor at least. The color is still unexplainable. I had suspicions after being diagnosed with HH, but could find nothing to really support them, only a couple websites of unknown authority. What's even stranger, yet more sensible now, is that it used to flare up bad after having eaten beef which is high in heme iron. The regular phlebotomies have been helping since I don't seem to have had a bout in quite a while, even eating a hamburger last weekend didn't cause it. Poop is still funky smelling and colored, but my ferritin is still really high too. I'm curious if that will go away once the ferritin is normal. It would make sense that there is a relationship since the liver is where bile salts are produced, and I read somewhere that certain flora flourish in iron rich environments--much like plants do. Hmmm... I'm glad I found this group. It's been much more helpful than the Iron Disorders Institute one. Maybe try cutting back on beef for a while, if you eat a lot of it and see if that changes anything and see about getting the iron down with your doc. A good Hematologist would be helpful since they specialize in this stuff. My GP who originally diagnosed me is awesome... love her to death, but started me out all wrong with treatment. Keep us posted on the development. It really could be that IBS is a symptom of the underlying HH.