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

More And More Diseases!
0

19 posts in this topic

I guess I just need to vent. My GI guy called me last week with news that he thinks I have something called Gilberts syndrome and may also have hemochromatosis (iron over load). My other docs office called and won't tell me my lab results on my heart test (predictive for heart attack), and want me to come in this week for echocardiogram (I was already scheduled for one, but they wanted it done sooner after the blood test, so obviously the blood test was abnormal, but they won't say). I am trying not to worry about stuff, and frankly, I am thinking of ditching the docs--they are finding too much wrong with me :angry: . I have been having chest pain for awhile, now I am scared it may really have to do with my heart after all, and I am only 30 years old. I really just want to be well...a friend suggested I go to this homeopath she knows, I may just do that. This process of finding out about celiac disease has been a bumpy road and it has seemingly opened a pandoras box in terms of health issues for me. I know most people feel relieved when they get diagnosed with celiac disease. I wish I could say I was one of them. I just needed to vent.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi Karina,

I'm sorry to hear that you are having other health problems, but please don't give up on the doctors too soon. If there is something seriously wrong you should find out now before it gets worse. There are a lot of advancements in medicine, especially having to do with heart disease, and if there is something wrong that can be fixed you should try and find out.

A naturopath might be able to help, too. But I wouldn't put it first over conventional medicine. Just my opinion though. I hope you are alright.

What is Gilberts syndrome anyhow? I hope it is not very bad. And it is amazing that you have iron overload, when most Celiacs are low on iron!

God bless,

Mariann

0

Share this post


Link to post
Share on other sites

I have heart diesease too! they found it out when they were trying to find out what was wrong with me when it was celiac. i have a five chambered heart but nothing is wrong with it. i actually just had an echo, they're not bad at all. they are actually good because they will tell you if something is wrong with you and that is better than finding out the hard way.

0

Share this post


Link to post
Share on other sites

Marianne,

From what I can tell Gilberts sydrome is considered medically benign. It is a problem with bilirubin, you will have elevated bilirubin levels, but the rest of your liver profile will be normal. You may have jaundice with it, and according to one website I read on it there are certain symtoms that can accompany it. My GI doc, said not to worry about it, but he is more concerned with the iron-overload. Yes, he thought it was weird too, being that I have celiac. It is also a genetic disease. He has set me up for a gene test for it to see if in fact I do have it. I have read that it can cause heart problems, so I am a bit worried about my ticker right now. I just had the echo, so we will see what it shows.

Molly,

Did you have any unusual symtoms that made them do the echo on you? Chest pain, palpitations?

0

Share this post


Link to post
Share on other sites

No, I was having my tonsils out and i hadn't had one in a while and before they did anesthesia they needed to make sure my heart was fine

0

Share this post


Link to post
Share on other sites




Wow - I'm so sorry to hear about your health problems - When it rains, it really pours, huh? It seems like you have more of your share of sickness :(:(:(

I hope that you feel better soon and God bless...

0

Share this post


Link to post
Share on other sites

I wanted to mention that several people on my thyroid group have had iron overload. The treatment is to regulary give blood. Best wishes to Molly for a successful surgery. Hugs, Carol B

0

Share this post


Link to post
Share on other sites

Hi Karina,

I'm Czech, so you'll need to be a little tolerant of my English. Your symptoms seemed to be similar to mine, so I decided to reply.

I too have high iron/bilirubin, but not much, just a bit over the top limit. They seem to be related, when iron is low, bilirubin is low as well. I also have chest pain & palpitations, but there was nothing wrong on my EKG (is it the thing where they put wires on you?). The only thing they found different was quite low blood pressure and a little higher rate. I have been told that heart and lower esophagus share the same nerve, so when you get some reflux, it may seem like a heart problem. Actually, acid lowering drugs helped me a bit. I need to avoid acidic food as well. They tested me a lot for a bug called helicobacter pylori, I had some tests positive, some negative, and when they found celiac panel conclusive, they gave up further testing. I still may have the bug however. I've been gluten-free-CF for 9 months, and still hoping to get better.

Anyhow, I hope your heart will be OK.

MARK

Gluten-free Casein-free since September 03

0

Share this post


Link to post
Share on other sites

Karina -

You and I seem to be on the same path! I was diagnosed with Celiac in late April and I just had my follow-up with the gastro doctor on Thursday - he also mentioned Gilbert's to me since my bilirubin is still elevated - in fact, it's higher than it has been the whole time and this is after having had an ERCP w/sphincterotomy in April (you'd think clearing the bile duct blockage would have made the bilirubin go down instead of up). I also have chest tightness and pains. What bloodwork did they do on you to check that? So far, nobody has even checked that, but I actually forgot to mention it to the gastro dr Thursday (oops). It comes and goes, so if I'm not currently having it, I tend to forget about it. I see my endocrinologist in July, so I am going to ask her a lot of questions - she is actually the one who discovered the Celiac. I have actually been e-mailing with someone who has hemochromatosis, so I will link your post to an e-mail and see if she can answer any questions for you. I was glad to come across your e-mail - I was logging on to post about how darned ANGRY I am about this Celiac and all the extra health problems and reading your e-mail reminds me I am not alone. I'm still really MAD, but it helps knowing somebody understands. I've seen so many rude, uncaring doctors through all this who have told me such stupid things and I'm so sick of hearing "common things are common, rare things are rare." It's their "mantra" and they tend to pigeon-hole your symptoms into being something common and don't look for more and that is how Celiac is being overlooked and we patients are suffering now with multiple diseases because of it. ARGH!!! I already wrote my "angry" post...I suppose I should try to behave in this one!!!

LISA

0

Share this post


Link to post
Share on other sites

Karina -

Just wondering how you are doing - did they say you have Gilbert's? Mine hasn't said anything yet, but thank goodness, my bilirubin did come down a little bit in the last test. I was mistaken about the lady I'm e-mailing having hemochromatosis - it turns out her brother has that. I just found out yesterday that my Mom has it, but they told her she just has to go give blood to keep it under control (although I don't know how often). My friend said that is also what her brother does.

If you get a minute let me know how your heart test went. Good luck

LISA

0

Share this post


Link to post
Share on other sites

Sorry I havn't been aroung for awhile--was busy and actually was trying to stay that way and avoid dwelling on these negative things too much (esp. when I am waiting for test results and can't do anything else in the meantime). Thankyou for all the replies. Mark, have they told you why your bilirubin is high and iron too? Are they not concerned because it is not so high?

Lisa, so sorry to keep you waiting on a response! I am glad your bili came down. Were you jaundiced at all? I have not heard yet on the hemochromotosis--I had a gene test done almost two weeks ago and I am waiting for doc to call--it is my GI and he is always really good about calling me with test results--so he must not have them yet--I will check next week if I do not hear today. He pretty much said I have Gilberts but I will ask him again--he was not concerned about it--said it was nothing to worry about. As for the echocardiogram.....it was completely normal! :D My CRP was a bit elevated indicating I am at increased risk for a heart attack--this is why they did the echo. I have low BP and pretty normal pulse. They are now checking my cholesterol. I am trying to improve my diet--it used to be good and then when I had to go gluten-free, well I sort of went nuts like having gluten-free icecream every night and stuff :rolleyes: . I also need to get back into an exercise routine, more raw foods, less sugar and dairy. These things alone may help that CRP level and it is a healthful way to live. I also think I am going to go to the homeopath I send my daughter to. She has done great things for her and for my friend, so she may be able to give me a constitutional remedy that will help my body get to where it needs to be--well. I will follow up about the cholesterol and the hemochromotosis--although I am hoping after being treated with homeopathy that my levels in everything will improve and I may not even need conventional treatment. I will let you all know how this goes.

God Bless,

Karina

0

Share this post


Link to post
Share on other sites

Hi, Karina -

Glad to hear your echo went well!! And it is good that the Gilbert's won't do any harm. I have not been jaundiced, just had the bilirubin creep up and down. I feel like I'm eating too much meat since going gluten-free. I need to find some protein that isn't chicken or beef because I'm going insane!! I eat eggs sometimes for breakfast. I haven't done too much damage with the sweets, since in recent months, they make my stomach hurt, although I did eat a tiny butterfingers and a tiny milkyway since I was really in the mood for some chocolate and I read they were gluten-free. Hopefully, I won't regret eating them!! I need to get to the health food store and stock up on some other stuff so I won't grab the candy. I'm not familiar with homeopathy - how exactly do they treat you? Let me know if it works!! I had the blood drawn for my girls yesterday, so I'll find out in about 10 days whether they have Celiac or not and if they don't, then I'll find out if they have the gene. Good luck! Talk to you later

LISA

0

Share this post


Link to post
Share on other sites

Karina,

they didn't tell me why my bilirubin/iron is high, instead of this, they were speculating whether being at high altitudes can affect iron levels, but as they found my erythrocytes normal, they couldn't give any conclusion. Next test I got into normal range, so they were not so concerned. They also mentioned Gilberts, and they told me some people have elevated bilirubin all their life, and there is nothing much wrong about it. In the last test I went just on the top limit. The relationship was just my observation, I forgot to mention it to the doc, but I've found that iron is needed to make hemoglobin and hemoglobin is discarded into bilirubin, so this could be a ground for this relationship. Also, my hemoglobin is a little elevated, but still in normal range.

I have chest pains sometimes, but they are not on the right side. Most often, they are in lower left ribs area or in the middle of chest. I can even find a spot which hurts when pushed. My doc said it could be a pulled muscle but I'm sure it's not. The inflamation of the rib cage is far more possible case, but I'm not sure about it either. I did an interesting experience: while I was having the pain, I drank about 2 cups of water, and the pain stopped almost immediately. - It's not always working, but it gives me some relief often.

My cholesterol level was elevated as well, and I hope it's not going to rise any higher. In addition, I have pretty high antibodies to milk proteins, so I need to cut off all diary as well. In fact, it was much harder for me than going gluten-free.

Good luck.

MARK

gluten-free/CF since September 03

0

Share this post


Link to post
Share on other sites

Mark,

my chest pain is mostly left-sided as well and it is possible it is just costochondritis--but I needed to rule out cardiac of course. I know what you mean about the dairy--that would be very hard for me--I know I should probably cut down on it at the least as so many alternative health practitioners do not like dairy and I may have a sensitivity to it and do not know about it.

Lisa,

Homeopathy (from my layman perspective) is treating the whole person with a "remedy" that is made from natural substances (not really herbs). The homeopath spends time with the person, interviewing them, reviewing their medical history, disussing physical and emotional complaints, and then they come up with what is called a constitional remedy for that person--this takes care of everything for the person--they do not take additional homeopathic remedies or allopathic (conventional medicine) remedies for acute needs unless is is absolutely neccessary and usually it is not. For those not on medicines for chronic ailments and for those who can stop drinking coffee completely, they can take just a one time dose (may have to be repeated at some point).

In the case of my daughter, she was just one year old and suffering from chronic ear infections. Conventional medicine wanted to put her on allergy meds and inhalers and discuss tubes for her ears--she was just one! :o I took her to the homeopath, as well as cutting dairy and delaying further vaccines. Well no more ear infections or terrible colds (despite plenty of exposure), or severe allery symptoms. She is free to be her happy healthy little self and it has been well over a year. When sickness goes through our house she often doesn't get it when everyone else will and when she does it is less severe. Homeopathy treats the whole person--strengthening your body so that it will fight off illness and disease on its own--as many believe it was meant to do. My friend was basically cured of her life-long chronic asthma as well as migraines! I was very skeptical at first, but not so much now. ;)

Karina

0

Share this post


Link to post
Share on other sites

Very interesting about the bilirubin!! When I started having GI issues (back 13 years ago), it showed up high in my blood profile. After other blood tests showed my liver was normal, the doc threw out the high bilirubin as a false positive. Why do they do that? Anyway, I'm still trying to find out what's wrong

:unsure:

So.. you have celiac symptoms?

Gretchen

0

Share this post


Link to post
Share on other sites

Karina, thanks a lot for the costochondritis tip. I have done some searching on the web about it and it's possible I may have it as well. It can be cured with ibuprofen, which, as I already know, does work for me. I was a bit woried I may have a pericarditis, but hopefully it's not the case.

Anyway, you bet it was hard to get rid of diary, I'm still craving my favourite stuff. But the numbers tell me a clear message, and unless my antibodies drop down, I'll stay diary free.

Gretchen, did you ask me? I am AGA both negative, tTg IgG positive, IgA negative, caseine IgA positive, IgG high positive. Hope this helps?

MARK

gluten-free/CF since September 03

0

Share this post


Link to post
Share on other sites

About the rib pain, and this isn't much related to GI, but if the pain you are experiencing is in the same spot all of the time and it seems to hurt for a long period of time, then stops... it could be a broken cartilage rib. That's what happened to me.. have 5-7 broken and they'd never show up on the x-ray because they're not bones. Some were just hairlines and some were complete breaks, but they'll never heal and when irritated, just get inflamed (especially when I ate too much) and hurt like a bad bruise for weeks. After about a decade of wondering why they were hurting, they thought I had costochondritis or a gallbladder problem (since they were on my right side)... so, if I ever hear of someone with rib aches I just mention this... just in case. :)

Gretchen

0

Share this post


Link to post
Share on other sites

Gretchen, the pain moves and changes quite often. In addition, deep breathing doesn't increase the pain. I can't remember any event (like hit, fall etc.) which could cause this. So, I don't likely think it is a broken cartilage rib, but thanks anyway. It's interesting how many ideas can people come up with.

MARK

gluten-free/CF since September 03

0

Share this post


Link to post
Share on other sites

RE: Bilirubin levels

I am not a medical professional, but I must say this: If any of you have high bilirubin levels along with a deep pain back ache on right side immediately tell your doctor. The other symptom I'd be concerned about is diarrhea, but with a celiac that would be hard to determine if it was from the celiac or a pancreas problem. Sometimes the pancreas malfunctions and the symptoms are similiar to celiac. At this point, the GI should be doing an ultra sound or a more serious CT scan.

So please don't automatically assume your high blood test levels and/or symptoms are from celiac. My warning is due to a family member who's not celiac, having celiac symptoms, but diagnosed as having IBS and severe stress, who later was found to have a pancreas disease instead.

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
      104,676
    • Total Posts
      921,696
  • Topics

  • Posts

    • I doubt it. I would think that would be a questions for the company that make them.    But if smoking makes you feel bad....and you are able to quit for several weeks at a time....why go back to it?
    • Hi. I've noticed that after a break of smoking (2-3 weeks) I feel bad, when I begin to smoke again.  Maybe they contain some additives with gluten??
    • Thank you everyone! Good to know I am not alone with this. I am asking for a referral to a new cardio. Hopefully it will all go away the longer I am gluten-free. It started up in February/March after a gluten challenge and mostly vanished until July when I had a lot of shortness of breath. It absolutely was CRAZY just a few days after the glutening. I was gasping for breath and the beats were all over the place just walking through a parking garage and I was only mildy anemic at the time.   But it seems to "quiver" and do funny things for a bit still. I sort of theorized maybe it was inflammation in the heart because after this last glutening, my head felt like it was in a vice and my eyes would sting or get stabbing pain hurt (that is finally going away thankfully...knock on wood).  The head/eye pressure I learned also happens to my sibling who has celiac and his naturopath told him that sometimes the brain gets inflamed. Hopefully I can meet the new cardio soon and feel confident that he is taking me seriously. It is sort of difficult to feel confident in the opinion of a doctor that your ticker is ok when they are not really listening and end up making you cry. LOL. A friend of mine in the mental health field recently listened to my story of doc after doc and test after test and said that it was akin to the folk story of blind men describing an elephant. A group of blind men all feel one part of an elephant (tusk, tail, ear, tail) and then compare notes only to find they all disagree.  In some  versions they argue intensely. In other versions they have to collaborate and listen to each other in order to "describe" an elephant.    
    • Good afternoon! I am new to this board and fairly new to researching Celiac Disease, although I had a general idea what it was. My health has become a huge mystery to me, and it's one that I am desperate to solve. The biggest issue right now is horrible, life affecting fatigue. I have been dealing with it for several years now- as many as 5 to 6. It has gotten progressively worse, and nothing at all helps. Sleep apnea has been ruled out. Intestinal issues are something I have dealt with for almost two decades. I'm 45, but I've already had two colonoscopies as well as two endoscopies. My first endoscopy was as a child for persistent, severe stomach pain. My last colonoscopy and endoscopy was two years ago. The only thing that has come from those is an Irritable Bowel type condition and GERD, which is pretty bad. My bowel movements have always been crazy. They can be very normal and healthy to completely crazy. I've had periods of persistent diarrhea to occasional constipation, which is a fairly new thing within the last year. Last week, I went from having diarrhea that morning to hard, round balls of stool by that evening. My most common stools here lately, though, are not quite diarrhea, but more fluffy, large piles. Gas is an ongoing, daily issue for me. I have copious amounts of gas every day no matter what I eat or drink. Most of the gas in non-odorous but it can be very loud. I am currently on a total of 60 mg of Ritalin per day just to function. I often add energy pills, purchased from places such as GNC, because the Ritalin isn't working. Yesterday, I took both doses of Ritalin and two energy pills, and I passed out on the couch after work. I work from 7:30am to 3:30pm, and my work day is nothing too crazy. I try to keep very consistent sleep hours and could easily sleep to 1:00pm or longer if I don't have to get up for something. I sometimes have short periods of energy in the mornings, but that is usually over by noon. The quality of my life is greatly affected. I don't want to go anywhere or do anything because I am way too tired. I'm trying to keep up with my exercising, but that is also a struggle.  I have a history of clinical depression for practically all my adulthood, but it has been very well managed for the last four years. The fatigue is currently causing a great deal of depression, but it is very different from the clinical depression that I use to deal with. When I don't feel sleepy and tired, I don't feel depressed. When the fatigue sets in, I feel very irritable and sad. I realize that the stimulants can cause irritability, but I don't feel irritable or sad when I'm not feeling fatigued.  I've only recently began to explore that the fatigue and the intestinal issues could be related. I have always accepted that I have a sensitive, cooky digestive track. The increasing, unrelenting fatigue is what has lead me to exploring the possibility that everything could be related. I did have blood work last November. My doctor did not test for anything Celiac Disease specific, but she did do a Vitamin D, ferritin level and overall metabolic panel. All of that is normal. My thyroid level is also normal, and I do take thyroid hormone because I had half of my thyroid removed 11 years ago due to what turned out to be a benign thyroid tumor.  I just saw my doctor two weeks ago, and she increased the dosage of my Ritalin. That has not helped at all. She has never mentioned Celiac Disease to me before. I made an appointment for this Friday afternoon to talk about it, but I keep wondering if I'm even heading in a direction that makes sense. I decided to post here for some guidance. I'm sorry this has been so long. I'm not really into cutting something totally out of my diet just to see what happens. I also feel like that if I have something that is poisoning my system, I need a real clinical diagnosis of that. I feel like maybe I'm grasping at straws now and imagining a correlation that isn't there. I am not looking for a quick fix, but right now I have no idea what needs to be fixed. I am open to any information and/or suggestions. Thanks so much!   Jennifer
    • Celiac disease sufferers or those who embrace a life without gluten can check out Canada's Gluten-Free Market when it makes stops in London and ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,673
    • Most Online
      3,093

    Newest Member
    KAN
    Joined