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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.

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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.

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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

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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.

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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?

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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

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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...

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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.

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