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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.

Celiac Equals A Lonely Life
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34 posts in this topic

I'm trying to battle my depression with diet and exercise since medications caused me severe neurological problems. However, the Celiac isolation is making it so hard to combat the blues. I just learned I wasn't invited to family function because they didn't want to worry about my diet (even though I bring my own). This seems to be the trend. My friends don't have me over anymore and now my family is excluding me. This disease is so hard mentally.

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It IS hard mentally.  But so are crappy friends, and that seems to be what you've got there.  I'd encourage you to tell them "please don't exclude me just because I have to eat differently.  it makes me sad and I miss seeing you."  But I'd also encourage you to find new, better, friends.  'Cause you're aren't being very friendly. :(

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I'm trying to battle my depression with diet and exercise since medications caused me severe neurological problems. However, the Celiac isolation is making it so hard to combat the blues. I just learned I wasn't invited to family function because they didn't want to worry about my diet (even though I bring my own). This seems to be the trend. My friends don't have me over anymore and now my family is excluding me. This disease is so hard mentally.

I know I sound like a broken record, but has your thyroid been screened? Not just tsh - but free t3/t4 and thyroid antibodies? That could be contributing (or solely responsible for) your depression.

There's no doubt Celiac can be isolating. Adding depression on top makes it that much more difficult, I'm sure.

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Yes, mentally it is a challenge.  I am planning to try a new Bible study.  I am noticing I seem to keep talking about celiac, and not too many want to hear about it.  I also have noticed that when I feel rough physically, I have the hardest time mentally.  Its hard to make new friends when one is caught up in fighting celiac damage.  Sometimes I feel so high need; it is hard to make friends when right away you want to express this high need situation in your life. 

 

I think one of the things to do is to realize it is a hard thing to recover from extreme physical damage.  When one realizes this, you go on doing whatever you can to keep going and don't expect too much of yourselfRemember, this is a difficult  adjustment, but the time for the adjustment is not forever.

 

I hope we can get sympathy, help, and friendship on this forum.  I hope we will have family members that will come along side and help as they should.  I hope we will have friends and others to help in the times of need.

 

***Get Well***

 

D

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I feel you! I haven't seen any of my friends since this started. Actually as weird as it sounds I've gotten closer to my ex husband, we have to talk about Celiac and GFD because of our oldest son. I'm sure he gets sick of hearing about it too. :-/ I too fight depression, and I feel it's because this has taken over my life. Don't get me wrong I'm thankful to have a name and treatment for it. I'm thankful for the improvements my son and I have made. But I feel like I eat, sleep, and breath GFD and Celiac! If I try to distract myself with tasks and jobs, I start having nightmares of eating gluten! Weird huh?!

Have you looked into support groups near you? I would think that should help a lot to make new friends that share this experience.

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I am sorry this has happened to you, Bee.

 

When I was very ill before DX, I had a few people drift away from me. Sometimes, adversity reveals true character. That was very hurtful, but I figure if they could not be there for me when I was down and out, then maybe they were not true friends after all. I actually made new friends through having celiac and this has helped me cope in many ways..

 

I am fortunate to have some loyal, long time  friends who took the time to learn about celiac and cross contamination and I have been to their homes

and had safe meals. They asked me many questions and we decided on the menu together. I brought them a flexible cutting board for their use and I helped prepare dinner. They wanted me to watch what they were doing.

I brought wine and dessert (a flourless chocolate cake with ganache that is decadent and delicious, for example) and we had a great time.

I have done this safely several times.

 

I also invite them to my home and cook for them (as I did before DX) and no one misses gluten, I assure you. :)

 

You may have to talk with them about how they are making you feel (as tarnalberry has suggested) but you may also have to do some educating to have them see there is no need to exclude you and there is certainly no need for them to stop coming around to your house, either.

 

As for your family's rude behavior, you can simply say  to all of them "you know, I want to come to family gatherings and I can  bring my own food so you don't have to worry. Please, don't leave me out." :)

 

I know this puts a lot of you--making these gestures and taking the initiative--but, hon, this is your life now and you have to take steps to make it more easy on you. I know it is hard, and I felt the way you are feeling too (mostly because I miss the spontaneity of just going somewhere new and dining anywhere I wanted) but I knew I had to make the changes to get past the initial sadness to make dining with family and friends fun again.

 

And as Prickly points out, it could be your thyroid contributing to the feelings of depression...and it could also be a Vit D, B-12 or folate deficiency too. I felt pretty depressed and anxious when I was first DXed because I was sick and had many deficiencies going on. (they are all normal now and I feel fine. And meds made me feel worse, too, BTW) 

 

Make sure you have your levels checked.

 

I hope you feel better soon! Talk to us when you are feeling this way. We get it.

I promise you, it gets easier as it becomes "the new normal" for you. Chin up!

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Hey there

Sorry you are having such a tough time with this, I know it is even harder through depression. I don't know how long you have been on a gluten-free diet, but I know my mental health has improved massively since September 12, and more so since January when I discovered other food intolerances.

I lost a load of friends before diagnosed ncgi, I was pretty unwell for several years. I have found that being as matter of fact as I can about the diet works best. I try not to talk about it too much, I will say a few lines if asked and say something like I am here to see you guys, what have you been up to? to try and deflect. I take my own food everywhere, and invite people to mine more often than I used to. Having them home and feeding them 'normal' gluten-free food like a roast and potatoes, or a risotto shows them it doesn't have to be weird or gourmet. Killer dessert helps.

I would have a quiet, non confrontational word. Maybe suggest something you can do 'come to mine' 'let's go for a picnic' etc.

The truth is, you will have to be the one to make an effort. I come here when I need to moan, my family is very supportive, but even they don't want to hear about it all the time.

I took inspiration from the folks here who are determined not to let this disease take any more of their lives.

You might be upset, but my guess is that if you can go to them with something positive, they will likely be positive back. I think I may be a bit like an enthusiastic puppy, but I get a lot more invitations now.

Let us know how you get on, keep talking to us :)

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With family the only thing I can suggest is pulling aside the person most likely to make sure it gets around and making sure they know that you want to be included. I think part of the problem can sometimes be that they feel awkward because they make assumptions about how it must be for you. Clearing the air on this will be the best way to make sure that family get togethers in the future include you and aren't full of any unnecessary weirdness. Just the regular kind. :D

 

I've had sort of similar issues with my best friend a bit. She wasn't sure what we could do since our normal thing when we would hang out was to go chill at Denny's or IHOP and share a plate of fries or some pancakes or some such. I talked to her about it and made sure she understood that it isn't weird or awkward for me to either bring myself a snack or to just come along and not eat as long as she doesn't mind. Or we could go to a place I could eat. Or we could find other things to do, like chill at a park in the shade and bring our own food or walk around the mall in the air conditioning and look at all the things we can't afford. We even have a Chick-fil-A and Orange Julius at our mall so if we get hungry I can eat in the food court with her.

 

It is quite isolating. Through the time I was the sickest before my diagnosis I lost many friends. I wasn't well enough to go out much, and then became so ill I never left home besides appointments and the occasional grocery shopping and pharmacy visit. With the few friends I have left, and have made since my diagnosis I have had to really make changes to the way I approach friendship in many ways. I have discovered I absolutely love (beyond all comprehension) cooking for people. Two years ago I couldn't have imagined inviting people into my house and cooking for them, it would have been so much pressure and weirdness and just...  *shudder* but now I can't get enough.

 

Lastly, if it comes down to people who just don't have the time, or energy, or just don't care enough to invite you to something after a conversation about how things don't need to be weird. Well... they were never really your friend. You don't need people like that in your life. If you are nothing more than a non-contagious disease to them, screw them. And frankly, that goes for family too. Will it hurt? Sure. But they can be replaced with caring and loving individuals who will see you for a whole person, not as nothing more than a disease or someone who can't eat X or Y. My "family" isn't just my parents, sibling, husband, and other blood... many here are my family also. Sometimes you can pick your family, and do a better job than you did when you were born. :D

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Life is rotten isn't it. Doesn't feel like like celiacs will be part of the norm for decades. Awareness, change and adaptations are happening way too slowly. 

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  :o  you are entitled to your opinion, of course, dani... but I have to say that I simply cannot agree with any of those statements.

 

I think that whatever way WE view having celiac is the way the others in our lives will,  too. 

 

I certainly do not think life is rotten. I worked hard to get my life back to normal after being very ill and I do not really allow anyone to make me feel inferior or bad because I have celiac.

 

I do not talk about it that much with people (outside of other celiacs) because it is not the focal point of my life.

I choose times to promote celiac awareness, too because I think we are the only ones who can really make a difference in how it is perceived. 

 

Attitude plays a big part in adaptation and acceptance. IMHO

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I am very happy, and have a wonderful life, full of great friends. I have a great social life, and lots of energy to run about with my kids. We are forever having people over to lunch or dinner, or going out to picnics.

Before diagnosis and a gluten-free diet this wasn't true, and life was challenging. You couldn't pay me to go back to my life before, even with all the extra planning, and initial awkwardness while everyone gets used to a new way of doing things.

I don't dismiss how hard it is to start with, but with a positive attitude, and lots of research it can be done.

I am still relatively new, gluten-free since September 12, other eliminations since January 13.

I hope others can make it work too :)

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I get down and feel lonely sometimes too.  It is hard when so many social occasions center around food.  You can change your activities to ones that don't.  Take up a musical instrument, join a knitting circle, join a book club at your local library.  Have social activities at your home and provide gluten-free snacks.  It just takes some time to adapt.  You will get there.

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 Take up a musical instrument, join a knitting circle, join a book club at your local library. 

being gluten-free for a few years has cleared up my brain - it's frustrating to not be able to concentrate or to use all your energy on doing the 'necessities' - this past sunday, i found myself counting in church 4/4 time - hmmm!  i forgot i used to be able to read music!  maybe i still can  :)  maybe it's just been lost in the fog for a while.  i also like to garden but i was too tired all the time - now i am killing plants like a boss (J/K lolz) i can actually get out there and weed.    <i know, it's a dumb thing to be happy for - extra *work*  yayyy....

 

hang in there, buddy, and anybody who feels overwhelmed.  even small victories are still victories.  

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BZBee, so sorry you're feeling this way. I've had a few of those moments...

 

I agree with some of the other posters that the more we project the idea that this isn't stopping us from living life to the fullest, the less others will freak out about it and exclude us. (I admit I am very, very blessed by friends and family who keep including me even if I can't eat their food sometimes.)

 

I sure hope you can convince your family that you want to be included and that celiac is not the plague!

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(((HUGS))) Before I was diagnosed I suspected I was dying. My best guess was a brain tumor. (the only symptoms I cared about were the neurological ones I had others but they didn't terrify me) My best friend and I met for lunch twice both times I wanted to tell her how scared I was, get her support, her thoughts on what I should do, and tell her what to do with my belongings should I die. Both times I didn't tell her because I sensed she too needed to tell me something and I feared for her so I kept my mouth shut. Turned out she was having an affair with my other BFF's husband. She never told me, I guess because I was holding back my secret she held hers as well. When the poo hit the fan I was so sick I couldn't cope at all. Our entire circle of friends fell apart. The only one I kept was the one who lost her hubby. I regained one of the others years later after I got well. Since then, since recovering from Celiac I have made new friends who are supportive and fill my heart with joy. I have a new life and new hope. You can too, it won't be easy, it will take time. But we are all fighters here, we wouldn't have survived this long if we weren't. The old saying it's always darkest before the dawn was true for me, I hope your dawn is coming very soon.  

 

The social eating thing is a pain in the rear but I am always amazed by the wonderful souls who find ways to include me when I least expect it. The friends at work who have shared there fresh fruit. The friends who have actually seen "gluten free" printed on something and bought it for me to try. The friends who post links to gluten-free foods and recipes on FB just for me. :) Sure I still look like a drug addict when the boss orders pizza for everyone. But it's okay I've got a locker full of Mrs Mary's Pumpkin Crunch, Banana Chips, sunflower seeds, and always some sort of power bar in my purse. I can cope.

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I'm going through this process of always being alone myself.  My gluten problem is basically a self-diagnosed one seeing as how I cannot find a doctor who is willing to cooperate or seriously address my concerns.  Most of the time I've been prescribed anti-depressants as the catch-all solution with the tacit implication that I'm otherwise perfectly healthy.  I usually walk away feeling like a hypochondriac with imagined symptoms when deep down inside I know that I am not such a case.  I have begun to doubt myself and my own intuitions and instincts which I've learned to rely on throughout my life.  I sometimes wonder if maybe this really is just a manifestation of deep depression?  But then I go back to the research and all of the signs keep pointing back to the same place and that is of course a gluten problem.  Beyond the issue of being unable to get officially diagnosed lies the troubles of having friends and family not believing you either.  The people closest to me will never accept that there's something truly wrong with me until I can provide them with sort of professional documentation to back it up.  This has caused me to withdraw and isolate myself and it has a cascading effect which spans every potential relationship in my life.  How do I explain my physical and emotional symptoms to anyone without proof?  I'm deeply embarrassed of my forgetfulness, night sweats, stomach always gurgling etc.  It has destroyed my confidence and has left me feeling inadequate and undesirable as a person.  I have passed many up social opportunities in my life because of this and people's perceptions of me are so skewed as a result.  It's amazing how people will jump to conclusions.  No I'm not a closeted gay person because I'm introverted and choose to remain alone.  I'm a tortured soul with no outlet for relief.

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 Awareness, change and adaptations are happening way too slowly. 

 

I can see where you are coming from here. At least with change and adaptations. Awareness is up, but change or the willingness to change is, well.....slow to put it mildly. But I do believe we are incharge of our own destiny. It has been said, "be the change you want to see in the world" so It's up to us as individuals to make the change happen, all we can do is try.

 

I have heard it said, "life begins at the edge of your comfort zone." I live by this everyday. And I have found it to be true (at least to me). With that comes change of thinking, change of behavior and change in responses to things/situations like this.  We can change our own environment and our responses to that environment. Yea, it might be uncomfortable, but then "life begins at the edge of your comfort zone" B)

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. Yea, it might be uncomfortable, but then "life begins at the edge of your comfort zone" B)

 

exactly! if you want your family and friends to understand where you are coming from, well, you have to do some "educating"!

 

I say: Make a  nice dinner, invite them over ....and show them that delicious food is not a "celiac" or Gluten issue..

......it's about great food, good times and happiness.

I have friends coming for dinner tomorrow and they have also cooked for me (without a problem!)

 

It's about living your life!!.  

 

Celiac does not define me or confine me. Period.

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Hi Bee, I just wanted to say that I know how you feel, we've all been there. This is a great forum. I have been depressed about having celiac too. When I go somewhere I often bring my own food. I do think it makes people feel weird, but I would rather risk offending someone than chance getting sick by eating their food. 

I also still go to dinner with friends and if I know in advance I won't be able to eat anything at the restaurant we're going to, I eat before I go, and I just order a drink. It's awkward but I explain to people that I'm very sensitive to even a breadcrumb and I PRETEND that I don't mind just ordering a drink and eating beforehand, so that puts them more at ease.

Yes, inside I'm pissed off that I have to haul my own stupid food with me everywhere or eat BEFORE going to dinner, but that's just the way it is and I'm trying to be more accepting of it. :/

My only other advice to you is ... listen to IrishHeart's advice. She's awesome. 

And there are a lot of other great people on this forum who have helped me too. 

Hang in there. 

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I can relate to this thread. Celiac Disease does make me feel depressed at times and I have been diagnosed for over 4 years. I think the mental side of the disease is the hardest part, people just don't get it.

But let's try and look on the Brightside, we are no longer feeling depressed and suffering with gluten symptoms. I think if we all stick together and raise awareness of the disease the ignorant few who exclude us now, will have no choice but to be educated and accept the disease for what it is.

 

 

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Positive Affirmation and Video Games and some Netflix will make it all better :P

 

You need yourself celiac friends, a support group and some spirituality of the abstract variety :D

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Wow I went to a 6 year olds birthday party and was asked If I wanted cake and icecream, I graciously said ohh no thank you! And later I heard the cup cakes were gluten free! I said Ohhh I can eat those. And everyone looked at me!! I said ohh umm yea I was DX'd with Celiac a couple weeks ago. My friend said ohhhh you need to talk to my sister!! She ran and got her sister and she hooked me up with her phone number and wow!! I had so much support I was over whelmed !!! We go to my husbands brothers house for dinner on holidays and stuff, I haven't told them about it. I probably won't! I will prob just make something for me to eat. I have already gotten support from my friends!! One of my best friends already went shopping with me and looked everything up on line so she could learn what I could and could not eat!! I am also going on Vaca with my other friend in 3 weeks!! If your friends are dumping you because you have any kind of health issue it is no wonder your depressed!! And if Family members don't want you there because of it!! I'd say you can kiss my lilly white!! You can find friends that will treat you better!! Don't put up with people treating you bad!! 

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I really do appreciate my online celiac community. I don't mind eating gluten-free and in many cases I like the gluten-free variations better than the gluten. I definitely prefer it to being sick all the time! It just gets frustrating having to always explain the disease and why I eat the way I do.

I just came back from a week away and my hotel didn't have the promised fridge and microwave. Some places were accommodating but I'm sick of eggs, salads, and ice cream for awhile.

Now, I'm trying to recapture my muscles that starved to death from malabsorption. It feels great to be able to work out again, and it cures the depression.

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I really do appreciate my online celiac community. I don't mind eating gluten-free and in many cases I like the gluten-free variations better than the gluten. I definitely prefer it to being sick all the time! It just gets frustrating having to always explain the disease and why I eat the way I do.

I just came back from a week away and my hotel didn't have the promised fridge and microwave. Some places were accommodating but I'm sick of eggs, salads, and ice cream for awhile.

Now, I'm trying to recapture my muscles that starved to death from malabsorption. It feels great to be able to work out again, and it cures the depression.

 

 

I am so happy to be able to work out again (it's been YEARS!) and I suggest going slowly at first. Protein and good carbs and water.

 

I am so delighted to have muscle tone again. I had ZIP...almost atrophied. But it's getting better and better.

 

Good luck, hon!!! :)

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Yes, lots of protein and vitamins. I already made the mistake of pushing myself :( However, I'm glad my muscles are responding since they've been starving to death for so long. I feel happy that the muscle aches are self induced and not because of malabsorption.

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    • 7Hi jen and welcome No-one can diagnose remotely via nterwe  posts but if there was such a game as celiac / gluten sensitive bingo, I would be calling 'House!' having read your account above... Lots of things fit the pattern as I'm sure your lurking has revealed.  It's a tricky condition to diagnose however so you may have a little wait before you join the coolest club in town and get your funky celiac membership card For now it's really important  that you stay on gluten. Keep eating it as accurate testing requires it. Ask your doctor to check the boxes for celiac testing alongside your liver blood tests. There should be enough in your history to get this without hassle but if they're reluctant INSIST and don't be afraid to assert your reasonable suspicion and wish to clarify and exclude. A good liver specialis will be aware of the possible links so you should be ok. If not gt second opinion. Ask for a full celiac panel as there are variety of tests. Find further info here There's a lot to take in,  but be positive, I think you are on the right track and if so, you could soon be feeling better than you ever thought possible!
    • Hello,  I am in a job that I travel every 3rd week...It gets challenging becuase many times I am doing audits of warehouses and they dont even have a cafeteria.  I usually bring gluten-free protein bars as a back up if I have to miss a meal and then eat when I get back to the hotel.  Just a suggestion because they certainly fill me up....Have a safe trip...Kelly  
    • Hello all, I'm a new member here but have lurked for a while. I'm looking for some advice regarding my medical history, possible symptoms of celiac and next steps. General info: female, low level smoker, drink alcohol, aged 32. I started having bad gastro issues when I was around 17. Since then I've consistently suffered from chronic diarrhoea, frequent discomfort in the tummy area, feelings of dehydration despite drinking at least eight glasses a day and frequent fatigue for no real reason.  In 2008/9 I visited the doctor as my diarrhoea was having an effect on my studies at the time. The doctor tested me for allergies; eggs, fish, gluten and lactose and did a "standard" blood test. Everything came back fine except my liver results, which were elevated to double (I did not the see the results for myself so can't say which enzymes etc). I was told to drink less and take Imodium. The doctor implied that perhaps I was stressed and / or anxious and, still being young plus a student who regularly went out drinking, I accepted this advice and carried on with my life.  I would here add that I am not an unusually stressed person - in fact, learning to deal with my unpredictable bowels has forced me to be quite a laid-back person!  Fast forward to 2016. I had been living with my partner for two years by this point who had noticed my bowel habits and informed me that this was definitely not normal. He encouraged me to try out a gluten free diet since I was apprehensive about visiting a doctor only to be fobbed off with Imodium again. I did the diet as strictly as a newbie can for around two months before we set off travelling. During the diet I noticed that after a couple of weeks of extreme tiredness I felt quite a lot better - I kept a food journal at the time which showed that I almost immediately had diarrhoea once after eating an ice-cream, i felt bloated and unwell after an attempt to make oat muffins (maybe i didn't cook them very well though!) and I felt bloated and had diarrhoea after eating some fish fried in flour (We made a mistake in ordering them but I didn't want to complain). My partner also reported that my mood swings (which I admit can be a little unpredictable) were much better.  Once we started travelling I gave up and ate what I was given as we were staying with friends etc much of the time. Toward the end of our trip I started to feel extremely tired, to the point of having to stay in for "rest" days, and my guts were very unhappy. I chalked it up to irregular eating patterns, too many beers and late nights in general. During the trip I also had an extreme hangover after drinking wheat beer. And, while of course I accept that any overindulgence can make you ill, I really felt that that level of hangover was quite out of the ordinary. Finally, I developed a strange lump under my armpit during this period. Now back at home, I decided to go to the doc and check out the odd lump under my armpit. The doctor was pretty confident that it was nothing to worry about cancer-wise but she ordered a battery of blood tests just to be sure. The lump is fine (good news) but the results showed elevated GGT, high-ish ALT and normal AST liver enzymes plus signs of dehydration in red bloods / higher (but not concerning) levels of white bloods. I'm scheduled to go back for another blood test to double-check liver function and discuss results - if it is again high she will send me for a ultrasound.  Does this history chime with anyone here? I know that the correct course in basic health terms is to stop drinking for some time (easily done) and stop smoking forever (easy to say...) but I cannot help but think that something else is going on here. I will discuss this with my doctor and make clear that my bowel issues have not been resolved and that the initial IBS diagnosis wasn't based on any thorough testing so to speak. In the meantime - does anyone have any advice for me in times of avenues to research or experience of similar symptoms? Gluten remains in my diet but in all other respects it could be regarded as very healthy, I think anyway... (pescatarian, plenty of fruit and veg, little to no sugar on a daily basis, not much dairy to speak of...) Thanks in advance and sorry for bending everyone's' ear about this... I guess it's just taken a long time for me to admit I might be sick and I need some help. Jen
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