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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Oh No, New Gluten Reaction?
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skbird    0

Yesterday we had a birthday lunch for our manager (department of four) and we went to a nice restaurant. I ate a bowl of cottage cheese with flax meal just before going so I wouldn't be so hungry I'd eat something questionable. I planned on a basic salad with oil and vinegar.

But when I got there they had on the menu an appetizer of an artichoke (hot or chilled) with garlic aioli and melted butter. I made sure there was no bread or croutons on it, no dressing on the baby greens that came around it, and had the waitress make sure there was no flour in the aioli. She even said, "oh, my MIL has that!" It came out perfectly - chilled artichoke sliced in half, a little bowl of aioli with no flour, and a bowl of clarified butter. There was sprinkled fresh parsley decorating the plate.

When lunch was done I had a weird feeling of pain flash around the back of my head and a minor stomach cramp. I decided I was in for it, regardless of the attention I paid to things. Then I forgot about it.

After work I was in a horrible mood - cranky and depressed. After dinner I was getting more and more depressed. I started telling my husband about it and just sobbing. Told him about how I felt 10 years ago when I was first diagnosed as depressed and how it felt like my body and brain just gave up. How I started being treated for bipolar disorder. And how since I had convinced myself this is not my problem and in several years now I have been fine, minus regular health stuff and stomach problems/migraines. No depressions at all.

I told him I was so worried I was going right back to where I was before. I was mortified. He told me it sounded like post traumatic stress sort of, fear of reliving an experience. Finally I went to bed and slept pretty well as I took a xanax.

I woke still feeling really low and sad. Got to work, feels like I've been crying all day (but haven't). Yelled at my husband this morning, really hard. Now I feel pain in my neck and a minor migraine and even weird feelings in my stomach.

Once my stomach and migraine started I though, Gluten! Classic reaction for me. But the emotional stuff - it's kicking my butt. I want to dig a hole in the ground and hide.

I can't figure what happened - maybe the mayo wasn't gluten free, maybe the clarified butter had crumbs in it - maybe the chopped parsley sprinkled on top was cut up in a food processor that had bread crumbs in it... what do you think? I'm really so depressed about it all right now that I feel I should be locked up or something. I've never had this kind of reaction before.

Any thoughts? :(

Stephanie

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bean    5

Oh Stephanie :(

I'm so sorry that you're going through this :( It absolutely sucks. I've had troubles with depression through most of my life, so I know where you are coming from. I spent *years* on anti-depressants (Prozac, Paxil, Wellbutrin, Effexor, etc.). I went off of the Wellbutrin/Effexor combo a few years ago and had been fine until I started eating more grains (after I discovered I was allergic to dairy products, eggs, and possibly beef). When I started eating a TON of gluten containing products (preparing for my biopsy) I was unbelievably depressed. I mean, it was *really* bad. I would just start crying about 3-5 times/day, every day of the gluten challenge. The day before the biopsy, I just laid down on the floor and started to cry. (Fortunately, a little while later I was called about a cancellation and was able to have the biopsy the next morning! Yay!)

I think this is absolutely gluten related. My dad is bipolar and has all sorts of emotional issues (anxiety/depression/etc.). I am POSITIVE that he has celiac disease and that's what's at the root of it.

But don't worry, it will go away :) This is only my 3rd day gluten-free and I am already feeling so much better. My guess is that you were just glutened at the restaurant.

I know that when you feel like this, reassurance from someone who isn't inside of your body feeling all of the emotions you are feeling right now isn't all that helpful - but just try to be strong and know that it will pass.

Hang in there! :) *hug*

- Michelle :wub:

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skbird    0

Oh Michelle - that is so totally sweet of you. Made me cry (uh, totally easy target right now!!!) when you wrote

I know that when you feel like this, reassurance from someone who isn't inside of your body feeling all of the emotions you are feeling right now isn't all that helpful - but just try to be strong and know that it will pass.

If that doesn't sum it all up.... My husband is really sweet about it but just doesn't help. He either hasn't felt this way or doesn't express it this way. Last night he was saying, "sure, I get depressed, and I feel this way...etc etc etc.... and I think part of the problem is that you are aware of how you feel and that most people feel this way some but it just doesn't register with them". Well, that doesn't really help.

It was crushing last night and some today. Like I feel like I have no faith left. But I am feeling a little better since lunch - I had a good cry at home and then decided I will make it through. Was just so horrible last night when I re-lived how bad it all got 10 years ago - I thought I would never be ok again.

Oh, and I was reading your topic earlier about your endoscopy - I'm so happy for you that you now can eat gluten free and hopefully finally get better!!!

Thank you so much for your support.

Stephanie

PS I call my cat, Benny, "Beany" as a nickname and whenever I see your "name" Bean on the board I think of him. :)

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KaitiUSA    7

I'm sorry you are feeling bad. I know what it's like to get these reactions. Just hang in there and know you have all of our support.

Feel better soon :D

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bean    5

Stephanie,

Sorry to make you cry again! I so know how you feel though - when I was in gluten hell I shed a lot of tears as I read nice things people wrote for me here. It just kinda rips your guts out when people are so nice to you, huh? ;) But get used to it because I think a lot of people here like ya ;)

Oh, and *don't* think that it's going to be like it was for you 10 years ago. Ten years ago you weren't on a gluten-free diet, were you? You have so much more control now than you did then, and I truly believe that your diet is making all the difference. I am hopeful that it will be a huge step for me too. For such a long time I would say the same prayer at night when I would go to bed; "Dear God, Dear Goddess, Dear Angels, Dear Loving Spirits and Powers, Anyone who has any power over this universe.... please bless me that I wont wake up tomorrow. Please release me from this pain." It was never physical pain, but so much heartache and sorrow. I can't say that I know exactly how you feel because I'm not inside of you - but I think I have a pretty good idea. And I am so sorry you are hurting now.

But, like *you* said - it is getting better already, right? :) There's a great quote from Scarlet O'Hara in the book Gone with the Wind: "Tomorrow is another day." It's such a simple thought, but so important when you feel like this. Try and remember that tomorrow has a very good chance of being 1000 times better.

We all care about you so much. Take care of yourself.

*hug*

- Michelle :wub:

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skbird    0

Thanks Michelle!

I ended up going home a little early as I had a small migraine and a little stomach upset - was afraid it would get worse. But fortunatly, it didn't. I am pretty much over the emotional part - THANKFULLY!!!

Now I'm on to odd joint pains. Last night we went to a movie and I noticed my knuckles on two fingers in my right hand were stiff and sore. Today it's more knuckles and my wrist on my right hand. I have never had this feeling before in my hand but it is similar to how my neck felt the other day, the night of the glutening. So I guess this is an alternate reaction. Wow, if such a small amount can make me go nuts emotionally and have weird arthritis feelings in my neck and hand, what would be happening to me if I was still eating the stuff??

:o

Thank you so much for your reassuring words - it really helped me a lot. Yeah, Scarlet O'Hara - she had an answer for everything!

And thanks, Kaiti - and nice new avitar! Much more seasonal! :D

Stephanie

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Guest BERNESES   
Guest BERNESES

Oh Stephanie- I know all to well how you feel. I have struggled with depression since I was 21 (I think I did before that but wasn't diagnosed till I had an incapacitating one). The same thing happened to me today actually.

I've been gluten-free for 8 days now (I was gluten-free for 2 months before my upper GI) and it seems like things have gotten worse. Before I ate gluten again, I was feeling so good. Now it feels like it's taking me forever to get back to where I was. Since eating wheat for the biopsy I am having MUCH stronger reactions to glute. And much quicker. I think I've screwed up every day since I started and today, at around 12 I realized I had gotten severely glutened yesterday (I think it was salsa) and I just wanted to crawl in a hole and die. I've been so anxiou and upset all day and I can't even take my ativan because I found out the hard way this week that that too has gluten in it. I tried to take a nap but I was too upset. I know the feeling about going to bed and praying not to wake up. I don't do that, I just pray that I will wake up tomorrow and feel better.

I know how you feel. Once you've had horrible experiences with depression you do develop a PTSD reaction. Every time I get bummed out, legit or not, I think "Oh God, here we go again" and I get so scared.

But hang in there. I'm sure your reaction is a food one and you will NEVER end up where you did before because now you have knowledge- not to eat gluten, the warning signs that a depression really is coming on. I'm thinking of you, Beverly

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Guest nini   
Guest nini

Oh Stephanie, I hope by now you are feeling much better. I struggled with severe anxiety and depression for so many years and just recently was fiinally able to wean myself off of the Paxil. Depression really sucks, but knowing that the underlying cause was/is gluten is so much easier to deal with.

I went out to dinner with my family tonight for my birthday (Mexican) and I'm dealing with a little anxiety that I deal with everytime I eat out, did I get glutened????

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KaitiUSA    7
And thanks, Kaiti - and nice new avitar! Much more seasonal! :D

Yep, people have been telling me I should get a new one...just never got around too it... but it sure was time :D

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skbird    0

Thanks Beverly and Nisla!

I am fine again, thankfully!!! It's amazing to read what has been written to this thread - you really feel like you're the only person who knows exactly what it feels like to be depressed like that - and then you find out others have felt the same exact way. It's really surprising!

I too think I had depression most of my life but it was only when I basically shut down that I was finally diagnosed. Also had a really scary panic attack while driving on a busy street in Sacramento - got tunnel vision, the whole 9 yards. Was totally incapacitating. I had hurt my back and was taking Soma for it and lying in bed a lot. After a week or two of that I no longer was able to leave the house... lasted most of the next 3 years. I would get going every so often but then be right back in my bed. I hated it!

I don't think I wanted to die but I do have some journals and writings where I talk about wanting to crawl into some dark cave and never come back out. So yes, it's really scary to feel that at all again and have to wonder, in that state of mind, if I'm going to go right back through it all over again and maybe not escape that again.

Today I seem totally fine, no knuckle/joint pain, no depression, life is good again (of course it's been nice here the last few days and now it's raining!!! sigh...)

Thanks for your support. It means the world to me. Really.

Take care

Stephanie

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bean    5

Stephanie,

Yay! I am so happy that you are feeling better :)

It has been really good for me also, to see that there are other people who have emotional reactions to gluten. It actually gives me a lot of hope for my future. Though I would never wish heartache on anyone, I am so grateful to you for opening up in this forum. If you (and everyone else who has done the same) didn't write about what you go through, I would never know everything that is connected to Celiac.

When I first came on celiac.com I read a few posts about depression, bi-polar disorder and anxiety. You probably have no idea how excited I got ;) My dad is bi-polar, and has been hospitalized 3 or 4 (?) times because of his suicidal tendencies. He's actually been pretty suicidal for about 15 years - almost continually. *I* have had to be the one to stand in the doorway of the car to stop him from driving away, or take the pills from him, or lock him in his bedroom so that he can't leave way too many times. Although I know how much pain *he* is in (emotionally) - it has also caused me a great deal of pain - and my mom, of course. Now that I understand that there's such a high probability that his emotional troubles could be related to celiac, I am thrilled to think that there is hope for him - and that our family might finally be able to get out of this hell that these emotional struggles he has had to suffer have put us all through.

(wow that was a long sentence :huh: )

I am so sure that he has Celiac it just makes my head spin. And like what you've been through, he is completely incapacitated. He hasn't worked for about 7 years - only leaving the house to go to doctors appointments. He is so terribly sad and most days doesn't even get out of bed. :( He's also been have ECT (electro-convulsive therapy) for over a year now - at least every 3 weeks - which scares the hell out of me. (His doctors said he wouldn't be doing it for longer than 3 months in the beginning :angry: )

Anyway (am I rambling?) - I just wanted to say thanks for posting all your stuff!

- Michelle :wub:

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Guest nini   
Guest nini

Michelle (((((((((((HUGS))))))))))))))That has got to be tough.

I'm convinced that both my parents have celiac. My dad is at least trying to see if going gluten free will help him. But my mom, she's another story. I'm convinced she has undiagnosed schizophrenia and she's always had IBS probs.

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jknnej    1

You poor thing! I hope you are doing better now. I have had a lot of problems with anxiety and some days it feels like you can't even control your reactions to things.

Hang in there!! Come here when you need us!

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skbird    0

You guys are THE BEST! Seriously - if I'd had a group I could write into years ago and get support like this, I'll bet I wouldn't have sunken as low as I did back then.

I'm feeling really good today - after all that I had a really great weekend, went on a long bike ride (first time this year), went to the farmers market, saw a great movie (Hitchhikers Guide to the Galaxy) and then, to top it all off, I played bass yesterday in a garage band jam. Something I've never done before but I had a blast and am looking forward to doing it again! Wow, it's been a long time since I've tried something new and enjoyed it enough to look forward to the next time.

What a perfect rehabilitation for last week's major blues!

Thanks all of you, I really really appreciate your thoughts and well-wishes!

Stephanie :D:D:D

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