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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.

I Cant Let It Go
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jasonD2    11

i still obsess over everything that lead to all my digestive health issues and cant help but feel that everything i am living with today could have been prevented.

AFter i contracted giardia in 02 and developed severe gastroenteritis followed by 5 months of gastritis i just went back to my normal diet and pretty much ate everything, except for dairy which was an immediate problem right after i got sick. i remember consulting with some people and they told me how i need to cut out all allergenic foods and take special supplements to heal my gut...i was too stubborn to change and didnt. even if i loaded up on probiotics and glutamine and cut out wheat i woulda maybe prevented all this from happening. If i had just taken antiparasitic meds/herbs while on the river trip in Oregon i wouldve never gotten sick. so instead here i am today with a barely functional GI still trying to figure out what i need to do to get better.

Does anyone else feel this way? The path that lead to my illness was as follow:

Met girl (01)---> developed strep & went on antibiotics ---> 3 months later developed prostatitis and took 5 months of antibiotics --->was under extreme stress due to a bad relationship ---> broke up with girl (02)--> went on river trip and contracted giardia

I feel i couldve taken so many steps in that timeline to prevent what happened to me. this may sound silly but i still feel that using condoms with spermicide caused my prostate inflammation (i am allergic to it)..they never found evidence of an infection but still pumped me full of antibiotics. SO something as simple as using a different condom could have prevented all of this

Anyway, i pretty much beat myself up on this daily. If i was smarter and took better steps to educate myself on things back then as i do now i would be sitting here eating a bowl of cereal with milk and french toast.

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IrishHeart    1,633

Jason,

Yes. I often feel like I "should have " done things differently. I also have a lot of anger toward the medical profession for leaving me to suffer for years. I went through a bout with giarrdia myself back in 1999 and the GI doc never told me a thing about using probiotics after dousing me with antibiotics repeatedly. They symptom-treated me (it's just IBS baloney) for years.Once I figured out that I needed to take another path, I consulted alternative practitioners and I DID follow a special diet and take all the supplements (hundreds of dollars for nothing) and I still remained sick. I was the one who figured out the gluten issue.

So, you can't second guess what might have been, hon.

Here's what I think you may want to do now. Focus on getting well. Give yourself a break. Beating yourself up does absolutely no good. This is NOT your fault. Trust me on this.

If your best friend was going through this, wouldn't you tell him the same thing? Be supportive, loving, encouraging to him.?..well, treat yourself that kindly, kiddo! You have been through a lot and now, you need to be kind to yourself and heal.

If you still can't shake this endless ruminating, maybe you should talk to someone you trust. I "lived in my own head" for awhile, blaming, worrying, going over and over stuff and all the" what if's"...and then I realized how much energy that was using up. It's not worth it.

Let it fall away. Feel better soon!

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tarnalberry    314

If the "I should have" thoughts are that often, and are interfering with your life and happiness, go see a counselor. That is what they are there for, to help you process things that are too big to process alone. Our culture is one of the rare (dare I say dumb) ones that thinks we should be able to handle everything ourselves. Fat lot of good it's doing our society.

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ravenwoodglass    1,214

Jason you have been beating yourself up for this for a very long time now. Please get the counseling that has been encouraged by so many for so long. We do care and do wish we could help but the one who has to be the person to end these feelings is you. It is not a sign of weakness to seek professional help, it is a sign of strength. I do hope you will do so.

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I can relate to you somewhat, Jason. I went for a college physical in my 20s (going to grad school) and was very anemic (7.0). The doctor ran all sorts of tests, but nothing came back positive. I even had two bone marrow aspirations (pelvic) trying to find the cause. No diagnosis and I limped on through life feeling poorly for YEARS and YEARS. Terrible anxiety/depression issues and gut issues. I do feel anger about all those "lost years", but then again, I also feel hopeful that the future will continue to brighten. As I heal, I find myself feeling less obsessive about the past. Don't beat yourself up...there is hope for better tomorrows.

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jasonD2    11

I appreciate the responses but im getting a little tired of everyone telling me i need counseling...thats not why i come here. I come here to share stories and experiences and to vent. Its a cliche response that i can get from pretty much anyone I talk to. Telling me i need counseling is counterproductive and is not going to make me do it any sooner..trust me. So again I appreciate your concerns for me but please STOP telling me i need counseling

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kareng    1,992

You probably don't read other peoples topics on here, but if you did, you would see that " Get counseling" is seldom anyone's recommendation. Wonder why they would say that to you but not 98% of the other posters? Seems odd that it's the response you get from most others you talk to. I never get that when I tell my friends about my problems. Hmmm...

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ravenwoodglass    1,214

You are not the only one who beats yourself up, I spent years going over every misstep I have ever made in my life (and being much older than you there have sure been alot!) and dwelling on them endlessly until I felt I didn't even deserve a life. Then a very smart person who I see regularly, although not as much now, told me to start looking at the good in my life. The good I do for others, the good I have done for myself. She taught me that my beating myself was selfdefeating and that I needed to concentrate more on the here and now. She taught me to try not to dwell on what got me here but on the here and the positive things in my life instead. For me listing and writing 'letters' to myself about happy memories and the things I have succeeded at was helpful but don't know if that would be the case for you. Your far from alone in your feelings. Lots of us have them. We all make mistakes and some of them have dire consequences that we can't change. Forgive yourself for those mistakes and try to look forward rather than behind. You can't change the past but you can create a better future.

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IrishHeart    1,633

I echo Raven's words. As I said, I've been where you are. From the responses, it looks like lots of us have! At some point, you have to let it go and move forward...or you'll be stuck for good.

You have your whole life ahead of you! I think Franklin said "Insanity is doing the same thing over and over again and expecting a different outcome. " I drove myself insane with the "what if and maybe I shoulda" wheel going round and round...then, I realized "what a waste of my energy!!" The past is gone. Learn from it.

Everyone responded to you because they care and because they have been where you are. You asked "does anyone else feel this way" and we answered honestly YES! because we FEEL your pain and we all offered our heartfelt advice about HOW to let it all go. For some, it means going to someone who can help sort it all out and get rid of it. Or at least change our response to the thoughts that keep us "stuck".

You'll be so happy when you no longer endlessly ruminate about things you cannot change!! What a burden to cast off. Truth is,we can't rewrite the past, BUT we can change our thinking and our actions and create a better future.

It's time to move on.

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psawyer    687

Jason, I have been on the board over six years now, the majority of that time as a moderator.

There have been very, very few instances in that time where a member was advised to get counselling. I would venture to say that I could count those members on the fingers of one hand.

I don't know if you read any topics you did not start. I can, however, say that I do not recall ever seeing you post in a topic you did not start. So, when you say you come here to "share" I find that not to be descriptive. Most of us here share by trying to help others. You only seem to be interesting in taking--never giving.

You come here over and over with the same questions and, not surprisingly, keep getting the same answers from many different people. Maybe it is time for you to reconsider whether everyone but you is wrong about your issues. It does not seem to be a productive use of the members' time to keep offering ideas which you clearly do not want to listen to.

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SaraKat    16

A little bit. I was also anemic for years with no explanations. Everytime I would get a physical I would always be anemic. No Dr made it seem like a big deal, so I didn't either because I felt OK, always kind of tired, but got by. Then, in 2009 I started getting the joint pain (in the ribcage) and I had a few more blood tests and this time they tested ferritin, mine was level 4- the Dr still didn't think that was a big deal, even when I questioned it.

I think that angers me the most. How could someone with a ferritin of 4 not have something else going on? I feel if a patient has unexplained anemia celiac should be tested for.

It is easy to get mad and I do, but I just try to think positive (I know not easy)!

Good luck!

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burdee    80

i still obsess over everything that lead to all my digestive health issues and cant help but feel that everything i am living with today could have been prevented.

I feel i couldve taken so many steps in that timeline to prevent what happened to me. this may sound silly but i still feel that using condoms with spermicide caused my prostate inflammation (i am allergic to it)..they never found evidence of an infection but still pumped me full of antibiotics. SO something as simple as using a different condom could have prevented all of this

Anyway, i pretty much beat myself up on this daily. If i was smarter and took better steps to educate myself on things back then as i do now i would be sitting here eating a bowl of cereal with milk and french toast.

Hi Jason:

We've exchanged lots of pms. So you know my history of chronic gut infections and now chronic respiratory infections because I have neutropenia. I can also pinpoint the cause of my gut infections to accepting a diagnosis of 'gastritis' (when I really had undiagnosed celiac disease) and taking acid blocker pills, which further reduced my stomach acid, which allowed multiple food born 'bugs' to travel straight to my intestines and cause infections. Then I treated those 8 different bugs with 'bug' appropriate antibiotics, antiparasitics and antifungals for 4 years and followed that with high dose probiotics.

I assumed I would be ok after I eliminated my last gut bug. However, I recently learned that neutropenia is often caused by longterm use of antibiotics (esp. Vancomycin, which I took for 6 months of recurrent c-diff). I'm not making much progress treating neutropenia, esp. because I'm in a vicious cycle of respiratory infections because I have low immunity caused by low white blood cells. In turn those infections further deplete my white blood cells.

Like you, I could berate myself for making poor decisions, which brought me to where I am today. However, years ago I read some powerful advice, which sustains me through my current struggles: "You did the best you could with what you knew at the time. When you know better, you will do better." I tend not to make the same mistake twice. I make new and different mistakes, but I learn from my old mistakes and don't repeat them. Rather than berating myself for previous mistakes, I need all the energy I have to cope with the consequences of my mistakes and never repeat them.

SUE

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srall    112

Jason, when I write what I'm about to say, I want you to understand it's coming from a caring and gentle place. I too have noticed that you seem to be willingly spinning your wheels. If you are not willing to get counseling, may I suggest that you consciously approach your life from a place of gratitude?

I have an only child. I believe, but am not certain that my celiac (which is self diagnosed, I feel like I should state that) was triggered by this difficult pregnancy. After she was born we struggled for years to have another child, including expensive fertility treatments. I've only seen my husband cry 2 times and the hardest was when we realized I was going to miscarry a baby. He threw up in the waste bin at the ultrasound when we saw the fetus was dead. This was a devastating time for us as MANY women on this board understand.

When my daughter was very small, I began to struggle with my health. I was feeling nausea and fatigue all the time. I struggled with a bit of depression and demotivation. I just couldn't be living my life like this. Especially when I looked around the rest of the world and saw how good I had it. I mean...I stay home with my daughter, we are financially sound, healthy, in a safe neighborhood, have hundreds of friends, we travel. I had a health problem that could be managed with healthy food...AND I figured it out relatively quickly (6 years) and I could begin to feel good and have energy again.

I don't know if you believe in God, and I really don't think you have to to do this, but I started thanking God every morning for every blessing I could count. It's sort of like smiling when you're sad. You can trick your body into thinking it's happy. Honest to pete, it took a good year, but I began to let go of that phantom second (and third) baby that was never going to come. I learned to love cooking and became a foodie. I love my food. I love my family. I am involved with children in the community so in a way I have a lot of children, and one amazing daughter that makes my heart burst with love.

With all this going on in my life, I'm going to worry that I can't eat some bread and milk?

Good luck. It's really a much easier way to approach life. I promise.

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cahill    189

As I read these responses I am crying, not because I am sad, because I see genuine concern, respect and understanding.

Understanding that can only come from being in the same place at one time or another.

I love this forum and am grateful , so extremely grateful to have found it .

Thank you

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kareng    1,992

Srall,

Sorry. Tried to hit the plus but they are so close together, I must of hit the minus. I have a touch screen.

Just trying to let you know I liked your answer.

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IrishHeart    1,633

As I read these responses I am crying, not because I am sad, because I see genuine concern, respect and understanding.

Understanding that can only come from being in the same place at one time or another.

I love this forum and am grateful , so extremely grateful to have found it .

Thank you

Ditto on the tear-filled eyes!!...and very grateful for the messages, the support and the HOPE you all provide. I have felt so alone dealing with all of this until now. I fought hard to get well, but I needed compassionate support from those who also deal with this disease. My family --as much as they try--just does not "get it"--but YOU all do.

I , too, start each day in gratitude for what I HAVE-- not what I have lost.

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tarnalberry    314

I appreciate the responses but im getting a little tired of everyone telling me i need counseling...thats not why i come here. I come here to share stories and experiences and to vent. Its a cliche response that i can get from pretty much anyone I talk to. Telling me i need counseling is counterproductive and is not going to make me do it any sooner..trust me. So again I appreciate your concerns for me but please STOP telling me i need counseling

ok, try yoga instead. the philosophy aspect can help you shift thinking patterns as well.

and really calling something cliche just because you hear it repeatedly is silly - especially if you're just doing that to overlook the validity of it.

at this point, you "share stories" so often that it's like a dependence, and our responses, especially the "support" of "it's totally normal to feel that way" are getting to the realm of rewarding you for not dealing with your feelings in a positive way. we're enabling you, in a sense, to stay unhealthy (mentally).

so, since you don't want encouragement to make positive changes, I will say farwell to you on the forum in posts of this respect, since anything else at this point is just going to keep you unwell, and I won't contribute to enabling you to do this to yourself.

since I won't be reading any longer, I really do wish you well, and hope that you find your way out of this pit one (healthy) way or another.

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