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Member Since 16 May 2012
Offline Last Active May 22 2015 09:45 AM

#819826 Having Trouble Accepting The Diagnosis

Posted by on 26 August 2012 - 08:30 AM

I can definitely understand where you are coming from when the diagnosis is a complete shock. I was able to eat pasta, pizza, bread without any issues at all. Like you, I never had GI symptoms pre-diagnosis and the only symptoms I ever struggled with were anemia, acid-reflux, and some chest pain/burning from time to time. I thought these issues were unrelated and tried to manage them on my own. No one in my family had gluten issues and I was NOT underweight, in fact I was gaining weight steadily and couldn't seem to get the weight off no matter how much I tried to diet or exercise. A few days of stomach pains at night and one not so normal colored bowel movement landed me in the GI's office just to make sure everything was ok. She thought my red stools were due to a cherry slushie that I had the day before but figured she'd run some blood tests anyway. I got a call two days later, on May 3, 2012, at work thinking I would hear that everything was ok and to lay off of slushies for a while. Instead I heard, "Laura, your tests came back positive for Celiac disease." My TTG levels were above 100 and they were supposed to be lower than 3 (I think), so the diagnosis was confirmed. I was told to go gluten free that day (not knowing what the hell that meant) and my endoscopy was scheduled for several weeks later. Even though I went gluten free, it still showed blunted villi.

I was scared, confused, and shocked that I apparently had Celiac for quite some time and never knew. It was overwhelming and I wasn't sure where to start. During my first week after the diagnosis I remember thinking to myself that I had two choices - either mentally fight this because it didn't make sense, or accept this diagnosis and begin do whats right for my body. I chose the latter, got myself a dietician who is extremely knowledgeable about Celiac, starting reading any information that I could get my hands on, and began my journey...

Although I NEVER reacted to gluten foods prior to my diagnosis, since going gluten-free, my body has changed and is now able to react to tell me that I've eaten something it "doesn't like." Now when I get exposed to gluten, my stomach bloats until I look like I'm 8 months pregnant, I get horrible abdominal pains, joints swell up and stiffen, and I have horrible mood swings. Even though I had accepted the diagnosis, THIS confirms for me that I do have Celiac disease and I am now thankful that my doctor was diligent enough to test for it. If she didn't, I would still be unknowingly poisoning my body and would become even sicker in the future.

Yes, this is difficult for all of us to wrap our minds around - if you read the forum, each of us have different symptoms and varying levels of complications from this disease. The silver lining is that we CAN treat it, and we can feel better...I am so thankful for everyone on the forum who lends their suggestions and support, without it I think I'd still be scared and confused.

You had BOTH positive blood work and a positive endoscopy - having both is considered a "done deal" amongst us here. My suggestion to you is accept it for what it is - I feel the more you question it, the more difficult it will be for you. Constantly questioning something, especially your medical health can put a ton of stress on you which you don't need. There are a ton of people on here who I consider to be experts, even more so than my doctors, and its been incredibly helpful. Feel free to vent, ask questions, and share your experiences with us. I will definitely keep you in my thoughts. Best wishes!
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#818833 Gluten And My Depression Experience

Posted by on 20 August 2012 - 07:29 PM

I can really appreciate this post from all angles, as I have Celiac (obviously), have struggled with mild anxiety for most of my adolescence and young adult life, and ironically enough am a mental health therapist for children and adolescents. Its interesting, when we're in school doing our clinical training, they ALWAYS teach you that the FIRST rule of diagnosing is RULE OUT MEDICAL CONDITIONS FIRST. If its not an underlying medical condition, then proceed with psychiatric diagnosing. In working with many social workers, psychologists, and psychiatrists, I rarely see them looking towards medical conditions when a client comes in with mood or anxiety issues.

Being diagnosed with Celiac has been a fantastic life lesson for me, especially when it comes to my work with clients. In fact, a coworker of mine called me last week to get some advice about a 17 year old female in one of our residential programs who is displaying significant anxiety and is starting to refuse certain meals. My first response? "Have you tested her for food intolerances?" There was a long pause followed by "Huh?" from my coworker. I explained that it might not just be for "attention" but maybe this young lady has some food intolerances which is making her feel sick and causing her to avoid certain foods. After we rule this stuff out, then we can look at what might be behind her behaviors. And the kicker was the response, "So does this mean that I should get nursing staff involved??" "YES!!!!"

Whether the Celiac or the anxiety came first, both are very real, and very frustrating. Hang in there! I hope it gets better!!!
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#818195 Dealing With Changing Sensitivites?

Posted by on 16 August 2012 - 05:57 PM

I often wonder if my sensitivities are changing too - I never had GI symptoms before my diagnosis and could eat whatever I wanted, keep it mind I was drinking about a gallon of milk every day and a half. But now things are different and I'm either getting CC'd or I'm developing new sensitivities, but I just cant put my finger on it. I'm also trying to keep in mind that it could also be my body's healing process, as I'm only 4 months into being gluten free. Whatever it is, its frustrating. Not that I would EVER do this, but at times I get so frustrated that I almost want to eat something like pizza or bread just to see what a purposeful, real glutening feels like so I can weed out other symptoms/foods. But I wouldn't feed myself anti-freeze or bleach, so I won't eat gluten. Cant do that to my body. I hope you can figure it out soon and start feeling better!!! You'll be in my thoughts...
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#814666 Outrageous Things I Have Said And Done!

Posted by on 29 July 2012 - 03:56 PM

My favorite that I've had to say is.....

(To weight trainer)
"I'm sorry, by mistake I ate oats today and now my knees are swollen and can't move...so I'm going to have to take it easy today..."

(Blank stare and crickets chirping) :)
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#814461 Just Diagnosed.....so Many Questions!

Posted by on 28 July 2012 - 05:12 PM

Thanks everyone... I have been fishing around this site quite a bit since I was dx. This site has been a lifeline. I'm looking into downloading that app right now as I type lol! That's amazing that they have an app for that lol. Thanks for everyone's help.. Everyone's so kind even when I feel kinda miserable... Is it crazy of me to be so frustrated that at times I'm almost in tears? I know I probably sound like a child but I'm a little upset... Went to a family get together yesterday and the only thing that was gluten free was the salad I ate with no salad dressing because I wasn't sure if it was or wasn't gluten-free. Frustrated!

Your very welcome!!! I've also found the apps "Gluten Free Registry" (its free) and "Find Me Gluten Free" very helpful too - they will pinpoint your location and then pull up a map showing you all the gluten free restaurants and stores in your area. The best thing about it is they have reviews that show other people's experiences there - some you need to stay away from! I hope those are helpful to you.

And no, its not crazy for you to be frustrated - I was crying off and on for about the first week or so. I felt different, isolated, and lost. Please keep in mind that you may be experiencing gluten withdrawal. Gluten acts on opiate receptors in the brain, so when you start eliminating it from your body, your brain can react and make you more moody or feel a bit depressed. This WILL go away! :) But everybody's body takes different amounts of time to recover, so please don't get frustrated if it doesn't go away quickly. Mine lasted a couple weeks - I was very moody, irritable, and felt like I was walking around in a fog and couldn't concentrate.

I also went to a wedding and a graduation party at a reception hall less then 2 weeks after being diagnosed. I was too scared to eat anything and left feeling really upset. I thought I would never be able to go out again. But now I have a better idea of what to look for and what to stay away from, and I'm not afraid to call a venue beforehand and ask if there's any modifications that could be made so that I can eat. Regarding family functions, I brought my own food (something that I was REALLY excited to eat) and it wasn't so bad.

I hope you continue to come onto the forum and I'm so happy to hear that its been helpful to you so far. I will keep you in my thoughts!!!

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#810897 Degrees Of Celiac?

Posted by on 13 July 2012 - 05:58 PM

I was diagnosed in May of 2012 and I am definitely a silent Celiac. No GI symptoms and I felt fine after eating gluten nearly all day, every day. I had been iron deficient for YEARS with no success and had some mild to moderate problems with joints - TMJ, knee pain, etc. Acid reflux was a problem along with bloating and horrible chest gas pains that ended me up in the hospital once with doctor's scratching their heads. I only went to a GI doctor after bad stomach pains that lasted for 3 days. I'm thankful that they tested me for Celiac and I came up positive on the blood work and endoscopy.

Please keep in mind that although your GI system didn't seem to react to gluten prior to going gluten free, you most likely will become more sensitive to it after being gluten free for a while. I've only been gluten free for about 2 1/2 months now and by accident I ingested gluten 3 days ago and I felt it almost immediately. That would have NEVER happened to be before I went gluten free. I was in the bathroom that night with nausea and D and have been feeling pretty fatigued and sore ever since.

Celiac is celiac and it attacks our bodies regardless of what our symptoms present as. Please keep reading the forums and asking questions - there are incredibly knowledgeable people on this site! If you continue reading on here you will learn quick! I know I did! :)
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#807160 Newly Gluten Free And Sacred

Posted by on 28 June 2012 - 06:53 PM

If red meat is too difficult for you to digest, try eating grass-fed red meats/steaks. Since they are not pumped full of antibiotics, steroids, and all that other crap, its much easier on the stomach. This was a recommendation from my nutritionist which I have been following and it's been working so far! Yes, they are a bit more expensive, but if it can expand your diet, it may be worth a shot...good luck!
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#807158 Sick And Tired Of Being Sick And Tired

Posted by on 28 June 2012 - 06:40 PM

This is my first post, and my apologies if this is posted in the wrong area of the forum. I have been reading several posts about people with Celiac Disease and a weak immune system, however most of the topics have shown that it was due to going off of their gluten-free diets.
I started eating gluten-free since I was initially diagnosed through a blood test and later followed up with the biopsy (the day day before my biopsy was the only exception to not eating gluten-free) about 2 years ago this September. Although I do not get nearly as sick as before, I still pick up basically everything that goes around and take a long time to get over it. I also get really weak for about a day every two weeks. I am currently on Midodrine due to syncope fainting spells caused by low blood pressure.
Is there anyone else here who experiences/experienced this? It's been two years and I am extremely frustrated to say the least. It's difficult enough to follow a gluten-free diet at times while also still experiencing some of the side effects I was told should have subsided by now. I am extremely careful of my diet, and I hardly eat out. I have my own gluten free section of the kitchen to prevent any cross-contamination.
Any support is greatly needed and extremely appreciated. Thank you so much!

You definitely are in the right section of the forum - I am not an expert as I was only diagnosed May of this year, but Celiac disease calls for a steep learning curve so I've had to learn quick. Before going gluten-free I was pretty fatigued most of the time and it was either related to the Celiac itself or my iron deficiency. I also experienced syncope for YEARS before realizing that it was most likely related to the Celiac. I would faint in the shower, at the gym, and yes, even during intimate moments with my fiance (so mortifying!!!) Here are my thoughts - are you taking a multi-vitamin or supplement? Have you had blood work to see if you're deficient in anything? They have gluten free supplements at GNC and Whole Foods and I believe that it helped tremendously for me. If you're not taking one, I would recommend considering it. Also, I've been seeing a nutritionist who is experienced in working with Celiac patients who is also helping me to eat the RIGHT foods. Going gluten free isn't always healthy if you're loading up on the gluten-free replacement foods. The nutritionist is showing me how to get nutrients into my damaged GI system in different ways such as making homemade beef/chicken broth to ease the GI tract while providing nutrients. She also has me juicing now to get additional fruits and veggies into my system (which I HATE eating). I feel your pain on this but there are tons of incredibly knowledgeable people on this site who I know could give you great information as well. Feel free to vent anytime...I hope some of this was helpful!
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#807154 Accidental Exposure

Posted by on 28 June 2012 - 06:24 PM

If you have a Whole Foods store near you, they sell a ton of different gluten free sauces that taste great. Gluten-free Tamari Soy Sauce, gluten-free Thai Peanut sauce, gluten-free Teriyaki, gluten-free BBQ sauce - the list goes on...
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