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Freaking Out
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I went for my first doctor appointment in 7 years five days ago. I talked to my doctor about depression/anxiety, irritability, weight loss (60 lbs in 6 months) I had quit drinking soda bc i believed it was bloating me and making me gassy but it didn't really help. Also talked about me believing I was anemic due to my addiction to ice. He told me he wanted to run some blood tests for the anemia and possibly thyroid. Well he also tested me for celiac and I got the call yesterday that I had tested positively for celiac and I was anemic and had a vitamin D deficiancy. They are setting me up an appointment with a GI doctor. After reading up on the symptoms it all makes sense, but I am still scared about how big of a change this will be. I am 25 and a mother of three. My husband doesn't think it is a big deal but this is serious right? I should be freaking out a little right? Also, should my children get tested? Just need some comfort I guess.

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No reason to freak out. This condition is a lot easier to manage than others.

Yes, it is serious. But don't start the diet until after all of your testing is done.

Yes, your children need to be tested as this condition is genetic.

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I was scared of the possibility too at first, after all the research I did I realized it is such an easy disease to manage. To begin with you don't have to rely on doctors and medication, you cure yourself, naturally. I say cure because all symptoms and associated risks of celiac are diminished once clearing the body of gluten and your intestines heal. Also, gluten is a lot easier to avoid than you think, you can still drink all liquor, most wines and some beer, 5 of the 6 food groups are naturally gluten free and many restaurants and food chains are starting to adapt to gluten free with employees trained on cross contamination. If we were in the 80's I would be a bit more frightened but the world is now opening its eyes to celiac and the gluten free world.

Really, if you had to have any disease on this planet I would say celiac or hypothyroidism would be the top two for easiest to manage and smallest risks of other issues. Celiac is serious as in it's a disease however as for as diseases go it is not serious at all (once treated).

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your doc is a keeper!

Yes! And you had answers right away!
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I was diagnosed in February and it was quite a surprise to me as well. For me it felt both daunting and overwhelming in the beginning, but it does get better.

The newbie section of this forum has a lot of good information to get you started. It is probably worth having your husband read some of the information as well - the path will be a bit easier to navigate if he is there to support you. (My boyfriend was a bit skeptical at first as well, but it didn't take long before he was on board and now is always looking out for me).

It is a learning process, but will get easier with time...hang in there!!

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Thanks everyone!! I know that it is manageable but I work in a grocery store that isn't gluten friendly and I was randomly checking items and just about everything I checked contained some sort of gluten. It is just a big life change I guess. I have already decided that I will be fighting for more gluten free options in my store.

And also my doctor is great!! It is actually funny but my original doctor had left suddenly so the office distributed me to him. It was like God sent me to him!!

I go Thursday to the GI doctor so wish me luck!!

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... It was like God sent me to him!!

...

Well maybe he did! :)

Do stay with eating gluten until your testing completed. Here's some tips for when you do start the gluten-free diet.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non-celiac wheat sensitivity article

http://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Thread For gluten-free, Dairy, Soy, Corn And Nightshade Free Recipes

Super Easy Meal Ideas Anyone?

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As you change the way you cook and prepare food, your entire family will benefit - they will be eating healthier too!

Get your children tested as soon as possible - even if there are no symptoms. Don't mess with their diets at all until testing is done.

The diet takes a bit of learning at first, but once you figure out your favorite foods and alter your favorite recipes, it is really not that hard. You will soon be feeling so much better - it will be worth the hassle.

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Met with my GI doctor yesterday!! He looked at my bloodwork after introducing himself and said "very interesting. I just met you and you are already a very interesting patient." He said he was 90% sure I had celiac sprue but wanted confirm before changing my life. I go January 8th for my endo. If confirmed he is going to send me to a nutritionist. I'm so happy that my doctors have taken charge!! Thanks for all the advice!

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Met with my GI doctor yesterday!! He looked at my bloodwork after introducing himself and said "very interesting. I just met you and you are already a very interesting patient." He said he was 90% sure I had celiac sprue but wanted confirm before changing my life. I go January 8th for my endo. If confirmed he is going to send me to a nutritionist. I'm so happy that my doctors have taken charge!! Thanks for all the advice!

Just my 2 cents.....if your biopsy is negative, please consider going gluten free anyway. Biopsies are very unreliable, and false negative results are very common. With your positive symptoms and bloodwork, you should not be consuming gluten. GI docs put WAY too much emphasis on that biopsy. You should also request genetic testing to see if you have the genes. If you do, your kids need to be tested as well.

Good luck!

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I agree. While a positive biopsy will indeed "comfirm" the diagnosis, a negative biopsy does NOT mean you don't have it. Don't let the doctor tell you otherwise. With your symptoms and blood test results, it is pretty obvious you should not be eating gluten.

Cara

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    • OK so been to the doctor, they've sped up my referral and I should get the appointment booking form in the post shortly. They've said stay off the gluten until I have a date for the appointment then in the weeks leading up to it go back on - thoughts? I seem to be getting some strange symptoms at the moment that have only happened since trying to remove gluten, do these sound familiar to anyone? dry forehead, just starting to go red \ itchy in places. Treating with E45-type cream tender scalp and sides of head, almost like a pulling feeling and a bit sensitive to touch. Scared this one matches the symptoms of GCA, a particularly nasty autoimmune disease that can lead to blindness 
      Edit: having said that just found this thread and funny enough did wash my hair this morning...
      http://www.celiac.com/gluten-free/topic/50920-sores-on-scalp/ one eye watering and associated fuzzy vision at times, trying to reassure myself it isn't blurred vision due to the point above sometimes bit of a lump in throat sensation, seems to come and go Been reading that some people can't handle rice - I was OK with it whilst eating gluten but have been having it for lunch each day and seem to get worse around 4-5pm so could that be a culprit? How long after coming off gluten would I be able to say I'm at a baseline to know if feeling ill is down to "glutening" vs. blaming it on the body adjusting to the change in (lack of) gluten in food?
    • First of all, welcome to the forum! it's good to have you here. Secondly, I can really relate to the fatigue portion.  it really hadn't affected me until everything hit the ceiling medically for me.  I was constantly tired all the time, and waking feeling rested in the morning. Prone to depression and anxiety, definitely.  It drove me nuts for those first few weeks.  That's when I decided to try going off the gluten to see what happened.  I still dealt with the depression, anxiety at crazy levels, and inability to focus/concentrate, but it had gotten progressively better.  The anxiety got so bad I would have panic attacks in public areas which only ramped up the anxiety because people saw what was happening.  I would encourage you and your doctor to do a full Celiac panel before you decide to try the gluten free diet.  I had my blood work done after I was off gluten for about two months or so.  Thankfully, my levels were still high to register at least a gluten sensitivity.  Since going off gluten for almost a year now, things have started to finally appear "normal".  Whatever normal means for me now.  As I am healing from the 30 years of glutenizing, I combined both natural methods with the medical methods.  If you are interested in the different avenues of natural methods, I would be willing to share with you.  I will be praying for you as you go through this journey. Let me assure you, you are not alone in this journey.  Depending on family dynamics, they can be a great source of support.  This forum is also a great place to bounce thoughts or concerns off of.  Good luck.
    • I doubt it. I would think that would be a questions for the company that make them.    But if smoking makes you feel bad....and you are able to quit for several weeks at a time....why go back to it?
    • Hi. I've noticed that after a break of smoking (2-3 weeks) I feel bad, when I begin to smoke again.  Maybe they contain some additives with gluten??
    • Thank you everyone! Good to know I am not alone with this. I am asking for a referral to a new cardio. Hopefully it will all go away the longer I am gluten-free. It started up in February/March after a gluten challenge and mostly vanished until July when I had a lot of shortness of breath. It absolutely was CRAZY just a few days after the glutening. I was gasping for breath and the beats were all over the place just walking through a parking garage and I was only mildy anemic at the time.   But it seems to "quiver" and do funny things for a bit still. I sort of theorized maybe it was inflammation in the heart because after this last glutening, my head felt like it was in a vice and my eyes would sting or get stabbing pain hurt (that is finally going away thankfully...knock on wood).  The head/eye pressure I learned also happens to my sibling who has celiac and his naturopath told him that sometimes the brain gets inflamed. Hopefully I can meet the new cardio soon and feel confident that he is taking me seriously. It is sort of difficult to feel confident in the opinion of a doctor that your ticker is ok when they are not really listening and end up making you cry. LOL. A friend of mine in the mental health field recently listened to my story of doc after doc and test after test and said that it was akin to the folk story of blind men describing an elephant. A group of blind men all feel one part of an elephant (tusk, tail, ear, tail) and then compare notes only to find they all disagree.  In some  versions they argue intensely. In other versions they have to collaborate and listen to each other in order to "describe" an elephant.    
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