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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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    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
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      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
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