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New Celiac...frustrated


Jess16

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Jess16 Newbie

My name is Jessica. I'm 25 and was just told I have celiac. I've experienced years of abdominal discomfort, anxiety and fatigue. Ive been to many drs for these problems..diagnosed with anxiety, depression, hypogylcemia, acid reflux, tree nut allergy and many other health issues over the years. But I was never tested for celiac...never even heard of it..until the dr called me with biopsy results from my endoscopy. Then I got the blood test and boom I have celiac. I'm struggling with this diagnoses because i feel like I can't eat anything I like anymore and wonder after 25 years of eating gluten what have I already done to my body? I'm already skinny and a picky eater so how am I supposed to cut out half the food I like? Im struggling with all sorts of emotions and frustration with this lifestyle change. If you have any advice to help me deal with celiac, the physical and emotional challenges, please reply.


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kareng Grand Master

Welcome.

Look at these two threads to get ideas of what people eat.

Metoo Enthusiast

Everything you are feeling is normal when you start eating gluten free. The good news is that over a few weeks to 1 month or more you get really good at eating gluten free.

I felt really limited at first, and I don't at all now. (Except for eating out, I still struggle).

I eat greek yogurt and berries for breakfast with honey.

For snacks I eat, apples, bananas, cheese sticks, popcorn.

For meals I make, roast in a crockpot, buffalo chicken in the crock pot, if you need something quick and easy, I make Thai Kitchen rice noodles, and use San-J sauce (soy or orange), with some tuna or chicken.

I make pizza a lot with the Chebe pizza crust mix, my husband and kids both adore this pizza so it works for all the non gluten-free people in my house too.

Cara in Boston Enthusiast

Hi Jessica -

Welcome. The first couple of weeks are difficult - you have to begin to really think about the food you are eating.

But the good news is that in a couple of weeks you will start to feel great - it will be noticeable and you will realize that giving up gluten is completely and totally worth the hassle.

After a few more weeks, it is no longer a hassle. You know what products you like, you've figured out how to convert your favorite recipes and you continue to feel good.

Hang in there. It gets better. Much better.

Cara

Cujy Apprentice

Hi Jessica, I am also newly diagnosed (right on my birthday) and I hear you in the emotion department. Its almost like you have to go through a grieving process, and you go through anger, a deep sadness, almost a depression. Its frustrating and makes you want to scream/cry all the time. I too am going through the same thing. Its very hard for me to tolerate the "could have been worse, at least you have an answer" from people who don't have a care in the world. Of course they are right to some degree, BUT they just arnt experiencing the same thing. Im hoping that from reading the posts on here, you and I can survive this....Everyone on here at least who says, it will get better, is speaking from experience. I can't offer any advice dealing with the emotions because I too need some uplifting something or other, but know that you are not alone.

Angela

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      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
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    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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