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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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      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
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