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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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    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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