My name is Alicia and I am new to this forum. I joined because I feel like nobody understands what I am going through and I am looking to find some fellow celiac disease patients who may be going through the same frustrations as I am. I was diagnosed with Celiac Disease about two years ago. I was diagnosed on "accident" because I was having persistent tongue swelling that would come and go for no apparent reason. I had been to many Allergists, an Oral Surgeon, Ear Nose and Throat Dr. and finally was diagnosed with celiac disease by a gastro at University of Pennsylvania. Since, I have been frustrated wondering if I definitely have celiac disease because my only symptom prior to diagnoses was diarrhea after eating Italian foods or anything with wheat in it. I followed a gluten-free diet for about 6-8 months before I became extremely frustrated. I met my fiancee who is understanding of my celiac disease. However, it is difficult to explain the symptoms to other that do not fully understand the disease. I got pregnant with my son and I began to read about how bread and wheat were integral foods to ingest while pregnant because of their nutrients, so I ignored doctor's orders and began to eat wheat (thinking that I could have overcome celiac disease...to just find out after giving birth to my son that celiac disease doesn't go away... you can just maintain it). My celiac disease has gotten much worse and I am now lacking Iron, as well as Calcium that I need. I am extremely tired all of the time. When I explain that I am fatigued, I don't think that anyone understands how tired I really am. I could fall asleep at any moment. I have been frustrated because of my weight gain without cause, while not really being able to lose much of it. Also, my liver function tests have now come back abnormal twice, which I am told by my gastro is due to my celiac disease. I feel like it is very difficult for me to provide for my 7 month old, yet alone keep up with him and my fiancee. I am discouraged while attempting to obtain my MBA online because every time I begin to do well in a class, I just have a set back because of my celiac disease. Most recently, I have been very depressed because I have been placed on an extremely high amount of Iron and Calcium to help with my depletion. However, I feel very sick from the supplements and don't know what to do... the doctor suggested seeing a Hematologist. Has anyone on the forum ever had to do this and if so, what needed to be done?
I understand your pain. I am currently writing a book on my emotional pain and journey after being diagnosed.
That being said, you SHOULD NEVER stray from the gluten free diet. By eating wheat while pregnant, you put your baby's life and your life at risk. You are very lucky that nothing happened!
I was diagnosed during the final year of my master's program, and I went through everything you brought up. It was very discouraging to see myself fall behind at a result of my body's weakness. Make sure that your teachers are informed and provide them with medical documentation as soon as possible.
I am in my midtwenties and was diagnosed two years ago. I felt like I was in my 80s with my iron levels so low. But after staying on my supplements, following an absolutely strict gluten free diet, eating healthy and exercising, I became back stronger than ever after only 1 year. Initially, I was so weak that the only exercise I could do was walking. I am now so strong that I can swim, run, and lift weights on a daily basis. If you stick with it, and if you develop respect for yourself and for your body for the miracles of healing that it is performing right now, you WILL recover stronger than you have ever been. Not only did your is your body repairing from celiac, it also just created life, so give it some credit and some love. (I had a major issue with being angry at my body, I don't know if you are going through that)
Best of luck! You must not forget - YOU WILL RECOVER, and you WILL be stronger physically, mentally, and spiritually than you ever were before!