I first learned about Celiac Disease during medical school but was unaware that I was suffering from it and had been for years. I was diagnosed when I was 33 years old, about 25 years after my symptoms first started.
As a child I suffered from recurrent stomach aches, cramping, and diarrhea and was told that I had a “nervous stomach.” I remember spending a lot of time doubled over in pain and not wanting to eat.
As a teenager I developed a cystic, itchy rash all over my back and shoulders that left horrible scars (dermatitis herpetiformis). I was told it was cystic acne. I had a mystery “mono-like” illness my junior year and slept for hours everyday after school. My abdominal bloating was so bad during adolescence that I looked like I was 7 to 8 months pregnant at times.
In college I was treated over and over again for stomach and intestinal ulcers but my symptoms got worse instead of better. I had an upper GI (barium swallow) performed which did not show ulcers and was normal. I was referred to a GI specialist for the first time. He did not examine me, diagnosed me with Irritable Bowel Syndrome (I.B.S.), and told me that my digestive complaints were likely due to repressed sexual abuse. When I told him that I had never been abused, he insinuated that I was lying, and recommended that I get counseling and eat whole grains.
I had increasing severe insomnia as college progressed, which seemed to correlate with beer consumption. I remember wondering if I was allergic to beer…
In my twenties I developed hypothyroidism (underactive thyroid gland) from Hashimoto’s disease. I had moderately severe anemia, which every M.D. chalked up to menstruation, even though my periods were very light. I developed joint pains in my fingers, knees, and ankles and had to stop running because of chronic knee clicking, swelling and discomfort. I was evaluated for Lupus, Lyme Disease, and R.A. multiple times.
I was in medical school and residency during this time so I was around doctors all of the time. Every time I asked others for advice about my symptoms (joint pain, anemia, thyroid disease, bloating, etc.) and normal autoimmune work-up, I was told that my symptoms were probably due to a combination of “stress” and I.B.S. I began to get large ulcers in my mouth and to lose hair. I felt hungry all of the time and subsequently ate all of the time, but never gained weight (which I admit, thought was a good thing at the time). I developed depression.
I had two miscarriages when trying to conceive. I struggled to breastfeed all of my babies due to having a low milk supply.
After my 3rd child was born in 2009 I was so sick that I feared that I had some sort of cancer. I had daily diarrhea, bruises all over my body, hair loss, arthritis, and low back pain. I had huge sores throughout my mouth, ran a low grade fever, had jaw pain which made it difficult to eat, and recurrent yeast infections. My brain felt like mush. I felt like I was “hungover” every day even though I wasn’t drinking any alcohol.
During this post-partum time period I had the most memorable GI “bug” of my life. I spent 2-3 days with vomiting and diarrhea and I ate nothing. Despite being sick with a stomach flu, most of my other symptoms went away and I felt better than I had in ages. Then, when I did start to eat again, lots of “wheat-based” foods like crackers, noodles, etc., all of my symptoms came back with a vengeance. I realized that I was getting sick from something in my diet and I was, fortunately, diagnosed with Celiac Disease a few weeks later. I have been gluten free since then and I have never looked back (although I do miss pizza, beer, tiramisu, and my grandmother’s apple pie from time to time).
Thank you for your post. I have suffered with most of the exact same symptoms you have since my early 20′s and I’m 53 in September. Let’s just say trying to be a reliable civil servant has been quite a challenge over the last 33 years, but I must be doing something right when I am here because it’s been tolerated, not so well at times, and I’m still employed. In doing all the research and reading all the different posts of those suffering as well, I honestly believe celiac disease is the crux of the majority of my health problems. However I was blood tested for it and it came back negative. I cried, as much as I did not want this disease after seeing so many doctors and being diagnosed with IBS, ischemic stomack, spastic colon, thin stomach lining, etc, I so wanted this disease to be my answer. I was told by a friend to ask for a biopsy of my stomach and am wondering if I should do so or just go on a gluten-free diet and stick with it. I too have felt like I was 6-7 months pregnant at times, can belch louder than any trucker when battling my digestive problems, have suffered from chronic insomnia since my early 20′s (not sleep apnea), have achy joints, lower back pain, have always had very thin hair and very brittle nails. I am very small build and have never had a weight problem. Seem to be hungry all the time and do eat, but expecially the last 4 years have been afraid to eat. To try and plan any type of activity with friends or family is so hard to do because I never know if I will be feeling well or if I’m going to be up all night and tired or trying to recover from a 3-day bout of gut-wrenching stomach pain, coupled with total weakness and tiredness and a stomach that sounds like it’s making volcano erupting sounds louder than Mount St. Helen’s. I have been doubled over so many times in pain and turned white as a ghost at times, couldn’t move off the couch, couldn’t finish my grocery shopping, make it to that wedding, etc., over the years. Time and time again I’ve had to call into work with complaints of being up all night with stomach problems and not able to function due to lack of sleep. I had colonoscopies, upper and lower GI’s over the years, MRI’s, CAT Scans, x-rays, bloodwork, etc and spent way too much money for someone to be missing that this truly might be Celiac Disease. I would like to know for sure and am wondering what exact testing I need to ask for? I’m not a hypochondriac and I want to be healthy and live a good life for 40 more years or so. Thanks again for your posts and education to all of us on this subject.
Hi Chalice,
I just read through your story twice. I can’t believe that you have suffered for so long…my heart goes out to you. It definitely sounds like there’s a good chance that you have either Celiac Disease (your story mirrors mine in so many ways) or Non Celiac Gluten Sensitivity, also called NCGS. Although there has not been a ton of research on NCGS, some patients with NCGS get extremely ill from ingesting gluten.
A few questions for you:
1. How long ago did you have your upper GI done? Did you have an intestinal biopsy, or did the GI doc just visually check things out? If you had a biopsy done, you will need to get the report and make sure that at least 4-5 tissue samples were obtained, including one of the duodenal bulb. A lot of biopsies are not done correctly, since the intestinal damage from Celiac Disease can be “patchy.” So, there are a lot of people with Celiac Disease who are told that they do not have it due to the biopsies being done incorrectly, but they actually do.
2. Have you ever tried to go gluten free? I felt a ton better within a week of being off of gluten and within a month or so I felt like a totally new (healthy) person. Now, if I am exposed to even a trace of gluten, I get extremely ill (almost immediate GI symptoms, followed by 5-7 days of autoimmune symptoms including joint pain and inflammation.) If you have gone GF at some point, and had a dramatic improvement in your symptoms, then you know that you have either Celiac Disease or NCGS.
3. Do you feel unwell after drinking wine? If you do, then I will talk more about problems with sulfites, because after hearing your story, a lot of what you describe can also be associated with a sulfite intolerance.
The traditional medical teaching is that Celiac Disease is diagnosed based on symptoms, having one or both of the Celiac genes (HLA DQ2 or HLA DQ8), positive antibodies (endomysial IgA and tissue transglutaminase (TTG) IgA, plus a new antibody test called the deamidated gliadin peptide which is a little more sensitive), and a small bowel biopsy which shows villous blunting. However, more and more GI docs are omitting the biopsy, and if a patient has symptoms, genes and/or family history of Celiac Disease, and positive antibodies, they are being diagnosed as Celiacs. The flip side is that there are some Celiac patients who have normal antibody testing, but do have abnormal intestinal biopsies which show villous blunting. Some of these patients are IgA deficient, others do not mount an antibody response for unknown reasons. Either way, if you decide to pursue formal Celiac testing, it is very important to stay on a gluten containing diet until all of the testing has been completed.
But, considering that you have lived with symptoms for so long and have already seen so many doctors and had so many tests performed, you may just want to diagnose yourself at this point. There seem to be a lot of people who do this, who realize that their bodies are getting very sick from gluten, so remove gluten, feel better, and choose to remain gluten free for life. Some call themselves Celiacs, some say they are “gluten intolerant,” and some say that they have NCGS.
I am not sure if this helps or makes it all seem more confusing. I guess that I am trying to say that you do have options available. Please let me know if you have questions and thank you for reading.
Jess