Information from the National Foundation for Celiac Awareness (www.celiaccentral.org):
What is Celiac Disease?
Celiac disease is an autoimmune digestive disease that damages the villi of the small intestine and interferes with absorption of nutrients from food. What does this mean? Essentially the body is attacking itself every time a person with celiac consumes gluten.
Celiac disease is triggered by consumption of the protein called gluten, which is found in wheat, barley and rye. When people with celiac disease eat foods containing gluten, their immune system responds by damaging the finger-like villi of the small intestine. When the villi become damaged, the body is unable to absorb nutrients into the bloodstream, which can lead to malnourishment.
Left untreated, people with celiac disease can develop further complications such as other autoimmune diseases, osteoporosis, thyroid disease, and cancer.
Celiac Symptoms:
There are more than 300 symptoms of celiac disease, and symptoms may vary among different people.
One person might have diarrhea and abdominal pain, while another person has irritability or depression. Some patients develop celiac symptoms early in life, while others feel healthy far into adulthood. Some people with celiac disease have no signs or symptoms.
These differences can make celiac diagnosis extremely difficult, resulting in 95% of celiacs undiagnosed or misdiagnosed with other conditions.
Bloating and Gas:
Bloating can cause abnormal swelling of the abdomen. This results in the feeling of a full or tight abdomen and is often accompanied by discomfort and pain. Gas can also cause bloating. Celiac Disease and gluten intolerance is one of the many causes of these two symptoms. They are also associated with many of the conditions that are a result of celiac disease such as irritable bowel syndrome and constipation.
Diarrhea:
Diarrhea is the condition of having frequent loose or liquid bowel movements. This may be accompanied by cramping, abdominal pain, bloating, nausea, or an urgent need to use the bathroom. Chronic diarrhea may be a symptom of a chronic disease. For someone with celiac disease diarrhea is often caused by malabsorption, the inability to absorb food.
Constipation:
Constipation is a condition of the digestive system the stool is hard, difficult, and painful to pass. The most common causes of constipation are poor diet and lack of exercise. Frequent Constipation can be a symptom of more serious problem or health issue and can be an indicator of a disease or health condition.
Fatigue:
Fatigue is a state of physical or mental weariness. It can be the result of both physical and mental sources. Chronic fatigue can be symptom of many different diseases or conditions among them are autoimmune diseases such as celiac disease.
Itchy Skin Rash:
Dermatitis herpetiformis (DH) has been associated with gluten sensitivity. It is characterized by an intensely itchy, chronic rashes that usually can be found primarily on elbows, knees, buttocks, back, and back of neck.
Tingling/Numbness:
Tingling or Numbness are abnormal sensations that can occur anywhere in your body. It is a sensation of tingling, pricking, or numbness of a person’s skin with no apparent long-term physical effect. It can also be described as “pins and needles” or referred to as a limb being “asleep.”
Pale Mouth Sores:
Pale Mouth Sores are caused by a break in the mucous membrane or the epithelium on the lips or surrounding the mouth. Various types of sores can appear anywhere within the mouth, including the inner cheeks, gums, tongue, lips, or palate. They can have many causes. Mouth Sores can be a sign of an a more serious medical conditions including but not limited to celiac disease.
Joint Pain:
Joint pain can be caused by many types of injuries or conditions. It can range from mild or serious discomfort to chronic pain that can decrease a person’s range of motion in a joint or limb.
Delayed Growth:
A slow rate of growth is defined as poor or abnormally slow height or weight gains, more specifically in children. Many children with delayed growth also have delays in mental development. This often occurs in children who have celiac disease as a result of malabsorption, the failure to properly absorb necessary nutrition, and provide the body with its needed nutrients for development .
Poor Weight Gain:
Poor weight gain is the inability to gain weight at a normal rate. Malnutrition is one of the sources of this symptom. If poor weight gain is observed even though a proper diet is being maintained then complication caused by celiac disease could be possible explanation.
Thin Bones:
Thin Bones are the thinning of bone tissue and loss of bone density over time. This occurs when enough new bone is not formed, when too much old bone is reabsorbed by the body, or both. There are no symptoms in the early stages of the disease. Symptoms occurring late in the disease include, bone pain or tenderness, fractures with little or no trauma, unexplained loss of height, low back pain, neck pain and stooped posture.
Infertility:
Infertility primarily refers to an inability to contribute to conception. It can also refer to a woman who is unable to carry a pregnancy to full term. There are many biological causes of infertility. Celiac disease can result in infertility as well as serious complications during pregnancy.
Headaches:
Headaches are a symptom of a number of different conditions of the head and sometimes neck. It is among the most common pain complaints. Like other types of pain, headaches can serve as warning signals of more serious disorders. If headaches occur three or more times a month one should seek a doctor or medical professional for assistance immediately.
Depression:
Depression refer to a feeling of being sad, helpless, and hopeless. Some symptoms of depression are anxious or empty moods, feeling hopeless, feelings of guilt, feelings of worthlessness, and a loss of interest in activities that were once enjoyed. Health conditions such as celiac disease are among the biological influences that can cause depression.
Irritability:
Irritability can also be described as crankiness and is defined as excessive feelings of annoyance or frustration. Irritability is one of the most common symptoms in children.
Discolored Teeth:
Discolored teeth can be a symptom of celiac disease among other possible health issues. This symptom manifest as white, yellow, or brown spots on the teeth often appear on the incisors and molars. Tooth defects resulting from celiac disease are permanent and do not improve once a diagnosed patient adopts a gluten-free diet.
Diagnosis:
Accurately diagnosing celiac disease can be quite difficult largely because the symptoms often mimic those of other diseases, including irritable bowel syndrome (IBS), Crohn’s disease, intestinal infections, lactose intolerance and depression.
Blood tests are the first step in a diagnosis of celiac disease. A doctor will order one or more of a series of blood tests to measure your body’s response to gluten.
Currently, recommended tests include:
- Total IgA
- IgA-tTG
- IgA-EMA
- If IgA is deficient, it is recommended that the IgG/IgA-DGP also be ordered. At the discretion of the doctor, IgG-AGA can also be ordered.
**It is important to continue eating a normal, gluten-containing diet before being tested for celiac. If the blood tests and symptoms indicate celiac, a physician may suggest a biopsy of the lining of the small intestine to confirm the diagnosis.
Treatment:
The only treatment for celiac disease is a lifelong gluten-free diet. Eating gluten, no matter how small the amount, can damage the intestine.
A gluten-free diet means avoiding all foods that contain wheat (including spelt, triticale and khorasan), rye, and barley.
Despite these restrictions, people with celiac disease can eat a well-balanced diet with a variety of foods, including bread and pasta. Many gluten-free products are now made with potato, rice, soy, or bean flour. In addition, plains meat, fish, fruits and vegetables do not contain gluten, so celiacs can eat as much of these foods as they like. Learn more in NFCA’s Printable Guides section.
Gluten Dude, a celiac disease blogger, compiled symptoms of Celiac Disease from 130+ patients in the spring of 2013 and created the following image (shared with his permission):
My son is 12 and was diagnosed almost a year ago with Celiac. His only symptom was that he wasn’t growing very much. At the same time he was diagnosed with low growth hormone production and growth hormone therapy was recommended from the endo. I was hoping that once he started a gluten free diet, he would start growing and no longer be in need of growth hormones. He is still just under the 10th percentile and hasn’t had any significant growth although he has grown along the curve. What I’m wondering is that if you know of a link between growth hormone production and Celiac? I’m struggling with the decision to put him on growth hormones for the next 5-6 years. Could it be possible that he may start producing growth hormone once his blood levels are back to normal? He is being tested every 3 months because his levels were around 150 in the begining and when last checked were in the 60s. We are very strict about his diet and have completely eliminated gluten. He has seen 2 different GIs. One told us not to do the hormones and the other said we should. Do you have any advice?
Hi Gina,
Thank you so much for reading a stopping by. I hope that your son is doing well overall on the gluten free diet. I just reviewed the medical literature in an attempt to answer your question and I came across a letter published in a journal called Clinical Endocrinology in 2011. The authors discuss a group of children with both celiac disease and growth hormone deficiency who did not experience catch up growth on the gluten free diet alone, despite improved nutrition. They opted to treat these children with growth hormone and they found a significant improvement in growth (the patients reached their genetic height potentials with growth hormone therapy). The reference is as follows:
Coeliac children treated for growth hormone deficiency reach normal final height.
Cristina Meazza1, Sara Pagani1, Beatrice Messini2, Giuliana M. Cardinale3, Costanzo Mastrangelo4, Giuseppe Citro5, Maurizio Delvecchio6, Carmine Tinelli7, Gino R. Corazza8, Mauro Bozzola1
Clinical Endocrinology
Volume 74, Issue 6, pages 791–792, June 2011
I personally take care of newborn babies in my practice, so this area is out of my area of medical expertise. But I can say that there is a strong link between celiac disease and other endocrine problems, such as Type I diabetes and thyroid disease. In these cases, despite going GF, patients with both conditions (i.e. celiac and diabetes) need to continue treatment for their endocrine problems in most cases. It makes sense that with growth hormone deficiency the same would be true, but once again, I have not personally seen this.
I did come across another study which may be of interest in which celiac disease and growth hormone deficiency were found to be linked in a few cases (I am cutting and pasting the abstract below):
J Pediatr Endocrinol Metab. 2009 Oct;22(10):979-83.
Short stature, celiac disease and growth hormone deficiency.
Nemet D, Raz A, Zifman E, Morag H, Eliakim A.
Gastrointestinal and Endocrine Clinic, Pediatric Department, Meir Medical Center, Kfar Saba, Israel.
Abstract
Celiac disease (CD) is a prevalent, genetically determined, autoimmune, chronic inflammatory state caused by intolerance to gluten that results mainly in gastrointestinal manifestations. One of the most common extra-intestinal manifestations of CD is short stature, and in some patients, short stature may be the presenting and only symptom of the disease, making the diagnosis of CD challenging. Impaired growth in children with CD results mainly from nutritional deficits, and withdrawal of gluten from the diet is frequently associated with a marked improvement of linear growth. In some patients, CD may be characterized by growth hormone (GH) resistance, as suggested by normal or elevated GH levels and low insulin-like growth factor-I (IGF-I) levels. Rarely, it has been shown that poor catch-up growth and/or IGF-I response to gluten-free diet may be due to the coexistence of celiac disease and GH deficiency. We present two children with coexisting CD and GH deficiency. One patient had MRI findings suggesting congenital isolated GH deficiency, and a possibility of developing multiple pituitary hormone deficiencies later in life.
Whatever decision you make, all of the best to you and your family. I will write more about this if I find more info.
Jess
Hello Jess,
Thank you for your very helpful website. I am 33 years old and was diagnosed with “compensated sprue” 8 years ago. The diagnosis was made based on a skin rash (dermatitis herpetiformis) I had had for years. A blood test and a simple endoscopy could not confirm celiac disease. It was only when the endoscopy was repeated with an additional histological test that the diagnosis was confirmed by a gastroenterologist. I have just had a baby, first child, in January and I would like to ask for your advice: is there anything I can do to lower the chances that my daughter will also have celiac disease? She is 4 months old and so far only breastfed but it seems she developed a milk allergy (to milk protein) and she has not been gaining well at all. She is 3rd percentile now although she was born at 50th! I have kept a very strict gluten free diet for years and I am now also eliminating dairy. However, I am wondering if this milk allergy might indicate that she is likely to have celiac disease later? Is there anything I can do to minimize the chances of this? (In retrospect, it seems to my mother that as a baby, I too had a milk allergy, which went undiagnosed, so by the age of 1 I was 1st percentile weight-wise.) I would be very grateful for your advice. Thank you!
Hi Margareta,
Congratulations on the birth of your daughter! I hope that you have gotten through the exhausting first few months of motherhood and that she is now laughing and babbling and smiling with you. Sleeping through the night will eventually come, but for my girls it did not happen until 8 to 10 months (my son was at 4 months).
I had my first 3 children prior to my Celiac diagnosis and started to get very sick when my 3rd was about 5 or 6 months old. My 4th was born last spring and is now 13 months old and I really struggled with whether or not to introduce gluten to her. I reviewed all of the information which I could find in the scientific literature. Based on what I could find, the consensus seems that it is best to introduce small amounts of gluten to an infant between about 4 1/2 and 6 1/2 months while still breastfeeding. This seems to be a critical window in the development of the immune function of an infant’s digestive system, and giving small amounts of gluten can create an immune response which is protective against later exposures to gluten (this is similar in some regards to how vaccines work). Everything which I read emphasized the importance of giving breast milk at the same time because it is protective.
I breastfed my fourth until she was 7 months old, and around 4 1/2 months of age I started her on gluten-contaminated baby oatmeal 1x/day. I did this for 8 weeks or so and she has been gluten free since then. From what I can tell she tolerated it fine. She is petite, but so are the rest of my kids. I wrote about it in December and I will put a link to the post below.
As for milk protein allergies, I struggled with this with my oldest daughter as an infant. Despite my best efforts to remove dairy from my diet, she continued to get sick from my breast milk, and ended up on a special formula called Neocate which is amino acid based. She is now 7 years old and is very healthy, with no signs of Celiac Disease. There has been no research looking into a link between a milk protein allergy during infancy and the later development of Celiac Disease. It seems like there are a lot of us moms who have Celiac Disease and then have babies with milk protein allergies/intolerances (but it is all anecdotal, as no researchers have studied this that I know of). I was very colicky as an infant, and looking back, probably had a milk protein allergy. Interestingly enough, my mom also has Celiac Disease and was not diagnosed until middle age.
I wish that I had more answers for you. In my heart I do believe that there is a link between maternal Celiac Disease and milk protein allergies, but I have no idea what the natural history of a milk protein allergy is, nor do I know what eventually happens with the digestive systems of babies with problems digesting milk. I hope that this will eventually be properly researched and published. Right now we are all just doing the best that we can.
Anyway, thank you for reading and congratulations again on becoming a mom!
Jess
http://www.thepatientceliac.com/2012/12/29/introducing-gluten-to-the-baby-at-risk-for-celiac-disease/
Thank you so much for the useful information! I am very grateful for your help.
All the best,
Margareta
You are welcome! Please keep me updated!
Jess