Celiac Basics

Information from the National Foundation for Celiac Awareness (www.celiaccentral.org):

What is Celiac Disease?

Celiac Medical ImageCeliac 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:

bloatingBloating 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:

ToiletPaperDiarrhea 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:

toiletConstipation 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.

In 2013 I wrote a post for the newly diagnosed called, “So you just found out that you have celiac disease…now what?” According to an anonymous website it is “halfway-decent,” which makes me laugh for some reason! I am sharing it in hopes that it may actually help some of you, as it is full of advice that I wish I had known when I first went GF in 2010.

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):

celiac-disease-symptoms

 

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21 thoughts on “Celiac Basics

  1. Gina

    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?

    1. Jess Post author

      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

  2. Margareta

    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!

    1. Jess Post author

      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

  3. Susan

    I am so happy to see this site. After 3 years, doctors looking at me like I have a screw loose, and thousands of dollars of “mental help” for my seizures, you have validated my suspicion that celiac is the probable cause. Thank you!
    Now, can you tell me what kind fo a doctor we should go to when allergy/asthma gets out of control, when seizures hit, when there are balance/coordination problems? When their tests do not show an answer, neurologists and internists seem to think we are crazy.
    It is amazing how many professionals, doctors and dentists, who are not only unaware of these side effects, but do not believe it when you tell them. Most medical practitioners seem to keep up by training provoded by pharmaceutical salesmen. Unfortunately, since there are no drugs for celiac, there is no one to make sure they are well educated.

    1. Jess Post author

      Hi Susan,
      I am so glad to hear that you have finally figured out that Celiac Disease is the likely cause of your problems. There has truly been an explosion in the amount of information about the neurologic effects of Celiac Disease over the last few years. Unfortunately, this information has not made its way to all doctors and nurses yet.
      I would recommend that you get 2nd and 3rd opinions if you feel that your current doctors have not taken your symptoms or story serious enough. Are you in a position where you can be evaluated by someone at a major academic center, i.e. Dr. Fasano in Boston?
      Jess
      P.S. Like you I was “crazy” for a while too, as my symptoms did not all fit neatly into a box…

    2. dale

      My daughter took 9 months of passing out in pain with a skin rash, and going to the ER many times, before she was dx. She had a iga or over 300. She was put on the diet and within 48 hours she was a different person. She was great on the diet for almost 2 years. Now, she is having horrible spells of screaming pain. We are now in the hospital and they fed her a regular wheat roll. She is now passing out 2-3 times a day. They put her on adavan before meals and tried three days of gabapetin. She is not better. Does anyone have any ideas. They just want to send her home and say oh well.

      1. Jess Post author

        Hi Dale,
        I am sorry to hear that your daughter is going through this. I am not sure how old she is, but it sounds like she is pretty young. If she is not being cared for at a large academic children’s center, then it sounds like she needs to be at one (if she is at one, then perhaps a 2nd opinion is needed). There have been increasing reports of the neurological effects of gluten in both those with Celiac Disease and non celiac gluten sensitivity, but in the case of your daughter it sounds like you need to be sure that something else is not going on. Also, the fact that the hospital fed a wheat roll to a child with Celiac Disease needs to be addressed.
        Jess
        P.S. Has she shown any improvement since you wrote this a few days ago?

  4. Gary

    What is a good over the counter treatment for an attack, Tums are not helping much. I am a 70 year old male, developed celiac in my early 50th. Really do not have attacks that often, first one in 6-7 years.

    1. Jess Post author

      Hi Gary,
      I am just seeing your comment now, so I hope you are through your attack!
      I wish that I could help you but I have yet to find any over-the-counter treatments that personally help me. When I have an attack I use a heating pad for the cramping and pain, rest, drink lots of fluids, and then try to eat very simply for the next few days. Some people with heartburn-type symptoms will use an H1 blocker, such as Pepcid (generic is famotidine) or a proton pump inhibitor, such as Prevacid (generic is lansoprazole) but I have not found these to help me very much.
      Jess

  5. victoria

    Hi Jess,
    I just came across your blog and really appreciate your work to share your insight. I have a question and a comment.

    First, I am wondering if you can comment on whether it’s worthwhile for people who feel better gluten free to get a good test for Celiac? I have been gluten free for probably close to ten years and have no doubt that my gut can’t handle gluten. I also had amenorrhea during the two or three years when I was having all the gut problems and that went away a year or two after I went GF but beyond that I don’t think I had other symptoms that are exclusively seen among Celiacs. I did get a blood test of some kind many years ago but I was already gluten free and it was, not surprisingly, negative. It seems like the benefit of knowing for sure whether I have it would be to be more vigilant about not having gluten and perhaps so my family could know whether or not it’s in the family. My gut seems to be able to handle small amounts (soy sauce, products with no wheat but made in facilities where there could be cross-contamination) and occasionally I’ll take GlutenEase enzymes and eat a little pasta or bread (especially at dinner parties because I’m already vegetarian so very difficult to feed). However, I understand that even trace amounts are very bad for true Celiacs. I have been more careful about gluten while trying to conceive and pregnant (although I still might need progesterone to hang on to them as I carried the two I took progesterone with and lost three others (1, 3, and 4). It seems very difficult to get an accurate test done once you’re gluten free (months with gluten, argh!!!), so I am inclined to skip it. But that does that imply I should be more vigilant about avoiding gluten?

    I also have see that you’re a runner and some of the others who have written in are runners and just want to comment that my gut works much better when I don’t run or don’t run much. I have been a really hard core runner for most of my life but in the few periods when I wasn’t running (quite pregnant, quite injured, etc), I made the sad discovery that my gut works better when I don’t run. The timing of the run with eating makes a difference but unfortunately, just not running, is the best for my gut (but not the rest of me). But maybe this is because I just have a sensitive gut and am not actually Celiac…

    Thanks!
    Victoria

    1. Jess Post author

      Hi Victoria,
      Thanks for taking the time to write and introduce yourself. One of my favorite parts of having this page is being able to meet new people and share ideas.You have some really great questions and I don’t think that the answers to any of them are black or white (but I’ll give you my two cents since you asked). Please keep in mind that any info I share with you is not true medical advice!
      If I had to take a wild guess right now, I would bet that you have celiac disease. There has been more and more research showing that women with celiac disease who are either undiagnosed or not strictly GF are at risk of infertility and miscarriages. The TTG antibodies of celiac actually attack the placenta during a pregnancy. As far as I know, this relationship does not hold true for non celiac gluten sensitivity.
      If you have celiac disease, each of your children is at a 5-10% risk of also developing it. I think this is important to know, as if they are at risk, you and your doctors will need to be vigilant in monitoring them for signs and symptoms. One option would be to have each of your kiddos genetically tested when they are small. That way you would know which ones need to be monitored and screened. Right now the recommendations are that, in the absence of symptoms, high risk kids should have celiac antibody tests every 2 to 3 years starting at age 4.
      So, it seems like your major options are to a.) keep doing what you’re doing and live your life as being gluten sensitive (but not really knowing how strictly GF you need to be), 2.) presume you have celiac disease and commit to being 100% GF, or 3.) Undergo a gluten challenge to get a firm diagnosis. ImmusanT, the company who is working on the “celiac vaccine” is also working on a blood test for celiac that is so sensitive that it will require GF people to undergo only a 3 day gluten challenge for diagnosis, but it sounds like it is still years away from being put on the market. If I had to choose an option, I would play it safe and do #2 or #3, especially with the potential for there to be kids with celiac in the family (but there are many who would choose #1).
      As for running, I developed a horrid case of patellar tendinitis after running a marathon last November, so I’ve been on a 2 month running hiatus. Interestingly enough, I feel like I’ve had guts of steel since I stopped running. Dr. Alessio Fasano has done some good research that those of us with celiac disease have a predisposition to increased intestinal permeability (leaky gut) and extreme exercise is also shown to increase intestinal permeability, so for those of us who run and have celiac, we have a much higher risk than the general population. If you have the running-related gut issues, it also makes me suspect that you’re a celiac.
      I’ll let you know what happens when I start running again (I just went out for my first 8 min jog tonight after doing the 2 months of PT exercises).
      Anyway, please let me know if you have any additional questions. I hope things work out for you Victoria.
      Jess

  6. Alicia

    Hi! I am a newbie to the blog, but find this very interesting. In 2010 I had several fibroids, cysts, and some endometriosis removed and was able to get pregnant with some Clomid. At this time, I was also put on Levothyroxine. After having my son, I was diagnosed with Hashimoto’s hypothyroid. In 2013 we started Clomid again and became pregnant with a girl (after a very early miscarriage).

    I felt I needed that history out there to get to my question……….I am currently pregnant with this beautiful baby girl and she is due at the end of March, but I am being told that she is VERY small (between 2nd and 3rd percentile at 30 weeks) and that the placenta may be failing.

    I had not been using food as a healer since I hadn’t felt badly since switching to Synthroid, but do you think the growth issue is at all connected to my thyroid?

    Also, when I look at the symptoms list for Celiac, I imagine I have had them all at one time or another, but not consistently. The only real connection I see is that I have heard one autoimmune disease often means there are more.

    I am all over the board with this question/post, but what are your thoughts?

    Thank you!
    Alicia

    1. Jess Post author

      Hi Alicia,
      Thanks so much for sharing your experiences.
      First of all, congratulations on your pregnancy! That is such exciting news and that is awesome that you only have two months to go.
      I will give you my two cents with the caveat that I am not an OB or endocrinologist (just a mom with celiac and hypothyroidism and I take care a premature babies).
      I am not aware of any link between a women having treated Hashimoto’s and a fetus having less than optimal growth. One of the most common causes of IUGR is when women develop pre-eclampsia during pregnancy. I am assuming that your OB has evaluated you for this. There is a pretty well established relationship between untreated maternal celiac disease an fetal growth though. The TTG antibodies of celiac do attack the placenta, and there have been a few studies showing high rates of celiac disease in women who deliver small babies (in which there is not other explanation). With your history of thyroid disease, infertility, and endometriosis, it really is essential that you get tested for celiac disease (while still eating gluten, because if you go GF before testing, the test results are meaningless). It is important for you to know if you have celiac, because if you have it, then you will know that your wee baby is also at risk….
      Jess

      1. Alicia

        Thank you, Jess. I will ask to be evaluated for Celiac. My endo was open to it when I spoke with her. I feel like a hypochondriac, but I am a very normal weight, veggie loving, exercising person that rarely/never is out of work for sick days. But then you look at my history of growing extras in my uterus and now my thyroid nodule and I must sound crazy!

        We are now at 34 weeks and the baby is growing, but remains roughly 2 weeks and 6 days behind. Obviously there could be countless reasons for this, but none are concrete so we will continue to plug along as long as possible.

        Thanks again for the advice and blog!

  7. Jodie Carroll

    My 10 year old daughter was diagnosed 5 years ago with Celiac Disease. At the time her IGG count was 266. Now, 5 years later, it’s only at 33. Still not down to “normal.” My doctor says not to worry, some take longer than others. I’m concerned though. Should I be? Her IGA has gone down to normal levels a couple of years ago.

  8. Jodie Carroll

    I sent a not earlier about my daughters IGG count taking a long time to come down. It’s actually her IGA numbers. They started at 266 when she was diagnosed 5 years ago and is now only down to 33. My concern is why it’s taking so long. Her IGG is at 10 after being up and down the past 5 years. Her doctor doesn’t think there is anything to be concerned about. He said it takes some people longer. Should I be concerned? Could there be something else going on? Thanks for any advice you can offer!

    1. Jess Post author

      Hi Jodie,
      Thanks for writing. I really can’t answer your question as I am not a GI doc.
      I am assuming your are referring to TTG IgA antibodies in your posts, right?
      Is your daughter having any ongoing celiac symptoms or anemia? Has she had an endoscopy to check for healing of her small intestinal lining? If she doesn’t have symptoms and has healed, those are good signs.
      Also, there was a recent study suggesting that the deamidated IgG antibody (DGP-IgG) may be the best to monitor for nonresponsive celiac disease. Do you know if she’s had this one done?
      Jess

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