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

 

38 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. Teacher mom

      I also have a celiac child who was not growing. He dropped from the 75 percentile to the 8th. He is 14. He gained over 20 lbs in a few months but no other signs of growth. He has been gluten free for almost 6 months

        1. Jess Post author

          Hi Teacher Mom,
          I am not sure that I can adequately answer your question. In my patient population (premature babies), catch up growth for length usually precedes weight gain. I would talk to your pediatrician and/or gastroenterologist to get guidance and see if he needs any other type of evaluation for short stature, ie. endocrinologist. Does he have a 6 month post-diagnosis follow-up with his GI doc scheduled?
          Jess

      1. Dawn

        Hi Teacher Mom—We also have a 14-year old son who was diagnosed last May with CD. We’ve been gf for 4 months and have seen absolutely no growth at all. His puberty has also been delayed because of his malabsorption. He turns 15 in three months and will have fallen to the 10th percentile if he continues on this track. He has always been at the 60th-75th percentile for growth. We have a follow up appt with the pediatric GI next week and are curious to find out where his antibody levels are since testing last May he was “weakly positive.” He has a second appt with a pediatric endocrinologist in Nov (that seems so FAR from now even though it is next month) so I am anxious to discuss what is going on with him. He had a thyroid screen and all came back normal. This is agonizing. His peers are beginning to tower over him. We were assured that we would see some sort of change by now but haven’t seen…anything. :( Does anyone here have experience with growth hormones? I’m afraid that may be where we are headed.

        And Jess, I tried to search out the reference above to published studies but could not access them without belonging to an institution or having a membership to Wiley’s. Quick question for you though—will growth hormones kick start puberty in our son? I can’t seem to find that online and believe me, I’ve searched!

        1. Jess Post author

          Hi Dawn,
          I am sorry that you couldn’t access the articles. If you shoot me an email at thepatientceliac@gmail.com I should be able to download and send them to you.

          As for GH kickstarting puberty, I really don’t know. I can tell you that GH therapy did not kickstart puberty at all when my younger brother was on it as a teen. We believe he is an undiagnosed celiac, but now, at age 25, refuses to be tested. I will let you know if I come across anything.

        2. teacher mom

          Thanks Jess, We started with an endocrinologist who informed me that he was malnourished. I took him to a diagnostic center where they told us he was malnourished. We were told that based on his blood work he either had celiac or Crohn’s . We eliminated Crohn’s as a possibility via testing. I took him off of gluten as soon as I heard “malnourished” because I have celiac and knew his diet was extremely healthy (albeit not gluten free).
          He was off of gluten for his scope and the GI insisted his problems were not gluten related. Oddly enough off of gluten his mouth sores healed, he gained weight easily, slept better, anxiety dissipated,and amazingly his high blood pressure normalized. He was put on blood pressure medication at the age of 11. Doctors could never find a cause of the high blood pressure. He is now medication free and joined the soccer team. I hope this makes sense. Basically every doctor thinks he has celiac except for the GI doctor and I’m not willing to put him on gluten for another scope.
          He accidentally got a little gluten in a milkshake last month and had mouth sores and his first bout of “bathroom trouble” ever.
          I’m so sorry I rambled, my point is his actual diagnosis is “non celiac gluten sensitivity” because his scope was clean. I see our endocrinologist next month.

          Side note- are we the only family that has had trouble with a GI diagnosis? My Celiac went undiagnosed for over 10 years. Finally a neurologist suggested I had celiac.

        3. teacher mom

          Dawn, your story sounds so similar to our son’s.

          I can tell you that years of undiagnosed CD left me deathly ill and I sustained neurological damage. I now have something called POTS, fibromyalgia, and CFS. I went gluten free in 2009 and got a little better.

          I am now starting to heal- I was told by my doctors that I would not recover. I TRUELY believe that I am better because all gluten is out of our house. When I realized my son had an issue I cleared every trace out. I even took away his retainer because it was made with gluten. I think having it in the house made it possible for me to get exposed to bits and pieces.

          I share this with you on the off chance that something has been overlooked with your son. For us it would have been the retainer. He was so flat and exhausted- I was desperate for him to feel better. Like your son, mine dropped from the 75th percentile to below the 10th. He weighed 86Lbs in March and now is 111LBS. I’m not sure of his height increase. He gets measured on October 31st so I will have a better idea.
          I just wanted to share my story in case it helps your son. Mine is also 14 1/2. We have no puberty development and I absolutely sticking with our endocrinologist until something changes.
          GOOD luck. I know it’s hard on you.
          Please excuse my long posts!

          1. Dawn

            Thank you so much, Teacher Mom. Our son just had his first follow up with the GI doc last week to check his antibody levels. Haven’t heard back from her yet so I’m really hoping that the labs come back with good news. Otherwise, we have no idea if we’ve eliminated all of the gluten from his diet. We’ve gone completely gf in our household at the beginning of June which was a pretty large transition for all of us including our 13-year old daughter who is not a celiac! Our son has actually lost weight over the last few months but he is also very active, running cross country daily and playing competitive soccer. I’m hoping that now that both of those sports have reached the end of their seasons, he will quit burning up every gf calorie that he consumes! It is just so frustrating to not know if we are on the right path or if we’ve missed something along the way. As I mentioned, he exhibits NO symptoms at all (except for the stunted growth) so for all we know, we may have been thinking we were gluten-free but missed something else along the way. Thank you so much for the heads up about the retainer! He doesn’t wear one yet—still waiting for two more adult teeth to come fully in before we can start braces so we will cross that bridge when we get to it. I would love to talk more with you about our similar situations—are you on facebook? You can look me up under Dawn Giba Edwards. Thank you both Jess and Teacher Mom. Sometimes I feel like the only mom out there who knows how frustrating it can be to have a celiac kid…especially one that isn’t growing as a teen!

  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

  9. Abby

    My daughter is 6 and has been complaining of a belly ache for several months. I initially thought it was nerves/anxiety. The belly aches became more frequent and eventually happened with every meal. I took her to the Pediatrician and they felt she showed enough signs that they did a blood test for Celiac disease but also put her in Miralax daily to help with constipation. I will add I cannot eat gluten, a year after having my daughter I started having horrible reactions to it and had to stop eating it. By the time my Dr. tested me I had been off gluten for a month or more. The blood test was, not surprisingly, negative. Once i stopped eating gluten I realized how sick/horrible I had felt over the years. I could finally breath through my nose, my acne cleared up. My digestive problems went away. I could think more clearly. I had no more headaches. My son (now 3) also has problems with wheat, and has a milk and soy protein allergy. Horrible belly pains and bloody foamy diarrhea, and diaper rash and eczema. He was to young to test so i just took him off the gluten.
    My daughters blood test came back negative for CD. Her gliadin IGA did come back 1 point away from a weak positive (she was 19 a weak positive is 20), but i was told that a negative was a negative and they don’t go by that test anyway. She is a clumsy, anxious child with an ocassional potbelly. She has had problems with constipation and stomach pain. She can be very moody and irritable and often complains that she is tired. She also has pale skin with dark circles under her eyes and as a young baby and toddler suffered from eczema and lactose intolerance. The Gastroenterologist we were sent to is positive she does not have CD, and feels it is psychological. They think because of the constipation and belly aches she is now afraid to eat which is why she has greatly decreased her food intake and is losing weight. They have put her on Periactin to stimulate her appetite and want her to see a Child Psychologist for Cognitive Behavioral Therapy. I am not 100% comfortable with this diagnosis and feel they are not taking my concerns seriously. We go back in 6 weeks to see if she has gained any weight and I have a feeling if she has we will be dismissed and no further testing/ research will be done for her. I am not sure how to proceed from here. A part of me wants to insist for more blood tests and an endoscope, but I also don’t want her to go through more tests if she in fact does not have CD and I am just a crazy, nervous mom. Her stomachaches have calmed down and her appetite has increased a tiny bit with the new medication. Am I just over thinking this all?

    1. Jess Post author

      Hi Abby,
      I do not think you are overthinking anything. You know your daughter best, and it sounds like you are going with your maternal instincts.
      From what you’ve described, it sounds like you and your son clearly are gluten sensitive. Whether it be due to undiagnosed celiac disease v. non celiac gluten sensitivity (which is a real diagnosis, and in some cases can lead to more severe symptoms than celiac disease) the end result is the same, that one must avoid gluten to prevent getting sick.
      The research on non celiac gluten sensitivity (NCGS) is just emerging, but it’s pretty clear that it runs in families. Right now there are no scientifically tests for gluten sensitivity that are accepted as being accurate by the allopathic medical community. Based on early research papers, kids with can have many systems of the body affected by gluten (not just digestive system), can have behavioral/psychological symptoms, and often have elevated antigliadin antibodies on blood testing (but usually the results of other celiac antibodies, like the TTG IgA and endomysial IgA, are normal).
      I think that so many of us feel like we have been hypochondriacs to a degree after going undiagnosed for so long, and then worry that we are doing this with our children. We are not. Your are your daughter’s best advocate. If you know that she’s getting ill from gluten, and has had celiac disease ruled out, then I cannot see why she should be eating it. That being said, I am unable to give you medical advice, but this is what I would tell a friend.
      I hope this helps. I have a gluten sensitive daughter of my own, and now we are pretty sure that our youngest, who just turned 2, has celiac disease. It makes it a bit easier to deal with since we have a GF household already!
      Jess

  10. Andrea

    HI!

    Few months ago I started having really bad pains in my stomach as I was diagnosed with IBS and had Colitis in the past my doctor said it was just Acid Reflux. Few months went by and pain was still there but now all the joints in my body were hurting. Blood tests showed no Arthritis but very HIGH for inflammation. Doctor said it was Crohn’s disease or Ulcertive Colitis. After Colonoscopy doctor said everything looked good maybe its just IBS. I was so upset because at the age of 28 I’ve been unable to conceive with multiple fertility doctors saying husband and I were both healthy and I was experiencing such pain in my whole body and doctors not telling me why I did not want Crohns or UC but I wanted answers. One week after my colonoscopy I decided to try going Gluten free. I’m SHOCKED on how different I feel after only 3 WEEKS! I notice when I accidentally have gluten which has been rare(still learning) I get pains and anxiety. My moods have improved my energy I PEE LESS! not 25 times a day any more!!! and my finger nails are growing like CRAZY! I’m unsure if I should talk to doctor about being tested since I wasn’t tested or just call it self diagnosed and keep going. Is it possible to have such change in short amount of time?

    1. Jess Post author

      Hi Andrea,
      I am glad that you are feeling better on the GF diet. I felt remarkably better after being GF for just a few weeks. It sounds like you may possibly have celiac disease. If you are going to get tested then you will need to act soon, as the longer you are GF, the more likely that your tests will be falsely negative. If you are planning on trying to conceive it will be important to know if you have celiac disease or not, because longstanding celiac disease is associated with vitamin and mineral deficiencies, and it’s possible that you may require extra folate, Vitamin D, etc when you are trying to conceive and during early pregnancy. It is also beneficial to know if you do have celiac or not, as if you do, your children will be at higher risk for its development and will need to be monitored for it.
      This is not true medical advice, but just my 2 cents, since you asked. I encourage you to speak with your own medical practitioner soon.
      All the best to you.

  11. Sharon

    I remember being taught almost 30 years ago that when a patient presents with several symptoms covering multiple systems think endocrine. Now doctors need to think celiac or NCGS (which granted have endocrine connections big time) and sadly most don’t consider the former never mind the latter.

    Some recent reports in the adult and pediatric areas are noting the possible link between IBS with one group of children presenting with IBS as four times as likely than the general pediatric population to have CD. Wow, Jess at least kids who present with the GI issues as you did may not have to suffer for 20 or more years. Now onto more awareness of symptoms with less obvious connections like joints and neuro ones from migraines to seizures.

    Remember when doctors were adamant and many CD experts have also denied and continue to do so about no link of CD to IBS or especially IBD? There is an interesting clinical case that I may have mentioned before. A woman in Ireland in her 50s presented with what the docs thought for certain was CD, however she tested neg antibody wise and on the bowel biopsy. Five years later she had full blown CD pos blood and biopsy and get this ulcerative colitis – IBD. Not sure if piece noted whether or not they did genetic testing on that first visit.

    Cannot tell you how many friends and colleagues with IBS and IBD tell me their GI doctors dismiss not only their request to be tested for CD but also to try a GF diet. Doctors are big on an anti inflammatory diet yet refuse to recognize the inflammatory potential of wheat if not (and this is yet unclear) of gluten itself to many without CD. All of this raises the much maligned question: Do some folks present with a sensitivity to gluten who may well later develop CD but initially test negative?

    With the current testing few are willing after feeling so great on a GF diet to undergo a gluten challenge even for the few days with less gluten that the newly developed test will offer.

    I am a bit frustrated that the doctors are not putting all of this together but the only way is to gather data on symptoms and system and testing data into a huge database for analysis such that all are on the same page. My classic example supporting this is Dr. Green of Columbus thinks to test for CD when he hears a patient has Raynaud’s yet it is not on UChicagos list of disorders associated with CD – save for scleroderma that often includes Raynaud’s. I had small patches of vitiligo that cleared when I went GF and this is on Chicago site however there was no vitiligo site a few years back that mentioned to be tested for CD.

    1. Jess Post author

      Hi Sharon,
      It’s good to hear from you. Thanks for sharing all of your insights and thoughts.
      I hope that little ones with IBS will now be properly screened. I used to wonder when my gluten sensitivity transitioned to full fledged celiac disease. Was it when I was in high school and developed DH and “mono” or was it sometime before? As for your question, “Do some folks present with a sensitivity to gluten who may well later develop CD but initially test negative?” I think that the answer must be yet. I know that Dr. Fasano and the group in Boston are actively working on a biomarker for gluten sensitivity, I hope that it becomes available sooner than later.
      There was a press release a while back about a blood test being designed to test for celiac disease in those who are already on the GF diet. It will measure T-cell mediated responses to gluten, and according to the write-up, it will only require a 3 day gluten challenge for diagnosis. I will try to find the link and share it on here at some point.
      Anyway, I hope you are well.
      Jess

  12. dkwtexas

    I’m new here so here goes my situation. About three years ago out of no where. My stomach started giving me allot of problems. Loose bowels, pains that were excruciating. Some vomiting not a lot. Then my scalp started burning 24/7. Lost a lot of weight. Everything I ate made me sick. I had never heard of celiac. My Gp suggested a gi doctor. I had blood work biopsies and all negative. Actually when I got the biopsy the
    Doc perforated my colon. Seven days in he hospital. I have gastritis and Gerd and lactose intolerant. I’ve done better since the hospital trip but my stomach is slowly starting to get nausea again. I’m so tired of nausea. I have to watch everything I eat. I have started a gf diet as of yesterday. Has anyone had the burning scalp. It is so BAD. Any help is appreciated. Thank you Donna

    1. Jess Post author

      Hi Donna,
      I am sorry to hear all that you have been through.
      Did you have a colonoscopy and endoscopy done at the same time when they were looking for celiac?
      Just checking to confirm that your small intestine was biopsied, in addition to your large intestine.
      I have personally not experienced a burning scalp, but I have experienced nerve damage from celiac disease (neuropathy) that has resolved after being strictly GF. Also, did your doctor check your vitamin levels, as some vitamin deficiencies can be associated with sensory problems.
      Jess

  13. dkwtexas

    I had both endoscopy and colonoscopy. The just did the routine blood tests. Nothing specific. My vitamin d was low. What vitamin being low would I need to check? So far being gf has helped. I’m just having withdrawals. Thank you for you help. Donna

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