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Celiac Disease And Pregnancy

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Although I am pretty sure that I had Celiac Disease for more than two decades before my diagnosis, I was not diagnosed until after my 3rd child was born. Looking back, my diet during my first 3 pregnancies was a gluten-filled nightmare. I am actually glad that I have no idea how sky-high my celiac antibodies probably were while I was pregnant with my oldest kids.


There has not been a ton of research on celiac disease and pregnancy, but based on the work that has been done, I have learned that celiac disease has effects on fertility, miscarriage rates, fetal growth, and the ability to carry a pregnancy to term.


Celiac disease is associated with early menopause, endometriosis, irregular menstrual cycles, and amenorrhea (missed periods), similar to what is seen in many other autoimmune diseases.


Between 4 to 8% of unexplained infertility is due to undiagnosed celiac disease. Many celiacs with infertility as their main problem do not have the “classic” digestive symptoms that would normally lead to diagnosis.


Once pregnant, women with undiagnosed celiac disease have between a 2-4x higher risk of miscarriage than women who do not.


During pregnancy, women with untreated celiac disease are at a higher risk of anemia, preterm labor, stillbirth, and having infants with low birth weights (growth restriction). These problems are related to a combination of maternal nutrient deficiencies during pregnancy, as well as effects from the attack of the placenta by maternal auto antibodies (TTG).


As a part of taking care of premature babies, it is important for me to review the medical and obstetric histories of my patients’ mothers. I have come across women more times than I can keep track of who, upon review of their medical records, may have celiac disease (some combination of irritable bowel syndrome, anemia, thyroid disease, depression, infertility, diabetes, and/or asthma). I have a friend who did a small research study during her fellowship in which she evaluated the mothers of low birth weight babies for celiac disease. Through her study, one mother was diagnosed with celiac disease. Similar research has recently been conducted in Italy, with results mirroring my friend’s.


Based on the information on the University of Chicago Celiac Disease Center website, once a woman is diagnosed with celiac disease and on a strict gluten free diet, fertility should return. Experts have recommended waiting between 6 months to 2 years once being gluten free before trying to conceive, in order to give the body time to heal. It is essential for celiacs to be on appropriate vitamin and mineral supplementation while pregnant.


It is assumed that pregnancy outcomes for women with treated celiac disease are similar to those of women without it. The only exception is that celiacs are still at a higher risk of miscarriage, even when we are gluten free during pregnancy. I have personally experienced this; back in 2011 I miscarried within days of bad “glutening” episode.


In summary, women with unexplained infertility should be screened for celiac disease. Once diagnosed, it is important to remain strictly gluten free and take a good gluten free prenatal vitamin while pregnant. One of the best resources to check the gluten status of a medication is at www.glutenfreedrugs.com. Last of all, try not to worry about the effects of celiac disease on your baby! Treated maternal celiac disease has no association with birth defects, heart problems, cerebral palsy, etc. However, if you are like me, you will worry about your baby throughout your entire pregnancy…this is a totally normal part of being a mom!


For additional reading on celiac disease and pregnancy, I recommend the following links:


1. The National Foundation for Celiac Awareness’ 2009 article “Pregnancy and Celiac Disease.”


2. “Celiac Disease: An underappreciated issue in women’s health” by Shah, S (2010).

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This is very interesting information! It's believed that my mother's celiac was triggered when she was five months' pregnant with me after having an emergency appendectomy. She became extremely anemic, and I was born with Rickets. My three siblings clocked in at over nine pounds, but I weighed only 7 pounds 7 oz. As a child and adult, I suffered from MANY symptoms of nutritional deficiency and miscarried three times. I did give birth to two healthy children. One has confirmed celiac, and I suspect the other one has it, too (but she refuses to be tested). This can definitely be a scary disease!

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Hi, Thank you for commenting...I am happy to know that someone is reading! I think that this is a big reminder that Celiac Disease is a multi-systemic autoimmune disease which effects much more than the GI tract. I am a mom of 4 and I am very closely watching all of my kids for symptoms. My mother was not diagnosed until after I was, and looking back, we can see signs and symptoms in many family members. I am trying to increase awareness because I find it so sad that there are so many women out there with unexplained infertility who may have untreated Celiac Disease.
Anyway, thank you and all the best to you!
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Thanks for the great information. I'm getting mixed feedback from doctors regarding pregnancy. I have just been diagnosed with Celiac (I'm 37). I have only had symptoms for 6 months and all my nutritional levels seem to be ok. However, I do have stomach damage. Both OBGYNs I consulted said that I should try to get pregnant immediately and that the longer I leave it, the more chronic the condition will become - resulting in more problems. However, I read here (and elsewhere) that it's ideal to let the stomach heal first (I presume so that you'll be able to absorb nutrients normally during pregnancy). Not sure what to do!

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Hi Josie,
I am sorry that I am just seeing this now. I think that you are getting differing advice because you fall into such a gray area of what to do. Although it makes sense to wait to heal, improve your bowel absorption, and rest (as I wrote about in this paper when I reviewed this topic), if you are 37, your fertility is rapidly dwindling. Although I cannot give true medical advice on here, if you were a friend of mine I would suggest trying for the baby! I hope that whatever you choose, that things go well for you!

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    • If someone is doing an elimination diet and not having dairy for a while, would I still be able to eat some cheese since it is low in lactose? Or is best to give up any and all dairy during elimination trials?  Oh,and for cheese, I think it was the Cabot website for hard cheeses that mentions almost all theirs is gluten free. But sounds like most cheeses are.  Still, it can be nice when the company's website mentions it. 
    • Thanks, Ennis.  Do you know, is corn considered one of the top 8 allergens?  I am not sure yet if dairy bothers me, but if it does not, I still need to look for corn starch or corn syrup in ice cream.  Luckily, some Haagen Dazs seems to be corn-free.   Thanks for the links.  
    • As your vitamin d and iron levels are low it suggests celiac disease because if I am not wrong ,your iron levels is low without any reason.  To rule out confusion you should go for celiac gene test. Because if your gene test is positive then you should go for  biopsy of small intestines to confirm the diagnosis about celiac disease.   I also have heaviness,nausea and various other symptoms I am on gluten diet since one year and my gene test is positive for celiac disease and symptoms also suggest.  So, according to my knowledge your all symptoms will get better after you start gluten free diet if you have celiac disease or gluten sensitivity.   Best of luck! 
    • I would avoid those "noodles" starches = gas right now.
      I avoid most stuff like cabbage, broccoli in all but the smallest amounts (1 leaf or 2-4 sprigs) and cook til mush. I found higher density vitamin greens to be best to avoid wasting the room I had for food, stuff like spinach, kale, butter leaf, romaine all have much higher ratios of vitamin A and K then other greens with less sugar, starches, carbs. So you can cram more in there.

      Soups, during flares, I find using meat and herbs to flavor them best, I got a Pots de Herb blend that is nice from The Spice House, tested gluten free for me. But gentle herbs instead of spices...think of Italian and french cuisines. Bit of oregano, basil, rosemary, thyme, etc. Avoiding peppers, spices, and going very limited to no garlic and onions. Funny fact they make bonito flakes (dried fish) like Eden Foods, that makes a good fish flavoring if you boil them into water. Not now but later you can do this with coconut secret aminos,  wakame, or kambu for a asian fish stock for soups.

      I would seriously suggest trying eggs...they have been my savoir for flares, I just cook them soft with almond milk in them in a microwave so they are moist...and soft.

      I treat myself about once a month with either canned tuna, salmon, or millers crab meat (the real stuff), I found the crab easiest to digest and a super strong flavor in soups or with eggs.

      But again step back and say "I will try this for the first week" "Try this the second week" etc. Step by step on how you will try stuff, I know you want to jump to it and try to see what all you can eat but you have to space it and take it every few days for your testing of yourself to be accurate.

      Simple foods, the fewer ingredients the better, give yourself a low single digit number and stick to it so you do not get overwhelmed.
    • I think turkey would be great!  I am sort of thinking you might just want to do a sort of bland diet - as if you were getting over the stomach virus.  So a simple chicken soup with some cooked veggies like carrots and green beans or peas - you can then put it over rice or rice noodles if you want.  I like your idea of staying away from dairy, etc.  You can do that for a few weeks.   Grill the chicken on the grill or cook with a little olive oil in a pan - you can get a nice brown on the outside that adds a lot of flavor.  then put  little water in the pan and boil it and scrape the bottom and dump that in with the rice or veggies that are cooking.  You can throw that chicken in your soup/ rice.  If you cook fresh spinach in things - it can add a lot of spinach flavor.   I think cooked fruits or veggies are usually the easiest to digest.  But really keep it to a few things for a couple of weeks then add then when you are feeling a bit better.
    • One thing, I noticed cabbage was okay on the FODMAP plans, and even broccoli. This seems so surprising since you hear so many people say that both of those give them gas and bloating.  Do you think most veggies on the FODMAP plan would be okay during an elimination diet? Other than ones that are mentioned as no-go's on elimination diets like tomatoes, bananas?  And would canned tuna and salmon be okay.  I have heard avocado is iffy.  I was thinking tuna and avocado would be a good lunch, but now I am not sure.  But again, maybe I am getting too hung up on this, over-thinking it. Maybe just concentrate more on the main foods to avoid? (the dairy, eggs, soy, corn, oh, and potatoes, all nightshade veggies)  
    • Thank you Ennis and Kareng.  I think I was starting to get too upset over all this.  Thanks for putting up with my whining and complaints, and thank you both for offering help and suggestions. Your last two posts helped me sort of chill out and I feel I can take this one step at a time now.  Things have been busy, and I have not felt well for so long, and other things going on in life right now, and I was starting to feel so overwhelmed with everything.  I was thinking I can cook up a big batch of chicken, and I often saute green beans or roast carrots.  Would turkey be a safe choice also?  I am not sure whether to also eat beef, or try not to for a few weeks. I see it on some elimination diets, but not on others.  However, I like that idea to for now, just give up the main foods that tend to bother people (the soy, corn, dairy, eggs, grains).   I was thinking of making chicken soup also, and could put some rice in that.  But I was wondering about making some veggie soup.  But the thing is I usually add some tomato sauce to it, but if I avoid tomatoes for a few weeks too, I am trying to think what to flavor a veggie soup with during this.  I'd still put celery, but if I give up onion, bouillon cubes, tomato sauce, garlic, and spices, I am not sure what to flavor soups with.  I suppose maybe as long as there is the celery.  Then I usually do veggies like spinach (or kale or escarole), carrots, green beans, cabbage.  Although I need to go look up veggies that cause less bloating and gas, like that low FODMAP.   I thought it might help if the veggies I used during these few weeks were the less fiber and gassy ones.  And if I have a little fruit, try and pick those on the FODMAP plan?  I don't know.  I noticed some elimination diets mentioned no bananas.  There seem to be a few veggies and fruits to avoid in some of the stricter plans.  I need to also remind myself, this isn't forever. It is just to get my stomach in a better place so I can then add things one at a time to see what bothers me.  Right now I am about ready to even call the drug companies about my prescriptions to make sure there is no corn or soy in them.  One I started taking in January, and it feels like when I did that my stomach started getting a little worse, and over the past months has increasingly gotten worse again. But who knows.   Then also I will not use any spices for a while.  I know some people on this forum have good results using McCormicks, but so have had issues with it.  I use McCormicks like pretty much daily, so need to give that up also for a little while to see.  Any suggestions on a soup to make, or anything for a good staple during this?  I am also wondering if it'd be okay to eat the noodles I've been getting which the ingredients are rice flour and tapioca starch.   I had been keeping a food journal and so will get back into that habit. I stopped doing it once my stomach got better, but I need to get back into that.   Thank you both for your help.  I really appreciate it.  I finally calmed down about it.  It is still a frustrating thing, but I need so badly to figure out what is causing issues.  There are things I ate when my stomach was at its worst that seemed gentle on my stomach, like eggs, bananas, even milk (I would often have a glass of milk and a banana for breakfast).  So maybe those things will end up being okay in the long run. Or I wonder if once my stomach got used to no gluten, now it's showing me other things that are bothering it.  We'll see.     
    • I am almost completely lost in my symptoms and tests.  Do you think these symptoms are enougt to say that I am celiac? I have the same weight since I was 16 yo, now I am 45 and I have 47 kg - I can’t gain or lose weight. I have huge problems for last one year and half with reflux which is my primary symptom. Heartburn actually  with numb tongue and burning mouth. My GI doc say that all my problems  are caused by LES (lower esophageal sphincter) not working proprely and that I have bad motility and dyspepsia. I am taking  lansoprazol for a year now, but the daily dose helps me just through half od a day. And I can’t eat “forbidden” food when I am on them. And I feel awful nausea when I take lansoprazol. Blood test for IGA was 16,4. For celiac disease it should be over 20. That’s why my doc said that we won’t do any other test, because this one is negative. Bur I am always bloated, with gases, belching, pain in stomach and lower abdomen, usually one hour after eating. Also have pain just under upper right ribs. Always constipated and nauseous. Fatigue is worse after I eat something with flour and sugar. But I can eat without any problem meat, potatoes, lettuce, beans, lentil... I have reflux usually after eating peppers, tomato, black pepper, chocolate, but lately I can’t eat nothing. I get reflux from nothing. I had extreme reaction to coffe with sugar one months ago and since than I can’t get rid off reflux.  I also have undigested food in stool lately too. VItamin D level is 16. Iron in blood is lower each month. Bile is a bit high. All other stuff is normal. I am waiting for magnesium, calcium and vitamin b 12 levels. is it possible that I have celiac disease?  I am on diet last 3 days and I have noticed that gases and burping are getting better, I am not bloated so much anymore, but reflux still persists. If this is celiac disease, how long I can expect till I will notice some improvement? Did anyone had same problems with reflux and how dis you solve it. I would appreciate it a lot!!! Best, Aya
    • Good to know that you get right diagnosis.  In 06 biopsies it is possible to get negative results for celiac disease because it is also possible that gastroentrologist has not taken biopsy from damaged area. Be sure to learn about cross contamination and be on strict gluten free diet.  Best of luck! 
    • I agree with cyclinglady,  straight away go for strict gluten free diet as your increased levels of blood show celiac disease and also go for gene test to get confirm diagnosis if biopsy comes negative or even positive.  It will confirm your diagnosis.  Best of luck 
    • Tigercat17, I would appreciate if you could tell us how you are going? I am in a quite same position, desperately searching what could be the reason for my reflux. So I would love to know what was causing tour reflux and how did you solve it.   Thank you, Aya
    • You did not say what the cause of your hypothyroidism was.  Is it autoimmune (Hashimoto’s)?  Were you tested for thyroid antibodies?  If your body is under attack by “self”, it can cause your thyroid to work on and off.  Celiac disease or not, it might not just be related to malabsorption (but it could).  If you had two positives on the celiac panel, you should consider seeing a Gastroenterologist  and getting an endoscopy.  Not only can it identify damage to the small intestine from celiac disease, but rule out other concurrent issues (Gastritis, cancer, SIBO, ulcers, etc.)  but that is not always possible for financial or access to medical care.  If you do go gluten free, have those celiac antibodies retested to see if you are adhering to the diet and/or help confirm a celiac diagnosis. It can take over a year for antibodies to come down.  It can take months or years to feel well (it sound like you may have two concurrent autoimmune issues).   I wish you well!    
    • My endoscopy visually looked good.  My biopsies revealed damaged villi.  So, you just need to wait for the pathologist’s report.  
    • After you’ve been on the gluten free diet for 6 to 12 months you could have the antibodies retested.  If they go down that would mean your GI has the right idea!
    • I would really suggest following up with GFinDC suggestion and get tested for celiac. Your complaints about the fatigue, joint issues, fog, anxiety, depression and worsening ADHD are all things I used to get in highschool way before my diagnosis. See about starting the gluten challenge of eating it daily for 8-12 weeks and getting the blood test. If you feel it will interfere with your life, try taking like a tsp or 2 of vital wheat gluten before bed and trying to sleep it off.

      Knowing the issue will be a big relieve and will help with sticking more strictly to the diet and getting support from family and doctors about the diet.
    • Maybe I can send some of  our cats there on permanent vacation...
    • Hi, Eat meats, veggies, buts and eggs.  Skip all the processed foods and also dairy and oats for a few months at least.  It can take 18 months to a couple years to heal from celiac damage.  The simpler your diet is at the beginning the easier it is to identify troublesome foods.  It is also good to cut way down or eliminate sugar, and carbs for a few months.
    • Hi, Keep going on the gluten-free diet.  It can take 18 months or more to heal, sometimes several years.  Try reading the "Newbie 101" thread in the "Coping with Celiac" section.  It has some getting started on the gluten-free diet advice. The best way to start the gluten-free diet IMHO is to stick with non-processed foods.  Things like meats, veggies, nuts, eggs.  Skip the dairy and oats for a few months.  Avoid sugar and carbs.  It sounds like your keto diet should be doing these things already.  That's good!  You also need to watch out for / avoid gluten cross contamination.  Even a small crumb can cause an immune reaction. Another thing to do is have your vitamin and mineral levels checked.  You may be low on some nutrients that your body needs to heal.  People with celiac are often low on B vitamins and vitamin D.  Sometimes iron and selenium too. I am assuming you don't want to do the endoscopy and get a full diagnosis.  If you are planning to do the endoscopy you should be on gluten for a couple weeks ahead of time.
    • Hi, yes, you can have an allergy and a food intolerance.  Allergies are IgE immune reactions, food intolerances are IgA or IgG immune reactions.  You can get tested for allergies with a skin prick test. They test for celiac disease with a blood test first, and then an endoscopy later. The celiac blood tests are: DGP IgA DGP IgG EMA IgA Ttg IgA Total serum  IgA Each of these antibody tests have a range of possible values that varies by the lab.  You need the ranges to interpret the test results. The 2nd test is the endoscopy where they take 4 to 6 small biopsy samples of the small intestine lining.  Then they check the biopsies with a  microscope for damage characteristic of celiac disease. There is also the DH (dermatitis herpetiformis) test.  DH is a skin rash that only people with celiac disease get.  They test for it by taking a small skin biopsy from next to a lesion.  DH tends to appear in a symmetrical pattern on both elbows, butt cheeks, knees etc.  DH can be very itchy also.
    • Hi, I think you have a good GI doctor!  The endoscope can only reach about 5 feet into the body, so the doctor can't see much of the 22 feet long small intestine.  So a negative biopsy from the first couple feet doesn't mean whole lot IMHO. Response to the gluten-free diet, either improvement or deterioration of symptoms means that gluten is having an affect on the body.  Otherwise there would be no change.
    • Marathoner/Cyclist/UltraRunner 36 year old female  I have had neurological symptoms for many years that have slowly gotten worse as I've gotten older of, what I believe to be, Gluten Intolerance.  Namely: anxiety and depression (I never sought an official diagnosis because I didn't want to be medicated), ADHD/bad short-term memory (My mom said that I've always "just been like that"), brain fog and extreme fatigue/naps ("It's because you're getting older, haha drink more caffeine, quit running so much," etc), occasional migraines ("It's hereditary"), and, more recently, joint pain ("You need to quit running and get more rest"). I have a tip-top diet eating LOTS of fresh organic green vegetables, fruits, whole grains, eggs, quinoa, seafood, chicken, limited dairy, and I take the right supplements for my activity level. I have never displayed irritable bowel with gluten but I did have more unstable bathroom habits while on training runs. After being so frustrated with my fading energy levels and brain fog, I did tons of Googling of my symptoms that apparently only *I* thought were concerning. I began to suspect a Vitamin B12 deficiency was to blame for my lethargy. I began to supplement with sublingual B12 and it seemed to help but I was super-confused as to why I wasn't absorbing B12 from my diet which was plentiful in B12.  After a bout with the flu this last winter, I suddenly developed a sort of whole-body rash that would develop after each and every training run. It was a strange rash because it happened right after finishing a run, and broke out primarily on my elbows, knees, buttocks, abdomen, and sometimes my neck and face. The bumps were more like HIVES, raised, sometimes as wide as an inch, and itchy. My airway was never affected and so I kind of tolerated it for awhile, thinking it was a strange phase.  When it didn't go away, I started Googling again. I came up with something called "food-dependant, exercise induced anaphylaxis." One of the triggers of FDEIA was wheat. And when I looked more into the multiple symptoms of gluten intolerance, a big fat lightbulb clicked on in my head.  All of the troublesome symptoms that I was blaming on age and running and heredity matched up pretty darn well with WHEAT. I immediately experimented by cutting wheat out of my diet completely and within 1-2 weeks, my annoying symptoms were gone, I felt rested, clearer minded, with a brighter mood. The post-exercise rash went away. I began thinking about trying to get an official diagnosis (am I gluten sensetive? intolerant? allergic? celiac?). When I learned that I would have to go back on wheat for awhile to get a diagnosis I decided to just live wheat-free without the diagnosis, however, part of me really wants to know! Is it possible to be both allergic to (post-exercise hives) and intolerant to (brain fog, adhd, fatigue, loose bowels, joint pain, anxiety) wheat? Thanks for any insight!!~~~~~~~~ For the record, I ate pizza about a week ago just because.....and while nothing significant happened after I ate, I broke out in a horrible hivey rash the very next time I went on a run. Bodies are strange!
    • Firstly,  I was diagnosed with Hypothyroidism 18 months ago.. (TSH 39) Synthroid 100 to start with and by this April was increased intermittantly to 212mcg...  My Levels seemed to decrease initially, but then began to rise again (still at 19.42),,  Dr. referred me to a specialist (saw in May) who suspected Malabsorption to possibly the "brand" of Med and switched to Eltroxin.  My other symptoms include -Weigh GAIN, High Blood Pressure (2 meds) Extremly dry skin especially on instep of feet and all over general dryness. Ocular migranes.  Extreme fatigue and fog brain.  I have tested positive intermittantly with microscopic blood in the urine, and had a internal bladder scope showing no problems....   So, being so frustrated with the cycle weight gain causes increase BP, tiredness etc.  I did a ton of research and Started a KETO diet.. My followup (after labs) with the specialist was 3 days ago and she advised that she had labs done on Thyroid - still at 19.26 - but advised that I am positive (2 tests)  for "Silent Celiac" and I am not absorbing my meds. I told her I had gone Keto and hadn't had any grains etc for 4 weeks and I still feel the same..     So where do I go from here?
    • Hey all, I wanted to see if anyone else was in the same boat. I saw a GI for the first time 3 weeks ago after my former (pediatric) GI recommended me to him. I was diagnosed with GERD (chronic acid reflux) as a kid, and she wanted me to continue treatment as an adult. My new GI talked to me about my symptoms and my diagnosis, and told me that he thought my GERD diagnosis was wrong. He wanted me to do some bloodwork, and stop taking my anti-reflux meds before an endoscopy, just to make sure nothing else was going on. When we got my serologies back, the only abnormal thing was that my tTG-IGA tested positive for Celiac (my levels were 14, with < 3 being negative). We did the endoscopy a week later, and that was completely negative. In fact, he told me that my intestines looked like textbook-worthy, healthy intestines. Because my results didn't match, he ordered genetic tests for HLA DQ2 and DQ8. I tested positive for both, including 2 sub genes for DQ2. Because of the genetic tests and the blood tests, he officially diagnosed me with Celiac. I know that Celiac typically isn't diagnosed without a positive biopsy, so I wanted to see if anyone else had had a similar experience. I'm already feeling better after being gluten-free for less than a week, so I don't think my GI is wrong, I just think this is a pretty strange experience.
    • Congratulations!  That is such great news!  I'm sure that you feel great getting that result and knowing your hard work has paid off. 😀
    • Thank you - I had my endoscopy today and the doctor said he didn't see the telltale signs of celiac but he did biopsy. There were a number of other things he noted, like a polyp found in the fundus, and my stomach was very inflamed.       He said to start a gluten free diet right away anyway.  It is hard not to get ahead of myself and wonder about the results and if they come back negative.   
    • Congratulations!!🎆🎇🎊🥂  
    • Becca4130, Being gluten free for a while would cause your blood serology to test negative but many people choose not to finish a gluten challenge because of how bad they feel on gluten. NCGS is a real thing even though most doctors don't recognize it today. See this care2 article that explains what might be  happening in your case. https://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html The rate of positive blood serology is 2x higher than biopsy confirmed Celiac disease. see this new research about the rate of NCGS (serology postive Celiac)  in the general public without positive biopsy.  . . though for this research they considered both serology (blood tests) and biopsy confirmed celiac diagnosis as the real rate of Celiac disease in the general public. quoting Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals." Which they say  quoting again "means that numerous people with celiac disease potentially remain undiagnosed" or I think in many causes NCGS is not being declared because they consider a blood positive test inconclusive in the absence of a confirmed biopsy. and it sounds like what is happening in your Case especially since you have been gluten free long enough to not test positive on your blood work. See the Care2 article which is typically 6 months and your antibodies goes down naturally when you are gluten free that long. quoting "Though the cause of the two conditions seems to be very different, the study confirmed that the best treatment is the same for both conditions. After six months of only consuming gluten-free grains, the NCGS group reported a significant improvement in their digestive and non-digestive symptoms, and the immune system markers identified earlier in the study had normalized." ****this is not medical advice but what makes sense to me after having been serology (blood) positive for antibodies that went down on a gluten free diet. You might also see this thread that talks about some of these same issues. I hope this is helpful and good luck on your continued journey. I also meant to add this link http://www.mdmag.com/medical-news/not-everyone-predisposed-to-celiac-disease-develops-it Or It could be you have not developed celiac yet because your gut biome has protected you so far from developing it. quoting "The study authors determined that while about 40 percent of the population have a genetic disposition to celiac disease, just about 1 percent develop the condition upon exposure to gluten. Mice who housed Pseudomonas aeruginosa bacteria (Psa) in their guts – transplanted from celiac patients – metabolized gluten different than mice treated with the probiotic Lactobacillus.

      The researchers further observed that Psa produced gluten sequences that initiated inflammation in celiac patients. Lactobacillus was used to detoxify the gluten.

      "So the type of bacteria that we have in our gut contributes to the digestion of gluten, and the way this digestion is performed could increase or decrease the chances of developing celiac disease in a person with genetic risk,” senior study author Dr. Elena Verdu explain(s)" Again I hope this is helpful. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God,
    • Fun fact, google your doctors name, 2-4 review sites will have them and their info. You can submit a public review of your doctor.......inform people of this story on the review sites and this doctors "incompetence" in relation to your disease.
    • After I posted this, he called me because I replied to the note questioning if I was reading the test results correctly because they didn't look negative to me. He told me that A. diarrhea is not really a symptom of celiac (huh, wonder why all the poop jokes about it then...) B. if I had both genes plus a positive antibody test, that would mean that there was about a 95% chance that I do have celiac right now, not a potential to develop it and C. if I stay on a gluten free diet (which I don't have to because he says I don't have celiac) then he won't retest the antibodies because of course they will go down and there is no need to test. I'm pretty much speechless. It is abundantly clear why he was the first available when others had a wait.
    • Fan favorites such as Da Lobsta and CheSa's Gluten Tootin Free food ... Owner Chesa Reé, who has celiac disease, knows the difficulty of finding ... View the full article
    • I was diagnosed and started a gluten free diet almost six (6) years ago.  I had no obvious symptoms, but high positives on TTG IgA and IgG, EMA, and DGP IgA and IgG.  Most came down to normal in about a year; the DGP IgA was lower but still high.  Finally, after almost six years, DGP IgA is in the normal range for the first time!  Just barely, 18 when normal is 0 to 19, but I'll take it!  Last year it was 24.  My diet for the last three years has been whole foods with a very few carefully chosen certified gluten free additions.
    • It is so frustrating that so many in the medical field know so little about celiac disease!  After you have been on the gluten free diet for 6 to 12 months perhaps your new GI can order the antibody tests again to see if the levels have gone down.  Lower antibodies on a gluten free diet would point towards celiac disease.
    • Followup - nurse sent me a note via mychart that "the gene test was negative" but if I feel better gluten free, I should continue it. This was a big surprise, since I already ran the info through Promethease and it said Dq2 Positive Dq8 negative. So I went to the test results themselves. Sure enough Dq2 positive, Dq8 negative with a note from the doctor saying "patient carries only the dq2 gene, not the dq8. This means she is much less likely to have celiac sprue."  I could spit nails. I am educated, I know that 80% of people with celiac carry only DQ2. I have already had a followup with a different GI who was wonderful. But this is how people go 10 years undiagnosed and only find it when they are so sick.
    • It sounds like you have made your decision and all I can do is wish you luck.  You already have multiple autoimmune diseases, why take the chance of collecting more?  I speak from eight years of experience.  It is quite easy to eat gluten free and no more expensive than any other "diet".  It's all in what you choose.  You said you prefer processed foods and that's where the expense is.  Clean, whole foods are naturally gluten free .    
    • Thanks.  I have a follow up with the PCP next week to go over all of the previous tests and make a plan for next steps.  I left a message for the GI regarding my diet in case he wanted to have the blood test repeated and have me eat gluten.  No response.  It took over 2 months to get the capsule results after leaving voicemail and patient gateway e-mails, so I'm not holding my breath.  I will see if my PCP can recommend someone more responsive for the next steps.  
  • Blog Comments

    • Hi, You could try taking some vitamin C with your vitamin D and also some vitamin K2.  Also, eating mackeral, sardines, tuna and salmon can give you some Vitamin D.  Check out the vitamin D council for lots of info.  https://www.vitamindcouncil.org/
    • I am dealing with stress fractures in my feet.  I had my first operation about 5 weeks ago, and we are sure I have fractures in my other foot.  I have also broken both wrists and elbow at different times but within a month of each other.  I am already in a wheelchair due to strokes for the last 28 years.  I am still going and do not intend to stop, but all I know is that I am not absorbing my vit. D.  I take 200,000 units a week and still am having problems with my D.  Any ideas would be appreciated.  Thank you.
    • I am blessed to have found a good dentist that will work with financing and good pricing, just having to wait til my family gets the money which will be soon to get the down payment.

      Well the problem with working in other places...I have found some gluten free places...that work with corn which I am highly allergic to. The so called Paleo places still have wheat options and non gluten free kitchen..so no tasting or safe to work in. NONE of the trucks even in the big cities here are 100% gluten free or even safe for celiacs...just fad options.
      I love working in safe environments for limited time frames like what a food truck would involve, or working out of my own kitchen like I am now doing catered meal and bakery commissions.
      I really just wish I could have someone come up and offer to run the whole paperwork/sponsor side and just let me run the damn kitchen in a truck (every chefs dream, just let me cook). I am starting a new chef FB page (yesterday) and showcasing dishes hoping to gather a following then start pushing for investors. Thanks for the imput.
    • Your blog post says a lot about the poor state of health care in the USA. Since you are in TX (I believe) consider crossing into one of Mexico's larger border towns to go to a dental clinic. Of course research which clinic well, as many Americans do this for all kinds of medical treatment, and these clinics cater often to Americans who are in your situation. Last year my son got 2 wisdom teeth pulled in Taiwan because the cost there was far less than even our copay here in CA, and we have full dental insurance. Starting up any business is both difficult, and risky. Above all I think you need to find a job that may allow you to break out of the introverted tendencies and interact with people more. A food truck would certainly do that, but why not first get a job in a food truck, or a restaurant? This way you could decide if that line of work is really for you, then, if you discover that you still love it, find a way to start up your own business, if that is still your goal.
    • Might be getting lucky the infection is responding to this Sovereign silver stuff I was told to take. The tooth, does not feel like my tooth but a dull foreign object in my mouth, it wiggles a bit now. If it falls out, that saves me a few hundred dollars.
      Pushing my chef jobs more, and.....having some issues with my bakery I will highlight in a week once I get the facts straight about the incident and the outcome.