Celiac Disease

Tell Me About Your Diagnosis

gluten-free-kid-celiac-diagnosisSo as I briefly mentioned, after flipping out over gluten-free fried chicken last week, my daughter is getting tested again for celiac. It’s 100% true that this year, in comparison to two years ago, is definitely an easier pill to swallow. I know more, she knows more, we’re all like, “Okay, just tell us what’s up.” Still.

It’s been taking up a huge amount of space in my brain for being all casual about the whole thing. I know I should be doing things like getting parking permits, doing some working and stuff, probably sorting out hiring an intern, and general family business this week but all I can think about are the results I might get from my gal’s blood test that went down last Friday. There are feelings. Lots of feelings.

My girl has had a few incidents where she got sick after eating gluten lately, some that are so identical to mine that I’m all, “Oh hells.” Other times, she downed a bagel and went on about her day. (I remember when I was convinced if I had a cheeseburger from In ‘n’ Out (with bun) I felt better. I think I might have. Or I might have had such zeroness in my digestive system, that nothing was happening.) Some days I’m all, “She’s got it,” and I sit down and cry a little. And other times I truly believe I’m overreacting. The point is, there is no easy way to know if your child has the sprue other than the medical business we’re undertaking right now.

So we’re waiting, and waiting, and I’m wondering why I’m still waiting to hear. That is probably the most frustrating. Just not knowing, but feeling like something is simply not right. I’m sure a zillion of you can relate.

In the meantime, tell me your story! Was it a quick and easy diagnosis? A painful lifetime of bad doctors? Or was it a shock, with very few symptoms?  Let’s share our gross gluten stories! Hurray?

41 thoughts on “Tell Me About Your Diagnosis

  1. You know you’re my hero! Always love to read what you write. And you’re one of the tools in my toolbox for when I’m glutened. Pain. More pain. Best friends with my bathroom. Read something by Amy and then: not feel so alone, laugh, get on top of it again. I’d be glad to share my boring yucky story and will next I get a 1/2 hour where I can sit and think and write about it for you. Meanwhile, holding good thoughts for your daughter, you bet. Jeanne

  2. I lucked out with my diagnosis, I got really sick while we were on vacation and went to the ER, the doctor was concerned that I may have gotten a parasitic infection and did an intestinal needle biopsy which came back negative for the parasite but positive for Celiacs! I had already removed gluten from my diet so it just reaffirmed my life change!

  3. My story… I work as a college athletic trainer (sports medicine).. Which means 4 days a week I might be on the road.. which also means half of those meals are fast food after games or in the airport. After 7ish years of this type of profession- traveling about 6 months a year. I was fed up with always feeling horrible. I would have lots of GI issues, tired, crabby, you name it.

    I had just started a new job, in a new place, with a new team; and I felt horrible. Between treatments in the morning and practices in the late afternoon- I would go home and take a 3 hour nap.. and sleep all night… and still feel tired. I went to the doctor who diagnosed me with depression. I thought… well maybe??? But I like my job, I like the new peeps I get to hang out with.. not quite sure about this. So I got placed on Prozac. 3 months later there was no change. I went back. They took a lot of blood. I was then tested for anemia. My ferritin was a 2.. A gosh darn 2!!! I work with endurance athletes and the lowest I had ever seen was a 6. A 2 is not good. I was then placed on ferritin suppliments.. Which 3 months later brought that 2 up to an 8. Which is when a new physician assistant (I was so over the physican I was seeing) ordered a test for celiac sprue. We discussed that yes I do have cousins with this disease.

    So while I was on the road.. In Vegas.. and feeling horrible. I kept calling for my results- which apparently if tests are positive- no one wants to tell you. SO when we got home- I was told- Yup – you have celiac diesase. I then asked what do I do. I was told to Google a gluten free died… REALLY??? Thats my advice??? It was devistating. Finally I talked to one of my team physicians who hooked me up with a lovely GI doctor. Who listened, talked to me, and gave me real advice. I got a whole bunch of books- of which none were nearly as good or informative as “Gluten Is My Bitch”.

    And now.. I am happy. And healthy. And feel good. And no longer travel with teams. I tell everyone about “Gluten Is My Bitch” and a few newly diagnosed friends agree that it was a life changer.
    So thank you!!!!

  4. My dear April, I wish you could get to a place where you understand that you don’t stop eating gluten because there is something wrong with you, you stop eating gluten because there is something wrong with gluten. Getting your kid off gluten is the greatest gift you could give her. Why set her up for auto-immune diseases caused by the leaky gut caused by eating glutens? Why go through school in a gluten-induced brain fog? Why weaken her precious, she only has one to last a lifetime immune system? Creating a world where gluten-free (ideally, grain-free) is delicious and meals nourish you and make you feel POWERFUL, not painful is the greatest gift you could give her.

    I’m not cursed by a “weak Irish tummy” (as some of my celiac friends call it, fatalistically lamenting their diagnosis). I have a Lupus diagnosis as a result of years of food toxins, environmental toxins, yeast imbalance, stress taking a huge toll on my immune system. So now I work to eliminate them and reverse the damage done before I knew better. I’m good and mad at a food system that has destroyed grains and otherwise poisoned our food chain. I’m making the connections between grains and dairy and sugars, and feeling so much better.

    We have a saying the The Duggan Sisters: “a diagnosis is just a suggestion” So I hope you will hang tough, work for your own restored health holistically (short of some futuristic miracle cure) and embrace that you are a voice for power of eliminating the toxins of gluten, not suffering that they are a loss. Good riddance to garbage.

    You are a warrior, a survivor – you don’t have to be a victim. Don’t be mad at your body, be mad at the garbage that poisoned you. Hang tough, my friend. xo – Clare

  5. Copied and pasted from my blog. 🙂
    I got the “you have celiac disease” phone call 7 years ago, about 2 months after being diagnosed with hypothyroidism. Two autoimmune diseases in one year didn’t even phase me or yield a tear at the time. I’ve probably only cried a handful of times about my celiac, and never about my sluggish thyroid. This might seem a bit odd considering that my favorite cuisine is Italian – pasta, pizza, bread, cannoli, tiramisu, etc. Maybe something my best friend said helped. As I was sitting outside my doctor’s office in my car, after I described my symptoms, she said, “maybe you have MS.” Thankfully, I did not. It could have been worse. Maybe it was because I pretty much diagnosed myself and knew what was coming. The phone call just confirmed what I already suspected. Maybe I wasn’t too upset because we were just about to leave North Carolina to move to Orlando, and I was leaving the best pizza restaurant in the United States behind. I would not have to watch my husband and kids eat pizza that tasted just like the pizza we had enjoyed during our trip to Rome years before. Plus, I was moving closer to Disney, my favorite vacation spot, where the restaurants are allergy friendly.

    After living in Mooresville, NC for a year, I began to experience numbness in my feet while standing in church for prolonged periods of time. I didn’t really notice it when I was teaching, because I was always walking around my classroom, so I didn’t think much about it. I also started to notice numbness and pain in my hands all the way up to my elbows, but blamed it on the fact that I was spending too much time typing history notes every day. I finally went to see a local doctor about the pain in my arms. During the examination, he noticed that my thyroid seemed to be enlarged. Two days later, my doctor called and told me that my thyroid was a “slug” and I would have to start taking Synthroid. One pill every morning. It seemed pretty easy to me. No big deal. My dad is a pediatric endocrinologist, and he wasn’t concerned. Hypothyroidism is not uncommon in his family. Did I have symptoms? Maybe I was a little more tired than normal, but my twins were 3 and I had a new job, so I wasn’t concerned. I had been struggling to lose a pound or two, but I chalked it up to lack of exercise, and age as I neared 40.

    Towards the end of the school year, I began to do some research online, and discovered that numbness in your extremities (hands and feet) can be a symptom of nerve damage, caused by prolonged B12 deficiency. I finally went back to my doctor’s office as my symptoms became more unbearable. The physicians assistant I saw had the same thought that I did, and had me tested for B12 deficiency. A nurse called me several days later to tell me that my B12 levels were very low, and that I would have to come in and learn how to give myself B12 shots. Again, no big deal. I had been dealing with allergy shots for years. As I researched the causes of B12 deficiency, I read that it can be caused by celiac, a hereditary disease that my aunt had. I had to ask to be tested for celiac. Sadly, no one in my doctor’s office even thought to wonder why I would be so B12 deficient. I am so thankful for the Internet!

    I got my next phone call a couple of days later. This time, I was told that I had celiac, and I should probably look into a gluten free diet. Probably!!! How about definitely! I ordered Celiac Disease for Dummies from amazon, and I started a gluten free diet a couple of days later, after eating one final Sebastiano’s pizza.

    The numbness and tingling in my hands and feet have lessened over the years, but I have probably suffered permanent nerve damage that will never completely heal, and I still have to give myself B12 shots to keep my B12 levels at a place that is healthy.

    I shed a few tears as I proofread this post, but I am not sure why. I’m so thankful my diagnosis wasn’t anything worse. I have a supportive family. I eat amazing food every day. I rarely feel that I’m missing out on anything. Plus, feeling sorry for myself will get me nowhere. I do hope, though, that I’m done with phone calls from the doctor for a very long time.

  6. Painful life time of bad doctors!

    I always had a borderline anorexic look to me. But I ate constantly. I had horrible GI problems that were always written off as “irritable bowel syndrome” or “nothing” I would get chronic sinus infections and had what I can only describe as year round hay fever. My doctor would accuse me of not taking the medicine he prescribed because it wasn’t helping. But it wasn’t helping because I was having a reaction to gluten- not pollen. I also had bad joint pain that no doctor could figure out becsuse xrays showed nothing. So one day- when I was 30 (30!!) a friend of mine tried to convince me it was all related to gluten. I refused to believe her as my favorite food was bread. And pasta. And anything else containing gluten. A year later I got a call from my sister who told me she had celiac. And it’s genetic. And my sisters and I probably all have it as we all have symptoms. So…. I found a new doctor. Explained my symptoms and my sisters diagnosis. He didn’t bother testing me as I had already stopped eating gluten. He just confirmed my own self diagnosis and told me to continue eating gluten free.

  7. Painful life time of bad doctors!

    I always had a borderline anorexic look to me. But I ate constantly. I had horrible GI problems that were always written off as “irritable bowel syndrome” or “nothing” I would get chronic sinus infections and had what I can only describe as year round hay fever. My doctor would accuse me of not taking the medicine he prescribed because it wasn’t helping. But it wasn’t helping because I was having a reaction to gluten- not pollen. I also had bad joint pain that no doctor could figure out becsuse xrays showed nothing. So one day- when I was 30 (30!!) a friend of mine tried to convince me it was all related to gluten. I refused to believe her as my favorite food was bread. And pasta. And anything else containing gluten. A year later I got a call from my sister who told me she had celiac. And it’s genetic. And my sisters and I probably all have it as we all have symptoms. So…. I found a new doctor. Explained my symptoms and my sisters diagnosis. He didn’t bother testing me as I had already stopped eating gluten. He just confirmed my own self diagnosis and told me to continue eating gluten free.

  8. Oh waiting is the worst, and especially when it’s your kid. I’m sorry and hope she’s in the clear. My daughter, now almost 7, was diagnosed at 3 and we knew next to nothing about it. In a way maybe that’s easier, ignorance is bliss, because now we know it’s not just about the food, but there’s a huge social component, especially for kids, which sucks.

    But on the upside, if there is one, she’s got you, a G free expert mom to be her partner in crime.

    Good luck from a mom who gets it.

  9. Sorry to hear that about your daughter! I am the only person in my immediate family with celiac–if that gives you hope at all.

    My diagnosis was pretty straightforward! I had been having frequent stomachaches and like total exhaustion and nausea after eating for a few months. I started writing down everything I ate and found a connection to carbs. Both celiac and diabetes run in my family so I figured it was probably one of these. I went to my doctor and was like, “I think have diabetes or a gluten problem.” And she was like, “You are probably right.” And I was. I know celiac can really suck, but for me it’s not so bad. I’m lucky to have pretty light symptoms and that I’m not too sensitive–so I think I got the better end of the bargain! Also it helps that I got diagnosed in 2013 when it started getting trendy.

    The part I can’t figure out is how long I actually had celiac. I was anemic in high school (around 2008) even though I was otherwise pretty healthy. I would sometimes get sick for no reason (with my gluten symptoms) after eating Chinese food, beer or pasta–but then I would be fine for 6 or more months at a time. My favorite meal from my favorite neighborhood restaurant used to be a wheat beer with a lentil-barley burger on a bun. OMG I can’t believe I ate that! But I started avoiding that over a year before my diagnosis because I knew it made me “feel weird.”

    Another weird thing–I started developing roseacea AFTER I cut out gluten, but I think they are connected because if I get glutened my face like EXPLODES. But as with almost all of my celiac related questions, whenever I ask a doctor they say, “Yeah, that could be possible… we don’t really know.”

    Anyway, I love your blog, and I also love reading other people’s celiac stories and sharing my own. Best of luck to your daughter!

    • Thank you! And yes, I’m having horrible skin issues that started right before diagnosis, but seemingly got worse AFTER I cut out gluten. This whole thing is crazypants.

  10. I started getting sick when I was nine. My family had just moved to a new town and I started having bouts of diarrhea in the morning before school. I would be in class with the worst cramps. The school nurse kept sending me home and my mother thought I just had a nervous stomach from going to a new school. I just stopped eating breakfast and lunch and carried a bottle of Pepto Bismol in my purse. This was my life up until I finished school.

    In my twenties, I went to see a gastroenterologist who performed a colonoscopy. Told me I had irritable bowel syndrome. Gave me a prescription for Bentyl and told me to eat more fiber. No one believed me when I told them I felt worse after eating whole wheat anything.

    In my thirties I was told by different doctors I must be lactose intolerant. It was my fault my stomach hurt all the time because I made poor food choices. Too much caffeine. Too many fried foods. Maybe I was just depressed.

    Finally, finally at age thirty-nine I had a doctor who took the time to listen to me. I had consulted Dr. Google and read about celiac. I asked her to test me for it even though it was a long shot. She initially told me she didn’t think I had it because I wasn’t thin and malnourished looking. My labs came back positive. I started eating gluten free that day. I am forty-one now.

    Being gluten free is a blessing. I no longer look for the nearest rest room when I go out. My stomach feels so much better, no more diarrhea and cramps (unless I am the victim of the much dreaded cross-contamination).

    I am angry though. Why did it take thirty years to be diagnosed? Why was I made to feel like it was my fault that I was sick all the time? I was never afraid to go to school as a child, I was never a nervous person, I honestly didn’t shove garbage in my mouth 24/7, I wasn’t a hypochondriac, depressed or crazy. I wish sometimes I could wave a copy of labs in every doctor’s face who told me those things and blow the biggest, loudest raspberry and say, see I told you so.

  11. Love your blog and your book! Have loaned it out to many others. My story is kinda interesting. I started having stomach issues, bloating, gas etc maybe 8 years ago and started seeing a Naturopath who took me off gluten. Well, I was probably 75% – 80% compliant, around that time my mom was diagnosed at 70 yrs old – her only symptom for many, many years was that she was anemic. Then her white count started going down slowly over time. She was tested for all kinds of things, cancers etc – nothing showed up. So her doctor did a blood test for Celiac antibodies, positive, then she did a test swallowing a camera to see why her digestion/intestines were so slow, FINALLY a endoscopy biopsy and a Positive Celiac diagnosis. My primary said if I was feeling better without gluten no need to test because I’d already removed it from my diet. Fast forward a few years – my white blood count starts to drops, slowly over a year – my primary care doctor did the antibody blood test – positive for me too.. lucky me! Sent me to gastro who looked at everything, said you need a endoscopic biopsy – but before we can do that you need to eat some gluten daily for the next month so we get an accurate test. Yay! Until I gain 10 lbs in a month, just adding a piece of bread or a little bit of gluten daily – ALL around my middle – I start feeling bloated, gassy, just icky in general. On the table for the endoscopy and gastro says, something and I complain about the weight gain – he shoots back, shouldn’t have had so many donuts… I “nicely” reply… DAMN I didn’t have a donut! And that I hadn’t gone NUTS eating crap that my body has issues with gluten. He replies with you probably don’t have Celiac so don’t worry. WELL, he got to eat his words when he saw my BLUNT almost non-existent villi………. HA! And now I am 100% compliant as a gluten free person and after 3 years have finally relaxed a little about cross contamination – mostly because I am very lucky to not have the HORRIBLE issues if I do get glutened.
    I have a few chronic illnesses, there is mourning period after diagnosis and it takes time to adjust to a new normal. My mom’s favorite saying about this kind of stuff – As long as there is a pill or a change in diet to control or fix what you have wrong I am ok with what you get…. which is a good way to look at it. While your daughter will have to make some changes, she will be able to live a long and healthier life than many!

      • Don’t know, but sure doesn’t make going thru stuff like this easy to navigate. I’ve got a 24 yr old son who is probably Celiac too, said he’s willing to try and give up gluten except for pizza… And no, GF won’t cut it for him…… What’s a mom to do…

      • Jeez, sounds like he needs to get the endoscopy and biopsy so he can have solid proof that he can’t eat pizza. That’s hard for someone in their teens or 20s. Good luck!

  12. My daughter swallowed one of those thin metal filaments from a grill brush and started throwing up a lot. While the GI doc was pulling out the filament, he did a biopsy which came back Positive for celiac. Her only previous symptom was ADD. Rest of us got tested. My older daughter, whose only previous symptoms were psychiatric, tested positive. I had been on prednisone for four years for a misdiagnosis of Behcet’s disease, so my test was negative. Got the DNA test and was DQ2/DQ2. My gastro has no doubt I have celiac and said the first vlue was that my name is Kathleen. An Irish girl whose main complaint is mouth ulcers walks in, test her for Celiac! (If you are a middle eastern man, it might actually be Behcet’s). So it explains my years of misdiagnosis with IBS (which stands for Idiopathic I’m too dumB to order a Sceliac panel) and the low weight, low bone density, and years of unexplained weird liver enzyme results. Unfortunately , after years of damage I have chronic migraines. This is why I’m a #MadMigraineMom, and have started joyfully bitching about it on Twitter

  13. I hope your daughter doesn’t have celiac. I wish my daughter didn’t have celiac but she does. She’s 7 and it sucks. She is going to a birthday party this weekend, which means I have to bring gluten-free versions of everyhing for her. At least I have substitutes she likes — Udi’s Pizza and a chocolate cupcake from whole foods. She was a poor eater before her diagnosis in January but now I can’t rely on her former faves -a slice of pizza or a hamburger when we’re far from home. It would be great if one of the gluten-free companies came up with frozen meals for kids. Everyone is always telling me how great it is that gluten-free foods are available in many supermarkets. I know they haven’t tried any of them or they would know that most of the packaging tastes better than the product. By the was my daughter was diqgnosed after she had an endoscopy. Although blood tests can show the presence of antibodies, you can ‘ t see the extent of the damage w/o an endoscopy. Good Luck!
    Mom of “Miss No Bread.”

    • Aww, I know. The birthday party is especially brutal. I can cook for her all I want, and she loves it, but I’m mostly worried about parties and celebrations when I’m not the one in charge of the food. Good luck to your 7-year-old!!!

  14. Mine was pure hell. I went in to get an odd mole removed…4 days later my body was broken out in quarter size abscesses that felt like my skin was on fire. When I called back like wth, I was 20 years old, I need to come in something’s up. I was shoed out the door for them to basically cover their ass because the mystery had begun. 2 years, 22 doctors… Diagnosis from it’s all in my head, to contracting a fist size MRSA filled pocket on my stomach(wow that was one for the books), to dropping out of a $20000 hair school for a year because everyone was scared, still have the spots, pimple to quarter size basically chicken pox looking spots all over my body with intense burning. Doctors just put me on prednisone sometimes 40mg for up to 16 weeks(I was losing it) because they couldn’t figure it out… So back to 2 years and 22 doctors later, I went to about a 70 yr doctor , Dr. Whiting @ Baylor medical in Dallas Texas, who took basically hole punches of my skin found I had DH! Dermatitis herpitaformis, gluten and iodine intolerance, no salt or fish out of the ocean. He only had 6 cases in his lifetime. I had a colonoscopy and endoscopy and found I also had Celiacs. I’m now about 28 with two kids and still have insane issues from the prednisone! I can have uniodized sea salt so I’m basically a glorified home cook, but gf baking is still my enemy. I just want some eclairs, damnit.

  15. I can remember getting sandwiches in a packed lunch as a child and picking off the meat inside because I just didn’t like it. I can remember resenting my mother for forcing me to eat the pasta and home made pizzas for dinner or I didn’t eat. Until I was 17 I had never felt good in my life, I did not know any different. At 17 I moved to Thailand and had a glorious year of a naturally gluten free diet there, you would be hard pressed to find a loaf of bread, anywhere but the capital. Moving back to Canada was the worst idea, in terms of my health, I immediately felt bad again just this time it was increased 10 fold. After many many trips to see the doctor, she never came up with a solution, perhaps because living gluten free was on the rise as as fad diet, not something to be taken seriously. My family has a history of being very healthy, except for me. Now at 20 a year of hell through school, I forced myself upon every doctor I could find here, as it was just getting drastically worse. I was diagnosed with an autoimmune disease, PCOS and Celiac all roughly in the same week.
    For the most part I have been living gluten free the last few years, just this year am I really taking it seriously now that I understand, it is still a struggle for my family to understand but they are trying. Though my only experience with it now that I am paying attention and trying harder is that, it is nearly impossible to live gluten free without surrounding myself in a bubble, it seems to be in everything, or gluten free products are too expensive for my student lifestyle. It is still an everyday battle, my light at the end of the tunnel right now is leaving again, moving away to a country with more awareness or less of a pastry culture, places like Thailand that have natural fruits and veggies, and home grown meat.

    It is very heartwarming to read all these stories, it helps to know that I may not know anyone here with Celiac but there are others out there. For anyone looking to take a G-Free vacation Thailand is the place to go!

  16. It took about five years of tummy troubles to get a diagnosis – for about 4 of those years the upset was put down to side-effects from medication to treat my PCOS, until it became clear something else was going on when my hair was falling out and my arms were covered in eczema. I demanded I be tested based on an idea from my Dad (a haematologist) and my GP was resistant because I “didn’t fit the profile” (ie I wasn’t underweight). I got the results when I got back from a particularly intense desert field trip, and just crawled into bed feeling numb but relieved that I FINALLY had an answer.

  17. I was very sick for many years being diagnosed and misdiagnosed, treated and mistreated for a wide variety of conditions — many of which were very scary. I had a wide variety of symptoms not limited to gastrointestinal. Finally I saw the episode of The View with Elizabeth and Dr. Fasano talking about celiac disease. I went through the checklist I found online checking off symptom after symptom. I called my mom who had been diagnosed with a “wheat allergy” many years before. I know there are big warnings out there not to do this, but I went gluten free on my own without an “official diagnosis.” I experienced improvement very quickly and now almost 10 years later I am very healthy and loving the gluten free life. Two doctors have said that as well as I am doing they would not go back to eating gluten for a biopsy if it were them. After everything I went through with doctors before I am also not a big fan of invasive procedures, so that is fine with me. I don’t consider myself sick. I was for many years, but now as long as I continue on the path of healthy living and gluten free eating I follow now I am no longer sick, but incredibly healthy. The gluten free life is the way to health for me.

  18. At the time I figured out that I had celiac (yep, I had to figure it out myself), I had already been diagnosed with allergies, arthritis, asthma, and Crohn’s. So, whenever I didn’t feel well, I was told it was related to those other boxes that had already been ticked. In an effort to feel better, I thought I would give being a vegetarian a whirl, which included lots of bread and pasta. It literally nearly killed me. I was getting more and more sick without any consideration ever being given to a gluten allergy. Medications of all kinds were tried in an attempt to stem the tide. It wasn’t until I developed a raging case of dermatitis herpetiformis that lasted for months, that I figured out what was happening. I took pictures, cut gluten from my diet and it began to heal. Intentionally ate gluten, and it came back. Went to the doctor with phone in hand, and he confirmed my self diagnosis. He even apologized for not thinking of testing for celiac. Since removing gluten, my allergies aren’t completely gone, but I no longer get raging sinus infections, the asthma is 100% gone, as is the “arthritis”, which turned out to be regular joint pain from the gluten. I still have Crohn’s, but it is largely controlled by diet. When I am glutened, however, I have to go back on medication. Stupid gluten.

  19. Pingback: What The %^*# Is Going On With My Kid? | Gluten Is My Bitch

  20. Mine was quick and easy… Went in for tummy pain – came out with an order to have my Gallblader removed and a few days later a positive diagnosis after a biopsy… The diet change however… not quick, not easy. I love bread so much…..!!! SO MUCH!

    Just diagnosed last week… my head is still kid of reeling from it all.

    • Oh, Abby. I’m so sorry to welcome you to the club. It does get easier, although you have the right to complain about it until the day you die. Good luck!!!

  21. Super late to this party…
    I actually had a lifetime of no symptoms. (Unless we are counting lactose intolerance which occurred suddenly at 20, I’m 26 now) I’ve been overweight my whole life, and a little over a year ago I started to really get into the gym and kick my own ass. While that led to a good amount of weight being lost.. it also led to gallstones. I worked in a local ER at the time, and would have to be dying to go to the doctor. By the time I got to the doctor I was SICK. We did a blood test for Celiac, which was negative, and an ultrasound for gallstones, which was positive.

    She scheduled surgery for two weeks later and said not to eat much fat until then. So what did I eat??? Crackers, breads.. anything I thought would “settle” my stomach. All the while, I couldn’t eat more than a 1/2 cup of anything and I felt like a little sadistic gnome was living in my abdominal cavity that was kicking my organs around and tying my intestines in knots. I would vomit, have diarrhea (sometimes a weird period of constipation)… I was down to eating crackers, and sprite and I still wanted to die. I chatted to my doctor one day and she said “I know your test was negative, but take out the gluten. You could do a scope, but I don’t think you really want to.” (I know most people would see this as a doctor giving them the runaround, but she was friend before she was my doctor. So I see it as a friend saying: This procedure sucks. Why not skip it?)

    Three days later, I felt SO much better. I could still only eat small amounts of food, but I didn’t feel sick afterwards. I could finally feel just the gall bladder pain.

    It’s hard sometimes. And sometimes it’s downright awful… I was a foodie like you. (When I read in your book about planning a trip because of restaurants, I knew I had found my kinfolk.) But then there are times that I get elated to go somewhere that has a massive GF food section. Or when my amazing girlfriend brings me a GF cupcake. Or the day I discovered Dana’s Bakery and those GF macarons. Or when I eat Or while stopping on a road trip, a friend’s mom goes out of her way to make a family meal GF for me, and since I’m staying the night she got me cereal, and bread so she could make sandwiches to have for lunch the next day in the car. Oh. And she bought me GF canned soup in case I didn’t like the GF food she made. (WHAT?????)….. Those times make it better.

    Can I eat what I could before? No. Can I eat a version of it? Most likely. Will it ever taste the *exact* same at the gluten version? No. Once I accepted that… Things were easier.

    Saturday is my Gluten-Freeiversary and I’m heading to PF Chang’s. 🙂
    It’s the little things that make GF drudgery bearable. 😉

  22. I am late at this but I just got back to catch up with your blog which I LOVE. I went through a similar situation with my son last year when he was 10. I am 41 yrs old, a dietitian, and I’ve had Crohns since the age of 27. Ive also had psoriasis since 20, and went to a GI for a second opinion when my Crohns was really out of control, three years ago, and the GI said to me, bluntly, “Well, you have 2 autoimmune diseases and chances are that you will get a third. And chances are that the third will be Celiacs, so lets test you.” Super. I had no symptoms that were obvious but the Crohns was terrible, so who knows. I got the call a week later, tTG was super high and genetics were positive. Removed gluten and Crohns got back under control and psoriasis almost completely disappeared! The CD diagnosis was actually a blessing.

    Fast forward to last year and my 10 yr old son was complaining for months about abdominal pain that we just couldnt figure out. I had the pedi order tTG and genetic test. The tTG was negative but genetic was positive. All other labs were fine including iron and D. Saw a pediatric GI who was really good. He explained that there are plenty of situations where the tTG comes back negative yet he has seen raging celiacs via upper GI. He suggested if things didnt improve that we do the upper GI……given my issues and his chances of Celiacs and Crohns. I was afraid to put him through the upper GI, too, so I said I wanted to wait out the end of the school year. Interestingly enough, when school ended, the GI issues did too. For him, it was a stress/possible anxiety thing, I truly believe. I introduced him to meditation (which I have found to be super helpful, myself), and now we are in a new school year with no complaints yet.

    So, I know your daughter’s tTG was negative but you are totally right that her other labs are screaming Celiacs. I cant tell you how many clients I have worked with in my practice who walk in with similar labs (low iron, low calcium, low D) and similar symptoms, and their primary care doctors are clueless. Its so hard to put your child through an upper GI, especially if there is that little shred of doubt in your mind that it might be all for naught, but it sounds like she feels pretty miserable at times, and the fact of the matter is that the procedure will probably be way worse for the worrying mom than it will be for her because she will be knocked out. And most importantly, it could lead to an answer to a problem that has been plaguing her for quite some time.

    Good luck with it all, and keep doing the fantastic work you are doing with your books and blog. I am a big fan and I steer lots of clients your way!

    • Thank you so much for this post! And yes, I’ve been putting it off but I really need to get her upper GI endoscopy done. UGH. I appreciate your insight, it’s incredibly helpful.

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