Celiac disease made me gain weight. (guest post)

The below is a post I asked my friend, Alexa, to write regarding her journey to discovering she had Celiac Disease. You may remember, Alexa from her previous post back in December called “I am a marathoner!” Alexa will go into details about it but what I found most amazing about Alexa’s journey is that she truly listened to her body. She knew something was wrong and pushed her doctors to do tests. And then, Alexa didn’t let her recent healthiness experiences be a limitation for what she can accomplish. Here is Alexa’s journey:

It all started earlier this year, I’d put about 10 pounds depending on the day. At first I thought they were Christmas pounds, or from when I was recovering from a stress fracture around Thanksgiving and not being as active.  However, as I upped my activity level, and ate even healthier than normal, they just weren’t going away, in fact, I even gained a bit more weight. The weirdest thing was, all the weight was in my abdomen, and I usually gain weight in my face first. My clothes were not fitting well, and I felt like my mid-section always felt bloated.

It came to a head when I hopped on the scale on particular Friday morning to see how my week’s worth of strict eating and working out had paid off, to see I’d gained three pounds. WHAT?!? In total I had gained 12- 15 pounds since our wedding last June, depending on the day. This was NOT normal for me. I am usually pretty consistent with my weight.

Being that there is a history of Thyroid problems in my family, which can be a cause of unexplained weight gain or loss, I wanted to have mine tested. During my Google search on unexplained weight gain, I also came across something else, Celiac Disease. According to Mayo Clinic, Celiac is the allergy to Gluten, and causes your intestine to basically be worn down, and not be able to absorb nutrients.  Gluten is found mainly in wheat, oats barley and rye.

I knew a little about the condition, because my friend Amy’s daughter was diagnosed at a young age, and Amy runs the Savvy Celiac blog to raise awareness about the disease. I contacted Amy and asked her if my symptoms warranted a test for Celiac when I went in, and she said yes.  She also warned me that some doctors are very uninformed about the disease, and may try to discourage me from getting the test, but that I should insist.

Amy sure was right. The doctor I saw (not my normal one) was hesitant to test me, saying that most people who have Celiac, lose weight not gain (a total myth I’ve learned), but I insisted that he test me, if only for peace of mind. I have good health insurance, I was getting blood drawn anyway, what is another test?

He agreed after my persistence, and the following week when my results came back I had a positive result for Celiac. That a normal test was under 20, and my test read at 132. I was so glad I stood my ground and got this test.

Over the next couple of weeks, I had a biopsy done of my small intestine, which came back as a positive indicator of Celiac. I met with a Gastro Intestinal Nurse Practitioner who spoke to me more about how my diet would be changing.  She told me that because of the significant damage to my intestine, I need to be on a “not a crumb of Gluten” diet.

Throughout this whole process, I thought back to how happy I was that insisted on being tested for this, that I stood my ground at my initial doctor’s visit. I thought of the suffering and anguish I would have gone through had I not had Amy as a resource to even know that this condition could be affecting me.

Left untreated and without a diet change, Celiac Disease can cause brain, peripheral nervous system, bones or liver damage.  It can also cause infertility and increase your likelihood of developing cancer.

As I stated before, Celiac isn’t something a lot of doctors outside of the specialty know much about, and is often misdiagnosed.  The symptoms are things many people don’t talk about: bloating, gas, diarrhea, and weight gain or loss, just to name a few.

In the short time that I developed Celiac, roughly in the past 12-18 months I’m guessing, I found out that my small intestine have no signs of villi now (the small fingers that absorb food and nutrients) and I’ve suffered significant bone loss that cannot be replaced, including 20% of my spine.  My villi will grow back over the next year as I stick to a strict Gluten Free diet, my bone mass, however, will never return.

The reason Jen wanted me to share this story with you, is so that it may open your eyes to this possible condition in you, or a friend or family member. I don’t want anyone to have to suffer with this disease and feel as sluggish, bloated and nasty as I did pre-diagnosis. I also don’t want anyone else to experience the permanent repercussions of Celiac that I do.

I’m obviously not a medical professional, but if you’d like to ask me any questions, or offer any advice, I’d love to hear from you!  Feel free to e-mail me at: AlexaTaleof2Cities@gmail.com.


  1. Aw man. Thanks for sharing this. I’ve had all the symptoms for awhile except the losing weight part- I’ve been slowly gaining (so I thought I could rule it out). This makes me think I need to get tested, because I don’t want to just ignore it.

  2. Note also that vague and persistent bloating, difficulty eating and feeling full quickly, abdominal pain, and digestive problems (gas, constipation, nausea and vomiting) are often the early and only signs of ovarian cancer until it is very advanced. These are symptoms that women are way too inclined to accept as “normal.” Be like Alexa and be sure these symptoms are taken seriously and everything is ruled out. Good luck, Alexa!

    • KH, Funny you say that, because that was a fear I had. I’m a WebMD addict (cough Hypochondriac cough) and I think I diagnosed myself with Ovarian cancer at least four times, and even made my doctors do an ultrasound once to check for masses because of my symptoms.

      In all seriousness, you are right, and Ovarian Cancer is often over looked because of these symptoms and isn’t caught until it’s terminal. Be your own advocate!

  3. Like Alexa, I too am on a Gluten Free diet. I do not have Celiac disease, but I do have a Gluten Intolerance. So please, if you test megative for Celiac, dont give up! Try the Gluten Free diet for just 2 weeks to make sure you are not intolerant like me! The discovery of my intolerance has changed my life!!! Less headaches, diarrhea, bloating and all! Truly a life saving decision to go Gluten Free.

  4. Kudos to you for standing your ground with your doctor! There are a lot of conditions that doctors are not familiar with and some think you may be overreacting or that they know it all. But you are the one who knows your body best. And especially when a test is as minimally invasive as a blood test I dont see the harm in asking. Im glad you have your diagnosis and hope that everything from here goes all uphill for you!

  5. Thanks for all the info! I worked with a woman who had this, and before she was diagnosed, it looked like she was pregnant and she wasn’t.

    Glad you figured it out!

  6. Thank you. My sister has Celiac’s and I kind of thought she was being wacky. I feel bad. I appreciate you helping us discuss this disease and raising awareness. It helps us all.

    • Jen, a priorfatgirl says:

      You know, I think a lot of us (including me until Alexa was diagnosed) didn’t really understand how bad Celiac Disease really is. I would hear someone say they were gluten-free and I think I just underestimated what it meant. Also, I originally thought being gluten-free was a decision, much like being vegan or vegetarian — it never dawned on me that it is instead like a peanut-allergy, that people can become physically ill if they consume gluten. {That said, there are some who choose to be gluten-free and do not have Celiac Disease}.

  7. Agreed with Jen. I had to really contain myself to not go off on a guy working at a restaurant when I asked about gluten free and he said, “oh you people and your fad diets.” I bet he could see the steam coming out of my ears as I held my tongue!

  8. We’ve learned a lot since one of my brother’s roommates was diagnosed. His unfortunately wasn’t found until he was in surgery for something else and they saw how destroyed his intestine was. His major problem was severe fatigue. When they game at their place everyone bring gluten free treats, so we’ve gotten good at finding options. Fortunately some local grocery stores have a gluten free section.

  9. I just recently converted to a strong plant based eating plan, cutting out meat, most oils, fats and salt. Within two days of giving up meat, the menopausal hot flashes I had almost completely disappeared, and after a few weeks I realized that the ongoing tummy issues I had, which included gas, bloating, constipation and just general discomfort also just up and went away.

    It got me thinking….. how many people simply live with discomfort and vague unexplainable symptoms? My tummy issues were so continual, and also so minor that I just thought it was part of getting older. I never expected that the food I was eating had anything to do with it. And to think that giving up meat would kick ass on hot flashes!?!?! Talk about amazing.

    And just to test out whether or not it actually is the meat, I had a roast beef sandwich on Memorial Day. The next day, the hot flashes were back, and intensely so. One sandwich, one day.

    And it TICKS ME OFF that people look at it as some fad, or worse yet, some pretentious high minded crap. Where’s the understanding that we need to take control of our bodies and health by making the smartest choices about what we eat and consume? It just chaps my hide.

    • I totally agree with you! I can live without a waiter or friend’s judgement about it, since I know my eating style is making a difference for my health!

      I went gluten-free recently by recommendation from a hollistic doctor and I feel so much better for it. I haven’t been tested for Celiacs, but I do have an autoimmune thyroid disease(Hashimoto’s).

      I did want to make a comment about your note about cutting allfat from your diet. I am not a dietician, but have learned that some fats are healthy and essential to consume. The healthy fats help your body absorb nutrients. For example, if you eat carrots or an apple it is best to pair it with a healthy fat (hummus or peanut/almond butter).

      Check out this site for a list of healthy fats versus bad fats: http://www.helpguide.org/life/healthy_diet_fats.htm

  10. Christine says:

    Please change your definition, celiac is NOT an allergy to gluten, it is an autoimmune disease. When people think ‘allergy’, they think of the typical histamine reaction of people that have seasonal allergies or food allergies. Celiac is a different beast altogether.

    • I have read so many articles about ciliac being an autoimmune disease. An autoimmune is where the body fights itself for no reason, which is not so for celiacs. If gluten was not ingested, the immune system would have nothing to fight. For a celiac person, the body is fighting against the digestion of an outside item that was introduced into the body.

  11. I am just now finding your article and greatly appreciate you sharing! I was recently diagnosed with Celiac Disease after the last several years of suffering. I almost had my gall bladder removed because they were convinced that is what was causing my back pain, stomach pain, diarrhea and bloating. (Even though there wasn’t any “sludge” or stones!) Thankfully, my doctor said, “Let’s just try this test…” and now we know, I am 100% Celiac. The trouble now, is that I have been feeling sick still, 6 weeks gluten free, I slipped up and had some bread and now I am starting all over again. The weight gain part of it fascinates me. I have always been overweight, even when I was running 5 miles a day, 4 times a week and eating “healthy”. But because there was gluten in my diet, it never made much of an impact on my weight. I’m so thankful that there is a diagnosis now and that hopefully, things will start to turn around in how I feel and my weight!

  12. Oh my goodness this sounds like my symptoms and my story . I was wondering if I have been gluten free for one week could I still go in and request the blood test to see if I have Celiac disease? Or do I still need to be eating gluten? I can not believe the way I am feeling after one week of NO gluten! I have lost 8 pounds as of this morning! I have been wondering for so long…What is wrong with me???? Could it be as simple as going on a gluten free diet? I will do it forever!!! I am so excited.

    • I’ve read a lot on this and in some of my reading, I found that it can’t be 100% confirmed if you are already gluten free..

  13. THANK YOU SO MUCH! I thought I had read much more than I had when I ran across this post… I am so relieved that I am not alone. I had my gallbladder removed 2 years ago and before the after surgery symptom subsided, I guess is when I started having Celiac symptoms. I went to my doctor 2 weeks ago and demanded the test… I go back to get my results in 5 days and am very eager to find out what is “really” going on with me. I, like another lady commented, went and had an ultrasound 2 months ago to check my one surviving ovary… NOTHING! I sure hope it’s Celiac and not anything else; considering I was diagnosed with an auto immune disease 3 months ago, I have just been beside myself. I won’t go anywhere public unless its absolutely necessary 🙁 I have went from my regular “normal” weight of 130 to a whopping 185 lbs and all of it in my abdomen. Its weird cause I completely changed my diet and began eating pretty healthy during the first 20 lbs I gained. AGAIN, I thank you from the bottom of my heart, for sharing your inspiring story.

  14. I too was diagnosed with celiacs disease but thought Dr. nuts due to had a hard time LOOSING weight..Thank you for clearing this up.

  15. YAY I’M NOT ALONE!! I did the ‘gluten challenge’ for my Celiac test (results forthcoming) and I gained 15 freakin pounds in those 2 weeks!!! And yep…all of it in my abdomen (my “fat” jeans are now too tight). I had been steadily gaining weight for about 10 years (used to be 130, and now I’m over 200) and also didn’t think I had Celiac because of the gain. I just quit eating wheat and actually lost about 10 pounds before doing the challenge. I personally think its a defense system the body uses because it KNOWS it won’t get everything it needs from my food (due to damaged vilii), so it stores everything it possibly can.

  16. I am so grateful to have found this blog! I have been suffering with abdominal bloating, distention, pain, extreme fatigue, diarrhea for over 3 years. I have also gained over 30 pounds regardless of the very little food I consumed. Some days none. I just gained. I was diagnosed with Irritable bowel syndrome 3 years ago. I recently started paying close attention to my body. Truly listening to it. I have been gluten free for 3 weeks and have lost 16 pounds. I recently had surgery for a umbilical hernia. I truly believe it was caused from the stress on my abdominal wall. This is when I decided to do more for myself. I did alot of research and pinpointed celiac disease. I saw a gastro dr today. She insists I eat gluten for 2 weeks for the test to be accurate. I surely do not want to consume any gluten and cause my intestines more harm. I have one question…if I am having a biopsy of my intestine…wont that be a accurate test without having to consume more gluten? I have just begun to also feel better. I have more energy, dont feel so sickly and bloated. My diarrhea has improved tremendously and I look about 3 to 4 months pregnant compared to 6 or 7. Good luck to all! Were not alone! One more thing. I thought my weight gain was associated with the gluten. My dr figured due to the weight loss recently and drastically I have celeac amongst the other symptoms. Thank you all for your posts! Bless you all!

    • I have exactly the same problem as you. I had an umbilical hernia repaired thinking it was the source of my pain but its still here. I had a baby 9 months ago. I weigh 20 lbs less then I did before I got pregnant. But still look 7-8 months pregnant. The doctors say I have diastis and that’s why my tummy is so big. I’ve felt fatigued for 3 years and they always check my thyroid (which is fine).

      A few years ago I gained 30 lbs in 3-4 months. I thought it was due to stopping breast feeding. I’m calling my doc tomorrow!

  17. In the last 2 months I have gained about 13lbs inspite of a healty diet and exercising. One thing in particular I noticed was that often I would be 2-3lbs heavier in the morning that the evening, which is completely backwards for me. There are times when, mostly in the evening, that my stomach just starts swelling and cramping, like someone is pumping air into it. My doctor recommended trying a gluten-free diet for 2 weeks and seeing what happened, but I can’t find any good resources for sticking to the diet. I know there can’t be any gluten at all so I don’t wont to try without a good game plan. Does anyone know where I can get some concrete info on the diet itself?

  18. Laurie McPherson says:

    thank you for sharing I was diaganosed with severe celiac the beginning of this year. My problem is Im a picky eater, ( don’t like many veggies) But I’ve gained a ton. I don’t know what to do now, I’m eating gluten free, but not losing. Any help or advice would be great!

    • Laurie, it is still very easy to gain weight on a gluten free diet, because gluten free foods are still loaded with starches that aren’t “healthy”. Some, I should say. I have been eating gluten free for 1 1/2 years now, weight loss is still a battle, and I still need to watch calories.

  19. I have been tested for celiac disease through an upper endoscopy test and it came back negative. However, my small intestine is damaged and I cannot lose weight no matter what. I am 19 years old and weight 145 pounds. I exercise regularly and eat very healthy, but no use. I also have been gluten free dieting for the past 3 weeks but I don’t think that my symptoms (gas, bloating, fatigue, headaches, etc ) have gotten better. I accidentally consumed gluten 3 days ago. Should I start all over? I need to be on the gluten free diet for 6-8 weeks which means that I have at the maximum 5 more weeks.

    • Sujan,

      Have you been tested for Fructose Malabsorption or come across it in your research of your symptoms? Fructmal has similar symptoms of IBS and other digestive problems. It is a fairly easy test for diagnosis– a hydrogen breath test similar to what you get for a lactose intolerance test. You get your results within minutes. It’s very helpful.

      I was diagnosed with this earlier this year, but despite following the fairly restrictive diet I am still dealing with some of my symptoms like bloating, diarrhea, severe abdominal pain, and just recently weight gain despite increased exercising and decreased caloric intake. It is strange and annoying. But that is what brought me to this blog.

      I mention the Fructmal test because it is something I was totally unaware of and the testing is so easy. Good luck with your gluten free diet!

    • I had this situation, too. I gave up all dairy for awhile, since many celiacs are intolerant to dairy as well, and I felt amazing! Dairy was an equal culprit in my weight struggle with celiac disease. Worth a shot to see if that’s what is effecting you, too! Good luck!

  20. I’m due to have a celiac test tomorrow, a lot of my cousins have celiac disease but I was just laughed at by extended family when I said I would get tested as I’m over weight. My mum researched and said you can be overweight and have celiac disease. I’ve been on a 3 month dieting and working out plan I was strict and didn’t cheat but my weight stayed much the same. I have also this year developed eczema and abdominal pains as well as having perculiar bowel moments with insomnia. Never before have I had the last 4 symptoms until 2013. If the test comes back negative I’m still going to push for other tests as my quality of life has really been affected.

  21. I to am celiac, lactose intolerant and fructose malabsorption. I go to the #1 doctor, Dr. Peter Green, who says that there is no diet for fructose malabsorption. But according to information I so read that their is a diet. I to have gained an absorption amount of weight. Trying soooo hard to loss the weight. I get sooooo depressed that occasionally I sit down and drink wine, jus more fat into my diet I so eat vereeey healthy, fruit, veg I do only eat chicken, occasionally gluten-free bagels, and no frozen gluten-free food. I truly feel that is packed with all sugar and salt. If anyone out there has a miracle to lose weight gluten-free please let me know. I have 3 children I was thinner after giving birth than I am now. Thanks for listening to me. Diane

  22. Hi Everyone, what sent me down this path was that my daughter and I started loosing our hair, roughly at the same time about 4 months after the death of 2 pets, it was very sad and extremely costly, nothing stressful about animal Hospital bills, right…

    We did not have any classic Gastro symptoms, although now I know that I was bloated and that isn’t normal. I knew our hair loss had something to do with the stress of losing of our pets back to back, but I didn’t know how that would trigger hair loss. My Dr had nothing to offer but let’s ‘wait and see’. I wasn’t going to sit there and watch us go bald, we’d lost 40-60 % of our hair, thankfully we have a lot of hair, but one more shed and we would have been in serious trouble.

    I paid the Dr for a copy of my previous blood work I’d had done, I’m totally phobic of needles so the last blood test had been 3 years before, I was shocked to see my Ferritin level was 10! My Doctor didn’t think that was an indication of anemia, I printed off a copy of the BC Ministry of Health which clearly says that is anemic, the lab that did the test she ran even stated it was a strong indication of anemia. Anyway, I am pretty sure I was even lower than 10 when my hair started falling out, but my daughter’s Ferritin wasn’t 10 so what was going on…I went home and Googled the best children’s Endocrine doctor in our city, we’re fortunate to have a large Children’s Hospital. Hands down everyone raved about one Doctor, I figured out her email address and hoped she would respond. Most Doctors wouldn’t answer the general public like that, she did, she is an angel!

    Once we got in to see her 8 months later, I told her about my Ferritin, Vit D and Hormones (which I had to pay a lab in the states to check, as my Doctor wouldn’t or couldn’t check them herself, the tests showed that I was deficient and insufficient in many of the things I thought I was) After taking a large dose nightly of highly absorb able iron for 6 months I managed to get my Ferritin to 36, but that was still low and after taking 8000 IU of Vit D drops under my tongue for nearly the same amount of time I was below the threshold with that as well. It took the Endo Doctor all of 2 min after I stopped talking for her to say that she thought I was having an absorption problem, finally something tangible! She added a Celiac test for my daughter, unfortunately I had been GF for months, I had no clue about Celiac….so the test for me would not have been accurate. I will not eat Gluten to find out something I already know and potentially loose my hair. My symptoms and our shared hair loss got my daughter tested, she scored in the high 80’s, and she was hardly eating any Gluten herself.

    I have been listening to some fascinating interviews on the Gluten Summit this week. I realized from listening to Dr. Marsh, the God Father of Celiac diagnostic testing, he’s the Marsh behind Marsh 0-3. He says that you can have the Antibodies circulating in your blood for 8-10 years before showing any Villus Atrophy, which begs the question, if their ‘gold standard’ in the Endoscopy Biopsy and it doesn’t show up, you could still be early Celiac, what are you supposed to do go in every few years…? Why not just use the blood test and work from there, it’s the same treatment, 100% Gluten Free for life….Many people are slipping through the cracks and against the odds, those people make it to the right Doctors.

    It’s so frustrating, my 16 year old is occasionally sneaking Gluten into her diet, it’s causing her panic, anxiety and depression to worsen, she just doesn’t seem to care. The poor thing has been feeling this way since she was 9, I have about 1 year before she’s off to school and on her own. That thought terrifies me.

    So I too have been gaining weight, 25 lbs in less than a year. I’m now 145lbs and desperate to know if the weight will come off again. Please tell me some of you are doing better. I think I need to cut out the dairy or at least seriously cut back, we’re doing the SCD diet, so we’ve gotten rid of the lactose, but what if it’s casein…If you have issues with casein/dairy do you always have some kind of Gastro symptoms? We’ve been Grain free for 3 months now, I feel better, my hair is regrowing, time will tell if it thickens up to where it was…

    Anyone with a close relative who has an Auto Immune Disease/Disorder like in my family, Diabetes, Osteoporosis, depression, anxiety should automatically get a Celiac test every few years. One of my diabetic Aunts fell into a coma at 8, with all of her health issues and constant visits to specialists, not once was she tested for Celiac Disease, nor was my Grandmother, who at 94 still lives in her 2 story home on her own, but is totally bent over with Osteoporosis.

    Thanks for listening 🙂

    • Hi there,

      I’m in BC as well and began losing hair and gaining weight a few years ago. I’m doing the test for celiac soon and hope it comes back positive so that I finally have some answers.

      How is your hair regrowth coming along?

  23. Hello,
    I have been diagnosed with Celiac…I try very hard to stay away from Gluten with a very good diet and excercise at least 5 days a week.
    I find I am still bloated at times,have brain fog, skin sores, problems with my bowels and am still gaining weight.
    Would really like to hear from someone that is going through the same thing, and what they are doing about it.

    • Linda, I soooo feel your pain…. I was diagnosed with Celiac disease in Aug 2011. And had the most choppy unsupported/uneducated diagnosis. The dietician I was referred to basically told me my life was over as I knew it (I left her office with a huge lump in my throat, fighting back the tears)….and I was pretty much on my own. I’ve tried to educate myself about gluten free products, etc. And have completely transformed my diet, …I try not to buy any pre-packaged gluten free foods, such as cookies, breakfast bars, frozen dinners, etc. What I’ve tried to do is go back to the basics of eating. When I say ‘the basics’ I am referring to the natural stuff, grown in the ground or on a tree, etc real food. So I still eat meat, fish, chicken, rice, potatoes, fruit veggies etc, I just buy it all plain (no marinades, seasonings, dressings, etc) and prepare it at home using real butter, etc. BUT in the last 4 months, I have noticed a significant weight gain. I was sitting around 145-147lbs… I got on the scale last night an almost cried….159.8lbs! I too go to the gym (I work shift work but usually make it 3-4 times/week, and exercise hard when I go). I drink lots of water too. But still I suffer from chronic constipation, and bloating. I don’t necessarily have much abdominal pain, but more of a discomfort from the bloating and fullness. I’m so discouraged right now, I really am not sure what direction to head. In addition to this, just over 1 year ago, my husband and I moved cross country. So to find a doctor in my new city, and to learn the networks/resources to access for proper follow up/care/treatment is posing a bit of a challenge. Right now based on research I’ve done, my questions are mostly related to ‘what deficiencies do I have’…. can these deficiencies be causing this weight gain. If you look up deficiencies to watch for with Celiac Disease they include Vit A, D, E, K, Folic Acid, Ferritin, Phosphorus and Magnesium (I think that’s most of them)… and the possibility of impact on your thyroid too(which can lead to weight loss/gain if not functioning properly) so I would like my Thyroid checked as well. I don’t know if any of this information will help you at all, but hopefully so. This is the first time I’ve ever responded on any type of blog, but I felt I couldn’t pass it up given that I feel I am in the exact same boat as you! Keep me posted on how your doing! Take care!

  24. I’ll try to be succinct as possible about what I’ve been going through. Since October I’ve gained around 20lbs. Along with weight gain I have upper abdominal pain, constipation, acid reflux and nausea, dizziness and bloating. I just came back from my doctor and she’s testing me for hp pylori. I’ve had it before and ulcers but this feels completely different. I also feel lethargic, could be the depression from my self pity. Do these symptoms possibly be Celiac? I’m due to see my doc in 4 weeks. Should I ask for a test?

  25. Just to let everyone know I did not read into your e-mails. I feel it is the same old on every sight I’v e been to with no direct answers, directing us to our main problems..
    I’ve been diagnosed as being celiac for the upcoming 7th year. I’ve had three children and never in my life weighted as much as I do currently. Ask yourself why are we very depressed and unhappy with my lives? Why do we gain all this weight and have a feeling of depression? I feel that we need to know the real factors that our bodies are dealing with, not just what doctors say!
    Please if you understand me and agree, please send me your feedback, so that I can make sense of all the shit that is playing in my mind. Thank you and sorry that I feel this way and is so upset with everything said and done.
    Thank all for just reading an understanding me, as I am a teacher myself and dealing with a lot of BS…… and nothing still makes any sense. hoping for all your support and help.

  26. I have pretty much been a vegetarian all of my life. I am 30 years old now and i remember eating a lot of cereals, pop tarts, breads/bagel, pastas growing up and the food would run right through me after every meal. I did eat vegetables and fruits on occasion but i was a carboholic. I also ate a lot of sweets, which of course, contain wheat. I was always the big girl in the class at school and always had a pot belly, the kid that hangs over your pelvic area. Despite eating all of this crap i eas very active as a child. Daily walks, bike rides, swimming, dodgeball- you name it. And i mean all day long, especially in the summer. Throughout late childhood and into my early teens i went to dieticians and wt loss doctors, even signed up at a ladies choice gym. Never could lose. I also would have these weird, unexplainable feelings of i do not know what to call them— depression/loneliness??? All of the time where i felt like i just wanted to lay down and just sleep. I think that may have been my early warning , but as a young kid, how was i suppose to know. I tried to explain my symptoms but it was hard to do. I guess during my school years i was embarrassed by my weight (as i am 5’1) i never had a chance to wear a bikini either. Sounds stupid but as a teenager you want to fit in with friends. Anyway, when I graduated high school i thinj i weighed around 165? And that is big for an 18 year old who is short. The funny thing about me is that i always had good strength and endurance. I remember working with a personal trainer when i was about 19/20 years old and she was wowed by my ability to keep up and not give up when i was so large. I was 190 when i learned i was pregnant in January 2009. I got up to around 240/250 something i believe due to pre-eclampsia, so they say. I lost down to about 215 afterwards but still could not lose despite daily zumba classes and eating more fruits and vegetables. I attended nursing school during this time and one of my instructors said she thinks i had ADHD. My mom also was telling me my memory was bad and that i was too young for that. I honestly have brain fog. I have never been regular with my periods since about age 14/15 and was told by an OB few months before i became pregnant that due to my weight and my assumed “insulin resistance ” (bs and in collections w labcorp for $$$ unnecessary labs) that i would have a hard time getting pregnant. Anyway, i did, obviously. But my periods remain irregular, sometimes skipping 4-5 months. And they are light- 2-3 days with barely anything. Within the past 5 years is when i became real tired and in the beginning of 2014 i started getting bad headaches and was so tired i felt like a truck ran me over. I seriously did not want to get out of bed. Prior to that i would be so tired sometimes i would not even shower for a few days. My self care suffered. Not to mention i am irritable due to being ao tired and overwhelmed. I was dizzy too w normal BP. (Sorry i am kind of all over the place). I was getting tired of my wt so i made an appt for thyroid labs and to discuss why i was so tired and having sharp quick shooting pains throughout my body as well as pains in my lower chest. The dr didn’t listen or assess me, just drew blood. Results were high wbc (infection)and high esr(marker for inflammation). Never heard from them. Called for 2 weeks. They said “osteoarthirits “. I went to a new dr office and she was wondering why they said osteoarthirits. I said i have no idea. I told her about blood in my stool and possible hemmroids as well as the fatigue, shooting pains, etc. She drew repeat labs. Still wbc and esr was elevated. Thyroid and rheumatoid and lupus all negative. She then did anti transglutimase for celiac. On scale of 0-3 mine was 20. She referred me to GI where i had an appt and when i told him i felt better when i avoid gluten he basically said all will feel better if they dont eat gluten. His reasoning was not provided. So i mentioned celiac and he basically told me it’s usually people who are failure to thrive and they are unable to gain weight. I also told him all my other issues and the canker sores in mouth, etc. He said he wanted to do a colonscopy due to bleeding when have BM and may as well do endoscopy pending celiac lab results. So today we did both. Colonscopy normal, internal hemmroids. Endoscopy showed fissuring and scalloping of small bowel. They handed me paper on celiac disease and gluten free shopping list. Also said i had a hiatal hernia. They instructed a trial of gluten free and prescribed medicine for reflux, dexilant. I am to follow up in 1 month to discuss biopsy during endoscopy and see how diet is going. In summary, main issues: gaining weight, poor memory, frequent headaches, mouth sores, BM after all meals, sometimes fatty looking, missed periods, etc. Hope this helps. I wish i would have known all of this when i was a child. I was probably allergic all along

  27. Hi I recently lost 30 from working out and was feeling great but now I’m feeling tirred exhausted especially after my 12 hours of sleep. I’m falling asleep at my job. My energy isn’t there anymore I got itchy neck. My jeans which fit me great weeks ago are tight. I’ve gained some weight back. But I am always exercising. My nails are breaking a lot. I know something is wrong with me. My doctor also said I was fine that the tests show nothing. She says I’m just depressed.

  28. Did you eventually lose the weight once you controlled your gluten intake?

  29. Try trampolining … apparently NASA uses it for their astronauts when they return from space. It increases bone mass.

  30. Virginia S says:

    Hey Alexa…. I thank you for your story. I ‘suffered’ from misdiagnoses for 10 years. The first year with severe symptoms I went to a doctor for diagnosis because of major stomach pain, bloating and constipation. He recommended more ‘grain’ in my diet. So not being a ‘bread’ eater, I began including whole wheat and grain bread and more grain cereals to my diet. There was no relief and symptoms began to become even worse. The first year with major symptoms I was seeing my doctor at least once a month. Every visit he would prescribe a different pill and give me a different diagnosis. I think I was diagnosed with everything except CANCER….I spent the next 5 years suffering and falling into a deep depression. The doctor I was seeing at the time had the audacity to call me a hypochondriac and told me that It was all in my head…. With my heart broken and dealing with chronic pain and even more symptoms, I decided to seek another opinion. At this time I had lost most of my hair (on all parts of my body) and had to wear wigs. My teeth became very lose and my lower stomach looked like I was 9 months pregnant. I looked like one of the starving children you see on TV commercials. I also was so weak and fatigued that any kind of movement or energy use, like walking from one room to the other, would cause me to be out of breath and exhausted. My skin changed. I started getting Dark Liver spots all over my extremities and face. The palm of my hand and bottom of my feet where so dry and brittle they would break open and bleed. My nails became brittle with some of my nail missing at the moon. Eventually a hug from my husband became painful and any contact from anyone I began to avoid. I had burning in my hands and feet. My vision changed dramatically and my once 20/20 vision was now bi-focal for up close reading, and prescription glasses to see far away. I lost a lot of my memory and still have trouble to this day. I have moments of blankness and forget things often. I have read that there are over 360 symptoms for Celiac Disease that mimic other diseases. I think I could account for half before I was properly diagnosed. I finally found a Naturalist who diagnosed me properly 4 years ago. She said that she had never in her practice seen a person who had such a severe case of Celiac. She said that after biopsy I was in the Malnutrition part of the disease and pretty close to death….. I wanted to share my story to make everyone aware of how serious and life threatening this disease is. After a very strict diet and years of healing I still suffer from the damage caused by eating gluten. Some of my hair grew back but not as thick and healthy as it once was. My teeth are just now becoming more strong. I continue to struggle with occasional fatigue. I also continue dealing with weight issues and chronic pain. I wish I could take those 10 years back. I would have never believed that something as simple as food could have caused such havoc on my body…. I hope my story helps…

  31. Virginia S says:

    I wanted to add that I think Celiac ‘people’ have a hard time digesting carbs and large portions of meat as well. I started to baby my intestines by feeding it things that were more easy to digest. Also, I have been seeing weight loss by omitting carbs and eating a veggie and fruit rich diet. I eat mostly raw veggie and fruits and rarely eat meat unless its fish or chicken and in very small portions. I try to get most of my protein by eating nuts, beans and spinach. I also juice and have fresh fruit breakfast smoothies with a spoon of spirilina super food in the mix. I stay far away from gluten free flours and pre made goodies. Also stay away from canned foods… I just started this a few weeks ago and can tell a difference in bowel issues and weight. It might not seem like much but I have lost 2 pound. This is a huge change since before I would either gain or hold weight when dieting. There are several ways to prepare raw veggies and there are some awesome recipes…. Google, Youtube is a place to start… I will update my progress as time goes on….

  32. Casey Collier says:

    Hey there Alexa,
    My name is Casey and I was just diagnosed about three weeks ago for celiac. I had been having pretty intense symptoms for about 2 years but they were getting worse (bloating, gas, and all of that fun stuff) so I finally got my parents to take me into a test. I was having to eat enormous amounts of food to just maintain my weight on my small frame, so the opposite of what you had experienced. However, as soon as I got off of the gluten, my weight increased rapidly; however I read online that this might happen and so I decreased my calorie intake. I was wondering, for how long you had had symptoms before you were tested (12-18 months) You had some significant damage to your system but I’m scared to know what two years of damage could do!… I wonder if my villi are gone completely. Also what happened when they grew back? Did you feel better due to nutrient absorption? What went on with your weight after that?

    Thank you so much for the help, I’m glad you’re doing better now!


  33. Virginia S says:

    Ok… so I said I would update on my progress…. I have lost another 7 pounds. I am having carb and sweet cravings at night so I have been countering them with sugar free jello, fresh fruit and gluten free whipped cream. I scoop 2 cups of jello, with 2 cups chopped fresh fruit and 1 Lrg. Tablespoon of whipped cream. I only do this on the nights that I have severe cravings. I try not to eat after 6pm… I spend the remainder of my night drinking sweet tea, or regular tea, hot tea, or coffee, all decaf and lots of cold water……

  34. I recently went to the doctor because like you I have a history of hypothyroidism in my family and was experiencing all the symptoms. Well my thyroid is fine but the doctor also tested for wheat antibodies and it’s supposed to be less than 2, mine was 8.5. Now whether or not that means I have celiac I don’t know but I do know that since I’ve started cutting out a lot of foods I used to eat I’m starting to feel better.

  35. Thank you so much for this post. It makes me believe that I am not crazy. My weight is very stable, yet I have gained over 10 lbs in a little more than 4-5 months. Like you I figured that it was the holidays, too many rainy days, etc. Meanwhile I have been to the ER for suspected appendicitis (negative), Gyn for an incidental small cyst (same general area as appendix), and now the GI doctor since my Gyn said that she didn’t think my ongoing horrible pain was the cyst. My bloating, fatigue, and pain near my ovarians at one point had me taking a pregnancy test. Well….today I did the blood work for celiac and I have the egd/colonoscopy procedures in a few weeks. Even if it isn’t celiac, I have now been able to isolate it to when I have gluten the pain and bloating is much worse…for days. Fingers crossed it is “just” a food sensitivity and not celiac. Either way, it will be good to know. Question…once you treated the celiac, did the extra weight drop off? I am so very stable in weight my whole life that it will be really hard to lose this weight. I am hoping once treated properly, my body corrects itself. Am I being to hopeful?

  36. Glenda Starling says:

    I was just diagnosed with Celiac yesterday. Couldn’t figure out why I was having to buy new clothes every month. Having all of the systems. I have gone from 110lbs to 159lbs in less than a year. Never in my life had a weight problem. Hopefully eating gluten free will put me back down to my normal weight. Good luck all celiac sufferers.


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