A fellow celiac sent me the below rant and since it’s a long (and very important) read, I will waste no more time. Here you go:
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On June 22, 2013, on the CNN website I read that the American Medical Association is going to declare obesity a disease.
What does this have to do with celiac?
Absolutely EVERYTHING.
I’ve now read enough posts by people who have celiac to know that many MANY of us prior to diagnosis fell into one of two camps on the basis of outward appearance: the sickly-looking waif, and the diet-frustrated overweight.
Thus, my rant.
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I have always been big… by the 5th grade I was 5’5, 165 pounds, and on the diet carousel. And I was an active child throughout my childhood and adolescence. I played soccer in a boys’ league (there was no girls’ league). I was in my high school’s marching band, which doesn’t sound rigorous until you go try high-stepping and quick-stepping in 85 degree heat wearing 10 pounds of wool and polyester. I haven’t been smaller than a size 16 since I was 14 years old, and graduated from high school exclusively shopping at Lane Bryant.
In June of 2010, having tried every major diet out there, showing the signs of insulin resistance and hypothyroidism (without a low TSH), having arthritic knees, and weighing 280 pounds, my husband and I went on a version of the Mediterranean diet to try, one final time, to kick the weight prior to gastric bypass. Lo and behold, this time I was successful! I was on a diet of lean proteins, fruits and vegetables, and, most importantly, NO CARBS. I lost 20 pounds in two weeks! My husband lost another 25 himself. To celebrate, we went out to eat, ordering a thin crust pizza with toppings on it that were allowed on our diet regime.
Within 45 minutes I was in excruciating abdominal pain and ravingly psychotic. I thought I was going to die – either from the pain or from doing something completely stupid.
It took me days to recover and I called my doctor afterward. He took a diet record. And then he said: “I think you have celiac. But we’re going to try an experiment, since you can’t be consciously sedated for an endoscopy. Go back to eating how you have been and then the day after the 4th of July, go back to eating anything containing gluten. Then we’ll run the antibody test.”
Three hours and one donut into July 5 and I was begging to any deity I could beseech for the pain to end.
So my doctor decided not to push it with the antibody test and, when he heard about three main components of my family history in relationship to my own history with food (including a complete intolerance to beer during my undergraduate college years), diagnosed me with celiac (though I am willing to say that it might be severe non-celiac gluten intolerance [NCGI]). Those three components were: a strong family history of diverticulosis; a strong family history of tinea versicolor (a skin fungus that leaves brownish-red patches that bleach white in the sun); and my grandmother’s story of surviving her childhood in the Great Depression eating only rice gruel cooked in goats’ milk because she couldn’t keep anything else down.
Within a year, I was down 98 pounds and wearing the smallest clothing I had worn since I was 13 years old (mostly 14W and 16). But I also fastidiously avoided the “GF substitute” foods, mostly because, on a graduate student’s budget, I wouldn’t pay $6 a loaf for the nastiest bread I’d ever had in my life.
Then on Halloween of 2012 I was diagnosed with breast cancer. For those of you who know the lingo, my tumor was Stage IIA, Grade II, node negative, ER/PR+, all of which means the tumor was the size of an Easter jellybean, showed moderate irregular growth, had not spread to the lymph nodes, and was fed by estrogen. But because my tumor tested as having an aggressive recurrence streak, I had four rounds of chemotherapy.
The chemotherapy nearly killed me (and I must add, celiac was likely NOT a culprit in what happened to me). I was at first on a regimen of Cytoxen and Taxotere, and then five minutes into my second infusion session (which started with Taxotere), I had a complete systemic inflammatory reaction that came within three minutes of killing me. Between the inflammation caused by the Taxotere and the inflammation caused by being flooded with more steroids than an East German female bodybuilder, I was a wreck for two weeks. I ate very little.
And I gained 30 pounds. In two freaking weeks.
WHAT?????
Here’s my point.
The experience with both my celiac diagnosis and my chemotherapy has demonstrated to me how important it is to understand inflammatory models of obesity. For some of us with celiac or severe NCGI, the inflammation of the condition appears to cause weight retention, while for others the malabsorption causes waif-like malnutrition. In my body, inflammation directly influences my weight in powerful ways. It is clear, whether I have celiac or NCGI, that gluten, like chemotherapy, is an inflammatory toxin – the difference is that there’s at least some hope/ideal that the chemotherapy might actually be treating a more severe life-threatening condition. I see no such use for ******* gluten.
I know I am not alone in my experience of inflammatory obesity secondary to celiac/NCGI – even just in reading the stories of people on this blog, I know I am not alone in this. If the medical community wants to take curing/treating obesity seriously, then CELIAC AND NCGI MUST BE PART OF THE CONVERSATION AS A POSSIBLE CAUSATIVE AGENT– AND NOT AS A ******* GLUTEN FREE DIET FAD.
I call on the celiac research communities at Columbia University, the University of Maryland, and the University of Chicago to actively collaborate with obesity researchers in public health and medicine to explore inflammatory and auto-immune models of obesity secondary to celiac/NCGI and to start paying attention to these symptoms in young children.
For the most part, the overweight celiac diagnosis is largely an adult phenomenon. But if you scratch the surface and look underneath, symptoms were there in childhood. I know they were for me. I suffered physically and psychologically for many years, many of them as a child, as a result of my obesity. I’m still a large woman, but at least now I am not obese and am healthier than I have been – even while coping with celiac/NCGI, fighting a cancer diagnosis, and taking tamoxifen. Equally importantly, I now know for the first time in my life that I am a beautiful, strong woman, and carry myself with pride in my outward appearance.
If the medical community wants to take obesity-as-disease seriously, then it MUST START TAKING CELIAC-AS-DISEASE SERIOUSLY. It might be surprised how connected the two actually are.
Thank you so much for this artile! I am definitely in the inflammitory overweight Celiac camp.. I have struggled with my weigh all my life… I eat very low carb/Paleo diet- In 2 years time I have lost maybe 25 lbs which is great but only a drop in the bucket when I have additonal 60-70 lbs to lose and it doesn’t seem to want to budge no matter what I do , No matter how little or how much I eat , whether I excercise or don’t- nothing I do seems to make a difference.. To say that I am frustrated with my weight is an extreme understatement!. I am now taking supplements for my thyroid and the GAPS diet to heal my gut and in that process, I hope the weight will begin to come off. It helps to know I am not the only one dealing with this issue :).
Its not just you. In my teens I was an extreme athlete eating lean meats & veggies (very rare carbs) at 2 hour intervals. At one time I tested at 6% body fat…last test before diagnosis was closer to 36% 🙁
While i believe my celiac is a combination of stress ulcer diagnosis at 7 & terrible divorce late in my junior year of high school, it was the whole wheat diet to assist acid reflux that did the most damage. Soaring in weight, always in pain, fatigued & unmotivated to swim anymore; depression was able to take hold. The worst was always feeling like if I could just get some energy, I could break free of all the symptoms doctors ignored. “I’m just tired” was always my response. A medication that brought on narcolepsy didn’t help matters in school where I physically appeared to be paying attention, eyes open, but no one was home. The humiliation of this that only seemed to happen right after lunch was crushing in an already difficult senior year. New school, no deep friendships & those i still had were hundreds of miles away.
Doctors repeatedly told me bread products would settle my stomach & carbs provide the energy i so badly wanted…result was more fatigue, pain & weight gain! At one time was told I was too large for lane bryant to accomidate me. This crushing blow to a size 42 going into college & trying to start an adult life was too much.
I forced myself back in the gym, had relative pay for jenny craig (because my parents said it was a waste of money & effort…nice huh). By taking bread carbs out I was able to drop from 300+ to 160. When I went off the program & ate bread again weight didn’t come back quickly, but the parade of yoyo diets took hold.
15 years later I still bounce between 220 & 160 depending on how my digestion is doing. Bloat can add 10lbs overnight if I’m not careful or do something dumb like inhale wheat straw working in the garden. Pain is dramatically down, energy better since thyroid issue was FINALLY addressed. Yeast from carbs I recognize as an energy zapper. Whole 30 is looking more & more necessary as i make the transition from “thick” to having the outside again reflect the hottie inside.
I also suffer from obesity related to celiac disease and had limited results from following a gluten free diet. Turns out I am also allergic to corn and that is affecting my inflammation. I suspect I also have other food allergies and until I figure them out, my weight will continue to be a problem. I can eat one bite of something that contains gluten or corn, and it immediately causes arthritis like symptoms as well as foggy thinking, lethargy, vision problems, not to mention by the next morning I will weigh 3-5 lbs more. Very frustrating.
You were very lucky to have a doctor who quickly validated you had a reaction to gluten when it was reintroduced. Most would have never made the connection. I had never thought of inflammation creating weight gain because in me it caused the exact opposite. Thanks for sharing your story and I, too, hope the link between obesity and gluten intolerance is explored.
In 2010 I weighed 170 pounds. I am 4′ 11″ and have never been overweight in my life. I swelled up because my celiac was so bad that water was gathering in my body.
As soon as I stopped eating gluten of any kind. I am talking I do not eat any grains at all especially grown in the US, I lost 60 pounds. I now weight 110 pounds and have to eat enough calories instead of eating too much!
I have not had fast food in five years. I wouldn’t eat it if it were the only food left on the planet. I do not touch processed food either. I only eat organic NON GMO foods. This has been the most difficult part finding A SAFE FOOD SOURCE IN THIS COUNTRY IS VERY VERY DIFFICULT.
Good luck to all just starting out on this crazy Gluten Free adventure!
Peggy
Oh wow! I think this spoke to me more than the op because I have had these awful feelings too, that no-one was listening to me, and because everyone made it “my fault” I thought I had to fix it myself. My doctor kept saying I “had to lose weight” but wouldn’t tell me how, so I started running and stopped eating. i was eating 500 pure calories a day (only fruit and vegetables, and rice) and running three times a day for at least an hour. I ended up getting heel spurs from that so I can’t stand or walk for more than half an hour now. I have so many vitamin and nutrient deficiencies from starving myself, and conditions that have become permanent. I miss being overweight and healthy. I lost some of the weight but my health suffered, and anyway the weight came back with a vengeance every time i turned my back on it 🙁
Kate – I can totally relate to weight coming back with a vengeance. I recently came across information on how our bodies deal with fat soluble toxins when there’s a problem with our detoxification pathways – think liver and kidneys.
If there are fat soluble toxins floating around in our body, then these are scurried away in fat cells. When we lose weight, the toxins are then released back into our blood stream. In normal detoxification, they should be eliminated – bathroom or through the skin. The more weight we lose, the more toxins are building up in our bodies. You may appear thin, then…the weight comes back because the body has no other way of eliminating these toxins than to hide them in fat.
I’ve recently started to use dry brushing and exfoliating scrubs (decaf coffee, sugar/salt and coconut oil – you can find diy recipes online) followed by drinking lots of water. This has been a great help in moving these toxins out of my body.
Additionally, you may want to look into micronutrient level testing to see how your body is handling vitamins. If your body can’t convert the nutrients it ingests into the active level cells need, then cells don’t work the way they are supposed to. This can be due to a deficiency for eating gluten free or from a genetic polymorphism. A very common polymorphism is MTHFR. Doctors can test for this specific one. You could also have your genes tested through 23andme and then run the data through genetic genie or some other gene decoder to see what is affected in your methylation or detoxification pathways.
Getting your vitamins balanced is critical for healing and to figure out what needs to be adjusted to regain your health. For me, adding omega 3s, vitamin E, NAC and methyl B12 was essential. Everyone is different and you’ll only know thorough micronutrient testing – this is different than normal blood tests.
One diet does not work for all. If you have genetic polymorphisms, then you can figure out what’s the best type of diet for you. If you also have other allergies, then there may be cross-reactive foods.
Figuring this out for me had already made a huge difference!
I’m praying you will read this where can I get these test? In what state do you live and I would love the name of your doctors, healers.
JAB
Thank you! Thank you! Thank you! I am a dx’d celiac, have struggled with weight all my life – except when my TMJ was so severe I was not eating anything, and several years layer when I went through what I know know was a serious celiac crisis. But, being strict GF for 4 years now, I still struggle with weight. I happened along a friend who works with a NP who deals with auto-immune and inflammatory disorders (primarily forms of autistic spectrum disorders). When I follow a strict anti-inflammatory diet, I will lose weight. When I go off, the weight comes back. This makes so much sense!
One of the things that bothered me for 15 years seeing doctors was the way I was always lumped into a group of “fat” and “lazy” people. It didn’t matter that at one point I was eating 1500 calories a day while taking care of 2 kids and working full time. Or that at another point I was walking 10 miles a day. Never mind that at 200 pounds I retained the stamina and strength to spend a summer keeping up with men working on a Christmas tree farm, many of those men couldn’t hack it and left before the first week was up. No, doctors saw me as fat and lazy, no matter the amount of dieting and work I put in, no matter the strength and stamina I had. Even when I hit 250 I could chase my girls around a park all afternoon. I could run without getting winded, I didn’t feel out of shape I just felt bulky.
It certainly didn’t get any better when I started getting truly sick. “Exercise more” they said. There were days that I was so weak I wouldn’t eat because I didn’t have the strength to go to the kitchen to get food. Exercise? HAH! “Eat less junk food” or just “eat less” they said. I felt like I was dying. I already was doing everything I could to make my diet more healthy. I stopped buying junk long ago… but my efforts to be more healthy were killing me. I started doing things like adding more whole grains. Baking fresh whole wheat bread on my good days. I had no idea what I was doing to myself. The doctors just kept telling me I was sick because I was fat and lazy. I just wanted to scream at all of them that I’m doing everything right and I’m just sick!!!
This really hits the nail on the head. There is such a stereotype out there that you have to be some malnourished waif to have celiac. This even holds true still with doctors. If we truly are going to classify obesity as a disease than we need to be smart about it. Just like many other diseases, it needs to be one of exclusion. And it shouldn’t be diagnosed as a disease by itself until celiac is ruled out.
Very well said!
Excellent article!! Thanks for writing it!
( and I think I know who wrote this because of the clues 😉 )
There is simply no way for a doctor to judge if someone is a celiac from his/her size, yet, I was given the eyeball rolls when I asked about celiac when I was sick and still fat. Then, when I was very thin and emaciated after my weight plunged nearly 95 lbs,. I was looked at as having an eating disorder and my records from 2010 from my former GI doctor say “anorexia” on them. Laughable.
Now, I am gaining weight back because I am recovering. We all know
it’s about malabsorption and inflammation, so why doesn’t the medical community see that celiac is not just for the painfully thin?
In Nov. of 2007, I tipped the scales at 215. I am not tall. I have no business being 215, but no matter how many diets I tried after I gained all that weight rather rapidly over a span of a few months (which coincided with the INCREASE in CELIAC SYMPTOMS I started to exhibit)…., that scale would not budge. ( Pics of me from that time show a bloated, pale, thin haired woman who was struggling) I look younger now than I did back then.
I used to joke “My metabolism is in a coma” …but this was long before I knew anything about autoimmunity and histamine regulation and inflammation. Now, it all makes sense to me.
Hi Irish Heart, (and anyone reading)
My twin 5-year-olds are recently diagnosed Celiacs, mostly asymptomatic, but what got us to the doctor to begin with was a rapid weight gain in one of the girls. And despite adding gymnastics, hip-hop dance, and swimming- she continued(s) to gain. She is now 25% heavier than her identical twin and considered to be verging on obese, though that seems extreme when looking at her.
The pediatrician went over our 2-week food journal and agreed she eats well, so tested for diabetes, thyroid issues, etc. I asked her to test for Celiac on a hunch due to the few things I noticed like bloating, gas, headaches, bumpy arms and cheeks- all increasingly exhibited concurrent with the weight gain. Her labs showed great health except for high numbers for Celiac. A biopsy confirmed the diagnosis.
We went gluten free in mid-June, 2.5 months ago, and it’s been going well (except for getting glutened at the new school last week). Sadly, her weight is still increasing. I have read some medical studies in regards to celiacs with obesity, but there’s not a lot of information out there. And when I brought this up with their GI, he shook his head and told me he thinks she just has a really slow metabolism. I am unsatisfied with this answer and feeling very concerned about the continued gain and long-term effects it could have on her health and well-being. As it is I’m having to buy her size 10 clothes to accommodate her belly, while her twin is just going into a 7. (They are both very tall but twin 2 is lean/average weight). They eat mostly naturally GF food, though she occasionally has grilled cheese on the bread and some cookies.
Anyhow, I was really hoping you could speak to the stuff you quickly referenced here about inflammatory diet, etc. in the last sentences. Or email me? I need help on this and it often feels like I’m fighting this alone.
Thanks so much!
JacquieGarciaATmeDOTcom
Well said, I have gone from anorexia to bulimia due to I diagnosed celiac for years. You crave what you are allergic too, and yes I still fight my weight constantly. It is easy to get trapped into the ” healthy GF cookies, etc” which just caused more binges. I cannot tolerate processed carbs still without kicking in terrible cravings.
NP. Told me sugar/carb cravings are from candida. Insulin resistance is a side effect of that issue. More calories to combat fatigue creates cravings that ends in binging & the cycle continues.
Strict healing diet with daily apple pectin to bind with “invaders down below” has helped a lot.
Thanks for the aple pectin tip I hadn’t heard that one. Just went thru more allergy testings and wow have I got a lot to learn:) beginning elimination diet Wednesday, fingers crossed.
Okay that was to say being an UN diagnosed celiac!
Yes! I’ve observed with myself water retention in my tissues (which was also painful) – inflammation. Even though I wasn’t huge, I went to a gym and their ‘fat’ measurement device declared me ‘obese’ internally ie high fat. I was too weak to exercise and was near collapse all the time – that’s when thyroid cysts appeared & tests showed thyroid anti-bodies. I was also doing elimination diet and observing that some foods affected me badly. When I took gluten out, the extra weight just fell off, and I no longer was in pain. Nor was my blood pressure extremely low. At the gym (which I had hardly attended, nor done exercise, because of very low BP), they ‘measured’ the ‘fat’ and declared me ‘healthy’ fat levels and 100% of the loss was ‘fat’. I asked if it could have been water instead and they said the machine couldn’t tell difference between fat and water, so yes. When I got glutened with trace, my tummy immediately swelled up and I was in horrific pain with low BP. I think what is happening, is water is being pulled from blood stream etc to go to site of inflammation – hence the low BP and swelling.
I wondered about that…my bp and heart rate had been chronically low for decades. I’ve struggled with weight since my 2nd child and never associated it with an illness. I thought it was just from hormonal changes due to child birth.
Brave lady! Awesome lady! Rock on for the rest of your life. I am not obese, but have had problems with weight all my life and that is why I have always opted for low carb diets. If one has Celiac disease, not eating gluten surely heals us. Gluten is poison to anyone who is thin or overweight. It modifies to our body types is what I have learned. Thank you for your story. With a strong Celiac community, we can overcome and get the party started.
Hi everyone. Thanks for your wonderfully supportive comments (and to GD and IrishHeart for not blowing my cover until I was ready). This has been on my mind for quite some time and is directly related to another bone I want to pick – which is the reluctance of doctors to diagnose celiac in people who they know can’t afford the diet (i.e. people on Medicaid). And since poverty and obesity go hand in hand nowadays… you see how the spiral of my mind thinks? The social work academic NEVER SLEEPS… 🙂
Incidentally, Chicago, Columbia, and Maryland all have top-notch schools of social work. Perhaps a job in the future?…
Anyway… you all rock. I’m so glad I found this place.
I like this article. As a future RD, I’m s little torn about gluten. I believe Celiac disease is very serious and I do not take it lightly. But as mentioned above, gluten creates inflammation in those with Celiac. So does it cause the same inflammation in those without the disease as well? Is it causing inflammation in the general population and causing weight gain? I haven’t seen any solid research about gluten causing inflammation in those without celiac disease. I never want to take away from the seriousness of Celiac and the importance of eating gluten free to treat the disease but I also want to help others live healthy lives! What do you think?
Thanks so much for this article. I too gained weight while my symptoms got increasingly worse. Going to the fitness center was my religion. I had to stop going my gut was so compromised and I was too fatigued. I thought the lack of exercise was the reason for the weight gain, probably part of it. However, after being GF for a year and a half, I have not gotten the weight off. I gained 20 lbs. I have friends who tell me they think I don’t eat enough. I did a 3 day cleanse and lost 2 lbs. I felt better and think I may drink the smoothies for a longer period of time. They have all one needs for nourishment, but it is boring. I started back to the fitness center. But I am far off from the shape I was in before I started getting really sick. I have left bundle branch block and my heart starts skipping when I get to a certain level of cardio. It is un-nerving to say the least. The cardiologist is not too concerned. He has seen the activity on a stress echo. It weirds me out and I’m afraid to get to my maximum heart rate. So I may never get back to the fitness level I had achieved a few years ago. I still don’t feel totally healed. I think some of us do not totally heal. Celiac sucks big time. However, I am grateful that I now know what is wrong with me. (Over 20 years of going to dr.’s) It could be a lot worse. But I wish I had the energy I used to have. I force myself to get to that gym. Which I need to do right now!
Hi everyone my son was diagnosed with coeliac disease 2 years ago and has always been on the upper centile for both weight and height but has always been incredibly fit, swimming, cycling and running for charity. He has had a traumatic journey in the UK following diagnosis, I diagnosed him as my other son has Type 1 Diabetes and both are auto immune conditions. I had to fight for the blood test and it was one of the highest they had ever seen. The management of his care since has been awful with no one person taking control of his health and he experienced gluten withdrawal three times after coming off gluten and then being told to go back on it for the endoscopy – I know this advice has been stopped now due to the damage both physical and emotional, that is caused. The only thing that helped his severe pain at these times (weeks on end) was cold dairy – milk, cheese and ice cream – hence enormous weight gain. We had also been vegetarian and the further limitations this caused to his diet make him fill up on carbs. We knew this was not right for him but we had to deal with the day to day and pain management was our priority for the first year.Not surprisingly his body went into shock, suffering allergy and anaphylactic type symptoms and many admissions to A&E which were so distressing, no one knew what was wrong. He was prescribed gluten containing pain killers! This then resulted him even reacting to water, burning his mouth and so I took him again to A&E. This time he was admitted and as he had been gluten free for 6 months they did another endoscopy, They said he was lying about his diet and was eating gluten in secret. The endoscopy showed my son had stuck vehemently to a gf diet (which we knew – no way would he even look at gluten due to the pain it caused him) and we got an apology.of sorts. However, my son’s pain and moods were awful and they had no answers as all allergy tests came back negative – the few they do anyway. They could not deal with my son and our distress so they referred us to social services and discharged him. The last 18 months have been a rollercoaster of me and my husband researching and making some progress against fighting social services,schools and health. We have come a long way and made people listen to us now, we are not the over sensitive, emotional parents we were painted. Just today I watched a video by Robert Lustig MD http://www.vimeo.com/29402977 who I feel has expalned the relationship between obesity and leptin and insulin.It also explains the problems caused by fructose. I think this will be of interest to you all and I hope it helps. Thank you for having forums like this one, on days like this when I needed to share.
That’s always lovely when docs do that…I had a gastroenterologist accuse me of deliberately glutening myself for attention. I still bristle over that and needless to say, that doctor was immediately fired for that comment.
Thanks for this article! Two months ago my youngest daughter (4) was diagnosed with celiac after showing increasing signs of malnutrition. All three of our girls were tested and all three have the genetic setup of celiac, and only then did I understand what is wrong with my good old self! I fall into the same category as some of you here – I was a competition level long distance swimmer in my youth time, did SCUBA diving, 3 time a week martial arts for 2 decades and yet I have always struggled with my weight. I never drank much beer simply because I always felt like a bloated balloon immediately and later suffered from severe diarrhea. A few years ago I suddenly started to gain even more weight rapidly, got regular respiratory infects and finally was diagnosed with a plethora of hormonal disorders, so I am on three different hormone supplements now. I now have begun to suspect that celiac may well be the underlying cause! Almost twenty years ago I was a graduate student in Hawai’i and fell in love with Asian food. I completely stopped eating bread, Pizza, spaghetti and so on and happily lived on a diet of rice, fish, fruit and vegetable with fresh fruit and cornflakes for breakfast. I lost 45 pound within about 4 months, which I used to attribute to my being very active at the time. Activity alone however is unlikely to explain shedding 45 pounds of weight in such a short time. I am only beginning a gluten free diet now, so I cannot say yet if it will have any effect on my weight. I shall report…
Regards from Germany
S
I also lost weight living in Hawaii on an asian diet and felt so much healthier. My stomach was basically flat. Now back in the states, I started having issues again with fatigue, brain fog, and bloat. I look pregnant at times. Turns out I have celiac. Now I am trying to heal. It is so sad how much food in the US contains gluten, and how the ingredients are deceiving. They even put meat glue on items which I react to badly (outlawed in Europe). In order to be safe, I stick on the outer aisles of the grocery store for produce and have fresh fish shipped to me from Alaska. Unlike Europe, “gluten free” food here can contain a little gluten. You add up a bunch of “gluten free” items in a day and you are bound to get glutened.
I, too, have the trifecta of autoimmune disorders – Type 1 diabetes, Hashimoto’s Thyroiditis, celiac disease. My father was having surgery for bladder cancer and my sister came home to be with us. She is a doctor and if it were not for her interventions, my dad and I would both be dead. (He is still alive today (11 years later!!!)!
I talked to her about my symptoms which were exacerbated a difficult work situation. I would have breakfast, go to work, throw up, have a bran muffin at coffee break, go back to work and puke. At lunch, I would have a salad, go back to work and be fine. At my afternoon coffee break, I would have some Oreos and a glass of milk and go back to work and puke again. I would leave work, go home have some PeptoBismal and have diarrhea all evening. I also had a hemoglobin of 70 g/L (reference interval 120-160 g/L with 40 g/L being incompatible with life). I was taking a high potency iron supplement which my doctor accused me of not taking.
So my sister took me to my next doctor’s appointment and told him to refer me to a gastroenterologist and made him prescribe Jectofer (a series of iron injections). I was also sent for a small bowel biopsy and the specialist diagnosed Celiac Disease. My doctor was absolutely shocked with the diagnosis and conceded that my life-threatening insulin reactions were likely due to malabsorption as was my low hgb. In her private practice in Halifax, N.S., my sister diagnosed Celiac Disease 3 or 4 times a year. She is an amazing diagnostician and I have yet to see her be wrong. She is not afraid to say “I don’t know, but I will find out ” and refer a patient to a specialist. My doctor has since died of Lou Gehrig’s Disease and the doctor I see now is accustomed to her input on my care.
The point I was trying to get to is that I was always active as a child and became more and more lethargic in my teen years. At age 17 my sister referred me to an endocrinologist in Halifax and I was diagnosed with Hashimoto’s Thyroiditis (hypothyroid) and said not to be surprised if I became diabetic within a year. And I did!! I also had ulcers, and depression. With each new antidepressant, I put on 30-40 pounds. I now weigh 260 lbs. I am 48 years old. I blame depression and antidepressants for my weight gain. I take almost the same amount of insulin as I did in my twenties but because of this extra weight I also have Type 2 Diabetes (hmmm …does type 1 with type 2 mean I have type 3 diabetes?).
My feeling is that these diseases have all contributed to my current state of health. I would dearly love to lose the weight but every time I try to lose weight have such a profound hypoglycemic spell or I get hurt (I have broken my ankle, and have had other falls that have left me badly bruised (I broke my cheek bone when my face met a cement floor!!)
Want to know what’s really funny, the doctor I had when I was ten said I had a boring medical history!!!
i have had celiac since i was 8 and im now 23 i have followed this diet as best as i can .. and yet i dont put on weight what so ever.. my mate and his mother both have it aswell and they are as small and skinny as me… i dont know how you could even relate obesity to it, my thought is… well if you do gain weight on celiac your either not celiac.. your thyroids messed up.. or you eat that much and your body processes your food adequately… anyway from the few people i know with celiac…. they cant gain weight… so if you cant lose weight on it… you just need to get of your arse and move.. i very rarely sit around watching tv or anything… probably doesnt help me gain it.. but all but 10% of the people in the world with glandular issues.. are just simply lazy
and to the person posting before me.. mate i have respect for you sounds like youve been through some shit… i hope it gets better for you
Daniel, please educate yourself. It is estimated that at least 40% of people who have Celiacs present as overweight. Different bodies react differently to inflammation and malnutrition. Endocrine systems are very complex. Your comment is highly offensive to those of us who were told for 20 years that we were “lazy and eating too much,” though we weren’t. When I finally received proper diagnosis and treatment I quickly dropped 50 pounds. It looks like “fat” but it’s body wide edema, at the cellular level. When I get gluten, I swell right back up. It’s physically painful, and emotionally embarrassing and discouraging. I’m sure you didn’t mean to hurt anyone, but as a member of the Celiac community, your comments hurt yourself as well.
Bless you Daniel, I wish it were so easy. I think you need to rethink those words, they really are inaccurate as well as unkind.
I just got diagnosed with celiac. I have always struggle with weight. I’m glad this community is here.
Where to begin…. I had always been overweight. After having my child in 2001 I started developing allergies to everything. I have been through allergy testing 3 times. Guess what different results every time! I started getting very sick, had to have several sinus surgeries then I was diagnosed with Hashimoto’s Thyroiditis. In 2007 I was diagnosed with celiac disease. I didn’t eat gluten for 5 years. I did ok but was still having issues with food. Canker sores, hives, unexplained rashes, red swollen ears. Thank God for allergy medicine. In 2012 I started getting real sick again. Went to a new stomach doctor. He said that I didn’t look like a typical celiac patient. Hummm…….Because I was overweight I guess. Well he told me to try eating gluten again. I got sicker, so I went back to eating low carb. In Jan of 2014 I decided to have gastric bypass. It was extreme but I was so sick all the time and couldn’t eat anything and was getting heavier. For the first 6 months I did great. I was eating mostly GF protein shakes and then protein. I have tried adding back other foods and not doing well. If it contains more than 3 ingredients I can’t seem to tolerate it. I am also very allergic to sunflower (seed/oil), which makes finding GF food a lot of fun. Its exciting to find this site and see what other issues folks are having and that its not just skinny folks with these problems. I am trying to get back to GF eating, I am taking it day by day.
Thank you! Thank you! Thank you! I am 34 years old and I’ve JUST been diagnosed with CD. I had the same weight story! I’m still wearing my Lane Bryant’s right now! I’m ok with that, but I’ve tried to be a healthier weight and never could. I never could feel “healthy”. I have seizures, hypothyroid, acid reflux, high WBC, iron def., and skin issues…thanks you, I know what one of those is now…Tinea versicolor is on my arms. I feel like banging my head into the wall and rejoicing at the same time. It’s take THIS long to find out, but at least now I know and I can start feeling better. The journey is just beginning.
I want to say that Daniel is one of the most ignorant people on this panel. He has Celiac’s Disease and is skinny! It says in the article written by experts in the field of endocrinology that some people lose weight/some gain weight!!!!!! Daniel, with the likes of you and trying to act like a doctor, simply makes you a non-entity. Grow up and realize this is a serious disease and one not to be taken lightly. Read, educate yourself, and quit using foul language. It’s makes you message ill-conceived and weak.
I was just diagnosed last week with Celiac and am so overwhelmed by the diet changes. I had the opposite… I have always been tiny. I eat and eat and could never keep food down or gain weight or muscle no matter how many sports I played or times I went to the gym. I was also exhausted, sick, and/or in pain and have been in and out of doctors offices and hospitals for years only to be dismissed because I’m 20 and weigh 95 pounds. I’ve now been warned that I can gain a lot of weight very quickly because my body should begin absorbing the nutrients it never did. Nothing can be wrong with that, right? So wrong. There is no sympathy in the medical world for this disease and my heart goes out to all of you that experienced that in different ways. So glad to read this and know I’m not alone in this struggles! Please let me know what your favorite resources are!
Honestly these doctors are sick, and sexist frankly. Even the height/weight chart arbitrarily decides that women are supposed to weigh less. I work out and have more muscle than a lot of women my height. At age 29 I was 5’10”, weighed 190 lbs, and wore a size 4 (24 inch waist). I always thought I was fat because other girls weighed 90 or 100 lbs. But even at that size, with a 4 falling off of me, doctors constantly warned me about eating and the horrors of gaining weight. When I was pregnant with my son the doctor was constantly on about keeping my weight down (no problem, doc, I was throwing up for two!). My first really bad gluten flare happened this August, and I was hospitalized every month for four months until I stopped eating wheat and stopped getting sick. But the thing is that I had told my doctor long before that, that I was gaining weight and didn’t know why. He said I must be eating something because it takes calories to gain weight. At the hospital, ALL THREE TIMES they found an obstruction in my bowel but said I had probably just eaten too much, or the wrong thing and PRESCRIBED A LAXATIVE. Which of course, put me back in the hospital. And they’d schedule colonoscopies and endoscopies but I’d have to wait 5-6 months for the appointments. They made me drink kleen prep then of course, I would get sick and be completely unable to get to the appointments. I started not eating or drinking anything with sugar in it (so water only) for 3 days before the appointments and (no surprise) they didn’t find any swelling when they looked. I hate endoscopies and wish no-one had ever invented them. And now they have a pill endoscopy but they refused to let me choose that option, which is ridiculous since it’s non-invasive. They couldn’t diagnose anything the way they’re trying to diagnose it anyway. I don’t know why they won’t just do the stupid tests when I’m already in the hospital. The last time I was there for three days. I’m pretty sure in 3 days they could have found a doctor 🙁
I’ve always been big. I was diagnosed with celiac after a bunch of stupid doctors nearly killed me with their guessing games. I’m sicker now than the celiac ever would’ve made me had they just left me alone.
I gained about 20 pounds since going off gluten and a lot of other things. I’m now at 280 since I lost a few pounds. I can’t lose OR GAIN, no matter what I do. I feel like death unless I eat 4000 calories, and after that was when I LOST WEIGHT.
I’ve had doctors accuse me of being lazy and only eating junk. I haven’t eaten junk in 10 years. I wasn’t believed. I was told to exercise. I can’t, really. I was born with patella alta. Celiac gave me nerve damage in my arms and back, and early menopause that cause the hot flashes that exacerbate the extreme heat intolerance/excruciating skin rashes I’ve had since before I was diagnosed.
Rather than help me, the doctors have only made my PTSD worse. When will these idiots understand that telling someone being fat will “make you die early” is far more harmful than helpful? Living like this is hell… do they honestly think everyone wants to live past 40? Assuming their “science” is true – and I’m not convinced.
Amazing… I salute this incredible lady.
My what a lot you have been through – and i know from personal experience as you life events mirror mine. Overweight, can put on weight just looking at gluten based food, shed the weight easy when no gluten – and BC which was o and P positive but node beg. My cancer was mucoid though! Having had bones that ache from hormone therapy and now neuropathy I’ve been having tests to see what is the cause and found out I have no IGa. I’ve been tested for coeliac before but although I have many of the symptoms the results were negative and doc just told me to lose the weight. My rhuemologist was smart and made the link – sending of bloods for coeliac based on another antibody. Positive result. So I am convinced. I am jet hoping that by coming off gluten my symptoms will disappear and I can get on with life.
I want to share part of my experience in case it helps someone. I have 4 autoimmune conditions, including Celiac, which went undiagnosed for decades, in part because most doctors still believe the stereotype that all Celiac presents as skeletally thin. When I finally identified the problem and went GF I quickly lost 50 pounds. Most of my many symptoms vastly improved or disappeared altogether, but some never fully resolved. Gradually, over 2-3 years, many of them came back, along with the weight and joint pain, until I felt like I was back at square 1 despite strict adherence to GF diet. Very discouraging. In desperation, I went on an extreme elimination diet to see if I might be reacting to other foods; I’m eating only unprocessed meat, fresh vegetables & fruit. I know first hand how hard this is to face when we already feel so restricted avoiding gluten, but it has paid off. I dropped 20 pounds in 2 weeks, and was able to go off Prilosec for the 1st time in 20 years. As before, it was diet related edema from inflammation. I haven’t figured out yet which foods are the cause because I feel so good that I’m reluctant to reintroduce things that might make me worse again! Other dietary sensitivities such as dairy, other grains, eggs, sugar, nightshades, etc. are very common with Celiacs, so if you’re still feeling horrible and struggling with weight gain despite a reasonable, GF diet, please consider doing an elimination diet.
I have been thin (size 4 up until I was 29 years old) and I have been fat (When I turned 30 I started gaining 10-20 lbs a month with no change in my diet) and I can say with perfect objectivity that doctors look for the easy way out when it comes to diagnosis. Maybe it’s easier to tell a person something is their own fault, than to show compassion, or maybe they’re taught this in medical school? I’ve spent a lot of time in hospitals losing it from both ends before I stopped eating gluten (and all of the other 27,000 things my stomach has a reaction to) and I noticed the way they treated everyone from smokers who came in with a cough to kids who came in with a broken arm, and it’s always the same. It’s your fault, quit smoking; it’s your fault, watch your kid. When overweight people come in with stomach issues they just roll their eyes. Of course you have indigestion, stop sitting around and eating all day, fatty!
At one point I was so afraid to gain weight that I was eating 500 calories or less a day and working out almost constantly. I got myself down to eating one can of soup and a couple of crackers every day. Notice the crackers. At the hospital I’d come in with a sickness and the first thing they’d give me once they got me stable was, guess what? Soup and crackers.
It can take a lot of work to convince them. What’s really weird is that if you say you’re not on drugs, and a drug test says you’re not on drugs, the doctor believes you. If you say you’re diabetic, and a sugar test confirms it, you’re diabetic. But when I went in and told my doctor I’m malnourished, and the test confirmed that I was malnourished, he said the blood test must be wrong. “You have to be eating something, because you’re gaining weight. There are only so many medical causes of weight gain, and you don’t have them. Obviously you’re eating a lot of calories but nothing with nutritional value.” <<<< That's the to-do way of saying "Stop eating junk food if you don't like being fat, fatty." I threw up anytime I tried to eat junk food. Eating three potato chips is a recipe for three days in the bathroom, and if I eat anything with cream, sugar, honey, or wheat gluten in it? Pfft I'm not leaving the house for a week and a half. Honestly, they need to just stop calling their patients liars.
I only ended up getting the help I needed after I pointed out that I had been hospitalized twice in one month for severe nausea and vomiting, and that both hospitalizations had lasted a week. Looking over my medical records my doc saw that I had, in (medically confirmed) fact, eaten nothing but jello, water, and ginger ale for just over two weeks out of the month. Even if my diet had consisted of 10 donuts a day in between the hospitalizations, I shouldn't be gaining weight.
It's pathetic that you have to basically die before anyone will treat you if you look overweight. Or in my case, 5'10" and 220 lbs, "morbidly obese"
This thread has been very helpful for helping me understand that some coeliacs present with weight gain rather than weight loss. My 19 year old daughter has just been diagnosed with “extremely severe” intestinal damage due to coeliac disease. Prior to going gluten-free, she was gaining weight by the week – all around her mid section. However, I know exactly what she was eating and in terms of calories, there’s no way she should have been getting fatter. If anything, she should have been losing slightly or at least remained the same weight. She has only been gluten-free for three weeks. Will her weight normalise now that gluten has been eliminated? If so, how long will it take?
Oh my goodness, I am so happy I have seen this ,I have been so I’ll for so long & doctors just don’t believe me when I tell them that I hardly eat anything, yet I’m anemic & they don’t know why ,I can hardly leave my home because of needing the bathroom constantly, but because I am overweight I must be OK!
Before I was diagnosed with celiac disease, I was having increasing weight gain, despite eating modest portions, eating regularly and having veggies and lean protein and not much sugar. As soon as I went off gluten, the weight fell off, as it was mostly edema caused by inflammation. However, like many other people I know with celiac, going off gluten has not been a permanent solution. I have had nearly 15 years of getting increasingly sore and swollen due to inflammation. Sometimes I couldn’t sing for several years at a time due to edema. Finally after getting allergy testing, I’m off soy, rice, dairy, most nuts, eggs, chicken, beef, asparagus, spinach and a whole bunch of other things and the daily headaches and terrible back pain is mostly gone, as are itchy ears, hives, and a burnt feeling tongue. I’m also warm for the first time in ages and no longer have heart palpitations. Some of the crushing fatigue has gone away. (For a time I had to stay in bed whenever I wasn’t working, just to be able to make it through the day – and the internist’s only suggestion was that I needed to be dating someone because I was lonelier than I thought I was or else I must be depressed!) I am able to tackle jobs now that seemed insurmountable before, even though they shouldn’t have been. I’ve been tested for everything and my conclusion has been that I have histamine intolerance. However, I’m still dealing with overactive bowels (not diarrhea, but I don’t think food is staying in my system long enough to really get food value), and I know the sensitivities and histamine intolerance are symptoms, not root causes. I can’t lose weight and for awhile the histamine had messed up my hormones. I get weird smelling sweat and strange emotional reactions when I am not well physically, but it’s sometimes hard to pinpoint the cause of what has set it off. I feel terrible about looking the way I do (I naturally would be about 135 and am now 210), but more distressing is what the inflammation and water weight are doing to my body. I dry brush, and get my legs massaged every day and go for lymphatic drainage massage, and jump on the rebounder. But I do think that my vitamins are still out of whack. I’ve been treated several times for leaky gut and for candida and at this point just feel that spending more money on supplements like that is a black hole. It is so frustrating, and doctors really have no help, nor nutritionists, nor occupational therapists, or massage therapists. In looking back, I can see that even as a child I was cold all the time, tired, and had some allergic reactions to foods, had reactions to histamine when I exercised, and was a picky eater. I think it became much worse in my late 20s, but always had been there to some extent and was exacerbated by a few years of heavy stress. There needs to be more research done into how celiacs can support their health beyond going off gluten, because for most, that is not the complete answer.
Hang in there Erin.