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Anybody Out There A Morbidly Obese Celiac?

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I am very overweight and piled it on since going gluten free!! I am hungry most of the time and craving chocolate++++

I hope things get better - I was losing weight last year and its gone pear shaped since diagnosis :angry:

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Hello..you are not alone!

I have always been heavy..I have always been sick....and the doctors still give me a look when I tell them I think I am a celiac...so I dx'd myself.

When a child prefers salad for breakfast and the same child spends 4 days a week in a darkened room because of migraine headaches..there might just be a problem.

I lied... I did manage to lose considerable weight once...went from 300 pounds to 140 in 18 months...that required 10-20 mile walks every day, 500 calories, dexatrim, laxatives, water pills and the occasional purge here and there...(the weight crept back on and then some when I started working 70 hour weeks and exercise became impossible and fast food provided quick energy bursts for my long hours)......but now that I am older and have children...that sort of weight loss plan no longer appeals to me.

I tried Atkins once ...felt great lost 40 pounds in a month..went to Disney for a week eating hamburgers and chicken tenders and gained it all back and felt like crud...in one week....couldn't get past the sugar cravings to get back on Atkins before my soon to be husband decided Atkins was going to kill me and guilted me off of it.

When I was pregnant at 275lbs the OB prescribed the gestational diabetes diet 'just in case' and thought it wouldn't hurt if I lost some weight...the diet allowed for 3 times more food per day than I was eating off the diet. When I told her she looked at me like I had 3 heads.

Decided that I should get my thyroid checked ..when that came back normal the doctor tried to prescribe prozac to me. I smartly declined that little detour.

Discovered Celiac Disease for the first time around 35 years of age in a magazine article..I think it might have even been just a one page ad listing symptoms and everything made sense...went to a new doctor and she told me that couldn't possibly be my problem because of my weight but wanted to prescribe diet pills and then explore gastric bypass.

Went gluten free and lost 40 pounds in the first month...felt great.

Then I fell off the gluten-free wagon because it was just easier eating everything everyone else was eating...after time it stopped hurting and the weight crept back on....again.

Tried Gluten Free again and didn't lose weight this time and in addition I discovered all of the gluten free breads, rolls and waffles they have in abundance at Disney(I skipped the gluten-free bready things the first go round)....and stocked some of that stuff up at home and started feeling cruddy again and definitely not dropping weight like before in fact I was bloating worse than ever...started paying better attention and realized that rice made me feel cruddy, cheese, milk and yogurt too...coffee seemed a little easier on the stomach with soy milk but now I am thinking that needs to be cut too.

I just started sparkpeople and I am eating unprocessed foods and tracking calories until I get back into a routine..I have a hernia from giving birth that I am scheduled to have fixed in May and the surgeon told me not to lose weight or exercise ...but I can't wait I need to get on track now(Dr Oz has me paranoid about dropping dead) ...and if I lose weight he is just going to have to deal with it.

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Hello! Another morbidly obese celiac. Just diagnosed, literally, have my endoscopy today and the doctor said "if it looks like a duck and walks like a duck."

Anyway I am going to start South Beach this week. It seems like a good kick off to my gluten free lifestyle and my PCOS and insulin resistance. I really think that celiac is related to obesity, insulin resistance and the host of problems people are talking about here. Is it a coincidence that you have Grave's disease, diabetes, obesity, depression and chronic fatigue, I really think not. Chronic inflammation which is from celiac causes all this stuff.

I was losing weight and exercise, and my celiac diagnosis threw me for a loop. I have been blowing it big time! BUt I need to get back on my game. So South Beach it is.

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A few months ago my BMI was 31... considered obese. I'm trying hard to change my eating habits and am now at a BMI of 29... just overweight.

I was diagnosed very quickly... only about 2 months after symptoms showed up. Then I went way overboard cooking/baking/making the things I COULD have to make up for all the things I could no longer have. People would ask me what the symptoms of celiac disease are and I'd say, "Well, the first is often unexplained weight loss," and then I'd look down at myself and say, "ummmm... I didn't GET that one."

I've come to the depressing conclusion that I am a total carb/fat/dairy addict. I always crack up when I see shows about food and the psychological reasons people eat what they do. I always yell at the TV, "WHY can't it be that I just LIKE macaroni and cheese better than salad???"

I had to cut way back on my carbs. I eat bread only once or twice a week. My normal lunch is 1/2 cup brown rice, broccoli and carrots and a few tblsp. lite ranch dressing. Suppers are lean meat and veggies. Snacks are fruit. I limit dairy ... cheese especially. I can't have butter in the house!

I've lost 15 lbs. w/o too much effort and have another good 15 to go. Exercise would help, but I'm kind of slothy.

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I'm obese, but not morbidly I believe. I'm 5"4 and 179 pounds right now. Before I started feeling crappy all the time I was 130 pounds. I believe this is partially behind why I've gotten so heavy so quickly. I got up to 194 and 179 is after I gave up on dieting and exercising.

I'm starting my gluten free diet today, and once I start feeling better I'm planning on working out more :)

Thanks for the advice about gluten free foods, I'll be careful and try to stay natural with most foods. I just spent the morning trying to figure out if I can have dextrose to see if I can at least have hashbrowns.

Maybe all us bigger girls/guys need to start a support group for weight loss while going gluten free?

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I was recently diagnosed with Celiac in the last two weeks. I'm 100 pounds overweight and I have sleep apnea also. Like you, the doctors had no clue why I was overweight as I am a very active individual. Eleven years ago I went through a traumatic event and that is when I gained over 100 pounds plus. I had been told that I had IBS, which isn't the case at all. I went for an endoscopy/colonoscopy a few weeks ago because my stomach was bothering me so bad, I knew I needed to do something. I had already started dropping some pounds just because my stomach hurt, but I switched to gluten free by eating lots of veggies, fruit and I'm pretty much losing a pound a day. I'm 30 pounds down so far. I haven't talked to a nutritionist yet, but what I eat is basically like what I did on Slim For Life a few years ago--minus all the protein drinks & bars. I'm trying to read as much as I can about what to eat. I'm using my stomach as a gauge. If it hurts after I eat something that I think was gluten free--that's going on my no-eat list. I ordered a grilled chicken salad at a restaurant yesterday and didn't feel well.

I'd love some easy options from any of you out there. I'm pretty busy and used to love Lean Cuisine for lunches---but every single one of the varieties that I like contains wheat.

Is there a big "AVOID THIS" list out there? thanks!

Hey I am a newly diagnosed Celiac and I am also morbidly obese. My doctor practically laughed in my face when I asked to be tested and the only reason I got tested was because my extremely skinny mother was diagnosed and her doctor said all family members should be tested. So there I was getting laughed at. Funny thing of course... I ended up having it. I thought that people with celiac disease usually were malnourished. Am I way off base? Anyway I weight a LOT and I am wondering if there are more out there like me.

I am a 23 year old female. I am not a heavy eater but have been huge since I was maybe 8 or 9 years old. I have also been diagnosed with PCOS, Sleep apnea, Chronic Migraines, Depression and anxiety, Graves disease, high blood pressure... Lots of things. I have a hard time losing weight on any diet even when working out. I train a lot with my dad and he ran an ironman last year...here i sit extremely big losing maybe 3-4 lbs when working out. I don't get it and frankly my doctors have been dumbfounded. I have yet to become completely gluten free because I make a lot of beginner mistakes. If there is anyone out there in the same boat or even on the same ocean, has the gluten-free diet helped you lose weight at all? Or at least helped you be able to lose weight.

Thanks for any input

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Is there a big "AVOID THIS" list out there? thanks!

On this site are lists of g.f. foods, and also a list of villains. The links are in the green area on the left of this page: http://www.celiac.com/

That's the only thing I know of, as I'm really new at this, too. Maybe someone else knows of other helpful lists?

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I used to be morbidly obese and am now half the man, literally, that I used to be. Gluten free and low carb works for me but you mileage may vary. It can be done.

*****

* Before I was diagnosed 6 yrs ago, my weight had dropped from 212 to 185

(I'm almost 6'3") I looked like the walking dead. After 6 yrs Gluten Free,

I had gained until I got on the scale New Years Day, and it zoomed up to 270.

I was 'Obese'...

My wife was diagnosed as Diabetic in January. She was put on an Insulin Control Diet. She too was over weight. Since my wife went Gluten Free when I had too,

I joined her on her Insulin Control Diet. In the last 4 months I've lost 48 lbs.

This has worked for me. Now my diet is low carb,low sugar,low fat, and the Weight has fell off of me. My blood pressure dropped from 165/90 to 105/65.

My goal is to weigh about 205. I'm large boned and look skinny when I'm at the weight recommended on the BMI charts. (185-190 lbs.)

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The skinny celiac is more and more a thing of the past. Doctors get their knowledge from school they attended 20-30 years ago and don't seem to get updated. You're not an anomaly!

Saw a doctor friend in line one day and was going on and on about the miracle of gluten free and why, oh why, doesn't more doctors know about this.

She said there is only a small chapter and barely touched on in college and that I know more than she does (she went to med school about 20 yrs ago). They really need to rewrite the books.

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I think there are a lot of us (morbidly obese) people wandering around out there in search of answers. I didn't have a weight problem until about 12 years ago when I started putting on about 2 pounds a month, every month, in spite of diets and exercise. After a gain of over 100 pounds it sort of leveled out. But none of the medical people had much in the way of answers. Still don't. If diet and exercise don't work, then the MDs simply shrug their shoulders, mumble about patient compliance and blame you for not losing weight like they said you should.

I swear if one more medical person tells me that I need to lose weight, that I need to eat less and exercise more I'm going to rip their head off and spit down their throat (just joking of course, think of the mess!) Nobody but a sumo wrestler wants to carry around 100 extra pounds!

After I did thousands of hours of www research on obesity factors, I went back to the MDs and asked about hypothyroidism. So about 7 years ago doctors said, "looks like you've been subclinically hypothyroid for at least 10 years" ROTFL. So they started me on thyroid meds which helped ALOT with various symptoms but the weight remained. No amount of diet or exercise has been effective for weight loss. The extremes of Atkins (high protein low carb) and Vegan (no animal products at all) had exactly the same results - no particular weight loss, but I did reverse out of type 2 diabetes with a vegan diet.

My health continued to decline so I continued to do more research. Finally, I started getting lab tests I felt needed to have done outside of the mainstream/health insurance/doctor office. I got tested for adrenal function - something MDs should have done before starting me on thyroid meds. My adrenal function was completely opposite of norm. Poor adrenal function combined with poor thyroid function makes it practically impossible to lose weight.

I learned you can't repair adrenal function on a vegan diet so I added meat back in. And then I started having severe digestive problems which turned out to be very low levels of stomach acid and enzymes - probably why I had so much trouble with Atkins and felt 'better' as a vegan. So now I take HCL and digestive enzymes with protein meals which means I can at least eat without upset.

But life continued to deteriorate, so I've continued looking for answers to my slow slide downwards in health. I narrowed the possibilities down to foods eaten. Last month I decided to test for celiac through Enterolab even though I didn't have the classic gut issues and am obese. Food type eaten has to be related to the failure to lose weight since caloric intake/outgo and manipulating food ratios proteins/carbs/fats made no differences in outcome. So back to suspecting food type as opposed to caloric values as a root problem.

I'm glad I spent the bucks to gene test (Enterolab). It turns out I don't have the classic celiac genes but I do have a double copy of gluten sensitive genes plus I tested positive for active gluten and dairy IgA. Recommendation from the lab is to go strict gluten-free and casein-free. So while I'm not 'celiac', and would never show up as gluten-sensitive at a regular doctors office, the gene tests and fecal tests for early detection show I am gluten intolerant and dairy intolerant. The question will be whether eliminating those foods will then allow the body to release the excess weight - the gluten and dairy 'toxins' stored as fat.

Of course being both gluten and dairy intolerant may explain some of the lack of results in 'dieting' - gluten was excluded on Atkins but not dairy. Dairy was excluded as a vegan but not gluten. I still need to test for corn and soy issues, but maybe I'm on the right track.

I'm re-assessing all of the data I've gathered over the years, everything I've learned about 'dieting', in the hopes that a Gluten-free Casein-free eating plan will improve my health and ultimately result in weight loss. The scientific studies indicate that morbidly obese celiacs do tend to lose considerable weight on a gluten-free diet just as underweight celiacs gain/normalize their weight on gluten-free diet. I'm hoping that's also true for the gluten-intolerant folks.

Link: http://www.biomedsearch.com/nih/Body-Mass-Index-in-Celiac/19779362.html

If anyone has suggestions as to a good 'next step', I'm listening.

Cheers!

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Wow. After a couple of years of researching, but thinking I can't have a gluten intolerance, because I gain weight so readily, I am almost in tears, reading through all of these replies.

I am self diagnosed as having a gluten intolerance...I have always felt better/lost weight more easily on low-carb and have known wheat was a major trigger for me...this just solidifies what I have known to be true, but have lived in denial.

This past January I went on a 'Daniel Fast' for 10 days, along with other members of our church. It is dairy/meat/wheat/sugar free fast...some stay on it an entire month. At first I felt better, a lot of people lost a bunch of weight, I lost a couple of pounds at first, but was bloating up by the end of it. I started back on 'regular' foods once the official fast was done and hadn't looked back...and of course I've been feeling miserable too.

At the end of February, my husband and I were out of town for 10 days, and I ate a lot of breads, etc. with dinners. Several of the days I got very ill (extreme cramping and pain/running to the bathroom)... Since then, I have felt really ill...I felt weak, depressed, extreme fatigue, anxiety, bloated, tingling in my hands and toes and have gained at least 10-15 pounds...I can't stop eating!

Then this week I realized something...although I have had digestive problems since an early age, and have cut out wheat/grains while on Atkins several times during my adulthood, the symptoms are much WORSE since I tried the fast this past January and since going back to eating poorly. It is a much clearer cause/effect from my diet this time for some reason.

I see from other replies in this thread, that is a common phenomenon for celiacs/gluten intolerant people, to feel worse, if they have gluten again, after being gluten free! Makes sense to me now.

Today is my first day on the gluten free wagon...not sure what other foods I will have to cut from my diet, in order to lose weight, or which kinds of foods (I think dairy is another trigger for me, I had to cut it out entirely when breastfeeding my youngest son and I lost 8 pounds in two weeks from that alone)...but now I don't feel hopeless!

I don't mind 'being on a diet' - IF it will truly help me to feel better. I think being gluten free will help and if I can lose some weight too, that's a bonus! :)

Thanks to all for sharing your stories!

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Good grief, Mtnplanner, your story could almost be mine! :o Down to the sub-clinical hypothyroidism! Although the Atkins diet is about the only one I haven't tried, and I was going to start it this weekend. My doc wants to do an adrenal test, along with testing for food allergies and LGS (and a few other tests too), but I don't have insurance, so these tests are going to have to be one at a time, and probably pretty widely spaced! :(

This really sucks. :angry:

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I was 270 at 5'8 when I was diagnosed in Dec of 2009.Along with my new found gluten free lifestyle the doctor also suggested a low calorie diet due to my new found high blood pressure and high cholesterol.I call it the "NO" diet. No red meat ,pork,butter,animal fat,eggs or salt.( or gluten of course) I thought at first it was a death sentence.I am southern and bacon is a staple in my house but I also have 5 little people who needed me to feel better more than I needed bacon :) . So I started with the diet Jan 2010 and started walking 1/2 a mile every morning and doing the Biggest Loser Workout Videos everynight.(Great videos by the way) I also started journaling everything I ate to make myself more accountable for it.I am now able to jog 3 miles every morning and I swim a mile 5 days a week. It is hard work but it is paying off. I have lost 61 lbs since January and am currently in a size 14 .Which I haven't seen since my days before kids.

I also get the "All Celiacs are thin" alot from Doctors and others and I'm sure most of us know we are all different.But it is nice to know others out there are going thru the same thing and you are not alone.

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My doctor said those people are usually rail thin. But after watching my blood work get better in after three tests he told me to keep doing what I was doing. I have been tested I am gluten intolerant but to not have gluten antibodies. Cures the same either way. I am 5'2" and was 187 pounds when diagnosed. I was always hungry and craving something.I never felt done eating. After becoming gluten free I finely learned what hunger was. My body signals were just all messed up. I am now 162 to 165. At this point I am not really trying to lose weight. Just trying to take care of my self. It does feel nice to be off the yoyo weight wise.

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As a follow up to my previous post, I'd like to add a few new items. Alas, simply going Gluten-free Casein-free hasn't caused me to lose weight, so I'm doing further research. It appears that it's not uncommon for celiac/gluten intolerant patients to react unfavorably to millet, soy, and buckwheat even while avoiding gluten grains.

[from Book: Good Food for Bad Stomachs by Henry D. Janowitz, MD] That finding is actually consistent with my own pulse testing.

I've used a variation of the Coca Pulse Test (recommended by my FNP) to self test for food sensitivities. I've found this little home-test to be pretty useful, though my FNP uses an increase of 6 beats per minutes as a cut off point instead of 4 beats per minute during a food test. [http://tuesdayminute.net/Coca%20Pulse%20Test%20Form.pdf ] The Coca Pulse Test for Allergies book itself uses more complex methods. The entire book is available online free at: [http://www.soilandhealth.org/02/0201hyglibcat/020108.coca.pdf] but the shorter self test is a very good indicator of potentially problem foods.

Basically, I test several foods first thing in the morning before breakfast by sitting at the table for a couple of minutes, taking my pulse for 0ne minute, taking a mouthful of the food to be tested and chewing but not swallowing for 30 seconds. Then I retest my pulse for one minute. If my pulse increases by 6 or more beats per minute then I consider it a problem food for me. Some foods may even lower the pulse count. I keep a log and over time I've got a list of how I react to different foods. Mostly, grains raise my pulse, vegetables and fruit lower it and meat reactions vary considerably.

After considering my individual situation (the need to improve adrenal function meaning I need to eat animal protein but avoid dairy and grains) it has led me to try the Paleo Diet. It's basically animal proteins, vegetables, fruits, nuts and seeds. Consequently it's both gluten free and dairy free by default. It's apparently popular with crossfit athletes - not that I ever hope to be athletic again. There's quite a bit online about paleo eating/cooking and Cordain's book 'Paleo Diet' is available at most book stores. I've located two free paleo cookbook downloads: http://www.lalannefitness.com/images/uploads-main/paleo_breakfast_recipes.pdf and http://liveprimal.com/LPrecipes.pdf and there's also a web site with tons more recipes at: http://paleofood.com/

So far I seem to be losing a little weight but it really too soon to tell if Paleo will be my particular answer to the weight issue. Any weight loss is welcome, though.

I also came across an entire lecture by Gary Taubes ( the guy who wrote 'What if it's all a big fat lie?') and author of 'Good Calories, Bad Calories'. It's really worth the hour plus time it takes to listen to the lecture/slides.

here's the long link: http://videomedia2.swedish.org/mediasite/SilverlightPlayer/Default.aspx?peid=cd8c7aa15bc94a0486f4ee9b66ef8f8f

Taubes findings are that insulin levels ultimately determine weight gain, not calories in/out. This is actually good news since one can control blood glucose levels with diet modification. His findings make a lot of sense to me since I've found the traditional admonitions of 'eat less exercise more' to be useless.

I don't know if this will help anyone else to connect the dots but I thought I'd pass it all along.

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I was morbidly obese when I was diagnosed - 5'5 and about 280 pounds. I always figured it was because of my hypothyroidism, since I exercise and I've never really had a big appetite. But in the year and a half that I've been off gluten, I've lost almost 50 pounds! Luckily, I didn't have to fight to convince my doctor to test me, because she was the one who suspected I might have celiac!

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I am glad you can see that you are not alone. You got a ton of responses. I am 5 foot 2 and weighed 187 when I diagnosed myself. the doctor disagreed with me cause I was fat. My 23 year old kid is the same way. We test negative for antibodies. But after the doctor lowered my blood pressure meds, saw my blood sugar drop and my Hdl go from 19 to 49. He said you may not be a celiac but keep doing what you are doing. I have also gone from 15 hours a day of sleep to 9 hours.

My calcium levels and protein levels were low. Which was odd cause I was taking about 1800 mg of calcium citrate with d a day. ( I have to cause I had to have my thyroid removed) My body was just not absorbing nutrition so I just kept eating like I was starving to death. I have found now that when I get the munchies I have to ignore the urge and take an iron pill and get back on my multivitamin.

I am not hungry any more constantly like i was when I ate Gluten. I lost 17 pounds of bloat the first two weeks I got of gluten. I now maintain about 162 to 167.

Good luck you are not alone.

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I am morbid obese and been celiac for 9yrs.. have fought with wieght issues for years! On the program to get insurance approval for gasto bypass surgery. Getting worried not finding any drinks that are safe. But on the issue of getting a doctor to recognize not every celiac is thin.. I don't get it...

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I guess I am a club member --- one of my doctors is recommending bariatric (weight loss) surgery but I am having challenges finding information about the impact of these procedures on the celiac disease process. Is there anyone out there that has had experience in this area. I would love to talk with you.

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Hello everyone,

I'm not celiac as far as I know, yet I lost 70lbs or so rapidly by simply cutting out gluten and eating more fat. This led me to start investigating it on a bigger scale, and virtually daily, I'm finding links showing that obesity is really about malnutrition - as in, it's not what you're eating so much as what you're not getting that's preventing you using fat as a fuel source. Insulin resistance is just one metabolic problem stemming from lack of nutrients.

Given that traditional advice is to keep to a low fat diet, for those people who have gone gluten free but aren't losing weight, can I ask how much saturated fat, sugar and other grains you're eating?

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Hello,

I was diagnosed in March 2016 I was malnourished but 280lbs after going gluten free, on a restrictive amount of calories a day 1700 I am now at 260lbs.  Every time I am glutinated I gain 5lbs in bloat until it is out of my system.  Going gluten free is not a miracle weight loss thing you still have to work at losing the weight. 

OP have you last weight, have you found something that works for you?

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First thanks for being here. Yes my family is obese an father passed from heart attack (undiagnosed Celiac). I was 230lbs, 5foot 5. The first year I went gluten free it took 6months for the inflammation, CRP to be normal but I dropped 5 labs a month no exercise. I got down to 136 labs but I was on a strict elimination diet because I was still finding old intolerances like dairy, sugar, citric acid, foods high in magnesium or folic acid. Also cut out all processed foods due to additive and preservative intolerances. Ok it sounds bad but truly I eat lots of yummy food I just ever eat out. It has been 10 year and my gut is healed. I have some issues because I went over a decade undiagnosed by many doctors and hospital visits. I have gained some weight back since I can eat more but its healthy fat. Your body may need specific vitamins or your inflammation may sill be up from sugar? Or food intolerances. You will accomplish your goals, stay vigilant!

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Hi, I found out I'm genetically predisposed to having celiac disease. My grandmother died of colon problems and my mom suffered from colon problems her entire life including having celiac disease symptoms although she would never get checked. I have all the symptoms of celiac disease except I'm morbidly obese. I lost 50 pounds on a gluten free diet before I realized that I had celiac. I just assumed it was from swimming a lot and doing a protein diet. When I went back on the gluten I gained tons of weight and am now morbidly obese. My entire life I literally suffered from these symptoms all being told if I just lost weight I'd feel better. I'm afraid to go to the Dr now because it's so expensive but the thought of them not listening to me again is very depressing and I just don't want to go through that anymore. I even broke my hip and tibia including 3  foot bones all because of this disease due to malabsorption. I had no idea I suffered so needlessly from this disease even in childhood. Anyway, now that I know for sure I started my first day gluten free and am just going to completely give up all wheat. 

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5 hours ago, Ruthiegirl24 said:

Hi, I found out I'm genetically predisposed to having celiac disease. My grandmother died of colon problems and my mom suffered from colon problems her entire life including having celiac disease symptoms although she would never get checked. I have all the symptoms of celiac disease except I'm morbidly obese. I lost 50 pounds on a gluten free diet before I realized that I had celiac. I just assumed it was from swimming a lot and doing a protein diet. When I went back on the gluten I gained tons of weight and am now morbidly obese. My entire life I literally suffered from these symptoms all being told if I just lost weight I'd feel better. I'm afraid to go to the Dr now because it's so expensive but the thought of them not listening to me again is very depressing and I just don't want to go through that anymore. I even broke my hip and tibia including 3  foot bones all because of this disease due to malabsorption. I had no idea I suffered so needlessly from this disease even in childhood. Anyway, now that I know for sure I started my first day gluten free and am just going to completely give up all wheat. 

Did you have the celiac blood panel? Please don't give up gluten again until you do so. Then you will truly be sure.

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