Gluten free, Celiac Disease and Weight

yaelis

Hello all.

I am hoping some of the members of this community will be able to relate to my experience. For some background, I have always struggled with my weight, despite eating healthy and working out regularly (I only eat refined sugar/food on my cheat day once-twice a week, I incorporate lots of fruits and veggies, protein, lots of water, and I do hot vinyasa yoga 2x week and run 3x week), I have chronic migraines, eczema, cold hands and feet, and often feel fatigued and have huge gaps in my memory.

I recently saw a new neurologist, and after a thorough interview, she had a series of blood tests taken. Thankfully she was the first health professional to really take me seriously. I came to her for migraines, but explained that I have had a lot of other health problems- and I couldn't get a solid answer regarding what I was dealing with and she agreed something wasn't right. I had a colonoscopy last year which was inconclusive, and my family has a robust history of cancer and thyroid conditions.

Long story short-er, the neurologist called and said I have antibodies positive for Celiac's, and may potentially have Celiac Disease, but I will need an endoscopy for a solid answer. At this time, after we consulted, I've agreed to first try a GF lifestyle/diet change and see if my symptoms begin to clear. I have no illusions about the challenge I will face, that it could take months to see change and how strict I need to be. I luckily live in a major metro area with lots of food options and do not plan to just rely on GF packaged food, but instead whole foods.

My question to this community is what were your experiences with going GF? Specifically, if you were/are overweight, did you find your NCGS or celiac diagnosis helped manage your weight? Did you find you had memory loss or cognitive challenges that got better? etc.

I also understand I need to clarify my diagnosis, but my doctor was 100% clear that no matter what, I should not eat gluten again. Whether celiac or NCGS, gluten is clearly causing trouble for my body.

I hope this is the right place to post- any insight would be fantastic. Thanks!

quietHiker

My boyfriend has a moderate diagnosis of celiac disease and can't eat any gluten. There's a group on here that I've joined that could be helpful to you: https://www.myfitnesspal.com/forums/show/129-gluten-free

Enigmatica

It's a bit of an adjustment but it's totally do-able and well worth it to eliminate gluten and other foods if your body is reacting badly to them. I can't have gluten or even the least bit of dairy without having a reaction. I recently tried a bit of butter again just out of curiosity and oh boy... MIGRAINE HELL. Turns out my body reacts to the proteins (not so much the lactose) in dairy as well as the protein (gluten) in wheat. So forget that noise. Nothing tastes as good as healthy feels!

spikeysmurf

I went GF about 10 months ago... I have to say that I not only feel better but look better.

I have a dermatological response to gluten, so I break out when I have it. Those breakouts usually last for a few days if not a week and can show up anywhere from 30 min to 10 days after eating gluten.

The hardest thing for me was finding power bars that tasted good and I could eat before / after my workout. QUEST seems to be the best so far. Also... read your labels... sometimes GF is not always better for you. I have seen instances where the GF version has up to 80 more calories than the non-GF version. The best thing to do... make it yourself. Subscribe to the GF living magazine.. they have great recipes AND Williams-Sonoma has a new cookbook for GF weekday cooking.

Maikana2

I have a lot of friends and family who went GF. It will be hard the first couple of weeks but you will get used to it and you will likely start feeling better soon after. Gluten stays in your body for a while so you have to be patient to see more permanent results.

One thing to consider is that the best course of action is to start with raw foods - lots of quinoa, brown and wild rice, beans, rather than going to GF prepackaged flour. Often times GF flours have high content of soy and soy slows down the thyroid. It is a major food to avoid if you are hypothyroid. I only say this because your family has a long history of thyroid problems and you are possibly predisposed. Given the weight issues, you will not have hyperthyroidism but might be predisposed to hypothyroidism.

You can of course have some soy in your food but most GF flours that I have seen have a lot of soy flour in them. Just something to be aware of. Plus eating raw foods that are complex carbs (quinoa, beans, wild rice) has tremendous health benefits.

Afura

I don't have celiacs, but I have a friend who has a gluten allergy (eats gluten her hands get splotchy red, feels puffy). I have my moments, but I am fairly gluten free, my worst moment was with a whole wheat hamburger bun (ughhhhh). The hardest part I've found is bread, as most GF bread tastes good, but does not always make a good vehicle for other items. With more and more people being diagnosed with celiac's, or at least a gluten sensitivity, there are lots of cookbooks and recipes available. Google is your friend.
Also, if you dine out, be careful, and be specific, even if you have to drill down to the list of ingredients, as there is hidden things in a lot of foods that you may not expect (sugar in salt, soy in chocolate, etc), don't feel embarassed about it either, just explain that you cannot have gluten.

hockey7fan

If you go GF now before having the endoscopy, you will not be able to have it later and get a proper diagnosis. Your doctor should have told you to have the endoscopy first and then start a GF diet when you get the results.

I was diagnosed with Celiac disease through a biopsy 6 years ago. I saw no weight loss results just from going GF. I still have to count calories and eat below a certain amount to lose weight.

UpEarly

We have lots of celiac disease in my family (father, siblings, aunt, uncles all have it), so I have a lot of experience with a gluten-free diet. It's so much easier to eat gluten free now than it was in the 80's and 90's! Newly diagnosed celiacs have lots of options for prepared food and can go out to eat and find gluten-free menus. It didn't used to be the case at all!

Also, I'm sorry to be the bearer of bad news, but most family members GAINED weight after their celiac diagnosis. Once they stopped eating gluten, their bodies started absorbing more nutrients. Also, alternative flours are often much higher calorie/fat than wheat.

So, no... I don't think going GF will help lose weight, but if you have celiac disease, going GF will make you feel a lot better!

cals83

I was a diagnosed in early 2012 and have been gluten free since. I didn't have normal Celiac symptoms though. I was tired all the time,had a lot of headaches, constantly getting sinus infections, joint pain...no digestion issues what so ever. My doctor was running blood tests for a few years trying to figure out what was wrong with me because I always had abnormal blood work...low potassium, low calcium, high levels of monoclonal antibodies. I was sent to an oncologist because my doctor was concerned that I might have a blood cancer like multiple myeloma or lymphoma based on my lab results.

Luckily for me, I got food poisoning over Thanksgiving in 2011 (who would ever say lucky they got food poisoning?) but it made my doctor start testing my igA antibodies and he noticed that they were higher every time so he sent me for the Celiac screening blood test which came back positive...then I started seeing a GI doctor and had the endoscopy to confirm.

So within a few weeks of going gluten free, the unexplained fatigue is gone, I stopped getting sinus infections, my allergies have gotten better, the joint pain is mostly gone...however I put on 15 pounds within 10 months and I feel sick to my stomach at least 2-3 times a week. I am probably getting cross contaminated from somewhere but my celiac panels keep coming back negative so at least I am better off now.

But just remember, if you have celiac once you go gluten free, you will become more and more sensitive to gluten. So if a waiter brings you a salad with croutons you have to send it back because if you pick them off, you will probably get sick from trace gluten left behind. It sucks.

willdob3

I don't have Celiac Disease but I do have wheat sensitivities. I've determined that by how I feel when eliminating it. I don't need any other testing.

I eliminated all grains & eat very few processed foods. By eliminating those foods I also end up gluten free. I've found that is the simplest way to make sure you are not eating any ingredients that can disagree with one's body. I feel much better eating this way & it really is pretty easy. The food is healthy & tastes good. Feeling so much better eliminates the desire to eat grains.

I do not recommend trying any gluten free products. Almost all of them contain other unhealthy ingredients. If you want bread-like foods you can easily make your own using almond meal, coconut flour and/or golden flax seed meal. There are many recipes online. I made something similar to Jorge Cruise's skinny muffins last summer but I soon found I really did not need them. I don't make them very often now. I like knowing I can make a healthy version if I really want to.

I sometimes use lettuce wraps for hand-held meals. I like large, tender, leaf lettuce as it is flexible & doesn't break as easily when rolling it around meat or a burger.

Eating this way won't automatically help with weight loss but feeling better makes it easier to be more active and it is great motivation to stick with healthy eating. That tends to lead to long-term weight loss.

yaelis

Thanks everyone for your helpful replies, I really appreciate it!

jillianmarie20

I was diagnosed with Celiac Disease in 2009, when I was 16...turned 17 two weeks later haha. I had a highly positive blood test, and a classically Celiac endoscopy - swollen, bumpy, red small intestine!

Before I was diagnosed, I was a bit overweight, about 155 lbs at 5'6". I was diagnosed because of my severe iron-deficient anemia and stomach cramps, and after I was diagnosed, I did not lose weight. I gained weight because I was depressed from the diagnosis and I always had a bad relationship with food. I ended up 19 at 175 lbs, but once I went to university, I lost 30 lbs from not being able to afford all my snacks :P

Now here I am, 137 and eating healthy and gluten free! Once I stopped eating so much, I was able to lose the weight and exercising helped to keep it off.

nobleammonite

I haven't been diagnosed with celiac disease, but when I cut gluten out of my diet I noticed I had drastically fewer headaches (I'd get... oh, two a week before and now maybe two a month) and my left knee that started bothering me when I started running was suddenly not a problem. Other than that, I haven't noticed anything - no change in energy level or digestive troubles. I suspect modern wheat, not gluten, may be my problem, because I seem to be able to handle spelt bread without a return of headaches/joint pain. Whereas if I eat something with wheat, I am 98% sure to have a headache the next morning.

Getting rid of gluten coincided with my getting in shape, so I'm not sure how much of an impact it had on my weight, but I don't try to replace the amount of bread and pasta I was eating before with gluten-free alternatives now. The fact that I was suddenly eating fewer carbs probably had a positive effect. I haven't made cookies/cakes/other such desserts for myself since getting rid of gluten either, so again: probable positive effect on weight loss. I save spelt bread, corn or brown rice pasta, and almond flour/brown rice flour pancakes for very special occasions.

I'm not extremely careful when I eat out, because very small amounts of gluten (like in soy sauce) don't give me much grief. I avoid it, certainly, but if an item doesn't have something I know contains wheat, I just go for it. I don't eat out that often though.

skinnydreams1997

i have celiac's disease and am also allergic to dairy. It seems to help me loose wieght cause most processed foods with that in them don't taste very good to me. My only weakness is this certain brand of glutten and dairy free brownies ( i forgot what they r called).

scookiemonster

1. You need to complete all of the Celiac testing before changing your diet, or it could affect the accuracy of the tests.

2. I found the switch to actually be pretty easy, to be honest. It's most complicated when eating out or at other people's houses, particularly with people who don't really understand what's involved. However, eating in the house, as long as you're willing to try some new foods, isn't really all that hard. Just be willing to look around at your supermarket options - I changed markets to one that has a better gluten free section. Also, I've spent time doing research on what restaurants I can eat at. I definitely put in an effort to patronize local places that make an effort to accommodate me kindly and knowledgeably, rather than some of the big chains that couldn't care less.

3. It hasn't helped me lose weight. Some of that is because the gluten free processed foods tend to be even higher in calories in than the regular kind, and while I cook mostly fresh foods, discovering that my local pizza place has a gluten free menu (and delivers!) has definitely slowed me down. However, don't count on going gf to help you lose weight in itself.

4. I do feel a lot healthier. I don't have Celiac, just a gluten intolerance, so it's less serious for me, but I had a lot of the same symptoms that you describe. In the last three months since I went gf, my migraines have mostly disappeared, my stomach is much less sensitive and doesn't bloat after I eat like it used to, my skin has cleared up big time, and I just generally feel much more energized. One of the first changes I noticed was how much more easily I could focus at work in the afternoons. It was kind of a shock to my system the first time I realized that it was 3pm and I'd just sat and focused for an extended period of time - I used to be totally useless by that time of the day. I feel so much more productive and focused lately, and less like I'm just dragging myself through life.

5. Within a week, I noticed changes. Be aware - the first week can be really hard. I had what can basically be described as withdrawal symptoms for about three days - horrible splitting headaches, felt sick - like when someone tries to cut out caffeine after having 10 cups a day or something - but about a week later I felt energized and my skin was clearing up. It can take months to fully get the gluten out of your system, but most people I've talked to have noticed a difference within a few weeks.

Basically, I don't think it's as hard as people think it will be. Once I realized how much better I feel, I don't really even want anything with gluten. How could I be tempted by something when I basically look at it and all I see is migraines and pimples? How is that appetizing? Honestly, the only time I've been tempted is when it's been hard to find food that's convenient and easy and I end up eating a bunless hamburger or something because it's all that's available.

Good luck! I think you'll be amazed how much of a difference it will make in your life and your general sense of well-being.

zommersmcpants

I was diagnosed with Celiac 4 weeks ago, and since have lost 11 lbs. I have been "obese" at 254 lbs and holding for roughly four and a half years, despite being quite active, getting a personal trainer, and being on a meal plan. I am now 243 lbs, literally about four weeks after going GF. Both my psychiatrist and my doctor were blown away by this. For the first two weeks it was slow, at about two pounds per week. The last two weeks have been three lbs a week. I am actually scared that at this rate I may become ill from these dramatic results.

Missjulesdid

I do not have celiac.. I do not adhere to STRICT GF eating.

I DO however avoid all obvious sources of wheat due to autoimmune issues I have.

I had migraines (at least weekly or MORE), hypoactive thyroid, acid reflux, tenitius, frequent bouts of vertigo and rheumatoid arthritis. I was a MESS!

I did a 30 day juice fast and felt like a new woman so I knew that my problems were all diet related. I added back in foods and my problems returned.. So I did an elimination diet and was convinced that my problems must be from dairy. I was preparing myself to give up yogurt and cheese for EVER. Imagine my shock and horror when I discovered that my beloved WHEAT was the root of my problems?!?! I would sometimes eat cracked wheat porridge for breakfast, homemade whole wheat flour tortillas with lunch. and then a nice serving of cous cous for dinner. I LOVE wheat and everything made from it And I was eating mostly whole grain wheat.. Healthy, right?

Since giving up wheat and before I even started losing weight: Thyroid returned to normal and no more synthroid, acid reflux is completely gone so no more medication for that, I haven't had even ONE migraine so no more meds for that, I still have tenitius, but it's reduced. I haven't had any vertigo and the BEST part is, my joint pain is reduced by at least 80% I do still have some pain in my knees, but it's NOTHING compared to what it was.

I also eat very few cereal grains in general and avoid most "gluten free" substitute products like GF pasta or GF pizza crusts. I'll eat them on occasion, but I treat it as a special treat and not as an ordinary part of my way of eating.

Even if your celiac results come back NEGATIVE, you still MIGHT benefit from GF or Wheat Free eating.

Slippyslope

Going through the same thing. Will come back later to read more when I have time.

madieland

I too have just been diagnosed with exactly the same thing. I had the constant weight gain, gluten antibodies attacking my thyroid, memory loss, severe exhaustion, etc. I have been gluten free for 4 weeks and I can't begin to tell you the difference I feel. Because of the large weight gain in a short amount of time I also acquired "fatty liver disease" that I am working on repairing. Just the ability to get through the day with a normal amount of energy has been a blessing!

ComingUntrue

Please thoroughly test for lyme disease and all tick borne co-infections. Have you ever had a tick bite? Even if not, please research chronic lyme. Check out the documentary Under Our Skin (free on youtube).

I found out i have lyme and several co-infections last spring (20 yrs misdiagnosed). I have a lot of health problems.

I am not allergic, but i am definitely sensitive to gluten. Lymies are supposed to eat gluten and dairy free. I put my weight loss goals on the back burner when i got my proper diagnosis. Did a year+ of aggressive treatment just to spiral further downhill. My gut was so screwed up that my doc and i just decided to stop treating. My weight had reached an insane high of 401. So on June 2nd i stopped meds and went back to eating Paleo/Primal. This is literally the only way i can even function, walk, have any quality of life.

I've lost weight, i can do so much more. Speaking specifically about gluten for me, eliminating it makes me think clearer, i don't feel tired after eating, i don't have bloating and my belly is remarkably flatter.

jenilla1

I didn't lose any weight going GF. (I was actually under my goal a little from being sick all the time.) Even though I didn't lose a single pound, I did go from a tight size 8 to a loose size 6 pants a couple of weeks after going GF. All the bloating went away and I got my flat stomach, LOL.

I don't do GF for the flat stomach, though. I do it because after over a decade of unexplained nausea, pain and vomiting out both ends after eating, I'm tired of being sick. Amazing difference - so grateful I finally found a doctor who knew what to do. It took a few weeks for all my symptoms to settle. I've been GF for a few years now. GF is inconvenient, but sooo worth it if it's a health issue. If it's just for weight loss, don't bother. :flowerforyou:

P.S. I cook most of my food from scratch, so it hasn't been at all expensive to go GF. I don't waste my money on processed GF stuff. I make my own flour blends for baking and cooking, and the only GF food I buy is pasta.

ETA: OP asked about brain/cognitive issues, like concentration and memory. I was super fatigued all the time and I have to say not so sharp in the brain. I also developed an anxiety disorder over the years (which has improved since going GF) because I never knew why, how or when I was going to be violently ill. :sick: