Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Scared


Scaredandworried87

Recommended Posts

Scaredandworried87 Newbie

im not a diagnosed celiac but i have been developing problems that fit the bill, just last week i got my blood test results and now the doctor wants an upper endoscopy, i was prepared to go gluten free and help my self get healthy in fact im avoiding already breads and watching products that have gluten, but now that i've read that when you go gluten free you will gain weight it nearly drove me to tears i was a skinny kid all my life and had gained 200 pounds from the ages of 19-21, lost the weight (nearly 80 lbs) mostly from what i thought was hard work diet and exercise. im so scared because the thought of being my old self i couldn't stand it please someone help me....


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



luvs2eat Collaborator

Don't be scared! No everyone gains weight. Some gain a little... some of the weight they lost... and they're really happy about it. I did gain weight, but it was MY fault... not my gluten-free diet's fault. I ate too much. I filled up on breads and pastas that I COULD have to make up (in my mind) for all the things I could no longer have. I didn't eat lots of fresh veggies and fruits. I've changed my diet to bring back on those fresh things and have lost 20 of the 40 pounds I'd like to lose.

You've lost a pretty significant amount of weight (80 lbs), so you KNOW how to eat healthy. Continuing to eat healthy and not OVERDOSING on the gluten free carbs... which often have a higher glycemic index than other things... will help you maintain your awesome weight loss.

lilbit Apprentice

im not a diagnosed celiac but i have been developing problems that fit the bill, just last week i got my blood test results and now the doctor wants an upper endoscopy, i was prepared to go gluten free and help my self get healthy in fact im avoiding already breads and watching products that have gluten, but now that i've read that when you go gluten free you will gain weight it nearly drove me to tears i was a skinny kid all my life and had gained 200 pounds from the ages of 19-21, lost the weight (nearly 80 lbs) mostly from what i thought was hard work diet and exercise. im so scared because the thought of being my old self i couldn't stand it please someone help me....

I'm going through the testing for Celiac right now... I've had a CT, colonoscopy and next week is the upper endo. I had never even heard of Celiac until a few weeks ago! I haven't been diagnosed yet, but the doctor is pretty sure that's where we are headed and I just had to respond to you because 10 years ago I went through a crazy weight gain I could've written your post back then: I was incredibly thin til I hit about 25 (I weighed 95 pounds!) and I gained 80 pounds in a very short time. At the time the doctors all treated me like I was an insane liar. I have stretch marks all over my body from gaining the weight so fast...

I practically starved myself and excerised like a crazy person to get it off and finally got down to 140- it took forever :)

Then about two years ago I started having GI symptoms and I was exhausted all the time. The docs told me i was just getting old!

So now it looks like I'm finally headed for a diagnosis... and while online looking for info on this disease I found an interesting article about celiac and weight gain... Maybe it will give you a little hope... it did for me :)

Open Original Shared Link

conniebky Collaborator

I hate to sound like one of "those" girls, but I have lost weight since going gluten-free. I've lost 2.5 pounds in two weeks. I'm not a celiac, at least not a DX'd one, but this going gluten-free has literally forced me to eat better, so it's been a positive thing for me and I hope it will be for you, too. :)

MagpieWrites Rookie

Hon, if it helps at all - I walked into the scope testing a size 18/20.

A year later?

My closet is all sizes 10 & 12's. I've lost over 90 pounds and I can honestly say it isn't from trying all that hard. You'll do fine. Even my NON-celiac husband has had about 30+ pounds slide off him this year and the biggest change has been to gluten free.

Some small advice that might help? I don't buy gluten-free convenience items much (I'll pick up a bag of pasta once a month, if I'm traveling I might pick up some glutino's pretzels for the car - but not a whole heck of a lot else) and that has made a HUGE difference. Lots of fresh fruits, veggies, meats. Rice, learning about new grains like millet and quinoa and sweet potatoes too. If I want bread, cookies, pasta - I make them. Which, 1... means I eat a bit less of it than I did (pasta isn't hard to make, but it does take time. When I know that it's a three hour job and than there is still the mess to clean up after - it no longer is a 4 times a week meal option! :D ) AND I know everything that has gone into it. I also think that since I don't really get any HFCS anymore into our diets really helps.

And remember - as you go gluten free you'll FEEL better. For the first time in my life, I feel GOOD. I'm running these days (something I never ever thought I would do unless someone with a chainsaw was behind me!) getting into sports (at 30! So very weird! :P ) and just 100 times more active than I ever was when I was ill for so long. THAT helps too!

You have another bonus - you're finding out in the beginning of summer. Right now there is a bounty of healthy goodies you can eat with minimal work or fuss... so you can slide into cooking slowly. I honestly think I've already eaten my weight in strawberries this spring (cut up strawberries, a chopped up mango, a few blackberries, a splash of orange juice and a spoonful of some orange simple syrup all whizzed together in the blender and frozen in popsickle form? Oh dear heavens! It is so GOOD. And been my lunches most of this hot week!)

So. Eat real foods - stay far far away from the gluten-free frozen and canned items (honestly, most are nasty and many are merely "meh"), as you start to feel better MOVE, and don't stress yourself out. You are going to be fine, promise.

Looking for answers Contributor

Hi,

Before going gluten free I struggled to keep weight off, I was between a size 10-12 then. Today, I'm a healthy size 0-2. I found that having my body in a state of chaos caused by gluten (and dairy, nuts for me as well), actually caused me to keep weight on. I will warn against eating the gluten-free processed foods. Like all processed foods, they have little nutritional value and a lot of carbs and little fiber. I switched my diet to whole, organic foods, mostly, and weight hasn't been an issue since. So, don't worry. Just choose your foods wisely, take a GOOD multi-vitamin (I take an isotonic one because of my inability to absorb pills) and don

starrytrekchic Apprentice

Hi, nothing to worry about as long as your sensible with what you eat (your replacement foods.)

I also gained a lot of weight in my 20s, fought it off, then went gluten free. And since being gluten free my weight has finally stabilized.

I think the people who gain weight gluten free tend to be either those who needed to or those who try direct substitutes in the diet (gluten-free alternatives to things like cookies are more calorie heavy than the gluten types.)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GlutenFreeManna Rising Star

I lost 20 lbs in the first 2 months without even trying to. I didn't replace my breads and pasta at first I just eliminated them and ate what I could--veggies, lean meats and some fruit. Once I started trying new flours for baking and a few replacements here and there I did notice my weight loss stopped, but I have not gained any of the weight back. Probably because I'm still scared to try too many replacements. If you eat healthy--mostly veggies and lean meats you'll be fine!

Scaredandworried87 Newbie

ok well this weekend im going grocery shopping so short of making my own bread is there any brand thats healthy to eat or am i just doomed to never having any bread or pasta period this also makes it harder for me because i work second shift as a security guard and never have any time to plan my dinners correction would it help if i brought breads from a bakery like sweet christines or a gluten friendly bakery

Skylark Collaborator

Don't be scared. I know someone who was 200+ lbs. and doctors said she couldn't be celiac despite her IBS and anemia. She finally found a doctor who would test her and it turned out she was celiac with a positive biopsy. She went off gluten, and stopped being hungry all the time because her body could absorb nutrition from food again. She dropped 60 lbs. without even trying.

I lost a few pounds going gluten-free myself, mostly because I love cookies too much. The gluten-free ones are expensive enough that I am not inclined to buy them often. It helped me break a bad habit. B)

ravenwoodglass Mentor

First off Please Don't go Gluten Free yet as that will ensure you have a false negative endoscopy. IF you are already gluten free or gluten light do keep that in mind as far as the results go. False negatives are all too common even on a full gluten diet.

As to the weight issue not everyone gains weight. I was at the heaviest I ever was in my life, including during my pregnancys the couple of years before I was finally diagnosed. I am a very small person and my normal weight had always been around 98 lbs and a size 3 since highschool. Then the last two years of my illness I balloned to the point where I was about a size 12. I lost enough weight to easily fit into a size six within a month of being gluten-free even though I was eating more daily than I had in years. I even lost a full shoe size, nothing like an excuse for buying new cloths and shoes. LOL. Not everyone gains weight and for some of us a lot of the weight is bloat.

You lost a great deal and you just need to keep going and eating what your body needs. Lots of veggies, fruits, good protein etc. You will be fine if you don't load up on gluten free goodies all the time. A nice piece of gluten free chocolate cake or a cookie or ice cream once in a while is good but eating goodies daily isn't. But I think you know that already. Relax about the weight issue, you should be fine in that area.

sb2178 Enthusiast

Breads and pastas tend to be more expensive (the brown rice pasta I like ranges from $3.00 on sale to $4.00 at the expensive store-- waay more than the $0.89/box I used to buy). Reviews of gluten free bread seem to generally indicate it's better toasted and not real wonderful for sandwiches that are in packed lunches. I haven't splurged-- hard to find and pricey. I'd recommend switching to rice and sweet potatoes. Either bake a whole bunch of sweet potatoes ahead of time in the oven or make a pot of rice and then take that plus your sandwich fillings. And a fork. Check out the cooking page for the lunch idea thread. A lot of people do sandwich fillings wrapped up in lettuce, and take a bean salad or fruit for carbs.

You'll be fine. It's doable, but takes more thought than most of us want to spend in the beginning. And, you'll hopefully feel better after going without. But, like responder above said, talk to your dr. about how much gluten they want you to eat pre- endoscopy.

People here are always very responsive to questions.

Scaredandworried87 Newbie

so should i go back to eating bread slowly ive been gluten free for about a week now i also see the doctor tuesday

SGWhiskers Collaborator

I was 2 lbs from being officially underweight before I went gluten-free. Yes, I've gained 20 lbs, but I'm now right in the middle of where my BMI should be. The weight came on when I hit the must eat nonstop phase. My attitude about it was that I would eat the healthiest most nutrient rich foods for two years and if I gained weight, then my body must have needed it. After one year, my body plateaued at only 20 lbs gained. Surprisingly, since my belly flattened out and my face, hands and feet were less puffy, I only gained between one and two dress sizes. My appetite has leveled off to a normal point and I now allow myself one boxed mix of gluten-free baked goods/month. I'm feeling better and getting more activity. My cholesterol dropped 50 points without trying. I'm now shedding 5-7 lbs without trying because I eat super healthy. Fruits are my snacks. I got to buy all new shoes because the edema from being sick had made my feet swell to a larger size for 10 years. My clothes fit better than ever and I'm getting to go clothes shopping now because my pants are droopy. (My old skinny jeans are still too tight, but I bought them when I was dangerously sick and nearly passing out daily from the malnutrition).

So my point is that while some of us may gain weight, with nutrient rich eating, the body balances out after time. Just avoid the empty calories and you will be all the better for the gluten-free diet. Home cooking without all the preservatives is the healthiest diet your body could ask for.

GlutenFreeManna Rising Star

ok well this weekend im going grocery shopping so short of making my own bread is there any brand thats healthy to eat or am i just doomed to never having any bread or pasta period this also makes it harder for me because i work second shift as a security guard and never have any time to plan my dinners correction would it help if i brought breads from a bakery like sweet christines or a gluten friendly bakery

I know this is so hard to take, but it's best if you start to look at bread and pasta as a treat you have every once in a while instead of a staple of your diet. There are gluten free breads and pastas out there that are good, but they will not be what you are used to. They are also expensive, much more expensive than regular gluten food. Finally gluten-free baked goods are usually higher in carbs than non-gluten free. If you want to lose weight you don't want to eat gluten-free bread for every meal.

so should i go back to eating bread slowly ive been gluten free for about a week now i also see the doctor tuesday

If you still have additional testing you want to hold off of going gluten free until the testing is done. You can get a false negative if you have been gluten free for too long. For some people the test results are inconclusive no mater what they've had to eat and the best test is to give up gluten and see how they feel.

rnbwdiva Newbie

ok well this weekend im going grocery shopping so short of making my own bread is there any brand thats healthy to eat or am i just doomed to never having any bread or pasta period this also makes it harder for me because i work second shift as a security guard and never have any time to plan my dinners correction would it help if i brought breads from a bakery like sweet christines or a gluten friendly bakery

As others have mentioned, your biopsy will not yield anything if you have been gluten free. But here are some tips for when/if you do finally switch over.

If you have a Trader Joe's in reasonable distance, print out a list from their web sites of products that are gluten free and high light what you think you might be interested in. Take it with you and allow time to browse. It takes a while, but you get into a new rhythm and routine and their rice pasta will ease you in the transition. :D

Find a fantastic vegan cookbook, like Veganomicon. Not all of the meals are gluten free, but you can easily substitute. The food in that book is so amazing that you will not be thinking at all about the things you can't have. It has amazing tips for vegetable preparation, and whether or not you eat meat or dairy, this will help you a great deal in figuring out a balanced diet.

Figure out a rhythm for food preparation that works for you, and if you can't cook well every day, make sure you stock the fridge with great left overs so you can snack on the balanced meals rather than food prepared by others.

Lastly, the reason most of us gain weight, I think, is because it takes so long to get diagnosed and many of us are eating and eating and eating and absorbing absolutely nothing while the doctors are telling us we are perfectly fine. We are skeletons by the time we are diagnosed, and after a half a year or so, many of us can suddenly absorb the nutrients in the food and we have to drastically change our habits.

Good luck!

DownWithGluten Explorer

im not a diagnosed celiac but i have been developing problems that fit the bill, just last week i got my blood test results and now the doctor wants an upper endoscopy, i was prepared to go gluten free and help my self get healthy in fact im avoiding already breads and watching products that have gluten, but now that i've read that when you go gluten free you will gain weight it nearly drove me to tears i was a skinny kid all my life and had gained 200 pounds from the ages of 19-21, lost the weight (nearly 80 lbs) mostly from what i thought was hard work diet and exercise. im so scared because the thought of being my old self i couldn't stand it please someone help me....

I was skinny and got skinnier after going gluten free. I think because the amount of food available for me to eat (conveniently) was reduced drastically. No more picking up a random cookie from Au Bon Pain, or some nice yummy convenient food somewhere else. It restricts your freedom to eat a lot of the stuff you might have been used to before.

The only thing that's made me gain weight ever in my life is birth control. I swear I was at 100 for the past 8 years and finally gained weight with birth control. Anyway, the gluten or no gluten didn't seem to be a cause.

Northern Celiac Newbie

so should i go back to eating bread slowly ive been gluten free for about a week now i also see the doctor tuesday

no

not unless ur doctor says. also there are lots of choices for gluten free pasta and breads.Big thing with gluten-free pasta, you can't over cook it or it turns to mush. don't worry you will survive. We all did!

AND REMEMBER YOU ARE NEVER ALONE.

Best regards

Mike

ravenwoodglass Mentor

no

not unless ur doctor says. also there are lots of choices for gluten free pasta and breads.Big thing with gluten-free pasta, you can't over cook it or it turns to mush. don't worry you will survive. We all did!

AND REMEMBER YOU ARE NEVER ALONE.

Best regards

Mike

Mike, you may have missed it but she is not done with testing yet. We need to be eating gluten for testing to have any chance at being accurate. After testing is done then she can immediately go to a trial of the diet.

Scaredandworried87 Newbie

Mike, you may have missed it but she is not done with testing yet. We need to be eating gluten for testing to have any chance at being accurate. After testing is done then she can immediately go to a trial of the diet.

i probably should have mentioned im a guy B-) i know it seems girly me worrying about my weight but i want to really thank all you for helping me out btw my symptoms gluten wise is perodical bouts of depression and bloating, sometimes i get abdominal pain, other times excessive flatuence, i wakeup too early and i have lactose intolerance (not as bad with cheeses, just pure milk)

Jestgar Rising Star

Caring about your health is not silly, but it does seem to be more of a girl thing. :P I'm glad you are one of the enlightened men who choose to take action, rather than try to 'tough it out'.

stef-the-kicking-cuty Enthusiast

I'm sure, you will do fine. Most of the people, who gained some weight, were underweight to begin with and just bounced back to their "normal" weight after diagnosis. And most of the people, who were overweight, got some pounds off.

Yes, you should also keep eating gluten, until you're done with testing. If the test should be negative for one reason or another, it could still be positive. Some people test negative, even though, they still have celiac. There is also a labaratory available online, where you can even test, when you've been off gluten for a while. It's called Enterolab. You'll find it at www.enterolab.com , just in case.

Good luck, Stephanie

Scaredandworried87 Newbie

so i am also reading about how people are allergic to other things like soy and vegatables and other thing right now im so worried about what i can and can't eat i could handle going breadless but to me it feels like if i go gluten free it will end up revealing other allergies im a security guard i can't afford buying all the other things and i live in a hick town i might as well just drink myself to death

Jestgar Rising Star

If gluten is your issue and you don't go gluten-free you may end up so sick you can't work. You don't have to buy weird food, just eat meat and veggies.

lucia Enthusiast

Like everyone else has said, it's *good news* for your body that you are now forced to eat whole foods rather than processed stuff!

I agree that you'll need to find alternatives to bread and pasta. In addition to rice and potatos, don't forget about quinoa (called a "perfect grain" by nutritionists), polenta, and grits. I've discovered polenta rolls that come like sausages. You can just cut off a piece and add to the bottom of a bowl and fill with hot soup, or you can just sautee a piece in a pan with a little garlic. Also, I find myself cooking up wild rice these days as a special treat. Apparently, there are many different kinds of rice! And I'm experimenting with Asian rice noodles as an alternative to soba or pasta.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,265
    • Most Online (within 30 mins)
      7,748

    Barbora
    Newest Member
    Barbora
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs.
    • trents
      Yes, I can imagine. My celiac journey started with a rejection of a blood donation by the Red Cross when I was 37 because of elevated liver enzymes. I wasn't a drinker and my family doctor checked me for hepatitis and I was not overweight. No answers. I thought no more about it until six years later when I landed a job in a healthcare setting where I got annual CMP screenings as part of my benefits. The liver enzymes were continually elevated and creeping up every year, though they were never super high. My primary care doc had no clue. I got really worried as your liver is pretty important. I finally made an appointment with a GI doc myself and the first thing he did was test me for celiac disease. I was positive. That was in about 1996. After going on a gluten-free diet for three months the liver enzymes were back in normal range. Another lab that had gotten out of whack that has not returned to normal is albumin/total protein which are always a little on the low side. I don't know what that's about, if it's related to the liver or something else like leaky gut syndrome. But my doctors don't seem to be worried about it. One thing to realize is that celiac disease can onset at any stage of life. There is a genetic component but there is also an epigenetic component. That is, the genetic component is not deterministic. It only provides the potential. There needs also to be some health or environmental stressor to activate the latent gene potential. About 40% of the population have the genetic potential to develop celiac disease but only about 1% actually do.
    • cristiana
      Hello @Heather Hill You are most welcome.  As a longstanding member and now mod of the forum, I am ashamed to say I find numbers and figures very confusing, so I rarely stray into the realms of explaining markers. (I've self-diagnosed myself with dyscalculia!)  So I will leave that to @Scott Adams or another person. However as a British person myself I quite understand that the process with the NHS can take rather a long time.  But just as you made a concerted effort to eat gluten before your blood test, I'd advise doing the same with eating gluten before a biopsy, in order to show if you are reacting to gluten.  It might be worth contacting the hospital or your GPs secretary to find out if they know what the current waiting time is. Here is a page from Coeliac UK about the current NHS recommendations. https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/#:~:text=If you remove or reduce,least six weeks before testing. Cristiana  
    • MI-Hoosier
      Thanks again. My mom was diagnosed over 50 years ago with celiac so grew up watching her deal with the challenges of food. I have been tested a few times prior due to this but these results have me a bit stunned. I have a liver disease that has advanced rapidly with no symptoms and an allergy that could be a contributing factor that had no symptoms. I guess I’ll call it lucky my Dr ordered a rescreen of a liver ultrasound from 5 years ago that triggered this or I would likely have tripped into cirrhosis. It’s all pretty jarring.
    • Heather Hill
      Many thanks for your responses, much appreciated.  The tests did include tTg IgA and all the other markers mentioned.  I also had sufficient total IgA so if I'm reading the Mayo clinic thing correctly, I didn't really need the anti-deaminated gliadin marker? So, if I am reading the information correctly do I conclude that as all the other markers including tTg IgA and DGP IgG and tTg IgG and EMA IgA are all negative, then the positive result for the immune response to gliadin, on it's own, is more likely to suggest some other problem in the gut rather than Coeliac disease? Until I have a view from the medics (NHS UK) then I think I will concentrate on trying to lower chronic inflammation and mend leaky gut, using L glutamine and maybe collagen powder. Thank you for your help so far.  I will get back in touch once I have a response, which sadly can take quite a long time.   Kindest Heather Hill 
×
×
  • Create New...