Going gluten free, what was the first couple of weeks like for you?

Hello I'm new here.. and had some questions about your experience with having a gluten sensitivity. So I have recently been put on a gluten free diet. When I say recently I mean, last week. I am still pretty young, only in my early twenties. My Doctor told me that I have had problems with my stomach since I was a baby, as early as a couple weeks old. Including constipation, extreme bloating, cramping and at one point even bleeding, About 7 years ago, my Sophomore year of high school I had my first colonoscopy due to pain and bleeding. They found three very small polyps and a tear in my intestines, (they never followed up with those and didn't act concerned about either one...) At the time, and really up until last year I was eating extremely crappy foods and experiencing really crappy symptoms. I have pain, extremely bloated in my mid section, cramping, anemia, unable to lose weight, unexpected weight gain, and many other things. But for some reason my doctor had never suggested celiac or gluten sensitivity until two weeks ago. I have been attempting to lose weight, I actually lost about 30 (yay!) but decided it was time for a good ole cheat day from my diet which was mainly salads and grilled chicken. Was sitting eating me a nice warm slice of pizza and enjoying life, BUT not even an hour or so later. I was in crippling pain. It was so bad I thought maybe I was having an ovarian cyst rupture (which I have had before.) We headed to the hospital and what do you know, three ultrasounds later... it wasn't a cyst at all, it was my intestines. I was so bloated, thats literally an understatement, I weighed 10 lbs heavier then I did the night before and was about 8inches bigger around my mid section. They said my intestines were extremely inflamed, they were really concerned and ordered blood work. The ER doctor suspected celiac right away with my history (wondering why my doctor that I have had my whole life didn't catch this). Blood work came back, It wasn't celiac, thank god, but he told me I was sensitive to gluten. Im still scheduled to also see a GI specialist for crohn's disease and ulcerative colitis.

That being said... This week is my first week completely off of gluten. The first couple of days seemed better. Honestly I don't know if it was all in my head but I felt thinner, more awake and alert and happy... but the last two days not so much. I started feeling constipated and crampy after eating my food. Granted it's not as bad as normal but still uncomfortable and painful. So I made this post.. Was wondering how everyone else's experience is going with no gluten. Were you like me, does it get worse then better? When will I lose this bloated belly? What differences did you notice? any suggestions?

35 Replies

  • Go on an elimination diet and proceed from there. I went on one and three years later, after eliminating gluten, discovered I could eat organic wheat symptom free. It's the chemicals in domestic wheat that makes me sick. Anyway, your journey is your own. But if you ignore the issues it will only get worse.

    Also. You are no longer dieting. You are due a lifestyle change. Kiss crappy food goodbye.

  • Wow! That is crazy, 3 years to find out you can have organic wheat. Thanks for the advice, it's a lifestyle change not a diet... I like that

  • Hi Shianne328?

    You have had quite a time of it!

    Were you eating a broadly gluten-free diet when you had the blood test? If so it may read a false negative for Coeliac Disease (Celiac to you in the USA) because your blood antibodies to gluten would drop. In the UK, we are told to eat gluten every day for 6 weeks prior to the blood test to prevent this.

    Your feeling better is likely to be real. Gluten can cause brain fog; and as you have found to your cost, bloating (as well as many other things such as nutrient deficiencies).

    Now is the time to go hunting for hidden gluten in your diet and cross contamination issues. Have you been drinking cola? Check which brands are gluten-free. In the U.K. we can safety drink Pepsi and Coke Cola. Have you eaten soup or a stew - were the stock cubes gluten free? Have you put gluten free bread in your normal toaster? People who need to be gluten free for medical reasons normally buy a new toaster to prevent cross contamination. Have you replaced your wooden spoons, sieves and colander/strainer etc? Have you got your own jams (jellies) and spreads – sharing can be risky. All these things will have an affect on your health.

    I started noticing that I was feeling less bloated and more alert around a week after being gluten-free. However I gradually discovered that I had a sensitivity to dairy (which is quite common) and it was causing me to still have symptoms. For a while I also had to stop eating eggs, because they were also causing stomach issues.

    Hope this helps.

  • wow thank you this did help! I had no idea about the soda... although I barely drink it, I am glad to know that I also have to look there. I also didn't think of any of the spoons, toasters and other kitchen things. Wow this is actually pretty depressing. That's a lot of big changes. When I got the blood test I hadn't really been eating because of how bloated my stomach was. But I heard it takes a while for gluten to leave your system, so my diet did consist of gluten at the time. How do I know how sensitive I am? Even something as small as cross contamination would hurt me? I definitely will be happy when my symptoms finally start to subside! I downloaded an app it's called gluten free scanner and if you scan the barcode of products it will tell you if it contains gluten and i have been using that a lot!!

  • The other thing is that it may not just be gluten. All the grass family produce proteins that are very similar to gluten (called gliadins collectively) and so it is a good idea to cut out all grains to start with. The only one I can eat is rice.

    And those ready made gluten free breads are just junk food, full of sugar, refined carbs and chemicals! Keep away! And as a general rule ready made foods are bad news, so it is best to avoid them while you are sorting yourself out. After that you should be able to have the occasional treat.

    Start by eating only meat/fish/veg and fruit and see if you improve with that. There are certain fruits that upset some people too, but I'd not worry about them unless you have to. Breakfast is the challenge - I usually eat leftovers, or eggs scrambled with whatever veg I have (you can buy frozen spinach here which is very useful!)

    Once you are feeling better you can try introducing foods one at a time. Its a long process, but worth doing to feel well - and there is no real short cut. Blood tests etc do not really work.

  • Wow this is just such a lifestyle change. Thank you for your suggestion! I have a lot to plan for and think about.

  • Its not that bad once you have adjusted. For a while I had to make detailed meal plans and shopping lists. I did stop being picky about what I ate, if it was allowed I ate it, and discovered that I quite liked things that I had taken against for some reason in the past.

    Do look at parasites and candida, if they are involved you might well find there are things you thought you could never eat again, that become OK again.

  • One good thing about me is, I am not a picky eater and normally will try anything. Today I did try a gluten free pizza though and it was made with the UDI's Pizza crust.... Craving pizza and not being a picky eater I will say it did not hit the spot for me. I can't explain what was so different about it. So it kind of scares me that I won't like some things. But I have started doing what you said and made a really detailed meal plan!

  • Hi,

    Cross contamination can definitely hurt you. Going gluten-free isn't always a quick fix. It takes time to figure things out, including how sensitive you will be.

    The app sounds like a good idea; however do also check labels! That way you will gain first hand experience in knowing what you can eat and what you can't.

    You are always going to be safer eating at home. Things like rice, potatoes, plain meat, fruit, vegetables, salad (watch out for the croutons and salad dressings!) and unseasoned nuts are almost always safe to eat.

    Be aware of eating fries when out. The oil that they are fried in is often used for other foods containing gluten. I always carry snack food in my handbag just in case I can't find anything more suitable to eat.

    It takes practice being gluten-free and it is certainly a lifestyle change. Be kind on yourself until you get used to the changes and don't give up - it's worth it in the end.

  • You just don't realize how many things have gluten until you can't eat it. Like salad dressings I would've probably over looked. Thank you! I will definitely keep it up because I want to feel better. It's just shocking what all goes into it. Especially because I'm used to eating a lot and now Idk what to eat so I'm just so hungry 😭

  • I feel your pain. I am 50 and only been gluten free for the past 2 years. As well as you I went through my childhood and teens with problems. The flare up when I was enjoying pies and cakes. Things seemed to settle slightly when I had my children but flared up when I had pasta nights with my daughter. I can recall all the bad times now and know what I was eating around that time. The last flare up was when I started the job I'm in now 7 years ago where there is always a good supply of biscuits n cakes. Impacted bowel. To cut it short tho i didn't realise how many foods sauces etc have gluten so I did mess up at the big inning a few times. So please read everything. Go back to the very basics and another thing I have just learned about is my lack of fibre another big part of my problem. I'm taking lepicol daily. Increased fruit and veg. Not eating as much red meat but this I have to be careful with due to my iron levels. Please look up the lepicol info. It does give some good advice with regards to digestive issues and good look at least you have hopefully solved your problem early xx

  • Thank you so much! I agree you just don't realize that so many things have gluten!! You sound like me, I didn't think anything of it after pasta nights and cakes but now I realize. I'm trying to carefully read everything. I'm getting a tad overwhelmed but I'll get through it!

  • It certainly is a challenge. I've been dairy free for two years which was hugely difficult for me since I ate cheese with virtually everything but I've adapted reasonably well. I've recently been told I have a gluten sensitivity and I am finding the exclusion diet really, really hard. However when I slipped up a couple of weeks and ate something that turned out to have gluten in it and I passed out on the loo from the pain, I've decided toreally engage in this lifestyle change. I object to walking round with black eyes and big lumps on my head. Reading your post has helped put me in a more positive frame of mind so I thank you and wish you all the best. Nicki x

  • Oh wow thank you! I wish you the best as well! I think at this point I am ready to stop feeling crappy... even if it means giving up my love for wonderful crappy foods. I hope you get yours all figured out Nicki :)

  • The polyps and ovarian cysts are an alert to excess insulin/IGF-1. If you can tolerate them, eat low Gi carbs glycemicindex.com such as lentils, beans from dry, peas, barely-ripe banana, quinoa or bulgur wheat, but get most of your carbs from above ground, non-starchy vegetables. Less than 40g carbs for each of three meals per day phcuk.org/wp-content/upload... .

    Have a little protein at most meals, but not too much (maybe 3/4 palm size). Get the bulk of your energy from natural fat phcuk.org/healthy-eating-gu... .

  • So it's from too much insulin?? I will actually try this thank you!!

  • But not the bulgar wheat as it isn't gluten free!

  • Bulgar wheat isn't gluten free.

  • shianne328

    Hi, I am sorry your going through all this. Yes you sound alot like me. I am new also and have gotten alot good advice and answers on here. I would say the first thing you need to do is follow up with either a new Dr. or the same, but definitely find out about the polyps and tear. Did they remove and fix the tear? Your stomach issues sound exactly like mine love pain bloating one day can be down within the next year huge bellies popping right out. I was put on some medication to help with bloating and it also helps with the pain. It is not a pain medication but it just helps with the pain because it's kind of stops the bloating. I would ask about that and I would also ask if they thought maybe you should be retested for celiacs. It really sounds like while you were eating the chicken and veggies though stay away from gluten that you were doing better. Like I said I am new on here so maybe some of them people who have been on here longer good no more. If you have any other questions or anything I will try to do the best I can to help. I know that some of the other people I'm here are very good and know a lot more about it than I do. But I will help in any way I can. I know what it's like it's terrible it hurts you just don't understand why or what is happening. I have seen a big difference since I am gluten-free. I am also lactose free... sorry could not help more.

  • Wow thank you so much! I will look into the bloating medicine ASAP, I have an appointment with a GI October 31st I am going to mention the polyps again and see what they say. Also you helped a lot. Thanks for replying and joining in on my post. I'm heading up on week two of being gluten free and so far besides the random cramping I'm still getting I think I'm feeling better I've lost ten lbs just these last two weeks and I think it's because I'm not as bloated. I wonder if the cramps are from not being as thorough with my gluten checking or if my body is readjusting? Thanks for your help!

  • Hello Shianne, I'm sorry you have beenthrough so much for so long. I have had much the same symptoms as you for the past couple of years and had various scans and tests which found a small hyetus hernia. This yeay the symptoms got worsr and as I am a type 1diabetic my diabetic consultant decided I should have a celiac test. For some reason I'm not having this until next year before my next appointment(!?) however he suggested the celiac diet for about six weeks to see how I get on. I have now been on it for 3 weeks and I must say that I felt a 100%better almost straight away! However after twoweeks I did have some bloating for a couple of days but not too bad and not had the problem since. The first week was tough because I had to read up on it and read every packet/tin/ bottle etc, which is time consuming. Also the gluten free food you buy is much more expensive and not as tasty than 'normal' food as you have probably found out. So now I'm spending a lot of time in the kitchen cooking my own bread, biscuits, scones, pastry and pasta etc. I have baught a very good recipy book called 'The gluten Free Cookbook' by Heather Whinney, Jane Lawrie & Fiona Hunter. It has over 200 recipies plus step by step techniquesand lots of info on what not to eat and what you can eat, and there is plenty of everyday food you can have for a healthy diet. I am hoping my test does not show I am a celiac but im sure I have some allergy to gluten or maybe just wheat. As I feel so much better now I'm sticking to the diet and have lost some weight too. Good luck with your diet and health, I do hope you go on improving.

  • wow not until next year?! This is my second week in, and I am feeling alittle bloated and gassy. I don't know if maybe I accidentally had some gluten product or if this is normal. Because I was feeling super thin and great.. mhmhm biscuits and pasta sounds like heaven. I will have to look up that cook book. Thank you for your help. best wishes xx :)

  • Hi,

    Your symptoms are exactly what I'd expect from someone who is gluten sensitive.

    The thing is you must absolutely not cheat as you will just start all the inflammation again.

    You so will feel thinner and be thinner! I lost 16 1bs in 3 weeks.

    You'll have more energy, less aches and pains, cramping...

    You'll find great alternatives there's loads out there.

    Also test out dairy. I find I'm better off it also potatoes and tomatoes can cause inflammation. They are in a group of foods called nightshades so also includes eggplant.

    Almond milk is delicious.

    Oatly milk and cream awesome too.

    I'd suggest you get your thyroid tested and thyroid antibodies too as Hashimotos thyroditis can cause gluten sensitivity so worth checking.

    Research leaky gut. Kris Kresser has a good website.

    The auto immune recovery plan by Susan Blum is really helpful too.

  • 16 lbs in 3 weeks! WOW so far im down about 8, wish It would be more. I find myself feeling like I am starving this week. I feel so hungry... I will have to look up the plan by Susan Blum! also I have been tested for thyroid while in high school... Which has been about 7 years ago, would it still be worth getting checked again? thank you for your help :)

  • Yes would definitely be worth checking again. Make sure they test your thyroid antibodies which I guarantee won't have been checked. This will indicate if you have Hashimotos thyroditis.A lot of people gluten sensitive have Hashimotos.

    Gluten free pasta is a good filler if your feeling hungry and the Schar (Danish company) do great gluten free rolls, bread, muffins...

    Help you feel like you're not missing out.

    Also get a nutri billet and do fruit/spinach shakes. Sweet and filling. The nutri bullet book has amazing recipes.x

  • I didn't have any problems going GF. I joined Coeliac UK so that I could get their wonderful GF food 'bible'- I have a friend who is coeliac so I knew all about the book, you also get a nice magazine a few times a year.

    I've found that a lot of restaurants now offer GF foods, so eating out hasn't been all that difficult. I found eating on the move tricky - I was T2 diabetic for a while and I found things like jacket potatoes - my favourite quick snack - really pushed my blood sugar levels up so I cut them out which was a bit of a blow - if I was stuck I would buy cooked chickens or unsalted nuts.

    You will have to get into the habit of really reading food labels, wheat / gluten can pop up in some very unexpected places - M&S nuts! So even if you think you know, it's worth double checking. Who would ever have thought there could be wheat in raw nuts. I also tend to drink a lot of water, I gave up diet drinks when I went GF.

  • I don't think its that challenging, until I am out and about.. Because I am constantly working, Its tough not being to stop at mcdonalds and stuff. I was at the store yesterday and I was so so shocked to see that close to everything has gluten!! I am going through this weird thing this week I am craving that fried crispy texture and it's driving me insane. I ate some peanuts and today my stomach is feeling weird... wonder if I overlooked that. thank you for your help xx :)

  • I know, I used to love McDonalds - haven't had one for a year.

    They do GF burgers in the US ( I think) but the GF stuff here is seriously limited and I don't think they have any intention of introducing it which isn't very good.

    I really like Nandos, they have an enormous book with every ingredient in every single dish listed and even then they come and double check if there is something non GF on the order for your table.

    I've been in several Nandos and they are all the same. They are impressive. My friend who is coeliac says the enormous choice he has nowadays is down to people who are not necessarily coeliac but who are eating GF - there are so many of us out there.

    I've just bought another blood test so it will be interesting to see what is happening with my antibodies - they had reduced every time I have tested throughout the year. I have now been totally GF for a year.

    Sounds like you will have to make your own copy cat McD with GF ingredients, not the same at all really and you miss out on just stopping on impulse. I like Gourmet Burger Kitchen - they do the burger without the bun so you can have a 'burger' with the family - I have always eaten in though.

    I was the opposite about McD - I was so incensed that they have the nerve to do GF elsewhere but not in the UK that I wouldn't even consider going in for the few GF things they do sell.

    Until they wisen up you'll just have to do what I do and settle for cooked chicken - most supermarkets sell that. Think pizza Express do a range of GF pizzas too.

    A chip shop near us sells GF fish and chips on Monday and Tuesdays - think that must be when they clean the deep fat fryers. I felt really rough after I had that - like you and the peanuts - so I haven't gone back to try again. Could have been the portion was too large or else it just didn't agree with me.

  • Hello, tho I'm not gluten intolerant, I know some info, my younger son went gluten/ casin free some years ago., as a trial to his bowel problems being Aspergers. He later chose to abandon this.

    Rice is fab, and I tend to buy pasta, ( normal pasta makes me bloat) also kamut and spelt are unmodified wheats, which you may be able tolerate, being ancient grains.

    Myself I'm sensitive to corn, so always avoid it, using rice flour as thickener instead of cornflour.

    Having studied the famous blood type dr, Dr aPeter D'Adamo, refers blood type to sensivities, and intolerances, well worth reading, there is also a recipe base for such things as flax seed bread and other weird US based recipes.

    I have found free from flour 'sqeaky' to touch, and seems to contain too much corn and potato flour, so I use rice flour for thickening , and baking light cakes and spelt for everything else.

    Good luck, added note, fresh ginger us fab for calming your tum, mince added to boiling water ( great for tooth ache and period pain too)

  • Wow thank you! I will look into the blood type to sensitivities. I actually am glad you mentioned the ginger! The other day I felt alittle sick and normally I go straight to crackers, but obviously couldnt so I will invest in ginger. its tough because I still dont know what I am sensitive to yet. I tried corn flour and stuff yesterday and my stomach is a tad upset today.. thanks for all your help.

  • Kamut and spelt are not gluten free.

  • Well I'm not gluten free, I did say some may be able to tolerate them

  • You could try ginger tea (tea bags) as well as fresh root ginger to help settle your stomach. It would be a good idea to sort out the gluten free side of eating before looking at any other possible allergies.

    Plan ahead, use the Internet to find places to eat out safely, carry your own safe food/snack to make sure you have something to eat. The first few weeks are difficult, I found the book "Living Gluten Free for Dummies" very helpful.

  • Thank you so much for the advice :)

  • Thanks to everyone who responded and with helpful advice and tips to stay gluten free! I am doing great so far, I hope you all have good health and good days xx :)

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