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Hi everyone, I hope someone can help me, My blood tests came back positive for celiac after being sick for at least a year, I've had every test my Gastro can do, I was told I also have gastroparesis and very bad IBS

I have stomach pain,bloating,gas, grumbling everyday..it feels like I have to go to the bathroom but can't.

I started the gluten-free diet a couple weeks ago and I'm still having pain most everyday..it usually starts about 2 hours after I eat..always starts with bloating, grumbling, gas then the pains come, it will stay this way all day.

I've been reading everything I can on celiac and most articles and even posts I've read say that once on the diet ppl feel betterin a matter of days, a few weeks at the most.

its starting to scare me that I'm still having so much pain etc.

how long did it take till tou felt better? did you still have symptoms while eating gluten-free? did you get stomach pain??

thanks very much

Betty

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My first suggestion would be to make sure that you are totally gluten free. Check your lotions, medicines/vitamins, shampoos, everything. When I first heard that, I remember thinking "yea, right!" but sure enough - it was in my shampoo, hair spray and foot lotion. Who'd have thunk it???

Everyone seems to have different time lines. I started feeling better slowly... then I'd have a good day, then a bad day... Now I'm dealing with some anxiety issues - but my GI tract is better than it has been in a year! I still get tummy rumblies, but I'm realizing that some of those sounds might actually be "normal" :blink: I do still get some "D", but it's usually short-lived - not the daily routine of the past.

Are you also dairy free? I can't seem to process much dairy at all - even a half a cup of yogurt. I'm giving my body a rest and eating GFDF until I get the anxiety under control, then I look forward to trying dairy again.

Be patient, check everything, work with your doctor.

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I'm not sure about my shampoos and lotions, I can't even pronounce most of the ingredients, how the heck would I find out? is there a no no ingredients list someewhere?

like you said lotions etc..ya,right..I don't eat them, so how could they give me stomach pain?

I'm trying to go DF too, thats where I'm having trouble, all my gluten-free foods I bought have dairy.

do my symptoms sound "normal" for celiac disease to you? I just get so upset when I read a post somewhere and the person talks about feeling better as soon as they stopped the gluten :angry:

thank you very much for the help

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There are several lists available on this site - if you go to the site index and go down the list to about the 5th or 6th item it will say safe and forbidden food items that should help you get started.

My husband has been gluten free for about 3 months now and he is still having a lot of the same symptoms you are having. He feels better than he did in the begining but he is still a long way from better. He has also eliminated dairy and soy from his diet. He gets bloating, gas, and stomach pains almost every time he eats now. We are very careful and our house is gluten free. He describes his stomach aches as you did - he's always saying he feels like he needs to run to the bathroom. He has a few days where he feels better than normal and then out of no where he's feeling yucky again. I think its just part of the healing. He eats very plain food. Only meat he can handle is fish or chicken (beef really sits very heavy and makes him feel terrible), he eats lots of fresh fruits and veggies (I'm wondering if this may be part of the problem with the gas). Hang in there it definately takes time to feel better. I think the people that feel better in few days or a few weeks are very lucky and very rare. Hope you are feeling better soon.

Jennifer

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jenn, thank you for taking the time to reply, just knowing someone else is still having pain etc helps. I can't go near a salad, its just to hard to digest, same with many fruits and veggies. fish and chicken is a bit better. I'm getting to the point where I'm afraid to eat :o

like your hubby I have a good day and think, I'm finally getting better, but thje next morning it all starts up again..its making me nuts, causing more stress [panic]

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Hi!

I have been gluten-free for 3 years, and it took me about 6 weeks, at least, to start feeling better. GI problems continued during those 6 weeks, but other symptoms like foggy brain lasted for almost 3 months! Good Luck!

Hi!

I have been gluten-free for 3 years, and it took me about 6 weeks, at least, to start feeling better. GI problems continued during those 6 weeks, but other symptoms like foggy brain lasted for almost 3 months! Good Luck!

Also, I wanted to note that about a year into being gluten-free, my GI problems started up again, so the testing began again, and my doctor found that I have a rare form of colitis only found in celiacs, which can be treated with steroids (I opt for more dietary restrictions when I am aggrevated). You might have this type of underlying condition...

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thank you for the reply..it does help me to know its not going to get better within weeks.

does anyone know if theres a safe list for shampoos, lotins etc. the ones here are not free

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:lol:

Hi everyone, I hope someone can help me, My blood tests came back positive for celiac after being sick for at least a year, I've had every test my Gastro can do, I was told I also have gastroparesis and very bad IBS

I have stomach pain,bloating,gas, grumbling everyday..it feels like I have to go to the bathroom but can't.

I started the gluten-free diet a couple weeks ago and I'm still having pain most everyday..it usually starts about 2 hours after I eat..always starts with bloating, grumbling, gas then the pains come, it will stay this way all day.

I've been reading everything I can on celiac and most articles and even posts I've read say that once on the diet ppl feel betterin a matter of days, a few weeks at the most.

its starting to scare me that I'm still having so much pain etc.

how long did it take till tou felt better? did you still have symptoms while eating gluten-free? did you get stomach pain??

thanks very much

Betty

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Guest nini

one of the biggest mistakes most newly diagnosed celiacs make is to go out and buy a whole bunch of gluten free substitute foods... I did the same thing so I'm not pointing fingers!

Eventually what I found worked best for me was to take my diet down to the most simple basic foods for a while and let my damaged system heal. Ultimately it was about 6 months before I started feeling somewhat human! I had been sick all my life and REALLY ill for about a year... I was 34 when I was dx'ed.

The diet that I had to stick to for a while as I was healing was VERY BORING but safe and I felt so much better on it. I also had to take a multi vitamin (I found a children's chewable at Dollar Tree of all places that was gluten free)... I ate plain Rice with salt and pepper, bananas, applesauce, and baked chicken. This was ALL my system could handle for a while... eventually I was able to add some fresh fruits and vegetables, potatoes and other meats... after a while I was able to reintroduce dairy to my diet and I was very surprised to discover I was NOT lactose intolerant.

I am now almost 3 years into this lifestyle and I feel really good most days other than lingering fibromyalgia and old injury pain... the digestive upsets are very rare these days...

Simplify your diet for the time being until you start to feel better, then you can start adding foods into your diet.

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great advice..I like to cook so dinner is pretty easy to stick to the basics, but its breakfast or lunch where Im having trouble..I just want to eat something quick and easy. most breads, at least all the gluten-free ones I bought have dairy.

I too have Fibro, Chronic fatigue [need a 2 hour nap everyday] discord lupus and hypothyroid :o

I hope Rolaids are safe, I'm living on them

thanks again

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Guest nini

you better check the rollaids... I personally don't take them, and I think I read that Tums have gluten in them, so def. check the rollaids. I used to live on pepto bismol chewables and immodium! Still keep the pepto chewables handy!

Bananas make a great breakfast... try staying away from the gluten free breads for a little while, also who says you have to eat breakfast foods at breakfast?! You can eat leftover dinner foods for breakfast too! Cream of Rice Cereal is a good breakfast for when you are healing... I forget the brand I got but it was labeled gluten free.

Also, check any prescriptions you may be taking as well, and also any OTC meds.

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nini, it does seem that everytime I eat a gluten-free bread my belly hurts more?! they seem heavy to me.

I will check my rolaids and blood pressure med.

your right about breakfast, I could just eat anything leftover. I'll give cream of rice a try, maybe add some rasins.

EERR just want the pain to stop.

thanks again!!

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Guest nini

sometimes when we are very ill, when we are first healing processed foods of any kind, even gluten free ones, can be hard for the system to digest. Hopefully you will find that as you start to heal you will be able to add more variety to your diet, but add things slowly and try keeping a food log and note if you have any adverse reactions to anything... you may notice a pattern! Good luck with it all.

I've found that I have issues with meats that are commercially raised, I do better with organic meats, hormone and antibiotic free. Organic dairy products, Organic fruits and veggies... I also can't do any lunchmeats or hot dogs with nitrites or nitrates.

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I second the "whole, naturally Gluten-free Casein-free foods" approach. Breakfast can come in the form of eggs, smoothies (from fresh/frozen fruit, not mixes), rice cakes with peanut butter, etc., or leftovers. Any meal can be any thing! ;-) Do make sure to double check all your foods - no soy sauce (unless it's a wheat free tamari or the wheat-free la choy), make sure the tea you're drinking (if you are) doesn't have barley, you're not using "apple cider flavored vinegar" (apple cider vinegar is fine, apple cider flavored vinegar is not), you're not using your old toaster (crumbs will contaminate you), and so on. Other than that, it's patience.

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thanks :D

I've never had a smoothie, Can they be made gluten-free and Dairy free? I've always been afraid of them because of an ulcer and acid in fruit.

I would love advice on how to make them, bet my belly would be happier.

I don't have a toaster,just a toaster oven we all use..I better buy a cheap little toaster for myself

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thanks :D

I've never had a smoothie, Can they be made gluten-free and Dairy free? I've always been afraid of them because of an ulcer and acid in fruit.

I would love advice on how to make them, bet my belly would be happier.

I don't have a toaster,just a toaster oven we all use..I better buy a cheap little toaster for myself

a smoothie's just blended fruit. no reason it needs to have gluten, and it only has dairy if you add it. do all fruits bother you? if not, blend up the ones that don't. one that I like, that doesn't have anything obviously acidic, is bananas, peaches, and blueberries. bananas, mango, and strawberries are good too. (that last one is even better with some coconut milk too. ;-) ) add ice if you want it cold and thick.

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I make my smoothies with wheat/gluten free dessert or flavored tofus, orange juice or other juices, fresh fruit and some water and ice. It is like having a giant slurpee that is really great. Some days, that is all I have all day.

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I feel dumb :P asking this but once I throw the fruit in the blender what liquid do I use instead of milk? just plain water? I can't have OJ to much acid..

thank you bunches..not kidding when I say I've never had/ made one

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Guest nini

I like to use apple juice and frozen bananas and frozen strawberries and a little honey, just toss in the blender and mix! Sometimes I throw in a few extra ice cubes. In the past I have used silken tofu as well but I'm having issues with soy so I'm avoiding that.

To freeze the bananas, I peel them first, break them in half, then put them in ziplock freezer bags, for the strawberries I just buy the presliced frozen organic strawberries from Cascadian Farms

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thanks nini..I'll try apple juice with banana tomorrow,. i have apple juice in the house for my son,just need to make sure its gluten-free

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I usually don't add liquid - just fresh fruit. if you're using frozen fruit, then just enough water to blend is the way I usually go.

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thanks, I'll try it that way too..I thought without a liquid it would be too thick to drink

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I put in a little bit of Almond Milk in my smoothies for some extra calcium. If you're using soy or rice milk, be sure to read the labels - surprisingly some do have Gluten in them.

I remember I called Rolaids and the regular ones are fine, the soft chews aren't. Tums have trace amounts of gluten I was told. Pepcid, I think, is fine.

I also took my diet to the bare minimum and slowly added things back in. You might want to search on "elimination diet" or find a dietician you could work with. Be sure to keep a food log too - that way you can look back and see if there's a pattern of foods that are giving you trouble.

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One more thought: if the breads you bought were made out of bean flour that could be causing you some trouble too! I had a couple slices of bean flour bread and it was like "watch out" :blink: I use rice bread, just got my first loaf from kinnikinnick - and it's great! It's also dairy free! I also get bread from Celiac Specalties bakery. Both places ship and offer other products like rolls, hamburger buns, even donuts :D

And regarding salads: when I first started this i thought salad would be a good lunch. Wrong! Be sure to check all dressings for starters, and also lettuce seems to go straight thru me too. I've tried using "lettuce wraps" for sandwiches, but even that was giving me some trouble. A good lunch for me is usually just leftovers, the chicken/wild rice salad in Bette Hagman's cookbook, or Progresso Chicken Wild Rice soup. And almost every Sunday there's a turkey or chicken roasting in my oven - it makes good salads or even a quick meal for the busy week.

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