dani nero

Hi im 15 and was diagnosed with Celiac Disease last week. Im getting huge cramps and feel like throwing up. I have been careful if what I've been eating (gluten, wheat, etc) and still have those symptoms. I need answers! And quick!

Check this thread for all the answers you need :-)

I would say that since you're new to the diet there is probably a hidden source of gluten that I you're still eating and don't know about, so check the hidden ingredients page. It's also been only one week, so you might be needing a little more time to start feeling better :-)

LOL! The reason I dislike fish is b/c I grew up on the river (salt water) & we were not rich so fishing provided a LOT of food for our family as it did many other families in the area. So we ate fish about 5 nights a week. I wasn't crazy about it in the first place but eating it that often kind of turned me off. I will eat select fish --- snook -- which very few people will have heard of & are not sold; you have to catch them with a pole otherwise it's illegal & I will eat red snapper but I distrust fish in the stores -- it doesn't look fresh to me.

That's a fair enough reason :-) If anything your story has made you more selectively "posh" with your fish ;-)

This is kind of an oxymoron (not trying to be rude, it is the only word I can think of!). It's not possible to have celiac without intestinal damage. You can have celiac without gastrointestinal SYMPTOMS, but there's still going to be damage.

My confusion was with the idea that Celiac can be ruled out completely. I thought it was understood that Celiac tests are fallible, and not entirely trustworthy. Lord knows there's enough people on here who've been tested up one side and down the other, and then later either come up with the DH rash or a repeated test that came up positive.

I wonder what makes it so some people get intestinal damage symptoms and others don't feel a thing.

I think that the DH only shows up later after all the false negative tests is the fact that they've been glutened after a long period of being gluten-free, so the body is less used to the gluten and the immunity attacks harder. What didn't show up before shows up later because the reactions get worse.. something like that. I hope I understood the issue right. My IQ has been off balance recently :-(

Yeah, that's a very interesting question. It would also be interesting to know if there are celiacs who don't get intestinal damage but only DH.

There probably is plenty of official documentation about the link between DH and celiac online.

My dad was full Dutch although he was born in the US.

Must have been someone else. That's my senior moment haha :-)

I was gonna say that you can learn to love fish because it's in your blood, but that's not gonna fly :-)

Can you get your 2 second cousins with celiac disease to sit down with you & your parents & have a talk about how celiac disease is genetic & how much damage it can do if you don't follow a gluten-free diet like giving you cancer or insulin dependent diabetes etc, etc...

That's a great idea!

I would agree, though I'm late to this thread. I had given up all dairy except butter months before going gluten-free. About a month or so ago I tried some sheep's milk feta from Greece, and it seemed fine. Then I tried some Danish havarti, also seems fine. So that I could have a little more variety, I also wanted to try some yogurt, but all of the ones I found, even the organic ones that have fruit added also have 'natural flavors'. I'm avoiding all 'natural flavors' as though it says 'MSG' instead. Even though I had to get a larger container, I got some Nancy's whole milk plain organic yogurt and figured I'd add my own fruit. I just tried a little bit last night with some apple, and I think it's ok but I'm going to try it at least a couple more times to be sure.

I also take a probiotic supplement, which has been helpful.

Edit: It looks like you were posting a reply at the same time I was! Maybe it'll be helpful later...

You've been gluten-free for the same amount of time as squirmingitch.. Let us know how it goes with the yogurt!

The probiotic caps will enable you to add new foods to your list faster & we know you want to add foods! It's hell being patient isn't it?

BTW, I rather like the term sweet water fish. Sounds yummier than saying fresh water fish. This coming from a person who has a great dislike for eating fish, excepting shrimp & lobster, which are crustaceans anyway.

Faster is always better yes :-)

Sweet water fish is what swedes call it :-D Didn't you say you had Scandinavian ancestors or was it another person?

.........and her feet look just like mine.

Mine too! :-DDD

I understand you guys, so don't worry :-) I'll drop the yogurt for now and take the powders and pills. Just the thought of it makes me anxious but I really do get what you're saying, and who am I to argue with the ones who are feeling well now :-)

Thanks for your concerns and for explaining through my stubbornness!

but just try one NEW thing at a time, Dani, otherwise you may not know what's working and what is giving you grief.

okay?

Yes of course! :-)

*hug*

Yup. It seems to be holding me in good stead.

Ha-ha-ha-ha --- shopping is a girl's best friend.

Good to know :-D Hope you're always in good stead!

You're welcome. I just hate to think of you still feeling lousy, that's all. I keep trying to think of things that might help.

I'll give the powder in the yogurt a try.. although I do love the idea of flax-seeds since I haven't been able to eat so much fish lately.

Yoplait only has one culture.

3 cultures is better than none or only one. The Chobani yogurt has these: S. Thermophilus, L. Bulgaricus, L. Acidophilus, BIFIDUS & L. CASEI.

And when I first started the yogurt here's what I did..... I wouldn't eat the whole thing or even half of the container. I just got a clean spoon & took out a big heaping's worth on the spoon. I figured some is better than none. And that was my trial. As time went on I increased to 2 heaping spoons & so forth until I became sure it was doing okay for me.

Squirming, you went gluten free four months before I did.. How many months after you started did you introduce the spoonfuls of yogurt?

Dani, honey, the amount of beneficial bacteria in standard yogurt is insufficient to repopulate your unbalanced gut.

Did you read the article I sent you yet? That gastrointestinal doctor's article is the best at explaining WHY we need them.

The small amount of probiotics added to yogurt is good for people to maintain good gut bacteria, but it's not enough for people to wipe out the bad bacteria and re-colonize the gut. You'd have to eat a dozen cartons to get close to the amount in a small amount of probiotic powder. (you just mix it in water or juice and drink it down. No big deal! No taste to it.)

You could even mix it IN the container of yogurt!

It's certainly up to you, and I am not "a probiotics pusher"

but my research and my experience--and the experiences of others with celiac and a leaky gut--prove that probiotics are essential to restoring a health gut population.

If you do not want to take them, you could also try a tablespoon of ground flaxseed in water. It improves gut motility, gives you added fiber and omega-3s and will help with that constipation. My skeptical hubs (grumbling all the way )did it last night upon my suggestion and he is one happy camper this morning.

I did not intend to become an expert in "poopology", but I was determined to figure out how to make my life-long alternating D and C stop. I read tons about the GI tract and know more than I ever cared to about it.

Eliminating gluten and taking probiotics to heal my gut were the answer.

Just a suggestion!

Hope you are feeling better and better each day!

It takes me 3 weeks to recover from a gluten CC, so I know how maddening it is.

I read most of the questions in it, but must have missed the needed quantity :-) Thanks for the information IrishHeart. You're always so helpful!

Hi guys (gals actually).. Do you think it would be too soon to try a dairy based pro-biotic yoghurt? I remember many members specifying that although they could not handle lactose, yoghurt was fine.

You've all recommended powder probiotics, and I don't doubt that they're harmless, but I've always disliked taking things. I want to try it the natural (eating) way first.

I have a question though.. Is it enough to have three types of bacteria in the yoghurt? I found one called Cultura Dophilus from Arla which contains three.

Oh Dani, I thought you had. I thought I remembered you posting in it. I must be confused.How are you doing?

I'm great thanks :-) Been busy pampering myself by buying new things for the house.. Spending money on myself when my tummy isn't fulfilled really does help haha :-)

I'm really glad you found the right pro-biotic. Is it still working for you?

When I showed the doctor the rash, he said he wanted to wait until we get results for my 10 yr old son. Its been a month and we are still waiting. He doesn't want me using anything but cortisone cream at this point. We don't have a dermatologist locally (she retired last year), so I will have to travel an hour and a half away to see one. That's ok though, as we will have to travel to the same location to se a pediatric GI anyway. He's still itching, but it seems to be lessening a bit.

I was prescribed with cortisone when I showed my DH to the doctor.. that was because my doc had no idea what the rash was, and didn't bother to do any testing. It did help temporarily but the blisters and the dry skin kept coming back.

Sorry to hear you're lacking support from your family. A lot of us can associate with you and share your fears and frustrations about going back on gluten. I'm still waiting to go visit the doc who most probably will make me go on gluten. I'm sad to say that your adult friend should not have recommended you to go off gluten without visiting the doc first, but what's done is done. Is your friend self-diagnosed or do they have a doctor? If they have a doctor then you might consider taking an appointment there.

You have to be more vocal with your family to make them understand, because "getting it" is the hardest part for them. It's hard to understand Celiac because it isn't like a cold or chicken-pocks (some people on the board with rashes might find that ironic) and because gluten is embedded into everything.. literally, and most people eat it with no problems. To them this is very strange.

You have to start looking after yourself. Wash your hands or anything else (dishes and cutlery) with your own sponge before putting anything in your mouth. You also need to read this info: https://www.celiac.com/celiac-disease/forbidden-gluten-food-list-unsafe-ingredients-r182/

I'm sorry I missed this when you first posted it Dani. Great big (((((HUGS)))))!!!!!!!!!! And whoopieeeeee for the pears & salsa. Now, you know the salsa is high sals Dani but I'm just reminding you is all. If you get away with it then by all means ENJOY heartily! I have an idea for your next trial. Cashews - unsalted & salt them yourself with non iodized salt. Actually, I've gotten quite fond of things unsalted. Took the opportunity to cut back on my general salt consumption through all this process as I was a total saltaholic. I digress. If you can do the cashews that will give you something crunchy to satisfy that urge. And then you will know that you can eat cashew nut butter which you can spread on things. Cashews are low sal. And if you can eat cashews then it's a good bet you can eat pecans & walnuts --- all low sal nuts. Then you can put pecans or walnuts in foods to zip them up. How about a pear salad? A leaf of iceberg lettuce with peeled pears sitting on it with a dollop of gluten-free mayo with chopped walnuts or pecans sprinkled on top. You can put roasted chopped pecans in rice too to zip it up.

And I don't see why white rice would bother you if brown rice doesn't. White rice is nothing more than brown rice minus the brown.

How are you doing today? You last posted on the 19th & this is the 21st. We hope you only have good news!

Edited to say --- I'm a dunce! I missed a whole page when reading & responding to this. Can you say, "senior moment"?????

Hahaha Squirming :-) You're not a dunce but you did put a smile on my face!

Indeed the salsa did cause an itch and very mild blisters that are going away now that I stopped eating it. I think that the cheating period is finally over since I've seen a flash of the consequences. And I'm feeling extremely motivated and up for putting up with the diet once again thanks to all of you!

Those treats sound yummy :-) I'm not a big mayo fan, and I'm yet to add eggs to my diet, but I'll figure a way to adapt it to my liking.. perhaps by mixing it with something else to change the flavor and thickness. Maybe lime and some creme fraiche.. once all the ingredients are added that is.

I get what you mean about getting used to smaller amounts of salt. I feel that it applies to sugar as well. Ever since I started the elimination diet, I've been tasting the sweetness in things double fold. The green pears used to be very mild in sweetness for me compared to when I used to eat chocolate and ice cream, or put sugar in my tea. Now they taste as sweet as honey. I cheated the other day by taking a bite of ice cream, and it tasted way too sweet to the point of not liking it.

I was actually very excited about the cashews, I ended up adding them yesterday, even though my gluten symptoms have not completely passed. I know I should have waited but I think it was important to add something new for the sake of not continuing to eat things that will bother me. They were a bit hard on my stomach when I ate them raw. I got a small heartburn with some nausea. I tried them again, but I roasted them (in the evening and again this morning) and didn't feel any discomfort. I think they're going to be ok :-)

Oh geez. And we thought they were bad in the States.

I've actually had decent luck with pharmacists.

I would reco brands but I've never gone down the soy free route. I use Enzymedica enzymes. You might check and see if they meet all the requirements and are available to you. They are very well respected.

I use Weleda salt toothpaste but it has mint in it so that's out for sals.

I use Tylenol for minor pains. Almost all of their formulations are gluten-free in the States but check it there. The advantage is it isn't an NSAID and is supposed to be less likely to make DH flare.

It is true that if you supplament now with vitamins/minerals it could mess up testing. That happened to me with B's. I was taking lots of them and my test was normal. I got off them and next time I was low low low.

In terms of medicine I am sad to say that sweden's health-care needs a loooooot of change. So many things they haven't heard about and I'm not the only one complaining.

Thanks for all the recommendations!

Hey Dani...Prickly is right! too many ingredients in rice milk! not all are created equal! LOL...Try Blue diamond almond milk , the unsweetened tastes very close to REAL milk...although my fammily prefers the sweetened vanilla because it tastes like melted vanilla icecream and wafflecones! I use it as a subtitute for creamer in my coffee! Also almond milk has more CALCIUM and POTASIUM than REAL MILK!!

Pears are very good for your digestion...you should google "health benifets of pears" see what you come up with! I do that all the time...dates are amazing food also by the way!

And Irish...don't stop telling your story! Its allways insperational...puts our OWN perspective in place...and the more you tell it the more chances of NEWBIES coming across it to be inspired as well!Just when things seem over whelming we read about OTHERS miseryies AND triumphs over Celiacs and it gives us HOPE! Besides how else is everybody going to learn if we don't all share our experiances! if only to know we're not alone! So many TIPS on what to do..lots of trial and error...this site is invaluable!

And GUYS... Its OK to complain...this is a SHARED thing .Our family and friends certainly don't want to hear about it,(at least not as much as we NEED to TALK about it..LOL!) This is the PERFECT place to let out a good RANT...WE'VE ALL HAD OUR SHARE! LOL!!! WE GET IT...so Rant away!!! Its good for you!

HAVE A GOOD DAY LADIES! ...and THANKYOU!

Hi Cougie! I love your profile picture :-O

I sadly couldn't find any almond milk here, but it really sounds tasty.. Perhaps it's a good thing because almonds seem to be high on sals which means it'll make me itch. Dates are also high on sals, but it might be worth it to see if I can tolerate just one date a day, because they contain soooo many vitamins!

You are so right, family and friends don't want to hear about it.. it isn't something that excites them haha :-) WHenever I talk to my husband about this I see a look on his face: Oh no, here she goes! I don't get it, because he should be thrilled that we at last know what the deal is. We used to think that we couldn't have children without extreme measures and now that has disappeared :-)

I can't stop stressing how glad and happy I am to have people to talk to about this. I am trying to be active with other people's topics but I don't think I'm good at solving problems as well as I am in finding them! I just wish we live closer and could meat regularly like IrishHeart pointed.

Took me over 3 months to stop feeling withdrawal symptoms. Congratulations for being on the road to recovery :-)

I should have read this thread a long time ago :-O

Thanks guys! I know the probiotics are very helpful since everyone is taking them.. I just felt a little overwhelmed and lazy to research them in Sweden. I'll see if I can find the brands you recommended here, or something like them. Thanks for the recommendations :-)

I actually did go hunting for digestive enzymes a year ago (before knowing I had celiac) and all the pharmacies said that the only thing I can get off the shelf was a lactose enzyme and some other enzyme.. They rarely ever prescribe them as well.. I don't remember what the reason was exactly but enzymes are frowned upon here. I ended up going home with a ton of expensive vitamins that didn't do anything for me, although I did explain to the pharmacist that I rarely eat junk-food or candy, and that my food mostly consisted of fresh foods.. so she should have thought it was strange I wasn't getting enough nutrition from my diet. I think that the main reason I didn't get proper help was the fact that I've always been overweight. Doctors and pharmacists immediately assume they know what kindof food I eat and how much I move just by looking at me, and they sadly let anything I tell them out the other ear.