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DingoGirl

Distended Stomach - Lots Of Pain - I'm Confused!

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Hi all, I hope you can help....

I've been gluten-free for almost 6 weeks now. Felt really great the first 3 - 4, but I don't know what's going on. checked everything. My stomach sticks out really far now, and always hurts. I was glutened Sat. night and had major D on Sunday. D again Tues. morning. Now, constipated, nothing, just lots of stomach pain and distension ALL THE TIME. Could I be lactose-intolerant? What are symptoms of that?

My brain fog is back also. Feeling pretty miserable, actually. :( Oh, have always been on the skinny side, not as much since going gluten-free - - small-breasted, CAN'T STAND MY STOMACH STICKING OUT THIS FAR!!!!!

:( People are noticing....

But mostly, I feel lousy, and don't know why. I've been so careful! WHAT will I eat if I have to give up dairy?????

Kind of having a pity party over here. Bear with me....

:(


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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Guest nini

it might be the dairy, but it might not... are you absolutely 100% sure you have all the hidden gluten out of your diet, medicines, makeup, personal care products? Cross contamination???

if it isn't that, then with the dairy, some celiacs are lactose intolerant ONLY until the villi begin to heal, so if you do have to give up dairy it may only be temporary.

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it might be the dairy, but it might not... are you absolutely 100% sure you have all the hidden gluten out of your diet, medicines, makeup, personal care products? Cross contamination???

if it isn't that, then with the dairy, some celiacs are lactose intolerant ONLY until the villi begin to heal, so if you do have to give up dairy it may only be temporary.

When I met with my GI after biopsy results he said that I had NO villi whatsoever, the surface of small intestine was virtually flattened. I have been reading that it is the tips of the villi that produce the lactase...

Frankly, Nisla, I am worn out from checking for GLUTEN in everything :huh: but you could be right, it could be in SOMETHING that I've overlooked? I just don't know. I"ll go over all cosmetics/etc. again.....


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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Guest nini

if you have NO VILLI then, more than likely it is the dairy, because the tips of the villi are where lactose is absorbed... and if those aren't there you become lactose intolerant. But, once the villi are healed most people can tolerate dairy again.

I thought I was lactose intolerant before my dx, so I was already avoiding it before gluten-free, my dr. told me that after I was gluten-free for about six months to go ahead and try dairy again and see if I could tolerate it... LO and BEHOLD, I was able to tolerate it and now I can have dairy.

So, like I said before, if it IS the dairy, then it shouldn't be a permanent thing that you would have to eliminate, just temporary! You can handle that, right?

Oh, and I totally know what you mean about getting tired of looking for gluten in everything. Sometimes I get so sick of it and just go "WTF"!!!! Most of the time I'm safe...

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Didnt you say (on another thread) you hadnt replaced your toaster and kitchen stuff that could cause cross contamination? Have you done that yet?

Sorry if I'm confusing you with someone else...my memory's not always the greatest. :)

If you're sure its not gluten I'd definately try no dairy for a couple weeks...see what happens.


Rachel

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Didnt you say (on another thread) you hadnt replaced your toaster and kitchen stuff that could cause cross contamination? Have you done that yet?

Sorry if I'm confusing you with someone else...my memory's not always the greatest. :)

If you're sure its not gluten I'd definately try no dairy for a couple weeks...see what happens.

Rachel your memory is better than you think....I have NOT replaced toaster, etc. But, if I live alone, and cleaned everything, do I really need another???

Grrrr.....this is SO taxing! I mean, when we're feeling great, it seems worth it, but when we're not....it's just TAXING!!! :angry:


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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What kind of toaster do you have? If its a regular toaster I think it'd be impossible to clean...might as well get a new one for like 10 bucks. If its a toaster oven then that would be easier to clean plus you could just put foil down to be sure. A regular toaster would definately cause cross contamination...I'm sure you've toasted regular bead in it if you've only been gluten free 6 weeks now??


Rachel

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It's a toaster oven, and it was kind of an expensive one.....and if I've run my cookware through the DW, shouldn't all of that be okay?

I think it's dairy. Today I ate a big helping of tapioca pudding, oh, and also a big glass of milk at breakfast, and if you didn't know me, you'd SWEAR I was 6 months pregnant! :huh: BIG BLOAT!!!


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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Yeah...you should be ok with the oven. Just dont put the bread right on the rack. Sounds like dairy...I dont eat dairy for the same reason...huge tummy. :(


Rachel

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Don't forget that dairy is more than lactose. Many celiac disease (including myelf) are IgG reacting to the casein milk protein. Being glutenized makes me bloat even if there was no cow in sight.

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Hope you feel better soon!! I can't tolerate dairy right now either and can't wait until I can again. (hopefully that happens). I get the same symptoms....severe bloating, pain and sometimes D if I eat or drink enough. I can have small amounts of cheese if I take Lactaid with my meal, but I don't push it by eating too much. I tried to drink an 8 oz glass of milk about 6 months ago and thought I was going to die. :( I was substituting soy milk, but am no sensitive to that as well :angry:


Kim

"Life isn't about how to survive the storm

but how to dance in the rain."

Positive bloodwork 1/9/06

gluten-free since 1/12/06

Very positive dietary response

DS (12 years old)

Biopsy 7/7/06 ~ Diagnosed Celiac 7/12/2006

gluten-free since 7/15/2006

DD (almost 6)

HLA-DQ2 positive

Celiac Bloodwork negative 2 different times

Still eating gluten for now.

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Sounds like it is probably dairy. I am there with you as far as it being taxing when you don't feel well anyway! Sometimes I wonder what is the point, but felt worse before, so I guess it is worth it. It will get better and sorry you are so miserable! I don't know what to eat either. I get C it seems all the time unless I have gluten and then I get major D! Very annoying.

Monica

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Sounds like it is probably dairy. I am there with you as far as it being taxing when you don't feel well anyway! Sometimes I wonder what is the point, but felt worse before, so I guess it is worth it. It will get better and sorry you are so miserable! I don't know what to eat either. I get C it seems all the time unless I have gluten and then I get major D! Very annoying.

Monica

Sigh. It's hard to be us, and only WE understand!! If it's not ONE thing...... :unsure:


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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Hi all, I hope you can help....

I've been gluten-free for almost 6 weeks now. Felt really great the first 3 - 4, but I don't know what's going on. checked everything. My stomach sticks out really far now, and always hurts. I was glutened Sat. night and had major D on Sunday. D again Tues. morning. Now, constipated, nothing, just lots of stomach pain and distension ALL THE TIME. Could I be lactose-intolerant? What are symptoms of that?

My brain fog is back also. Feeling pretty miserable, actually. :( Oh, have always been on the skinny side, not as much since going gluten-free - - small-breasted, CAN'T STAND MY STOMACH STICKING OUT THIS FAR!!!!!

:( People are noticing....

But mostly, I feel lousy, and don't know why. I've been so careful! WHAT will I eat if I have to give up dairy?????

Kind of having a pity party over here. Bear with me....

:(

I have very very similar reactions to dairy. I always thought I was lactose intolerant, but when I did my celiac tests with Enterolab they also tested for casein sensitivity, and I had it. So I've had to give up dairy, too, and it won't get better. At the very least, at this point in time for you, I'd give up dairy so your villi can heal, and later see if you can tolerate it--perhaps with you it's just lactose intolerance. Or get tested for casein sensitivity so that you know if it's really that! It's a bummer....for me, the elimination of dairy is probably harder than the gluten. Total bummer. :(:angry::(:angry:


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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Same thing happened to me. Gave up gluten and I was SO much better for a few weeks then I back slid. I'm finding sensitivities to a lot of things right now. Basically what seems to help me was to go on the SCD diet (sans dairy) and slowly try new things. Diary, chocolate, and I think nuts are not going down without a fight.

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You are probably lactose intolerant, as everyone has said.

There are still lots of things you can eat; here's a few ideas for daily stuff:

breakfast-Envirokidz cereal with Pacific Almond Milk-it's non dairy, non soy and tastes great.

snacks: Energz granola mix-it's wonderful

Fresh fruit/veggies

Lunch: a non dairy Amy's frozen meal OR Amy's soup (lentil, chili, etc). They are dairy free and taste great

Or, gluten free break w/ peanut butter

Dinner: BBQ or baked chicken w/ brown rice and broccoli, or fresh salmon w/ brown rice and a veggie, or a fresh steak w/ brown rice and veggie, you get the point!

Those are a few ideas....hope it helps!

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BY THE WAY....Dr. Peter Green in his new book "Celiac Disease...A Hidden Epidemic" states that the ONLY cosmetic we actually ingest is lipstick, and to be sure whatever you use if gluten free....that you will probably have to call the lipstick co. to be sure since labeling isn't as strict for non-food items.

Beyond the lipstick, he stated very clearly that GLUTEN DOES NOT ABSORB INTO THE SKIN....that gluten must get into your intestines thru being eaten, or in the case of lipstick, it's on your lips and it's easy to see how that would get into your digestive system. He said lotions, shampoos etc. can have wheat or gluten and that celiacs would not have a problem with that.

However, I have to say this: I'm not totally sure whether to believe him or not. I hadn't read this before. I will say that my ultra ultra sensitive mom says she doesn't appear to have any problems with creams and lotions and shampoos, and she never really paid much attention to ingredients since she had no problems. So perhaps it's true. Maybe gluten in these would be a problem if you had DH, though....

What does everyone think about this???


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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What does everyone think about this???

I tend to believe him, because you do have to actually get the gluten into your intestines to do any damage. It's an intestinal reaction, not a topical one. You know how things like sea anenomes have little feelers and they shrink back when they're touched? Pretend the sea anenome is your villi, and that a hand is gluten. When gluten touches the villi, they shrink back. But the hand can touch all kinds of other things in the ocean without harming or affecting them.

I'm not sure that analogy made a whole lot of sense, but unless you're topically allergic to gluten, it shouldn't be a problem. My concern is that if my hair gel or something has gluten in it, and then I touch my hair and pick up my food, I might transfer gluten that way, so precautions are probably good. :huh:


Alright, don't worry even if things end up a bit too heavy

We'll all float on, alright

Well we'll float on good news is on the way...

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I think it makes perfect sense, I have not gone crazy worring about my shampoos etc

back to the question, I'm sure its dairy, I made a Hugh mistake tonight and tested myself with a lg amount of dairy, I had an Amys gluten-free Mac and Cheese, within an hour my belly was so bloated you'd swear I was pregnant, terrible pains, lots of gas and the weird thing is I feel drugged...I took 2 lactose pills, but it was a lot of cheese..its been 3 hours still hurting, that's the last time I'll eat that much cheese again, I think I'm ok with small amounts

live and learn


~Betty

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I'm not in the least worried that the gluten in my shampoo or whatever would be somehow absorbed through my skin. What I don't want to have to do is every time I wash my hair, or apply lotion, to remeber to not touch my mouth, or prepare food etc. It's just so much less stressful to use products that don't have gluten. I wonder how many products dr. Green uses hiself? ;):D

Pauliina

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Guest Robbin

I feel the same with dairy as I do with gluten, and I am also sooo sick of being sick and reading everything etc, etc, etc. The longer I am gluten free, the more and more food of any kind seems to be getting to me, too. I hope you get better soon. It sure helps to have others to understand. My family is so sick of me being sick I know. I would be sooo sick of me, too. I am to the point of wanting to just go grab a burger, fries, and a frosty because I feel like snot anyway. (But I won't --I'd probably croak)!

I hope you feel better soon (And everyone else here too) :)

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I was having really bad itching all over my belly - I didn't have a rash with it. I changed shampoo (which may have had gluten in it - I couldn't get a direct answer from the company) and body wash about a week ago, and it is getting a lot better. So even if I wasn't ingesting it, I think it was still affecting me.

DingoGirl - do you make yourself gluten free pasta? If so, did you toss out your old colander? It's impossible to get all of the residue out of those little holes. There might be some old gluten hiding in there. I hope you feel better soon.

Cindy


Diagnosed with Celiac Disease April 2005

Diabetic

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DingoGirl - do you make yourself gluten free pasta? If so, did you toss out your old colander? It's impossible to get all of the residue out of those little holes. There might be some old gluten hiding in there. I hope you feel better soon.

Cindy

Cindy - I had never thought of that! It's an ANCIENT metal colander.....and I have made gluten-free pasta a few times. Great idea.

BTW my stomach is much better since removing dairy. Not so pregnant-looking and feeling now.

Thanks guys!!!! :D


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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I feel the same with dairy as I do with gluten, and I am also sooo sick of being sick and reading everything etc, etc, etc. The longer I am gluten free, the more and more food of any kind seems to be getting to me, too. I hope you get better soon. It sure helps to have others to understand. My family is so sick of me being sick I know. I would be sooo sick of me, too. I am to the point of wanting to just go grab a burger, fries, and a frosty because I feel like snot anyway. (But I won't --I'd probably croak)!

I hope you feel better soon (And everyone else here too) :)

Robbin, you read my mind!! I think about getting a sub and fries everyday..figure this diets not working, still having pain..might as well eat something really good..then my hubby says if you do that I'm going out for about 8 hours cause I don't want to watch you on the floor crying like before..so great, I'm not on the floor crying, that doesn't mean I'm still not sick!


~Betty

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Robbin, you read my mind!! I think about getting a sub and fries everyday..figure this diets not working, still having pain..might as well eat something really good..then my hubby says if you do that I'm going out for about 8 hours cause I don't want to watch you on the floor crying like before..so great, I'm not on the floor crying, that doesn't mean I'm still not sick!

I also agree! My stomach has been ENOURMOUS for the past month, literally. Some days, like today, are a little bit better, but most of the time, and always at night, I look like I am going to have a baby any day now! I got so frustrated last night because I don't feel like I'm in my own body anymore, and it's not fair because I'm NOT pregnant, and there is no baby I'm going to get out of all of this pain! So I was crying and getting so mad that I told my DF (fiance) that I should just go back to eating gluten, I'll probably always be sick anyway! Then he started getting angry with me saying, it's not even been 4 months yet! You have to give it time. I said, I just want a doctor to tell me, 'everything is going to be fine eventually. Just do this this and this and give it this exact amount of time, and then you'll not have to worry about it anymore.' But of course, none of them have said this to me. Not even the famous Dr. Green.

Then, on the subway this morning to work, all of my old list of symptoms started flying through my brain (horrible muscle pain, dizziness, joint pain everywhere, every piece of my body throbbing and aching, sensitive scalp headache, extreme fatigue, getting 'the flu' (or something) once a month, weird "D" or not going at all for about 3 weeks at a time, PLUS the bloating and gas. I was like THANK GOD I DIDN'T GO GRAB A COOKIE OR SOMETHING! I'm still a lot better off than I was before, I just expected I would feel like a million bucks after taking the gluten out right away.

Thank God for this site though because I know I'm not alone. But on the other hand, I get kind of scared seeing how a lot of us don't seem to get 100% better! (Don't get mad at me anyone, please) But I wish the 'old' celiacs would write more on how wonderful we will all feel once we get through this 'healing process.' (I mean, is there really a 'healing process' when we keep getting sensitive to more and more foods? Doesn't that set us back? Okay, I'll stop worrying everyone now.......)

But I do understand you, that's all I was getting at! :)


Danielle (Dani)

Diagnosed with Celiac Disease by Dr. Green (gene HLA DQ8) 1/05/06

Diagnosed: Gluten Sensitive through enterolab 11/17/05

Diagnosed: Casein Sensitive through enterolab 3/7/06

Diagnosed: Interstitial Cystitis (IC) 07/26/06

I finally put my picture on because it doesn't look like I'll be eating ANY cake on my Wedding day..........I'm the one in the middle.

Intolerant to: (besides gluten)

Casein

Peanuts (can handle very small amounts)

Any kind of additives or preservatives

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