Celiac Disease Is It?

[MURILLO]

HI, EVERYBODY,

I M RAONI, I HAVE 26 YEARS AND I FROM BRAZIL, I D LIKE TO SHARE MY HISTORY WITH YOU ALL AND HOPING FOR SOME TIPS.

IT HAS BEEN 3 MONTHS SINCE I STARTED A GLUTEN FREE DIET AFTER GETTING A POSITIVE BIOPSY (MARSH 1), I WAS NEGATIVE FOR THE BLOOD TESTS, I HAVE SUFFERED FOR 4 YEARS WITH STOMACH PROBLEMS (IT STARTED AFTER AN INFECTION), I FELL VERY TIRED, FATIGUE, I AM WEEK, I HAD INSOMNIA, GAS AND BLOATING, AND MY STOMACH HURTS SOME TIMES, AND I WAS VERY GLAD WHEN I FOUND ABOUT celiac disease IN MY BIOPSY, BUT THE TRUTH IS THAT AFTER 3 MONTHS I DIDNT GET ANY BETTER AND I STARTING TO GO CRAZY, SINCE THIS SITUATION IS GETTING CRITICAL IN MY HEAD, I WOULD LIKE TO WHAT TO DO? RETEST? ENDOSCOPIE CAPSULE? GLUTEN FREE DIET FOR A YEAR? I REALLY COPE WITH ANYTHING AS LONG AS I GET BETTER, NO MATTER WHAT I HAVE TO DO!

THANKS YOU ALL FOR THE ATTENTION

MURILLO

[Simona19]

HI, EVERYBODY,

I M RAONI, I HAVE 26 YEARS AND I FROM BRAZIL, I D LIKE TO SHARE MY HISTORY WITH YOU ALL AND HOPING FOR SOME TIPS.

IT HAS BEEN 3 MONTHS SINCE I STARTED A GLUTEN FREE DIET AFTER GETTING A POSITIVE BIOPSY (MARSH 1), I WAS NEGATIVE FOR THE BLOOD TESTS, I HAVE SUFFERED FOR 4 YEARS WITH STOMACH PROBLEMS (IT STARTED AFTER AN INFECTION), I FELL VERY TIRED, FATIGUE, I AM WEEK, I HAD INSOMNIA, GAS AND BLOATING, AND MY STOMACH HURTS SOME TIMES, AND I WAS VERY GLAD WHEN I FOUND ABOUT celiac disease IN MY BIOPSY, BUT THE TRUTH IS THAT AFTER 3 MONTHS I DIDNT GET ANY BETTER AND I STARTING TO GO CRAZY, SINCE THIS SITUATION IS GETTING CRITICAL IN MY HEAD, I WOULD LIKE TO WHAT TO DO? RETEST? ENDOSCOPIE CAPSULE? GLUTEN FREE DIET FOR A YEAR? I REALLY COPE WITH ANYTHING AS LONG AS I GET BETTER, NO MATTER WHAT I HAVE TO DO!

THANKS YOU ALL FOR THE ATTENTION

MURILLO

Hi! I also had only Marsh1 on my biopsy and negative blood test. I'm on gluten free and casein free(milk free) diet for 11 months now. I found out that I had SIBO- small intestines bacterial overgrowth (my doctor ordered breathing test for it). It took two antibiotics to clear it out. Then I found out that I have fructose intolerance (again breathing test) which can cause gas and bloating. I can't eat fruit, syrups, honey, jelly. Only berries are aloved. People with celiac disease can have SIBO, fructose intolerance, milk intolerance or casein allergy like me. You can also develop many food intolerancies to corn, soy, eggs which can give you the same symptoms.

Maybe you need to check everything again for the traces of gluten, like tooth paste, mouth wash or medicine.

I gave you just a few points to look at. Maybe somebody will have other ideas.

Good Luck!

[T.H.]

It may help if you could tell us what you have been eating? That might help rule out any accidental gluten contamination so you can make sure you need to look at other options, just in case.

Do you share a house with others who eat gluten?

Do you share cooking pots and pans or utensils with those who eat gluten?

Did you get all new sauces, spreads, condiments when you went gluten free? The old ones are more likely to be contaminated. How about cutting boards? Wooden boards and spoons are usually contaminated.

Do you keep your gluten free food in a separate place?

Do you wash your hands before eating? If you use hand sanitizer instead of soap and water, it won't destroy or eliminate the gluten.

Some things to look for that you might have missed:

- shampoo needs to be gluten free, if you ever rinse it and some gets into your mouth

- anything on your lips needs to be gluten free, like chapstick...or the lipstick/chapstick of anyone who kisses you. Kissing someone who eats gluten, if they haven't brushed their teeth, can keep you sick.

- lotion needs to be gluten free, if you chew on your nails/ lick your fingers after eating, that sort of thing.

- do you work/live near construction? a lot of the dust can have gluten, and if it gets into your mouth, it can make you sick.

[MURILLO]

Hy guys,

thanks for your attention!

I will tell more about my history and my food habits in order to find out what is going on.

I AM 26 Y OLD AND I HAVE ALREALDY SPENT MORE THAN 50,000 U$ IN THE LAST FOUR YEARS, so im little desperated, sorry for that.

1)symptons: for the last 4 years

Fatigue chronic, gas (eructation even in the morning with nothing in the stomach), flatulence, hard bloated stomach, diarrhea (it is not every day, but the consistency of my stools is always weak, no matter what i eat)

eventual stomachache, i wake up in the morning very exhausted, my mind is dizzy,acne ,dandruff,

2) what i eat?

in the morning: fruits: apple, pears, bananas, etc; coffe (pure), cheese bread, cereal bar (non-gluten),

lunch: meat, rice, beans, vegetables

dinner: same as lunch

i am gluten free for 3 months now, and i try to be casein free too. I DON T EAT SOY EGGS OR CORN, REGULARLY, I HARDLY EVER EAT CHOCOLATE OR SWEAT STUFF

3) MEDICAL EXAMS

i have done endoscopy capsule (found a some ulcer in the intestine), endoscopy and colonoscopy with several biopsy, the endoscopy ones showed marsh 1 again (i just got the result), BLOOD TESTS FOR CELIAC ALL NEGATIVE, and every other blood test is ok, excecp d vitamin that is a little low and i m taking some shots.

4)ANSWERING QUESTIONS:

Do you share a house with others who eat gluten?yes, i share a house with others who eat gluten, or even worse, i have to eat outside where i cannot trust because they dont know how bad is CC.

Do you share cooking pots and pans or utensils with those who eat gluten?

my mother says she washes everything and i dont take any utensils from others, but i dont have utensils just for my use.

Did you get all new sauces, spreads, condiments when you went gluten free? The old ones are more likely to be contaminated. How about cutting boards? Wooden boards and spoons are usually contaminated.

I DID NOT, i have to pay attention to this subject.

Do you keep your gluten free food in a separate place? yes

Do you wash your hands before eating? If you use hand sanitizer instead of soap and water, it won't destroy or eliminate the gluten. yes with soap and water

i will check for SHAMPOOS AND OTHERS PRODUCTS, to see if they are gluten free

I REALLY NEED TO KNOW WHAT IS GOING ON, I REALLY THINK IS SOMETHING THAT IM EATING THAT IS TURNING MY LIFE UPSIDE DOWN.

I WILL SEE WITH MY GI IF I CAN DO THE BREATHING TEST, AND I WOULD LIKE TO KNOW WHAT I CAN EAT THAT IS SAFE? MEAT, CHICKEN, RICE IS OK? I THINK BEANS CAN CAUSES BACTERIA GROW AND GASES

I DON KNOW HOW TO ELABORATE A FOOD CHART, SINCE MY SINTOMS ARE A CONSTANT, THAT IS, IT S HARD TO IDENTIFY WHEN SOMETHING IS INTOXICATING ME. I CAN SUPPORT ANY TYPE OF DIET, JUST TELL ME HOW LONG I HAVE TO TRY TO SEE THE RESULTS, I TRY TO BE STRICT TO A DIET.

I WILL TRY TO FIX MY GLUTEN FREE DIET AND I GIVE YOU INFO ABOUT THE ONGOING SITUATION.

THANKS FOR YOUR SUPER ATTENTION,

RAONI MURILLO MOLIN

[zimmer]

2) what i eat?

in the morning: fruits: apple, pears, bananas, etc; coffe (pure), cheese bread, cereal bar (non-gluten),

lunch: meat, rice, beans, vegetables

dinner: same as lunch

just to check with you again - your list says "cheese bread." Is that bread made of wheat flour or gluten-free flours?

[Roda]

just to check with you again - your list says "cheese bread." Is that bread made of wheat flour or gluten-free flours?

I'm just going out on a hunch here. My husband's step mother is from Brazil and the cheese bread she talks about is called pao de queijo (I hope I spelled it right). I make is quite often. I even made my recipe for her and she said it tasted very much like what she ate in Brazil. It is usually made from sour manioc starch/flour, milk, oil, eggs and cheese. I make mine out of tapioca starch/flour (which is similar made from the same root but processed differently). The pao de queijo should be gluten free unless there is some cross contamination.

I would try and get stricter at home about the possible cross comtamination. I would venture to say alot of her problems are coming from that.

[eatmeat4good]

Many of your symptoms seem to be fructose intolerance and if the legumes are bothering you it might be lectins. Some people cannot eat fruit high in fructose and some cannot tolerate legumes. Consider these two in addition to the SIBO infection possibility and closely watching you CC. I hope you feel better soon.

[MURILLO]

thanks you guys for the answers,

1)Yes cheese bread is the "pao de queijo" explained just like RODA told us. I will look for CC in every place I know.

2) I WILL START TODAY THE Fructose Intolerance Plan, I think the better way to do it is to use the low FODMAP diet, is that right? do you have a list of foods that are left to eat, considering that i will stick to the gluten-free diet.

3) I will TRY TO CUT THE LECTINS ALSO.... BUT my question is what is left to eat?

Thanks you guys,

'I look forward to help others, just it.