Frustrated And Lost.

[Jesminda]

Hello,

I am 22 years old. I have now had a colonoscopy,an upper endoscopy, stool samples, and blood tests trying to figure out what is making me so miserable all the time. According to the doctor all of my biopsies, stool samples, and blood tests have come back normal, but I have not personally seen the results or know what he has tested for. My symptoms seem to be getting worse and that's why I don't understand why all my test results are coming back negative and normal.

I went dairy free for 2 weeks and my symptoms stayed the same.

symptoms:

Diarrhea/constipation for almost a year

I will wake up sometimes to have a bowel movement and then feel sick all day which leads to not eating which leads to weight loss (5lbs without trying)

Mucus in stools

Pain underneath my sternum

Bloating

Fatigue especially after eating or bowel movement

swollen tongue since i was little

migraines and neck pain since highschool

cramping in area where bladder is, crippling to the point i dont want to stand straight up

body aches and chills after eating some foods

occasional foggy vision after eating

Some extreme instances:

-Ate chinese (chicken): body aches, chills, light headed

-Ate pizza and salad: felt sick (nauseous), very light headed, foggy vision

-When I was dairy free I ate a breadstick for dinner because we were having pizza and about 2 hours later i had heartburn, extreme cramping under sternum which moved to my sides and to the front where my bladder is, felt extremely cold.. next day still cramping and lots of mucus in stool, next day constipated with extremely tender abdomen

-Ate crackers, cheese, and meat at a party... extreme cramping in area of bladder

-Ate chinese, got a headache while eating, seemed to increase phlegm in nose and throat, extreme fatigue, cramping, body aches

I just recently started taking notes on things and trying to see what i eat when I have reactions.

Is this celiacs disease?

I am just gluten intolerant?

Please help! I've been trying to find a story like mine and I just cant seem to find one so I got up the courage to post.

[kareng]

Get copies of all the labs and the procedure reports and pathology reports (biopsy report).

Its amazing how many people have reported that they were told they were negative but when they read the report they found out they were positive.

Its also possible it isn't Celiac. You could be gluten intolerant which wouldn't show up on most of these tests. You don't need a doctor's permission to try being gluten free. IF it helps, there's your answer.

[Bubba's Mom]

I agree 100% on getting copies of your tests results. You'd be surprised how many times people have tests that show they have a problem and the Dr. dismisses it.

Ask your Dr. if a celiac blood panel was done. If they didn't test for it (most Dr.s still think of Celiac as being rare)they won't find it.

You could also be gluten intollerant? Very hard to find in a test. The best way to know is to eat completely gluten-free.

Your symptoms sure sound like they could be gluten responses.

[Marilyn R]

Hi Jesminda,

I was so sick for so long, and none of the doctors I saw helped.

I finally went on a simple diet of bananas, rice and apples for a few days. I started feeling better. Then I had a half a piece of toast and got very ill again. Next I tried plain potatoes.

My best advice is to try to eat very simply with minimum ingredients and monitor how you feel.

You may already know this, but there is gluten in some soy sauces, and soy allergies/intolerances are not uncommon. Good luck to you!

Do you have a crockpot? That helps cooking simple foods inexpensively.

[Jesminda]

Hi Jesminda,

I was so sick for so long, and none of the doctors I saw helped.

I finally went on a simple diet of bananas, rice and apples for a few days. I started feeling better. Then I had a half a piece of toast and got very ill again. Next I tried plain potatoes.

My best advice is to try to eat very simply with minimum ingredients and monitor how you feel.

You may already know this, but there is gluten in some soy sauces, and soy allergies/intolerances are not uncommon. Good luck to you!

Do you have a crockpot? That helps cooking simple foods inexpensively.

I am going to the GI doctor on Tuesday to discuss the next step and I'm thinking going gluten free is the best idea. If that's the decision I might need some ideas for food! I'm a slightly picky eater (which may have to change) and I sometimes feel like i need protein to get the energy to keep going... suggestions?

[eatmeat4good]

Being sick with Celiac somehow changed my taste and my son's too. After being gluten free foods started to taste good again and foods we didn't like before are suddenly tasting wonderful. Your tastes may change for the better when you go gluten free. Protein is excellent for Celiac's and it promotes healing of all the tissues that need to heal. I eventually went Paleo and find that I thrive on meat, veggies, fruit and nuts...no grains. I experimented for a long time...but grains do not work for me. I am not saying this will happen to you, just assuring you that protein is fine and beneficial for you when you go gluten free. If you are trying to get tested though, you have to keep eating gluten until testing is done. I hate to say that because I think your dietary elimination and challenge are telling you to go gluten free. Glad your appt is soon. Hope they don't schedule a biopsy for months down the road. It appears you will feel so much better without gluten. Hope you get to drop it soon.

[mushroom]

When my nutrionist in her preliminary questionnaire asked me what food I craved, I thought about it and thought about it, and finally decided that what my body really craved was protein!. I could care less for the gluteny things, but I needed cheese, and yogurt, and chicken, and beef and salmon and, being a Kiwi, lamb!!

[Robert M.]

Hello,

I am 22 years old. I have now had a colonoscopy,an upper endoscopy, stool samples, and blood tests trying to figure out what is making me so miserable all the time. According to the doctor all of my biopsies, stool samples, and blood tests have come back normal, but I have not personally seen the results or know what he has tested for. My symptoms seem to be getting worse and that's why I don't understand why all my test results are coming back negative and normal.

I went dairy free for 2 weeks and my symptoms stayed the same.

symptoms:

Diarrhea/constipation for almost a year

I will wake up sometimes to have a bowel movement and then feel sick all day which leads to not eating which leads to weight loss (5lbs without trying)

Mucus in stools

Pain underneath my sternum

Bloating

Fatigue especially after eating or bowel movement

swollen tongue since i was little

migraines and neck pain since highschool

cramping in area where bladder is, crippling to the point i dont want to stand straight up

body aches and chills after eating some foods

occasional foggy vision after eating

Some extreme instances:

-Ate chinese (chicken): body aches, chills, light headed

-Ate pizza and salad: felt sick (nauseous), very light headed, foggy vision

-When I was dairy free I ate a breadstick for dinner because we were having pizza and about 2 hours later i had heartburn, extreme cramping under sternum which moved to my sides and to the front where my bladder is, felt extremely cold.. next day still cramping and lots of mucus in stool, next day constipated with extremely tender abdomen

-Ate crackers, cheese, and meat at a party... extreme cramping in area of bladder

-Ate chinese, got a headache while eating, seemed to increase phlegm in nose and throat, extreme fatigue, cramping, body aches

I just recently started taking notes on things and trying to see what i eat when I have reactions.

Is this celiacs disease?

I am just gluten intolerant?

Please help! I've been trying to find a story like mine and I just cant seem to find one so I got up the courage to post.

Hi, I always tell people I meet who are having weird unexplained symtoms to try Gluten free for a few days. It is not bad for you and in fact is much healthier than having doctors throw endless drugs at you hoping something will work. If you try the diet, keep it simple like another person mentioned. choose items with only one or two ingredients and make sure it says gluten free. For example, last night I bought chicken breasts and dipped them in egg whites and coated with crushed gluten free corn chex and baked...it was delicious, healthy and best of all gluten free. good luck.

[Di2011]

I am going to the GI doctor on Tuesday to discuss the next step and I'm thinking going gluten free is the best idea. If that's the decision I might need some ideas for food! I'm a slightly picky eater (which may have to change) and I sometimes feel like i need protein to get the energy to keep going... suggestions?

If you are like me you might be "picky" because it is a problem.

I hid under beds at boarding school to avoid breakfast (cereal/toast) and never ate breakfast since. I didn't "like pasta" and rarely ate the bread/bun at meals etc.. but

give me a chinese (soy sauces etc is gluten but less of) rice etc I would chow down.

Can you describe your "picky eating"???

[Jesminda]

My picky eating is more... I don't like to eat fruits and veggies... Especially veggies, I like salad but I usually prefer chicken in it. I'm the kind of person who finds something I like and satiate on it and eat the same thing for weeks until I've grown sick of the taste haha. Any suggestions for good gluten free easy recipes? I'm all about quick and on the go and am not very good at cooking :/

[Marilyn R]

I'm the kind of person who finds something I like and satiate on it and eat the same thing for weeks until I've grown sick of the taste haha. Any suggestions for good gluten free easy recipes? I'm all about quick and on the go and am not very good at cooking :/

OMG. I was so surprised to read this, it sounds exactly like what I do, and always have done. My difference is that I like fruits and veggies.

Do you have a crock pot? What foods do you like? Sometimes the flavor of cooked vegetables can be so much more palatable than fresh raw, especially when slow cooked with meat.

I like a simple white fish fillet rubbed with horesradish and seared in a non-stick pan preheated with olive oil. That's great served over greens or mashed potatoes and a simple dressing made of olive oil and a squeeze of citrus juice.

I'm into soup. But I make them by scratch and freeze portions so I have food for lunches (and sometimes breakfast). I have a little thermos that I carry in case I don't have microwave access.

There's a few threads that might help in the recipes section...check them out, they cover breakfast, lunch and dinner.

For simple breakfast, microwave 2-3 links of Jones's Rice Sausage and microwave a scrambled egg. I don't know if that appeals or not...

[Marilyn R]

I'm a slightly picky eater (which may have to change) and I sometimes feel like i need protein to get the energy to keep going... suggestions?

I like a rice cake with peanut butter for a quick protein snack. Rice cakes are good with sliced or shredded cheese and a bit of pepper pepper too. (Microwave or toast until the cheese melts.)

For breakfast, you can have an Elvis Ricecake. Thats's a ricecake spread with peanut butter, sliced bananas and a drizzle of honey. I don't like double deckers (with rice cakes) but some people do.

[mushroom]

Ricecakes also go great with Nutella spread