Mysteriously Sick

[rwygle1]

Hello!

I am a 21 year old female who has been having health problems from the moment I was born. Within the past few years (since I've entered college) I have progressively gotten worse. I've had an emergency appendectomy and tonsillectomy within the same year. After bouncing from doctor to doctor I was told that I may have a condition known as Celiac Disease.

To make a long story short I put myself on the diet and had wonderful results... until one month when I began getting sick again. At this point I took myself off of the diet (felt absolutely terrible and had all symptoms return with much force) and took myself to a doctor to finally perform the needed tests.

I was absolutely convinced that I had it...

However,

My biopsy showed a case of colitis and a large amount of swelling in my large intestine. My doctor also said that my blood tests were normal (he specified that my thyroid showed no abnormality and that my anti bodies were not indicative of someone who has Celiac disease. He wasn't at all worried that I was still complaining of pain in my side a week after the procedure...SOOOO

What now??

I know I get sick off of gluten...corn...soy lecithin and maltodextrin...I know my side hurts like hell all the time. I know I am constantly fatigued...have leg pains...light cycles...migraines...mental confusion...gum bleeding...bruising...abdominal swelling...bladder frequency...infections...constipation...diarrhea...and all the other nasty stuff that accompanies Celiac disease...

But I have no diagnosis to support my return to school.

So my questions are as follows:

Should I continue to see this doctor and demand more tests? If so...what tests should I ask for?

Should I switch doctors within the same specialization?

Should I see new doctors about other symptoms (ex: go to a urologist...endocrinologist's)?

I'm stuck because I took a medical withdraw from my university because I was so ill. I really want to return in a month, and I was hoping to have some concrete knowledge on what is going on with me so that I will be able to complete my next semester without hospitalization.

Can anyone help me out with some useful information???

It would be greatly appreciated.

Thanks~

R

[Nantzie]

If you had already been gluten-free, it's almost a guarantee that your tests would come back negative. In order to get positive tests, even if you have celiac, you had to have been eating the equivalent of four slices of wheat bread a day for four months. Even then, the damage is patchy AND microscopic, so there would still be a good chance of them missing the sites that have damage and inadvertantly biopsying undamaged areas.

My guess would be that you may have been getting some hidden gluten when you started getting sick again. OR, it could have been another intolerance such as soy, dairy, eggs, corn, etc. coming to the forefront.

Sorry you've been feeling badly. My suggestion would be to go back to gluten-free. It could be that something you're eating has gluten in it that you're not aware of. Even shampoos and other personal care products have more than enough gluten in them to make someone with celiac sick as a dog. Happens all the time here.

Nancy

[daffadilly]

When you are on a gluten free diet your blood test will not be positive, usually. (depends on how long you were on the diet and how stict you were with it...)

you certainly have the signs of celiac, especially with the improvement on the diet. What is probably going on now with the blood test being negative is that you were on the diet long enough to give your immune system a little break and are not making a lot of antibodies.

the pain in the side is a common complaint of people with celaic/gluten intolerance.

If I were you I would quit eating gluten, unless you want to get sicker; and unless you want to eat it long enough to get a positive blood test. Also with the blood test they have to run all the tests and know what they are doing at the lab etc.

I would spend $369.00 to get the full panel of testing from enterolab.com That is the test for gluten sensitivity, casein (dairy) and the gene test. The stool test for the gluten sensitivity is supposed to be accurate up to almost a year after being on the gluten free diet. To me the gene test (cheek swab) tells the real story. If you have the genes & you have health issues, you need to be gluten free. You can order this on the internet and you do not need a doctor's prescription etc.

Is there a reason that you need a diagnosis for college?

[Guest cassidy]

People have already covered the testing aspect and the fact that if you felt better on the diet you need to stay on it.

It sounds like you just need a note for school and then you can get back on your way. Couple of ideas, could you get a note from the original doctor that said you have celiac? Even if you have to go out of your way to track him down?

My primary care doctor ordered the blood test which was negative. I went back in after going on the diet and told him how much better I felt and he said he was sure that I had it. He wrote me a note for work so that I could get special food on business trips. So, some doctors understand that even if you don't have positive test results, a positive dietary response means that you have celiac. I don't know where you live but maybe someone here lives close and has a good doctor that would believe the dietary response. Also, if you just went to a new doctor and said you didn't have a doctor in the area but you need a note because you have celiac (and leave out the lack of positive test results) then you might just be able to get a note. Since you are trying to go BACK to school I don't think that would be a hard note to get. Getting a note to get you out of school or on disability or something that if you were faking you would be taking advantage of the situation would be a harder note to get.

I would go back on the diet and give it several weeks. After you eliminate everything you know you can't eat for a while I would see how you feel. If you still have some symptoms at that point that you know aren't due to not following the diet then I would try to figure out what is causing those symptoms. If you don't get the celiac symptoms out of the way then it will be confusing to figure out what is left and what might be going on.

[rwygle1]

Thanks so much for all the replies everyone! Your advice was greatly appreciated. These message boards have changed my life.

In response to a few responses:

I need the doctor's note for a few reasons:

1. my parents are convinced that I am not sick...and that I am just "stressing myself too much..."?!?!?!

2. I took a medical withdraw from school and now my dad is hounding me to seek all possible routs of financial refund.....refunds basically required a doctor saying that I am telling the truth...!??!?! (as if the symptoms aren't proof themselves)

3. I suffer from horrible fatigue alllllllllllllll the time...(perhaps I was still getting a little bit of gluten...) and thought it would be nice that if...and when I got sick during school I wouldn't get penalized so quickly...

and on a side note...

--> is metamucil, the coarse milled original texture (powder), safe? I read that it is gluten free but am not sure if it contains corn or not. Corn is poison to me.

SOO, one can be egg intolerant as well? I eat so many eggs its scary. Can anyone who suffers from this intolerances give me some examples of signals to watch for. I know I get terrible gas from eggs, but I thought that it was normal.

My diet is so scarce right now. My variety has been limited to fresh fruit, vegetables and fresh meats...and tons of salt and some McCormick garlic spices. When I first got on this diet I dropped close to 17 pounds. I'm a little worried that I won't be able to eat anything eventually.

Any extra info would be great!

Thanks

~r

[oceangirl]

Thanks so much for all the replies everyone! Your advice was greatly appreciated. These message boards have changed my life.

In response to a few responses:

I need the doctor's note for a few reasons:

1. my parents are convinced that I am not sick...and that I am just "stressing myself too much..."?!?!?!

2. I took a medical withdraw from school and now my dad is hounding me to seek all possible routs of financial refund.....refunds basically required a doctor saying that I am telling the truth...!??!?! (as if the symptoms aren't proof themselves)

3. I suffer from horrible fatigue alllllllllllllll the time...(perhaps I was still getting a little bit of gluten...) and thought it would be nice that if...and when I got sick during school I wouldn't get penalized so quickly...

and on a side note...

--> is metamucil, the coarse milled original texture (powder), safe? I read that it is gluten free but am not sure if it contains corn or not. Corn is poison to me.

SOO, one can be egg intolerant as well? I eat so many eggs its scary. Can anyone who suffers from this intolerances give me some examples of signals to watch for. I know I get terrible gas from eggs, but I thought that it was normal.

My diet is so scarce right now. My variety has been limited to fresh fruit, vegetables and fresh meats...and tons of salt and some McCormick garlic spices. When I first got on this diet I dropped close to 17 pounds. I'm a little worried that I won't be able to eat anything eventually.

Any extra info would be great!

Thanks

~r

r

Hi and welcome.

I'm sorry about your food situation and I don't know about the metamucil. Like you, I react to EVERYTHING it seems and I have been gluten-free for about 6 months now. I would continue to just eat fresh meats, fish, shellfish- if you can- fruits and veggies for awhile. Perhaps stop the eggs. Then, ever so SLOWLY, one thing at a time, try putting something back in. I am gluten, corn, soy and dairy free currently. I recently cut out nightshade veggies and had a very positive response. Like you, however, the food options are thinning! I am hoping to try some cheddar cheese when I get up the nerve and see if I react to that. I had one stretch of 8 GOOD DAYS last week before something set me off again! I am afraid of anything new, which is an awful way to feel about eating. And I don't need to lose any weight either so my heart goes out to you! Have you tried eliminating dairy? Just know it can be a long slog and you might need to keep excavating for other intolerances. Keeping a food journal with how you feel on that day may help. It seems cumbersome but it soon becomes habit.

Good luck and feel better!

lisa

[BRUMI1968]

You said tons of salt. Do you crave salt?

I did some looking around, and found that salt cravings can be:

zinc deficiency

mineral deficiency

habit

I don't know what kind of salt you're eating, but you want to stick with sea salt or Himalayan Crystal salt. They have all the minerals in tact, whereas table salt strips the minerals. If you have a mineral deficiency, you're making it worse eat table salt.

Lastly, you should have your adrenals checked. You could have Addison's disease, or some other adrenal problem...this would influence your desire for salt as well. AND..it's the perfect reason to be tired all the time.

Good luck.

[loraleena]

I echo all the advice above. If you eat eggs all the time you could definitely have created an intolerance. In addition to adrenals please get your thyroid tested again. Most likely your doc only tested the TSH which is a worthless test. There is a whole panel of tests you should get. The most important being the Thyroid Peroxidase antibody test. This tests to see if your body is making antibodies against your thyroid. This is called hashimotos thyroiditis and is very common in people with gluten issues. I have it mysel. The only test that showed anything was that one. Good luck!

[rwygle1]

Once again thanks for all the comments and concern...

I am going to try switching salts...and when I return to my doctor in a few weeks I am going to be persistent about new tests...I have a cat scan tomorrow which will probably yield similar...and worthless...results....

In response to Lisa~~

...I've noticed when my diet was rather limited that after eating too many foods with sulfite's in them I would have a reaction. I have also read that some people have reactions to casein and sesame. I am currently experimenting with these now...

...even the order I eat things in can sometimes make a difference...(ex. I try to eat my fruit after my protein...I had a month where eating fruit before gave me a terrible stomach ache...or at least that is what I thought)

When I first placed myself of this diet, I tried eating more natural foods (foods that have NOTHING added...no garlic...no onion powder..no nothing...), skipping ALL of my pills (no vitamins...no supplements...I think, though am not sure, that a lot of the culprits were the medications I was taking for my ailments...ibuprofen, Lexapro etc), and eating in almost the exact same schedule

I had incredible results...until a few months ago...in retrospect I think I may have been reacting to some frozen food that was dusted with corn starch. ( I didn't know it at the time)

sooo maybe some of my mistakes can help you find new answers....

if not...gooood luck and thanks again

~~R

[Shalia]

Hello!

I am a 21 year old female who has been having health problems from the moment I was born. Within the past few years (since I've entered college) I have progressively gotten worse. I've had an emergency appendectomy and tonsillectomy within the same year. After bouncing from doctor to doctor I was told that I may have a condition known as Celiac Disease.

To make a long story short I put myself on the diet and had wonderful results... until one month when I began getting sick again. At this point I took myself off of the diet (felt absolutely terrible and had all symptoms return with much force) and took myself to a doctor to finally perform the needed tests.

I was absolutely convinced that I had it...

However,

My biopsy showed a case of colitis and a large amount of swelling in my large intestine. My doctor also said that my blood tests were normal (he specified that my thyroid showed no abnormality and that my anti bodies were not indicative of someone who has Celiac disease. He wasn't at all worried that I was still complaining of pain in my side a week after the procedure...SOOOO

What now??

I know I get sick off of gluten...corn...soy lecithin and maltodextrin...I know my side hurts like hell all the time. I know I am constantly fatigued...have leg pains...light cycles...migraines...mental confusion...gum bleeding...bruising...abdominal swelling...bladder frequency...infections...constipation...diarrhea...and all the other nasty stuff that accompanies Celiac disease...

But I have no diagnosis to support my return to school.

So my questions are as follows:

Should I continue to see this doctor and demand more tests? If so...what tests should I ask for?

Should I switch doctors within the same specialization?

Should I see new doctors about other symptoms (ex: go to a urologist...endocrinologist's)?

I'm stuck because I took a medical withdraw from my university because I was so ill. I really want to return in a month, and I was hoping to have some concrete knowledge on what is going on with me so that I will be able to complete my next semester without hospitalization.

Can anyone help me out with some useful information???

It would be greatly appreciated.

Thanks~

R

Did they test you for kidney stones?

I ask because *I* have them. I thought I was getting glutened and I couldn't figure out WHERE FROM. It was driving me BONKERS. And my only symptoms were a vague pain in my right side and diahrrea from hell.

Finally, a doctor did a CT scan and found out I have multiple kidney stones in my right kidney that are refusing to move. So, maybe that's your problem? It's worth looking at? I now know I'm gluten sensitive AND have kidney stone problems. (Eating a gluten filled candy bar that I *thought* was gluten-free only proved that to me. I'm definately gluten sensitive. But the pain and the recent D was from my kidney being out of whack.) (I think "out of whack" is the official medical term.)

Remember, not all symptoms are celiac.

[daffadilly]

Quit eating eggs & take a B12 everyday.

check to see if you have a problem with other lectin foods

Lectins in Foods “Consider the group most likely to be causing a problem:

Deadly nightshades including tomato, potato and eggplant

Glutens found in wheat, rye, barley, malt, and oats

Legumes, all beans including soy and peanut

Dairy including all milk products, milk, cheese, cottage cheese, yogurt, kefit

Eggs”

Open Original Shared Link by Krispin Sullivan 2-28-2000