If You Were Me...what Would You Do?

[Greeneyes4950]

Hi, i'll try to make this brief...if possible.

For the last two years, i have been having numerous health problems that my doctor labeled as:

fatigue (almost two years ago, when i couldn't stay awake in my classes, and was falling asleep at 6 pm) i still deal with this, though it isn't as bad. i can easily sleep 11-12 hrs a night if i don't set an alarm. my thyroid, lyme, and kidney blood test came back normal or negative.

IBS (earlier this year) because of alternating diarrea and constipation, bloating, stomach pain, as well as presence of hemorrhoids. She did no testing on this, and told me i had "IBS like symptoms" and to simply "stay away from trigger foods" which i guess i was supposed to find out for myself.

Syncope and Collaspe (when i blackouted at school and fell on my face, in march 07), at the hospital EKG's ruled out a heart problem, and my blood and urine lab work came back normal. my doctor a month later, had me tested for diabetes (it runs in my family) but the test was negative. all other blood tests came back normal. I suspect that it was in reality a hypoglycemic attack, since i had been extremely hungry right before it happened (despite having had breakfast about 3 hrs before) i had a lab to get to, and simply made the wrong choice to just eat after lab was over. before they tested my blood sugar at school they gave me orange juice, and resultantly when they gave me a blood glucose test about 15 minutes later it was about 72.

My doctor decided instead that the cause was that i possibly had an inner vein problem, where blood pools in my legs. there was no testing done to confirm this.

lactose intolerant ( beginning around fall 05, and has been becoming worse)

secondary amenorrhea (since...i was 12), ultrasound in oct 05, showed no cysts, bloodwork done in april 07 showed slightly elevated FSH levels

When i was describing my symptoms to my doctor, and she said i have IBS, she said "well i don't think it's celiac's disease"

When i got home and researched this, i began to wonder if i do. especcially when you factor in the IBS, lactose intolerance, and other health issues. her major reason for not testing me for it was that i'm not underweight, and haven't had a major weight loss. i have a normal range BMI.

I'm considering getting tested with enterolab, to determine whether i have a gluten intolerance. if i did this i would also had the soy, egg, yeast panel done. Mainly because because any time i eat anything with a high content of soy i run a fever and feel disoriented. I have health insurance, but i don't know if my doctor would have the tests run if i asked her to...not to mention my wavering confidence in her as a doctor.

I'm only 20 yrs old, and worry about the steadilly growing list of health problems, to which i'm getting no definitive diagnosis. Not to mention that i worry about have another collapse at school (i'm in my 3rd year of college), as well as how the fatigue and other symptoms are affecting me.

The way i see it, i have three options

1. Talk to my doctor about getting tested for food intolerances.

2. Just pay out out of pocket and have testing done via enterolab

3. Go on a gluten- free, dairy-free, soy-free diet. without getting tested. though i would always wonder if it was neccessary, or if i was missing a egg or yeast intolerance.

If you were me...what would you do?

[Tephie]

Welcome to the board and I would find a new doctor.

Hi, i'll try to make this brief...if possible.

For the last two years, i have been having numerous health problems that my doctor labeled as:

fatigue (almost two years ago, when i couldn't stay awake in my classes, and was falling asleep at 6 pm) i still deal with this, though it isn't as bad. i can easily sleep 11-12 hrs a night if i don't set an alarm. my thyroid, lyme, and kidney blood test came back normal or negative.

IBS (earlier this year) because of alternating diarrea and constipation, bloating, stomach pain, as well as presence of hemorrhoids. She did no testing on this, and told me i had "IBS like symptoms" and to simply "stay away from trigger foods" which i guess i was supposed to find out for myself.

Syncope and Collaspe (when i blackouted at school and fell on my face, in march 07), at the hospital EKG's ruled out a heart problem, and my blood and urine lab work came back normal. my doctor a month later, had me tested for diabetes (it runs in my family) but the test was negative. all other blood tests came back normal. I suspect that it was in reality a hypoglycemic attack, since i had been extremely hungry right before it happened (despite having had breakfast about 3 hrs before) i had a lab to get to, and simply made the wrong choice to just eat after lab was over. before they tested my blood sugar at school they gave me orange juice, and resultantly when they gave me a blood glucose test about 15 minutes later it was about 72.

My doctor decided instead that the cause was that i possibly had an inner vein problem, where blood pools in my legs. there was no testing done to confirm this.

lactose intolerant ( beginning around fall 05, and has been becoming worse)

secondary amenorrhea (since...i was 12), ultrasound in oct 05, showed no cysts, bloodwork done in april 07 showed slightly elevated FSH levels

When i was describing my symptoms to my doctor, and she said i have IBS, she said "well i don't think it's celiac's disease"

When i got home and researched this, i began to wonder if i do. especcially when you factor in the IBS, lactose intolerance, and other health issues. her major reason for not testing me for it was that i'm not underweight, and haven't had a major weight loss. i have a normal range BMI.

I'm considering getting tested with enterolab, to determine whether i have a gluten intolerance. if i did this i would also had the soy, egg, yeast panel done. Mainly because because any time i eat anything with a high content of soy i run a fever and feel disoriented. I have health insurance, but i don't know if my doctor would have the tests run if i asked her to...not to mention my wavering confidence in her as a doctor.

I'm only 20 yrs old, and worry about the steadilly growing list of health problems, to which i'm getting no definitive diagnosis. Not to mention that i worry about have another collapse at school (i'm in my 3rd year of college), as well as how the fatigue and other symptoms are affecting me.

The way i see it, i have three options

1. Talk to my doctor about getting tested for food intolerances.

2. Just pay out out of pocket and have testing done via enterolab

3. Go on a gluten- free, dairy-free, soy-free diet. without getting tested. though i would always wonder if it was neccessary, or if i was missing a egg or yeast intolerance.

If you were me...what would you do?

[Guest j_mommy]

Yup, I would find a new DR!!!

Personally....I wanted the testing done...I went through my Dr and had the blood tests done! This way atleast you would know and then wouldn't have to do a gluten challenge later if you changed your mind and decided to get tested!!!

[Stargirl*]

I would, if I was you, get tested through Enterolab. Then I would get a new Dr. It sounds like your current Dr is not taking you seriously and would probably poo hoo Enterolab's results anyway.

You could just do an elimination diet but it sounds like you need to know 'for sure' what your dietary issues are. I am the same where my kids are concerned, but am now gluten-free through elimination diet and then gluten challenge. (not pretty!!)

Good luck in finding some answers.

[confusedks]

I would, if I was you, get tested through Enterolab. Then I would get a new Dr. It sounds like your current Dr is not taking you seriously and would probably poo hoo Enterolab's results anyway.

You could just do an elimination diet but it sounds like you need to know 'for sure' what your dietary issues are. I am the same where my kids are concerned, but am now gluten-free through elimination diet and then gluten challenge. (not pretty!!)

Good luck in finding some answers.

Its amazing how similar our stories are. I would try to get another Dr. also but if you can't do that for some reason I would bring a pamphlet on celiac disease from celiac.org I totally understand wanting to get tested and I would recomend doing that because its nice to know for sure. I hope this helps.

Kassandra

[hathor]

I certainly wouldn't trust this doctor. Not everyone with celiac is underweight or has suffered major weight loss. Just browse around the weight forum. Of course, you could give your doctor another chance. Say that you've been researching celiac and have found that only a minority of people present with the previously-believed "typical" symptoms.

You could try eliminating everything Enterolab tests for. See if you feel better. If you do, you can get their tests for confirmation. I went gluten-free, and was already pretty much dairy and egg free to begin with. I did feel better, but then had the tests done to be sure it wasn't a placebo effect. I was surprised to see reactions to soy and yeast, too, never having noticed a problem.

Since the treatment for celiac is by diet, you really don't have to have a doctor's confirmation.

In addition, some believe there is something known as "non-celiac gluten intolerance." This can be those who will ultimately prove to be "celiac" if they continue to eat gluten (i.e., they are being damaged by gluten but there is not yet any observable villi damage or even blood antibodies) or those who are being damaged by gluten in another way. Traditional medical testing for celiac isn't going to pick this up, while Enterolab testing will.

One thing that I notice from your history is that you've been suffering for quite a time and all you've been given is labels for your symptoms. (Have you heard the joke about IBS standing for "I Be Stumped?") You haven't been brought any closer to finding out what is causing your symptoms or how to correct them. It seems like you have been more than patient with your doctor, but she just isn't up to the task.

I do hope you find out what is causing your body to be out of whack. Please write back with what you find if you do go gluten-free, manage to get regular celiac testing, or go with Enterolab. We all learn so much from each other.

[CarlaB]

I would insist on getting the celiac panel. It's a simple blood test, and since your doctor has not found anything else wrong, what has she got to lose in doing this test? Take your dad with you ... the doctor won't try to intimidate him.

I would also get retested by IGeneX for Lyme Disease and ask for a copy of your results. Most labs do not test for all the bands and false negatives are extremely common. Plus, most doctors use the CDC tracking criteria for diagnosis even though the CDC says it is not to be used that way. If there are any Lyme specific bands that are positive, a Lyme specialist would treat for the disease. You can find a Lyme Literate physician (LLMD) by posting on Lame Advertisement in the seeking doctors section.

To illustrate most doctor's ignorance on Lyme Disease, I had a CDC positive test, yet my doctor told me I was negative because she did not know how to read the test. If I hadn't asked for a copy of the results, I would not have found out I had it.

To get tested by IGeneX, call them (Open Original Shared Link) and have them send the test kit to your house. Take it to the doctor and have her do the test. Again, take your dad with you ... it's your turn to intimidate the doctor.

If you have had the bull's eye rash after a tick bite, skip the test and go straight to an LLMD! That is diagnostic on it's own for Lyme Disease.

I wouldn't bother with Enterolab ... they can't tell you anything you can't find out from a dietary challenge.

[Nancym]

Your doctor is ill-informed on celiac disease, you could try to educate her if you think she'd listen. Take a look at "The Gluten File" in my signature.

Your question was, "If you were me", so I'll answer it that way.

Personally I'd get more aggressive about getting answers with my current medical situation. It is your body and your health and you will only get the best health care if you insist and work at it.

But then my nearly 50 years of experience tell me that there's a lot our wonderful medical people still doesn't know, so I also know that it might be up to me to see if there's some way I can control what's happening with me through diet. If I couldn't get the answers through the established routes, I'd do what you're doing, research it myself and be willing to try dietary changes to see if things improve.

In fact, I opted to try the diet first and had such amazing results that then I had the Enterolab tests done and got confirmation. That suited me just fine and it was enough of a change that I realized I had to eat this way from now on.

I adopted a more Paleo philosophy to eating. I figure if we haven't been eating a food for more than 10,000 years we're probably not well adapted to eating it now. It has worked. My health is vastly better.

If the dietary change doesn't help, then I'd go back to the doctors and be persistent but polite, and change doctors if I needed to.

I'd also just go ahead and pay for the tests myself since I know insurance isn't likely to cover them (Enterolab).

[darkangel]

I would insist on getting the celiac panel. It's a simple blood test, and since your doctor has not found anything else wrong, what has she got to lose in doing this test?

I gathered my GI never ran a full celiac panel because he didn't feel my symptoms fit the usual celiac symptoms and insurance wouldn't foot the bill if he couldn't "justify" it. It's only in the past couple of weeks that he's agreed to the full panel of tests because NOW he perceives my symptoms to be atypical for ulcerative colitis - the working diagnosis I've been living with for the past seven years.

[CarlaB]

I gathered my GI never ran a full celiac panel because he didn't feel my symptoms fit the usual celiac symptoms and insurance wouldn't foot the bill if he couldn't "justify" it. It's only in the past couple of weeks that he's agreed to the full panel of tests because NOW he perceives my symptoms to be atypical for ulcerative colitis - the working diagnosis I've been living with for the past seven years.

That is ridiculous! There are so many symptoms of celiac, and so few people that fit the definition of "classic celiac" ... it's no wonder it takes so long to get diagnosed! It's not like it's a really expensive test!

[Greeneyes4950]

Thanks for the replies everyone, it means a lot!

For right now, i've decided to just try a pretty strict diet free from, gluten, soy, dairy, egg and yeast. Just to see if it a makes a difference in my health. Which means just a lot of vegetables, fruits, rice, organic chicken and nuts. Hopefully by the time classes start in the beginning of september, i will notice a difference.

I plan on being tested through enterolab after school starts and all my books and such are paid for. I suppose a part of me just wants to know for sure.

As for my doctor...well, i probably do need a new one. Family and friends have been telling me that for at least a year.