Endoscopy Clarification

[Healthy Girl]

HELLO

Okay so couple months back I FINALLY convinced my primary care to run blood work for celiacs. Came back negative (though she did not run all the tests). She gave me a referral to see a GI doctor, but there was a 5 month wait.

I decided w/ the pain I was having that I needed to try something sooner. Went wheatfree after reading about this and falling into almost all the symptoms. It has been 2 months and I am feeling so much better. I have done muscle testing thru a alternative doctor and I have been told to avoid wheat, oats, sugar, soy, dairy, corn. I am being treated thru her and my health has improved tremendously. I am being treated for candida, and the more we work on things, the more intolerant to wheat I seem to be. I have had a couple slip ups and was EXTREMELY sick (more than before going wheat free). Again, I seem to fit the celiac "poster child" since my early youth!!

Yesterday, I went for blood work for my hypothryoid (which is also improving!!), and mentioned to her that I removed wheat and feel soooo much better. She was happy, but angry that I did this on my own. I explained that I was feeling so sick and could not wait to see the GI--my life was on hold due to my symptoms. She said she still wants me to go get an scope for celiacs. I explained that it would come out negative due to not eating wheat. She said that was a myth (UGGHH!!) She is insisting if I had celiac it would come back positive no exceptions, and even called the GI doctors office and they said the same thing.

Can someone advise me to a medical article or something that I can show my doctor? Or should i just ignore them both? I do need to regularly monitor my thyroid with her, and am afraid that going against her on this may be a BIG issue. Perhaps maybe I should seek out a new doctor?

AMY

[cruelshoes]

There are lots more, but I am on my way out the door. Hope this helps.

Open Original Shared Link

  Quote

Are you scheduled for a biopsy? Are you eating gluten?

Any changes in your diet can affect the accuracy of your biopsy results. It is necessary for you to be eating gluten every day for at least 4-8 weeks before the procedure. If you are scheduled for a biopsy and are not eating gluten, talk to your doctor about what is necessary to obtain accurate results. If you have a biopsy and have eaten gluten only a short time before the test, you and your physician will not know if a negative test result is accurate or due to your diet.

[happygirl]

"A gluten-free diet should not be started until all diagnostic tests are completed, as the withdrawal of gluten can change test results" from: Open Original Shared Link

"All diagnostic tests need to be performed while the patient is on a gluten-containing diet." from the NIH Consensus Statement on Celiac Open Original Shared Link

"Before being tested, one should continue to eat a regular diet that includes foods with gluten, such as breads and pastas. If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if celiac disease is actually present." Open Original Shared Link

"A person seeking preliminary diagnosis of celiac disease must be consuming gluten. " Open Original Shared Link

"It is important to continue eating a normal, gluten-containing diet before being tested for celiac." Open Original Shared Link

These are all highly respected sites from highly respected groups/doctors. Please share this info.

[Healthy Girl]

Thanks for the info.

I hope she will be willing to take this info.....she was pretty stern and believed that you did not have to be eating gluten!

I guess another way of looking at is that I won't be wasting a trip to the GI doctor---I already now know he is not up on celiacs and he would not be a good fit for me!!

All I know is I have never felt this good in my whole life---I am not going back to eating gluten for a test to prove that may/may not show true results.

Perhaps I should try entrolab??

Thanks again.

Amy

[Cynbd]

You can even go to Mayo Clinic's website and they will tell you not to go gluten free before biopsy.

Open Original Shared Link

My GI doctor told me the same thing -- that I didn't have to go gluten free for accuracy. Five months later when I finally had my endoscopy (just before he knocked me out) he asked me what I thought he would find.... I told him "nothing" because I had been gluten free for the past 5-6 months. He asked me where I heard that, I told him "internet research" ... he rolled his eyes and said "oooohhh the internet". What a jerk.

Needless to say, it was a negative biopsy. There was scalloping but no noted damage. (I also had positive blood work, but GI said it was inconclusive)

Getting my life back by the amazing improvements with the diet is enough for me!

[Healthy Girl]

Oh I know exactly what you mean with the look !!! It is just frustrating that they don't know all the facts, but if you question them they get irritated! Again, I feel great, so I guess that is enough for me!!

[pinkscooby6]

  Healthy Girl said:

HELLO

Okay so couple months back I FINALLY convinced my primary care to run blood work for celiacs. Came back negative (though she did not run all the tests). She gave me a referral to see a GI doctor, but there was a 5 month wait.

I decided w/ the pain I was having that I needed to try something sooner. Went wheatfree after reading about this and falling into almost all the symptoms. It has been 2 months and I am feeling so much better. I have done muscle testing thru a alternative doctor and I have been told to avoid wheat, oats, sugar, soy, dairy, corn. I am being treated thru her and my health has improved tremendously. I am being treated for candida, and the more we work on things, the more intolerant to wheat I seem to be. I have had a couple slip ups and was EXTREMELY sick (more than before going wheat free). Again, I seem to fit the celiac "poster child" since my early youth!!

Yesterday, I went for blood work for my hypothryoid (which is also improving!!), and mentioned to her that I removed wheat and feel soooo much better. She was happy, but angry that I did this on my own. I explained that I was feeling so sick and could not wait to see the GI--my life was on hold due to my symptoms. She said she still wants me to go get an scope for celiacs. I explained that it would come out negative due to not eating wheat. She said that was a myth (UGGHH!!) She is insisting if I had celiac it would come back positive no exceptions, and even called the GI doctors office and they said the same thing.

Can someone advise me to a medical article or something that I can show my doctor? Or should i just ignore them both? I do need to regularly monitor my thyroid with her, and am afraid that going against her on this may be a BIG issue. Perhaps maybe I should seek out a new doctor?

AMY

My doctor gave me a handout from uptodate.com. it is a site geared for doctors, and in the article it clearly said that if you had already cut out gluten from your diet, than the tests would come back negative. So you should refer your doctor to this article, and if she just doesn't get it, you should switch doctors, one who actually knows what he/she is talking about.

[nikky]

  Healthy Girl said:

HELLO

Okay so couple months back I FINALLY convinced my primary care to run blood work for celiacs. Came back negative (though she did not run all the tests). She gave me a referral to see a GI doctor, but there was a 5 month wait.

I decided w/ the pain I was having that I needed to try something sooner. Went wheatfree after reading about this and falling into almost all the symptoms. It has been 2 months and I am feeling so much better. I have done muscle testing thru a alternative doctor and I have been told to avoid wheat, oats, sugar, soy, dairy, corn. I am being treated thru her and my health has improved tremendously. I am being treated for candida, and the more we work on things, the more intolerant to wheat I seem to be. I have had a couple slip ups and was EXTREMELY sick (more than before going wheat free). Again, I seem to fit the celiac "poster child" since my early youth!!

Yesterday, I went for blood work for my hypothryoid (which is also improving!!), and mentioned to her that I removed wheat and feel soooo much better. She was happy, but angry that I did this on my own. I explained that I was feeling so sick and could not wait to see the GI--my life was on hold due to my symptoms. She said she still wants me to go get an scope for celiacs. I explained that it would come out negative due to not eating wheat. She said that was a myth (UGGHH!!) She is insisting if I had celiac it would come back positive no exceptions, and even called the GI doctors office and they said the same thing.

Can someone advise me to a medical article or something that I can show my doctor? Or should i just ignore them both? I do need to regularly monitor my thyroid with her, and am afraid that going against her on this may be a BIG issue. Perhaps maybe I should seek out a new doctor?

AMY

grrr some doctors are so clueless, doesnt it just do your head in. If your not eating gluten then your body isnt reacting so the damage cant be done therefore the scope will be negative.. geez what is so hard for them to understand. If she continues to say that being gluten free isnt an issue you need a new doctor. Some doctors have just lost sight of good old fashioned listening.

[pele]

I love this forum!!! Doctors, I don't love so much.

I agree with the last few posts, yes, you need a new doctor. Don't we all?

I read somewhere, I think on Dr. Kenneth Fine's website, that the best diagnostic tool is a gluten-free diet. If you feel better, there you are.

[babygirl1234]

yeah i know sometimes i think that doctors want to do what they want and it makes me mad when you have to keep telling them that something hurts just to have them do something grrrrrrrrr

[Healthy Girl]

Thanks Everyone.

This website is great!!! I have cancelled my appt with the GI, and I will start the process of looking for another primary care. I appreciate everyones help on this matter.

AMY

[happygirl]

Contact a local Celiac support group and ask for doctors that their members use.

[gfp]

  Quote

I removed wheat and feel soooo much better. She was happy, but angry that I did this on my own.

So you need to ask her whatever you don't eat?

Lets say you had dental work and stopped eating chips because they were hurting ... do you need to ask her permission?

  Quote

I explained that it would come out negative due to not eating wheat. She said that was a myth (UGGHH!!)

If it was a myth then why should celiacs not eat gluten? Isn't the idea the villi will mend?

Firstly a biopsy is never reliable as a negative, they don't test everywhere let alone 1/1000th the area of the intenstine so its easy to miss.

The longer without gluten the more repair the less chance they find a damaged area.

[Betty in Texas]

Do you really think the GI drs care if it is postive are negtive they only care that they will be payed either way. If they cared they would try to read and learn more about it because they know very little about celiac and don't act like they want to learn any thing about it . They sure don't want us telling them anything because that makes them look stupid. They could be reading the same things that we read and learn about it but I don't think they want to because there is no medication to give so there goes there perks.

[nikky]

  Betty in Texas said:

Do you really think the GI drs care if it is postive are negtive they only care that they will be payed either way. If they cared they would try to read and learn more about it because they know very little about celiac and don't act like they want to learn any thing about it . They sure don't want us telling them anything because that makes them look stupid. They could be reading the same things that we read and learn about it but I don't think they want to because there is no medication to give so there goes there perks.

I think that is too true, many doctors have lost sight of patient care which is why im glad that here in the uk hospitals are trust and therefore government run meaning doctors have to at least try every possible avenue, and you can get as many other opinions as you like, free of charge (NHS).

[dollamasgetceliac?]

  nikky said:

grrr some doctors are so clueless, doesnt it just do your head in. If your not eating gluten then your body isnt reacting so the damage cant be done therefore the scope will be negative.. geez what is so hard for them to understand. If she continues to say that being gluten free isnt an issue you need a new doctor. Some doctors have just lost sight of good old fashioned listening.

Hi I am new to all the symptoms, but in your list of med. conditions you mention shoulder pain, i have that too, it is getting better on my gluten-free diet but not gone. is this related?Do you have a dr.s quote.

I do not know how I will hear from you about this since I am sidetracking i will start new thread. ofcourse my doctor said to use a hot compass

[AndrewNYC]

You're making a big to do about a non issue. The chances are good that even if you eat gluten and get scoped that your test will come back negative. Eat it, don't it, it makes no difference. If it feels better to not eat it then don't.