Endocsopy And Biopsy Tomorrow

[amandarowe]

This is my first time posting here.  This is all happening very quickly.  

 

My symptoms:

nausea

diarrhea

feeling of choking/difficulty swallowing

mouth itching/burning

extreme bloating often accompanied by stomach cramping and pains

hives

migraines

night sweats

inability to lose weight

tired and feel like death most of the time

 

I think there are a few more, but I can't use my brain at the moment it seems.

 

I have thought I might have celiac in the past since it was mentioned by my pcp a few years ago.  I was not interested in the invasive diagnosis.  I put it on the back burner and went paleo (not strict) for about a year or so.  I felt better when I ate well but had no support, so i let it go.  Over the past year and a half my symptoms have been much more intense.  It became a major issues after I had shingles 2 summers ago.  

 

I decided a couple of weeks ago to go to the allergist assuming it was just food allergies, since my daughter has severe food allergies and carries an epi-pen.  Nope.  All negative.  Within a week I was in with a GI because the allergist was so concerned about my sx.  I went last week for that appointment and he said he thought it was celiac or reflux.  I have my endoscopy and biopsy tomorrow.  I am scared.  I am worried about the tests and about what they will say.  I don't know if I am more worried about them finding something or not finding anything.  My mother has been telling me I was crazy for over a year now and that she thought it was all in my head.  I have been very emotional the past few days.  A part of me just wants to know what it wrong, but the other part of me is telling me I am crazy just like my mom tells me that I am. All I know is that I have run to the bathroom the past 3 days in row (it is typically just 1-2 times per week) and I feel on the verge of throwing up.  I think that I am just making it worse but worrying about the testing.

 

Will they be able to tell me anything tomorrow? Is there anything he will be able to see while doing the scope?  How long will it take for the results to come back for the biopsy? I have been eating full gluten for well over 6 months in anticipation of being able to get the tests done and getting an accurate diagnosis although I was secretly hoping with would just be allergies, and I wouldn't have to do the scope.  

 

Thanks for listening.  I feel like I am losing my mind and might possibly lose my lunch as well

 

 

[cyclinglady]

Welcome!

Did your PCP run a celiac blood panel? That is usually the first step prior to an endoscopy.

You GI doc may or may not see any damage visually. You may have to wait a week for the biopsy results to come back. You doctor should take up to six samples. Your GI tract is vast and it is easy to miss patches of damage. Confirm with him or her before the procedure starts.

Here is a link to the University of Chicago's celiac website regarding testing:

Open Original Shared Link

There are over 300 symptoms of celiac disease and anxiety is one of them! Relax! I know that it is hard to do. The good news is that you are doing something that is bound to improve your health.

Take care!

[amandarowe]

Thank you so much for your reply.  No they did not do a blood test for celiac.  They only did a cbc.  it was normal. I just went for a quick walk and feel much better.

 

Thank you for the support.  I appreciate it.

[nvsmom]

Ditto everything Cyclinglady wrote, except I think she meant to say take at least 6 samples - more is always better considering the small intestine has the surface area of a tennis court.

 

When they do the blood tests, ask for the tTG IgA, tTG IgG,DGP IgA, DGP IgG, EMA IgA, total serum IgA, and possibly the older and less reliable AGA IgA and AGA IgG tests.

 

This report has some goo info on the tests which starts on page 7:

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Good luck!  Let us know how it goes.

[cyclinglady]

It is important to get the celiac blood test. Otherwise, you will never know if you have Celiac Disease or not as many thing can damage intestinal villi.

[Jays911]

Go. And don't be afraid. Do you have any other autoimmune issues? If so, I would be surprised if you don't have celiac. I was diagnosed on New Year's Eve. I changed my diet, and almost overnight my life has changed for the better. No more depression, no more coughing, no more intestinal upset, no more snoring (my wife U.S. amazed Andre thankful), no more everything. Yes, the change in duet requires some work, but I am blessed I found it out.

[amandarowe]

I went for my tests yesterday.  It was no big deal at all!  When I woke up I asked the nurse if he had even done it.  The dr. said everything looked normal but that it typically did.  I should hear back early next week.  I will post again with my results.  I already feel better though just knowing that part is over.

[cyclinglady]

Glad it went well!

[amandarowe]

I got my results today.  They said they were negative for celiac.  I asked for exact numbers like Marsh I or whatever.  It was not on what the lady was given.  I go see the GI for a follow up in a few weeks.  Now the question is if not celiac then what is it because I have had diarrhea today and I had it on Monday.  It is so frustrating.  I just want to feel better and not feel nauseous or have to run to the bathroom.  Is this a common occurrence?  If not celiac then what is it!?!  I could just cry.

[amandarowe]

And Why did my GI not do the blood tests?  I am really upset.

[ravenwoodglass]

Do you live in the US? If you do you have a legal right to copies of the test results. Get them and if you want post them here as we have many folks who can interpret them for you. 

I also am upset that your doctor never did blood work. This can be done by any doctor so you might want to call your GP or Internist and ask to pick up a lab slip so you can get the blood work done.  When you call ask to speak to a nurse or get a call back from one.

After the blood work is done since you have had the biopsy IMHO you can get back to giving the diet a good strict try.

I hope your feeling better soon. 

[Valerie2622]

I wish you the best of luck- know that you are not the only one going through this process. This forum is quite kind to people who worry because they don't tell us that it's all in our head.

[amandarowe]

I do live in the US.  I do not want to be that patient that calls all the time.  I also do not want to wait until Match to talk to the dr.  I can not wait that long!  I am considering calling my GP to have blood work done there.  I have no idea how to go about having this done.  I am sure that he will want to see me in order to order the tests.

[cyclinglady]

Raven is right. Get copies of your test results. Then go back to your GP or PCP and ask for the celiac blood panel to be run. Keep eating gluten until all testing is complete.

I am so sorry that this is happening to you!

[ravenwoodglass]

I do live in the US.  I do not want to be that patient that calls all the time.  I also do not want to wait until Match to talk to the dr.  I can not wait that long!  I am considering calling my GP to have blood work done there.  I have no idea how to go about having this done.  I am sure that he will want to see me in order to order the tests.

Your doctor should have the issues that drove you to the GI in your records. When you speak to the nurse tell her that your GI neglected to do the blood work and only did biopsies and you want the blood tests done. Many doctors will just let you pick up the lab slip or even call the order into the lab.

As far as being 'that patient' goes your doctor and his staff work for you. You are not asking for the moon you are asking for a copy of something which you have a legal right to have. You may need to pick it up in person so you can sign a release but it is important that you know how many biopsies were taken and what other things may have been noted. 

[amandarowe]

Thanks so much you guys are so supportive.

[cyclinglady]

If the procedure was done in a hospital, you can go the records department and for a small fee, they will give you everything -- even the doctor notes. You do not even have to deal with the doctor's office. It is always good to have all your records on file. I have mine going back almost 20 years.

But in any case, your doctor's office can and will supply you with copies of your file.

[corrinne]

I just want to stress that this is NOT in your head. See this recent study:

 

Open Original Shared Link

 

It shows that Celiacs and NCGS have similar somatization levels as controls. That means it is not in your head, and likely even if it's something other than celiac or NCGS it is still not in your head. "In your head" is what they say and/or we think when tests come back negative. But we don't have the tests for everything or don't run them or they produce incorrect results. 

 

Hang in there! I agree that you should give the docs another couple of weeks to run whatever tests they need to run (insist on all of them) and then try a gluten-free diet. If that doesn't work, keep pushing your doctor for help, or change doctors (try a naturopath or chinese doctor if your western docs can't help). It is not in your head. 

 

Good luck!