Nervous For Biopsy Tomorrow

[sweetzucchini]

I'm very nervous for my biopsy tomorrow. Not so much that I'll be diagnosed with Celiac, moreso that I WON'T. It would actually be somewhat of a relief to have an answer to my symptoms and a plan for how to get better. I'm scared that if I turn out to be biopsy negative, I'll seem like a hypochondriac if I go gluten-free based on serology. From what I read, my test results indicate I have it regardless of biopsy, but then again I keep reading about biopsy being the gold standard so I'm confused.

Here are my results:

Endomysial IgA Autoabs, IFA - 1:20 POSITIVE
Immunoglobulin A - 272 (in normal range)
Gliadin IgA Ab - 25.6 H (normal range is under 15)
Gliadin IgG Ab - 106.9 H (normal range is under 15)
Transglutaminase IgA Ab - 80.2 H (normal range is under 15)

I went to the doc because I had blood in my stool. I had been ignoring stomach issues for a while. Also, in August I went for fatigue/joint pain and had a positive ANA/speckled pattern so was referred to a rheumatologist who ruled out Lupus but said I "probably" had Sjogren's based on symptoms and a positive test, but she said she couldn't be sure because the test for Sjogren's is not very specific.

I feel like I shouldn't have had to go back to my PCP for this additional testing... why didn't the rheumatologist test for Celiac's in August?? What kind of doctor would I go to to actually look at everything not just the little piece they are responsible for? I'm in information overload

[cyclinglady]

Ah, you have so many positives on your test that you can bet you have celiac disease. . But the good news is that you can start to feel better soon!

Keep eating gluten until your endoscopy. Make sure they take up to six samples. Some folks choose not to have the endoscopy for various reasons (financial, long wait times, etc.) but if you can (sounds like you will) you will at least get an idea of how much damage has occurred and get that very firm diagnosis.

I have no idea why doctors can not look beyond their area of expertise. Most likely, they just can not keep up on all the data. It is frustrating! We just need to be our own health advocates. Never settle. Never believe that it is "all in your head!"

Oh, other autoimmune disorders can crop up. So keep on top of your health. celiac disease might not be your only problem.

I wish you well!

[Celiacandme]

I agree with cyclinglady...you have so many positives I would almost be surprised if they did not diagnose you with celiac. I'm not surprised your rheumatologist didn't test you for the celiac blood work. They really (or I should say they ones I've seen) focus on rheumatology related diseases. I know that can be frustrating. Also, your rheum might not know tons about celiac disease. Typically, if you have not yet had reason to see a gastroenterologist, your GP would run the initial celiac bloodwork and then send you to a gastroenterologist.

 

Good luck tomorrow. Let us know how it goes and when your results come in. I hope you get some final answers soon and can begin healing!

[ravenwoodglass]

Keep in mind there can be false negatives with the biopsy. You can start the diet as soon as you get home from the procedure. No matter what the results of the biopsy are with the positive blood work you had you have celiac. 

[nvsmom]

I agree with the others.  With those positive results, there is no doubt that you have celiac disease.  Most celiacs are only positive in one or two tests, not ALL of the tests they had done.  That's about as positive as you can get.

 

The last stats I saw stated that the biopsy has a sensitivity as low as 80%.  That means as many as 1 in 5 celiacs end up with a false negative biopsy, especially if they do not take at least 6 samples and test a variety of (most commonly affected) spots - you might want to stress that with your doctors tomorrow.  

 

Anyway, a negative biopsy will not disprove a celiac disease diagnosis, it just doesn't support it.  You still have 4 other positive tests.  KWIM?

 

Good luck tomorrow.  Let us know how it goes.  

[sweetzucchini]

Well the endoscopy and colonoscopy came back normal except for some hemorrhoids (I'm 28 so I feel like I'm a little young for those?). I'll find out the biopsy results on the 18th. The doc said to keep eating normally/gluten for now. I questioned how the endoscopy could look normal with my blood tests and he said to just wait for the biopsy results and if they're negative we will do genetic testing.

[kareng]

What they look for in the small intestine is very very small.  It is next to impossible to see with a scope.  Some scopes seem to have a little clearer picture but its basically a microscopic thing they are looking for.  That is why they take biopsies that are looked at under a microscope.

[ravenwoodglass]

Your celiac panel results were very high. Even if the biopsy results are negative you still need to be on the diet. As Karen stated many times doctors can't tell just by looking if someone has celiac they need to wait for the biopsies to be read. There is a chance of false negatives with the biopsy.

You don't need to be eating gluten for the genetic testing. You might want to call the doctor and ask why he wants you to keep eating gluten. Does he plan on doing another panel on you? If so you could ask to pick up a lab slip so you can get it done right away and if he doesn't plan any more celiac testing then ask why he doesn't want you to go gluten free yet. With results as high as yours you do need the diet no matter what the results of the biopsy or genetic testing. There are very rare instances when someone has celiac without either of the two most common celiac associated genes. 

[sweetzucchini]

Hi everyone, just wanted to give you an update - my biopsy was positive and I was diagnosed with Celiac's on Thursday. I started eating gluten-free the day of my endoscopy and got much better at first but then had a lot of events at restaurants and even though I told them I needed gluten-free meals, I started getting even more strong reactions to gluten. Still plugging along... thanks all for your responses.

[nvsmom]

I'm glad you got a firm diagnosis.

 

Many celiacs find it best to avoid restaurants for the first few months gluten-free.  I would guess that celiacs are glutened about a third of the time that they eat food prepared by others.  If you do eat out you will lessen your chances of being glutened if you stick to the higher end restaurants.

 

Wishing you a fast recovery.  

[sweetzucchini]

Thank you! yes, I've read that. last week was unavoidable as I was maid of honor in a wedding and had several days of events but it was a good lesson. I plan to stay away from restaurants if at all possible this summer (my dad is even asking the restaurant where we are having my bridal shower if i can bring in my own food since they got poor ratings on the gluten-free app). I also need to get more comfortable bringing my own food places. I did that at the rehearsal dinner which was at her mother's house and felt so uncomfortable, like I was smuggling something in haha.

[nvsmom]

LOL I understand.  I felt the same way at first too.  I think I'm finally over that.  If you are at all like me, you just have 2 years to go before you are over that.  LOL

 

I would say to smuggle away for your shower.  That's your day and you are bringing them plenty of revenue.  Order a drink and do what you want.  

[Celiacandme]

Thanks for updating us. Glad you have an answer now. I hope you are feeling better soon after adjusting to your new gluten-free lifestyle. Healing vibes coming your way!

[kerrygirl15]

Hope you start to feel better soon now that you know what is wrong.You must be glad all the testing is over now..

[Gemini]

I'm very nervous for my biopsy tomorrow. Not so much that I'll be diagnosed with Celiac, moreso that I WON'T. It would actually be somewhat of a relief to have an answer to my symptoms and a plan for how to get better. I'm scared that if I turn out to be biopsy negative, I'll seem like a hypochondriac if I go gluten-free based on serology. From what I read, my test results indicate I have it regardless of biopsy, but then again I keep reading about biopsy being the gold standard so I'm confused.

Here are my results:

Endomysial IgA Autoabs, IFA - 1:20 POSITIVE

Immunoglobulin A - 272 (in normal range)

Gliadin IgA Ab - 25.6 H (normal range is under 15)

Gliadin IgG Ab - 106.9 H (normal range is under 15)

Transglutaminase IgA Ab - 80.2 H (normal range is under 15)

I went to the doc because I had blood in my stool. I had been ignoring stomach issues for a while. Also, in August I went for fatigue/joint pain and had a positive ANA/speckled pattern so was referred to a rheumatologist who ruled out Lupus but said I "probably" had Sjogren's based on symptoms and a positive test, but she said she couldn't be sure because the test for Sjogren's is not very specific.

I feel like I shouldn't have had to go back to my PCP for this additional testing... why didn't the rheumatologist test for Celiac's in August?? What kind of doctor would I go to to actually look at everything not just the little piece they are responsible for? I'm in information overload

With a panel like that, you have celiac disease!  It still irks me to no end that a doctor could look at a lab report like that and think you may not have it. 

 

I also have Sjogren's Syndrome and there is a blood test for it, besides the ANA.  They check for antibodies called SS-A and SS-B, also known as anti-Ro and anti-La antibodies.  The ANA test is not specific to any one medical condition, just a check for general inflammation.  I already knew I had Sjogren's when I found my present physician but she insisted on testing so I agreed to the blood work.  Of course, it was positive!  My symptoms are severe so tell me something I didn't already know......LOL!  If you want to find out more, even though it sounds like you are sure you have it, ask for this test.  However, it's like celiac testing.  Being autoimmune in nature, soemtimes the blood work will not show what is happening, even if you have symptoms.  I do not go to a Rheumy because I don't think they are especially helpful. You can learn a lot about these conditions yourself.  I have found that they say things that do not match what I have learned myself.  My symptoms became less severe the longer I was on the gluten-free diet, as it brings down that inflammation.  But I still have it and need to be proactive about treating symptoms with OTC mouthwashes and eye drops.  I also use Restasis eye drops and it helps me tremendously for the dry eye.  That is a prescription.

 

I would recommend you find a good ophthamologist to track your eye issues.  They have been much more helpful than the Rheumy was.......