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So Confued

popoki321

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popoki321 Rookie
popoki321
Posted

I've just gotten the results of my biposy and the doctor said the pathologist who read it feels there is no evidence of Sprue. The whole reason I went for the biopsy is beacuse a blood test that I had came back with a high reading. I don't know what test it was but the doctor said the level is normally 7 and under and mine was at 11.

The doctor wants to send it to another pathologist for a 2nd opinion. He feels that a GI Specific pathologist should read the biopsy.

He said I can have what's called Latent Sprue, meaning the antibodies are formulated but have not become "clinically signifigant"- What does that mean??? Is it like being HIV positive but not ever getting AIDS? Does it mean it can turn into the disease at any moment?

And in doing this 2nd opinion my insurance company is saying that may not pay for the biopsy to be read by a 2nd pathologist. My doctor has to write a letter and they want to see his notes and so on.

Whatever the results are the doctor feels that I should go gluten free anyway. I guess I agree with him since I know I do feel better when the gluten is eliminated from my diet.

I guess I'm just upset and confused. In a strange, weird way I wanted to hear- yes, you have it... It would give me some validation. It would explain why I have felt like crap for the past 15 years. It would explain why I have 3 bowel movements a day. It would explain so many things.

I feel like I am back to square one with no real explanation as to why I feel the way I do.

If anyone has had a similar experience I would really appreciate some feedback and some guidance.

Thanks.

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VydorScope Proficient
VydorScope
Posted

Popkli3221,

Please understand first off i am not a doctor, how ever I do have a degree in statistics and that covers anylis of test data, so that gives me a little authority to speakhere, but agian I am not a doctor or pretend to be one.

A biposy can NEVER rule out celiac disease. It can only rule it in. A bispoy is NEVER "negative". The proper term is "non postive".

Your blood test is POSTIVE, so you need to go 100% gluten free and never look back. Eventuall (if you dont go gluten-free) you will build up enough damage that a bispoy will likly show postive, but why do that to your self? Gluten is posin to you, and you should treat it as such.

Agian, Im not a doctor nor have I stayed in a Holiday Inn Express :D

happygirl Collaborator
happygirl
Posted

Do you know how many biopsy samples he took? He should have taken numerous ones (from different sites).

I had high blood levels and a "negative" biopsy (because the damn dr. told me to go gluten-free before the biopsy) and he only took one sample.

But, even he agreed that I have Celiac based on my bloodwork and my significant improvement, and then my reaction once I eat gluten.

I hope you find some answers. You are your best health advocate!

Have you tried cutting out gluten yet?

floridanative Community Regular
floridanative
Posted

Vydorscope is exactly right and though he's not a doctor he probably knows more than most docotrs about this condition. It sounds like you have found a great informed doctor. You are very lucky for that.

Of the 6 blood tests on the Celiac panels done on me, only my tTg level was out of whack. One month it was a 10, two months later is was only a 7. I did not mean to cut back on gluten but I may have done so subconsiously after being told I might have Celiac Sprue, making the number go down for the second test.

Two of three docs I saw said I did NOT have Celiac but when one of the two naysayers called me with my positive biopsy results I could feel him squirming in his chair over the phone. In my case I have a classic case so any pathologist could identify the damage but it does sound like you need a spcialist to read your labs. Personally, I needed the confimation of the dx to go gluten free. I'm farily asymtomatic and I needed to be told I was sick and would get worse in order to wrap my brain around the whole thing. Good luck to you.

Lollie Enthusiast
Lollie
Posted

I agree that you are lucky to have a very informed doc. I have been told all of my tests are neg, but I know I feel better gluten-free. I have had illness for about 10 years, so if something works I'll try it. So far, so good for me. I, too, am very confused by what all the tests mean and what the levels should be. I hhave just gotten back my blood work-I can't tell what's what. So, I understand when you said you wished it had given you a straight answer. Just remember that your body reaction to the diet is the proof positive, if you feel better, then focus on that!

Good Luck!

-Lollie

popoki321 Rookie
popoki321
Posted
  • Author

Thanks everyone, for your support and kind words. I must have really been confused...so much so that I couldn't even spell confused right!

After reading through the posts I know I am lucky to have such a great doctor. I guess I don't need a biopsy confirmation if the blood showed it. I'm comfortable with that. I do know that I feel better without gluten in my diet from when I did Atkins diet a few years ago. I felt great. No stomach issues at all. It was amazing.

I already have started eliminating the gluten my diet. It is amazing what you learn when you start reading labels. I assume it's going to take a little time to weed everything out. The sooner the better for me. I can't wait to feel better!

I need to lose some weight and I'm concerned that it's going to be difficult now that I have to change my eating habits. I was on NutriSystem and had lost 16 lbs. I'm getting married in June and I really want to get my new diet under control quick.

What is a good, quick breakfast to eat? I usually eat at work, so it can't be anything that has to be cooked.

I was eating a cup of cereal, a piece of fruit and a lowfat/light yogurt.

Thanks again everyone...Now that I'm gluten free I'm sure you'll be seeing me around the boards.

WGibs Apprentice
WGibs
Posted
What is a good, quick breakfast to eat? I usually eat at work, so it can't be anything that has to be cooked.

I was eating a cup of cereal, a piece of fruit and a lowfat/light yogurt.

These are my typical breakfasts:

gluten-free cereal (Erewhon gluten-free crispy brown rice, Nature's Valley blue corn flakes, Health Valley Corn Crunch'ems) -- read labels carefully and watch out for malt. I have to go to a Whole Foods or natural food store to get cereal.

Cream of rice (if you have hot water, you don't have to cook, just let it sit a few minutes)

turkey/ham and cream cheese in corn tortillas

If you're not giving up dairy, you can still have some brands of yogurt

fruit, of course, is still okay

rice cakes with PB and J

Good luck, and have fun trying new foods!

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Rachel--24 Collaborator
Rachel--24
Posted
I already have started eliminating the gluten my diet. It is amazing what you learn when you start reading labels. I assume it's going to take a little time to weed everything out. The sooner the better for me. I can't wait to feel better!

Thanks again everyone...Now that I'm gluten free I'm sure you'll be seeing me around the boards.

Just wanted to say Welcome to the board and also you have a great positive attitude going into this diet. You'll be a pro at reading labels in no time. ;)

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