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Just Diagnosed With Early Signs Of Celiac Disease

jhicks

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jhicks Newbie
jhicks
Posted

I just had a upper and lower GI scope to check for other intestinal issues before continuing with another medical issue. The doctor took a biopsy of the small intestines and it came back as the early stages of celiac disease. My doctor said that I could either choose to go gluten free or I could continue the way I am. I am confused by this. Can a person have a varying degree of the disease? If I do not go gluten free will it get worse and cause damage? I received all this news over the phone and lost the call with my Dr. This was 2 days ago. I have been reading a lot about the disease on the internet but the comment that my Dr. made just makes me so confused.

my symptoms:

I have been having pain in my right side of my abdomen and occasional diarrhea since about March, shortly after I gave birth to my daughter in February. I had my gall bladder removed in early April and they found a liver tumor at that time. I was told if I still had pain to go see the Dr. and they would look at removal at that time. I continued to have pain so I went in. I have pain that is only on the right side and it is not tied to any particular time. It does not get worse if I eat pizza or bread. It does get worse if I am in a bumpy car or do a lot of running. I have attacks of diarrhea about 3-4 times a month. Both of my symptoms are also common with the types of tumors that are on my liver. Any suggestions of what I should do? Thanks

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Celtic Queen Explorer
Celtic Queen
Posted
The doctor took a biopsy of the small intestines and it came back as the early stages of celiac disease. My doctor said that I could either choose to go gluten free or I could continue the way I am. I am confused by this. Can a person have a varying degree of the disease?

I'd get a new doctor asap. Yours gave you some bad advice. If you truly do have Celiac Disease and continue eating gluten, you're setting yourself up to be at risk for a whole host of autoimmune disorders in the future. Tons of people on this board are dealing with Hashimoto's Disease, Graves Disease, Fibromyalgia, Diabetes etc. as a result of not being diagnosed properly.

You may want to continue eating gluten if you do decide to go to another doctor,, just so that you get accurate test results if he wants to re-test you. But if you stay with the current doc, I'd recommend eliminating gluten from your diet asap, before any more damage is done to your body.

ravenwoodglass Mentor
ravenwoodglass
Posted

While I am not happy for you have been diagnosed celiac I am happy for you that they caught it early and before you got a signature like mine or many others on the board.

At least the GI told you about the positive biopsy and didn't just tell you everything was fine and come back in a year so he could check you again.

My DD was told the same thing by the GI that diagnosed us. He said her damage was early and if she wanted she could keep eating gluten until (and then he looked at me and winked) you get to be like your Mom.

The diet does take some getting used to at first but it will be well worth it. Welcome to the board and ask any other questions you need to.

Takala Enthusiast
Takala
Posted

Go to this doctor's office and get your test results in writing. You do not need an appointment for this but you may have to show up, and insist, in case they pretend they cannot give them out. If they want to give you an appt to discuss this soon, fine.

Did you have any blood tests to look for antibodies for celiac disease and/or the genes associated with celiac or gluten intolerance ? (I'm guessing "no.") How about somebody does this ? Before you go off gluten ? Gene tests can be done over the counter.

I am assuming your tumor(s) are benign

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and that this doctor was trying to figure out if it was causing your symptoms, and that either there was a miscommunication problem as to which what was being discussed, biopsy of intestine v. letting tumor alone, or that he doesn't know about celiac. Or both.

Celiac can cause gall bladder and liver complications. Surprise ! <_<:ph34r::blink:

Also, there can be complications from gall bladder surgery.

If you have "early stages of celiac" :blink: diagnosed by biopsy, which is pretty much the standard, you will need to go on a gluten free diet. Unless you want to become sicker. Celiac can show up at any age, but typically gets diagnosed in adults, because that is when the long slow damage really begins to show up. Some doctors don't know any better and will want to see a really wasted away person on the brink of disaster, before they consider celiac, because they assume people are not disciplined enough to stick to a gluten free diet - as if people would want to eat something that makes them feel bad. :(

Di2011 Enthusiast
Di2011
Posted

Hi jhicks,

As you can see from the comments above and any other topics you may have read - you are LUCKY. This is the first post I have read (6months) where anyone has mentioned ANYTHING about "early stages" of celiac. Your doc is possibly much more aware of the condition than most others. If you don't think they are so informed please let us know.

Go Gluten free and avoid the serious and life threatening issues that our members have endured (or died of).

Read on this forum and other websites like your life depended on it and remember that you are so lucky to be in the "could have been really serious" category.

I beg you to ask your doc/specialist why/how (get technical even if you don't understand the specifics) he considered you to be " early stages " because it may be massively important/significant to many members of this forum.

Most celiacs are diagnosed at the worse end of the spectrum. "Spectrum" doesn't seem to feature much in diagnosis. Please help. What made him/her presume it was "early"?

jhicks Newbie
jhicks
Posted
  • Author

What made him/her presume it was "early"?

From what I understand it was that there was minimal damage done and that the villi were just starting to become irritated and shortened. I recieved all this information over the phone and am hoping after a few more test that have been run they will come back and have me come in.

As to the tumor it has shown up on biopsy as a focal nodular hyperplasia and also a Liver hemangioma which showed up nestled beside the FNH on an ultrasound. The FNH was found when I had my gall bladder removed about 4-5 weeks after my baby was born. At that time it was the size of a tennis ball, not it has gone down and is the size of a golf ball. The gall bladder attack started out as severe abdominal pain and cramping and diarrhea that happened even if I drank water. I could keep nothing down. This started at 7 am and around 6 that night I went to the emergency room. They did blood tests to check for anything that could cause the pain. I was scheduled to have my gall bladder removed for a week later. I had never had any issues prior to this time.

I have started on a gluten free diet as I do not want to get worse after researching more online. I also have other food allergies and sensitivities so I know how important it is to stay away from the triggers.

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