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Gp Says Celiac

nikiluna

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nikiluna Newbie
nikiluna
Posted

I am not sure if this is the correct place to ask this?

I went to my GP for a sprained back and he asked my if I had seen my GI yet about my results and told him no that I was not due to see him for another two weeks. (Even though I had talked with the GI's office but I wanted to see what he said and he sat there reviewing my results) and his response was well it appears that your endoscope test and biopsy showed evidence of sprue. You should start a Gluten free diet and make sure to keep your appt.

My GP and I had already discussed the chance of me having celiac due to that fact that prior test results showed I was having a malabsorption problem and my stools had changed to a very light tan color and the fact that i constantly had diarrhea. (sorry if to graphic)

I also for the past 15 years have been dealing with a chronic rash first it started on my throat and the outer edges of my arms and now its not on my neck, but still on my arms and bilaterally on my stomach and back for years doctors have said its contact dermatitis. I believe it is DH.

The crazy thing is that the GI doctors office called a week after my test and told me that all tests came out negative... I trust my GP and don't believe that he would give me a wrong diagnosis as something as serious as this, (He was reading it off of the results) knowing how many times i come to see him because of GI issues.

My question is there such a thing where it just shows a little not enough to be considered Celiac? Why else would the GI office tell me there was nothing found and to keep my appt.?

So now this Thursday I am going to see GI and am going to hear what he has to say! Either way I have now been Gluten Free for exactly one week and believe I will stay that way!!! I am starting to feel better...

Has anyone had this happen to them?

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mushroom Proficient
mushroom
Posted

Hi nikiluna, and welcome to the forum.

How confusing for you!!! But yes, there is a scale on these tests,(and different labs use different scales) so it is not a black or white "yes" or "no". Ask your GI for a copy of the report and have him explain why he does not think you have it. As a hypothetical example, negative could be anything >5, mildly positive (possible, suggestive - insert any word you care to in here) could be 6-10, and positive could be >10. So if your score happens to be a 7, some doctors will say it is negative, others will say you have a problem with gluten even though you didn't fall in the positive range. It could well be that as time goes by your 7 may rise to an 11, in which case you would be diagnosed as positive and they would probably want to do a biopsy. Your GI may well want to do a biopsy anyway if the results were not definitive, because there are many false negatives on the blood tests (and there are also on the biopsy, unfortunately, if the GI is not skilled/experienced and/or he does not take enough samples :( ) And in order for the biopsy to be as accurate as possible you need to continue eating gluten right up to the time the test is done. So if your want your best chance at diagnosis I would resume eating gluten until your appointment. The way you respond to going back on gluten is an important test in itself. If, in fact, you feel much worse than before, it is a strong indicator of gluten intolerance if not celiac.

Skylark Collaborator
Skylark
Posted

Yes, a scope can have borderline results. You need to get a copy of the biopsy results, and see if it says anything about lymphocytic infiltration or increased intra-epithelial lymphocytes. It might say Marsh stage 1. That would mean there are immune cells in your small intestine that shouldn't be there. They are the "bad boys" that eventually do all the damage. The biopsy may also mention crypt proliferation or crypt hyperplasia or be graded Marsh 2, which means there is a little damage. In general, GI doctors are looking for a super-clear biopsy and won't diagnose celiac until there is villous atrophy (Marsh stage 3). There are other diseases that can cause Marsh 1 or Marsh 2 damage and they are trained to rule them out. Thing is, you wouldn't be immediately feeling better gluten-free!

Your GP who is seeing symptoms of celiac would read a Marsh 1 or Marsh 2 biopsy differently than a GI consult. He is looking at your whole health picture and sees a very strong diagnostic clue that fits with the deficiencies and diarrhea. He is willing to make the call on a borderline biopsy because of all the other information he has. It's great that you have a GP who is knowledgeable enough to put you on the diet!

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

I am not sure if this is the correct place to ask this?

I went to my GP for a sprained back and he asked my if I had seen my GI yet about my results and told him no that I was not due to see him for another two weeks. (Even though I had talked with the GI's office but I wanted to see what he said and he sat there reviewing my results) and his response was well it appears that your endoscope test and biopsy showed evidence of sprue. You should start a Gluten free diet and make sure to keep your appt.

My GP and I had already discussed the chance of me having celiac due to that fact that prior test results showed I was having a malabsorption problem and my stools had changed to a very light tan color and the fact that i constantly had diarrhea. (sorry if to graphic)

I also for the past 15 years have been dealing with a chronic rash first it started on my throat and the outer edges of my arms and now its not on my neck, but still on my arms and bilaterally on my stomach and back for years doctors have said its contact dermatitis. I believe it is DH.

The crazy thing is that the GI doctors office called a week after my test and told me that all tests came out negative... I trust my GP and don't believe that he would give me a wrong diagnosis as something as serious as this, (He was reading it off of the results) knowing how many times i come to see him because of GI issues.

My question is there such a thing where it just shows a little not enough to be considered Celiac? Why else would the GI office tell me there was nothing found and to keep my appt.?

So now this Thursday I am going to see GI and am going to hear what he has to say! Either way I have now been Gluten Free for exactly one week and believe I will stay that way!!! I am starting to feel better...

Has anyone had this happen to them?

You mentioned "prior test results showing malabsorbtion"..have you had the actual blood tests for Celiac? That could be very helpful information in your situation! You need to continue eating gluten for them to be accurate, though, so if you haven't had them done yet, don't stop eating gluten just yet!

mushroom Proficient
mushroom
Posted

Whoops, sorry to have misread your question as bloodwork results rather than biopsy :(

nikiluna Newbie
nikiluna
Posted
  • Author

Thanks, I will definitely ask for a copy of the biopsy and test. I say I feel a little better because I am constantly not running to the bathroom over 10 times a day maybe running only like 5-6. To me that's huge:) Do any of you suffer from left upper quadrant pain sometimes it is so sharp it bows me over in pain. It seems to be right under my left rib and sometimes goes around to the back.

Thanks for all the info:)

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

Do any of you suffer from left upper quadrant pain sometimes it is so sharp it bows me over in pain. It seems to be right under my left rib and sometimes goes around to the back.

Holy crap, YES!! I am so shocked by how many people with Celiac have this same mysterious left sided upper stomach pain! That is actually how I got diagnosed with Celiac! I saw several docs about my upper left quadrant pain under my ribs that radiated to my back. One doc said it was IBS, another said it was fibromyalgia. <_< Finally, I saw my GP to get a referral to a GI doc, and she ran the Celiac screen blood test because she had a patient years ago that presented with the same unexplained left sided pain and she ended up being Celiac! Her hunch was right...my blood test was positive. ;)

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nikiluna Newbie
nikiluna
Posted
  • Author

Holy crap, YES!! I am so shocked by how many people with Celiac have this same mysterious left sided upper stomach pain! That is actually how I got diagnosed with Celiac! I saw several docs about my upper left quadrant pain under my ribs that radiated to my back. One doc said it was IBS, another said it was fibromyalgia. <_< Finally, I saw my GP to get a referral to a GI doc, and she ran the Celiac screen blood test because she had a patient years ago that presented with the same unexplained left sided pain and she ended up being Celiac! Her hunch was right...my blood test was positive. ;)

Thanks:) it's good to know I am not the only one:/

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