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Very Confused Wiith Test Results....

Luvbeingamommy

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Luvbeingamommy Contributor
Luvbeingamommy
Posted

Okay I am going to try to make this as short as possible. My symptoms started soon after I had my third child. My first symptom was nausea. After about a month I went to the doctor. Did some blood work and had high bilirubin, so I had a stomach ultrasound, everything was normal. They told me to take a PPI, maybe reflux, didn't think I ever felt heartburn. About a month later I had a stroke at 25, otherwise completely healthy my daughter was 4 months. Did a BUNCH of testing in the hospital, nothing except a positive ANA. Did much more in depth connective tissue tests, lupus, autoimmune etc, everything normal. I asked my neurologist if my nausea has anything to do with my stroke, he said he doubted it.

During my follow up with my general practice doctor, I asked if they had tested for Celiacs. The nurse said no, I said with some of my GI symptoms maybe it would be worth testing. She said doctor said he doubts it's Celiacs, but will run the test. So the panel came back positive, well except one test, I can't remember the names of these though. I know my anti glutian was high, maybe my IgA?? Anyway he referred me to a GI doctor. GI doctor said nausea isn't the classic symptom of Celiac, but with the blood results he would do a scope. I had the scope, the only thing they told me right away was that I had some errosions that were healing. Biopsy was negative, no signs of Celiac damage. Have a follow up with him in a month.

During this time my nausea has got better overall, but for the week I've begun to have diarrhea. Before it was occasional. A few other odd symptoms would be fatigue and feeling dizzy, lightheaded. I also have a 2 year old with chronic loose stools, but he continues to gain so doctor isn't worried, he will poop 3-6 times a day (worries me a little, just can't be "normal"). ALl my kids have had food intolerance problems.

I called my GI doctor on Friday and asked what was the possiblity with the positive blood work and negative scope that perhaps I had not had symptoms long enough to cause damage, because the diarrhea just started. Still not sure if it's a fluke thing or not. Haven't heard back yet though. I am going to call and have my son have the Celiacs panel run on him. I have thought about doing enterolab, especially the genetic test. I am not sure how much the gluten part would help, because I know my body is making antiglutian antibodies.

To sum it all up I really feel stuck, like want a diagnosis. I don't want people to think I am crazy, plus I know intolerance versus celiacs would be treated differently. I have received a lot of flack about my kids and their food intolerances. I am currently nursing and dairy, soy, and egg free, so adding gluten seems a bit daunting, but do able. I don't know if I wait a few months and have them redo the scope if I am still having symptoms, to get a diagnosis. If I should do the gene test and if I do carry the gene consider that and positive blood work good enough?? Anyone have any advice for me??

Sorry this is SO long!

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ravenwoodglass Mentor
ravenwoodglass
Posted

How many biopsies did the doctor do? Have you seen the actual results? If not you should get a copy. Some doctors don't want to diagnose until the villi are totally destroyed and will call a milder blunting normal.

You could go with Enterolab and get their antibody stool testing and gene panels done. I would consider that also if the little one shows negative on blood tests as young children have an even higher rate of false negatives than adults.

You also have the option of doing the diet and seeing what happens. You have a postive blood test (which for some doctors would be enough for diagnosis) and if the diet helps you have your answer.

curiousgeorge Rookie
curiousgeorge
Posted

IMHO I would get a copy of your blood and share it here before I went to the expense and time with Enterolab. If your blood work is positive, then it seems like a waste do do entrolab. IMHO of course.

Luvbeingamommy Contributor
Luvbeingamommy
Posted
  • Author

IMHO I would get a copy of your blood and share it here before I went to the expense and time with Enterolab. If your blood work is positive, then it seems like a waste do do entrolab. IMHO of course.

I was kind of thinking the same thing. I believe and I will try to get a copy everything was positive except the TTG and it was neither positive nor negative? I was kind of thinking that the anti glutian and what not is what they test at enterolab, so it might be a waste of money. Except maybe the gene test would be good to know?? I am going to call and ask for the records tomorrow and a copy of the endoscope also.

I go back to my GI doctor mid Feb. I am suppose to do a stool study before then. The nurse said "acute" things like what I asked her are normally for appointments?? Not that hard of a question, but whatever.

Luvbeingamommy Contributor
Luvbeingamommy
Posted
  • Author

I am picking up my test results, the scope, blood work, etc tomorrow from my Gi doctors office. Hopefully I share a little maybe someone can help a bit more?

In the meantime I just suppose to wait until mid Feb. I am really seriously thinking about trying the diet, I have felt bad for so long....nausea bad, diarrhea (on and off, not tons), tired, depressed, reflux, dizziness.....I don't know what else it could be, so might as well give this a shot. I have a complete look over since my stroke and nothing else is coming up. Worth a shot?

I took my 2 year old told to get a blood panel, I will be anxious to see his results as well. Don't think i will put him through a scope though, probably just try the diet, I don't know.

nora-n Rookie
nora-n
Posted

If you need some mroe testing, you should stay on the gluten and not go gluten free.

Often they find no changes yet in early celiac, and it is typically patchy.

Some people have posted they had the pill cam and the damage was clearly visible on the pill cam images. A few had the damage on the wrong end of the small intestine, where no scope goes.

Have they considered the gene test? Celiac is highly genetic. The kids get one gene from each parent.

Luvbeingamommy Contributor
Luvbeingamommy
Posted
  • Author

If you need some mroe testing, you should stay on the gluten and not go gluten free.

Often they find no changes yet in early celiac, and it is typically patchy.

Some people have posted they had the pill cam and the damage was clearly visible on the pill cam images. A few had the damage on the wrong end of the small intestine, where no scope goes.

Have they considered the gene test? Celiac is highly genetic. The kids get one gene from each parent.

Well, I am not sure what other testing they would do. I figured my only option would be to stay on it for another 6 months and then see if there was damage. I've decided though to go on it now, I just feel too terrible with stomach issues, TERRIBLE nausea, dizziness, tired, etc. I have 3 children 4 and under to take care of. I am going to look into getting the gene test done though. Not sure if I am making the righht choice, but I hope so :(.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Well, I am not sure what other testing they would do. I figured my only option would be to stay on it for another 6 months and then see if there was damage. I've decided though to go on it now, I just feel too terrible with stomach issues, TERRIBLE nausea, dizziness, tired, etc. I have 3 children 4 and under to take care of. I am going to look into getting the gene test done though. Not sure if I am making the righht choice, but I hope so :(.

You have had the scope and the blood work. You can now start a trial of the diet. Your body may even give you the answer before you go back to get the results. The gene test is not by itself diagnostic and not all doctors have them look for all the genes.

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