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The Doctor Is Puzzled.. Need Your Help!

itsmebiancap

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itsmebiancap Rookie
itsmebiancap
Posted

Hi there!  :rolleyes:

 

I kind of put this in a blog however no responded probably because it was quite lengthy so I will shorten it here..  :wub:

 

A year ago I found out I had a gluten intolerance. I was tested for celiac through blood work. I think its called the Celiac Panel and it came back negative. Since relieving gluten from my system all the pre-diagnosed symptoms disappeared yet new ones constantly form when I intake certain gluten accidentally. However, lately I been feeling nausea all day long. It only stops when I am extremely hungry and to return afterward. I had blood work done again to find out it isn't my thyroid or any of those other test they do as a normal routine. My doctor seems puzzled because I am not pregnant and the nausea doesn't turn into vomit or a bowel movement. It just stays internal all day long. If I eat really light I may not feel it however I will not be full either. She is thinking now it may be inflammation or an autoimmune disease :( however now my joints are hurting as well. I am not sure why my body is fighting back.

 

The nausea I have been feeling constantly for almost a month (this is the 3rd week). First it was heavy nausea and constipation. Then I loaded myself with ginger. Constipation left and the following week I was nausea with reoccurring dizzy / light headedness. This week mostly feeling as though it will come out as throw up and the feeling of my joints feeling weak. Basically my joints feel as though I been on bedrest or in the same position for hours when in reality it has only been a few minutes. I am also feeling restless in the nighttime because of my joints and nausea. Throughout my sleep I can feel my stomach turning :(. Also, the constipation has returned.. Yikes! I go back to the dr next Thursday and would like to go in there with some advice in case the test return negative. 

 

Has anyone else experienced this or something similar? Please reply with what it was. Thank you!

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GottaSki Mentor
GottaSki
Posted

Are you certain you are completely gluten-free?  Is your kitchen gluten-free?  Do you eat items without gluten ingredients at restaurants that may not be safe from cross-contamination?  Have you checked your medication and/or supplements?

 

If you are certain you are completely gluten-free...Perhaps you have developed other food intolerances.

 

Has your doctor run any nutrient blood tests?  Nutrient deficiencies can cause many symptoms throughout the body.  Or ANA and blood tests for inflammation? 

 

I highly suggest you obtain written or electronic copies of all your medical tests.

 

Hang in there :)

itsmebiancap Rookie
itsmebiancap
Posted
  • Author

Hi and thank you for the response. I'm actually not completely gluten free. Since I don't have celiac disease I figured I didn't have to. I tested what I can and cannot tolerate and eat n do that in accordance. my stomach doesn't seem to bother me or worsen from eating some time does not trigger for me sometimes it's just out of nowhere and the same thing with my joints as well. this last time I went to the doctor I ws tested for AnA and inflammation I rec the results on Thursday.

GottaSki Mentor
GottaSki
Posted

Hi and thank you for the response. I'm actually not completely gluten free. Since I don't have celiac disease I figured I didn't have to. I tested what I can and cannot tolerate and eat n do that in accordance. my stomach doesn't seem to bother me or worsen from eating some time does not trigger for me sometimes it's just out of nowhere and the same thing with my joints as well. this last time I went to the doctor I ws tested for AnA and inflammation I rec the results on Thursday.

 

Since you mentioned many symptoms disappearing after removing gluten...you are likely NCGS (Non-Celiac Gluten Sensitive) which shares many symptoms with Celiac Disease and does require removing all gluten.  You might want to check exactly which celiac blood tests were run...if you are still consuming gluten regularly perhaps you should have another antibody panel.

 

If you are not going to have any more celiac testing....I highly suggest you remove all gluten to monitor symptoms while you continue to investigate other possible causes.

 

Hang in there :)

itsmebiancap Rookie
itsmebiancap
Posted
  • Author

What other antibody tests can I have? Can they test you for NCGS? I found out I had a gluten intolerance through the elimination diet because my doctor was going a whole other different route at the time that I knew wasn't true. But, when I took the Celiac Panel Test it said I didn't have celiac...

GottaSki Mentor
GottaSki
Posted

Celiac Panel can mean different things.  I'm suggesting you check that all of these were completed:

 

Total Serum IgA

tTG-IgA

tTG-IgG

EMA-IgA

DGP-IgA

DGP-IgG

 

If they were all negative/normal you had a complete celiac antibody panel.

 

If you didn't have them all and are still eating enough gluten per day, you might consider completing celiac testing.

 

The only test for NCGS is symptom improvement/resolution from removing ALL sources of gluten.

itsmebiancap Rookie
itsmebiancap
Posted
  • Author

This Thursday I shall return to the doctor. When I do, I will retrieve a copy of all my testing thus far to see which test I already took. Thank you for the break down.

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Pegleg84 Collaborator
Pegleg84
Posted

Ditto on GottaSki. I tested negative on the antibody panel, but felt a million times better gluten free. Celiac runs on both sides of my family, so I've always considered myself as having it. If you feel better not eating most gluten, then you will likely feel a lot better not eating any at all. If you're seeing your doctor soon, then I'd talk to them about it. There are no tests for Non Celiac Gluten Sensitivity other than response to the diet, so go COMPLETELY gluten-free and see what happens. Just because you don't feel anything after eating gluten doesn't mean it's not affecting you, and will cause seemingly unrelated problems. If you're still feeling the nausea and such in a few weeks, the another intolerance is a possibility.

An official diagnosis might give you piece of mind, but it all comes down to "if it hurts you, don't eat it!"

 

Good luck and feel better!

loverofdogs Newbie
loverofdogs
Posted

Hi there!  :rolleyes:

 

I kind of put this in a blog however no responded probably because it was quite lengthy so I will shorten it here..  :wub:

 

A year ago I found out I had a gluten intolerance. I was tested for celiac through blood work. I think its called the Celiac Panel and it came back negative. Since relieving gluten from my system all the pre-diagnosed symptoms disappeared yet new ones constantly form when I intake certain gluten accidentally. However, lately I been feeling nausea all day long. It only stops when I am extremely hungry and to return afterward. I had blood work done again to find out it isn't my thyroid or any of those other test they do as a normal routine. My doctor seems puzzled because I am not pregnant and the nausea doesn't turn into vomit or a bowel movement. It just stays internal all day long. If I eat really light I may not feel it however I will not be full either. She is thinking now it may be inflammation or an autoimmune disease :( however now my joints are hurting as well. I am not sure why my body is fighting back.

 

The nausea I have been feeling constantly for almost a month (this is the 3rd week). First it was heavy nausea and constipation. Then I loaded myself with ginger. Constipation left and the following week I was nausea with reoccurring dizzy / light headedness. This week mostly feeling as though it will come out as throw up and the feeling of my joints feeling weak. Basically my joints feel as though I been on bedrest or in the same position for hours when in reality it has only been a few minutes. I am also feeling restless in the nighttime because of my joints and nausea. Throughout my sleep I can feel my stomach turning :(. Also, the constipation has returned.. Yikes! I go back to the dr next Thursday and would like to go in there with some advice in case the test return negative. 

 

Has anyone else experienced this or something similar? Please reply with what it was. Thank you!

I have had a lot of the same problems.  Nausea, aching joints, itchiness, light headedness , constipation isn't a problem since I don't have a large intestine, that was removed in 2004.  After several weeks,6, I went to my family dr.  Blood tests showed that I am low in vit c, d, and iron. None of that is reason for nausea..They want me to use supplements for a week to see how I feel, then maybe go see my GI.  I know only too well how frustrating it can be.  I do have celiac disease and have been very careful with food.  If I don't fix it, I don't eat it.  Good Luck and wishing you well.

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