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Negative For Celiac

Jackie927

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Jackie927 Rookie
Jackie927
Posted

Is it possible to have Celiac if both of the test were Negative? I have the numbness and tingling, fuzzy head...really bad, itches, nausea, D, Fatigue, lactose intolerant, etc. I am IGA deficient and I am losing my Vit D. I just got the test results back today. Doctor say's I could just be Gluten Intolerant. Should I be tested periodically? Blood or Biopsy if so? Thank you very much.

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The Fluffy Assassin Enthusiast
The Fluffy Assassin
Posted
Is it possible to have Celiac if both of the test were Negative? I have the numbness and tingling, fuzzy head...really bad, itches, nausea, D, Fatigue, lactose intolerant, etc. I am IGA deficient and I am losing my Vit D. I just got the test results back today. Doctor say's I could just be Gluten Intolerant. Should I be tested periodically? Blood or Biopsy if so? Thank you very much.

To be tested, you have to keep eating gluten. It would be better if you went on the gluten-free diet to see if your symptoms improve. If they do, just consider yourself gluten intolerant (or undiagnosed celiac) and get on with your happier life. If not, you'll have to keep investigating.

Oh sorry; the answer to the question is yes, they can both be negative and you can still be celiac.

Good luck!

Jackie927 Rookie
Jackie927
Posted
  • Author
To be tested, you have to keep eating gluten. It would be better if you went on the gluten-free diet to see if your symptoms improve. If they do, just consider yourself gluten intolerant (or undiagnosed celiac) and get on with your happier life. If not, you'll have to keep investigating.

Oh sorry; the answer to the question is yes, they can both be negative and you can still be celiac.

Good luck!

Thank you very much for the answer. I just wish the doctors would be more informative. Cut and clear.............No Celiac move on. I will be eating gluten-free. I was eating gluten before the test was done but oh well......I'm very thankful they say I don't have Celiac but worried not knowing for sure what's going on.

BeautifulDay Apprentice
BeautifulDay
Posted
Thank you very much for the answer. I just wish the doctors would be more informative. Cut and clear.............No Celiac move on. I will be eating gluten-free. I was eating gluten before the test was done but oh well......I'm very thankful they say I don't have Celiac but worried not knowing for sure what's going on.

I, too, have tested negative for Celiac (both bloodwork and biopsy), but my life has truly been changed with the gluten-free diet. Unfortunately, when I tested negative to Celiac, I didn't know I could still have a gluten intolerance, so I continued to make myself sick for another year by eating gluten-filled foods. It's frustrating how confusing the doctors can be regarding this problem. I really think its important to take matter into your own hands -- the medical community is wonderful, but you do know your body the best, better than anyone else does.

I now consider myself gluten-intolerant and realize that nothing will be confirmed in the future because I'm officially off gluten. For me this is okay cause I feel so much better! Unless you really need the black and white proof from testing that you have Celiac, just follow what your body says. Why fix it if it's not broken? Either way you'll be on a gluten-free diet and helping yourself out :)

Take care!

Jackie927 Rookie
Jackie927
Posted
  • Author
I, too, have tested negative for Celiac (both bloodwork and biopsy), but my life has truly been changed with the gluten-free diet. Unfortunately, when I tested negative to Celiac, I didn't know I could still have a gluten intolerance, so I continued to make myself sick for another year by eating gluten-filled foods. It's frustrating how confusing the doctors can be regarding this problem. I really think its important to take matter into your own hands -- the medical community is wonderful, but you do know your body the best, better than anyone else does.

I now consider myself gluten-intolerant and realize that nothing will be confirmed in the future because I'm officially off gluten. For me this is okay cause I feel so much better! Unless you really need the black and white proof from testing that you have Celiac, just follow what your body says. Why fix it if it's not broken? Either way you'll be on a gluten-free diet and helping yourself out :)

Take care!

That is so helpful. Thank you so very much. It's just so hard telling everyone that my test were negative but I still have to stay away from gluten. They will think....oh my...she got tested and she's still not happy. You know how people are. Even those closest to us. Not that this will stop me from staying gluten-free.

Now my question is........since I'm possibly gluten intolerant........will the gluten if consumed still damage my organs?

I'm so sorry every one has Celiacs here but I'm so thankful for all of you. The best site I've ever experienced with kind and caring and understanding people.

ravenwoodglass Mentor
ravenwoodglass
Posted
I am IGA deficient and I am losing my Vit D. I just got the test results back today. Doctor say's I could just be Gluten Intolerant.

What I bolded is very significant. You could very well still have celiac as being IGA deficient will likley cause a negative result on blood testing. You could continue on gluten and ask for a biopsy, but those do have false negtives also. Whether you are celiac or gluten intolerant damage is still being done to your body and you need to be just as strict with the diet with GI as you do with celiac.

ang1e0251 Contributor
ang1e0251
Posted

That is so helpful. Thank you so very much. It's just so hard telling everyone that my test were negative but I still have to stay away from gluten. They will think....oh my...she got tested and she's still not happy. You know how people are. Even those closest to us. Not that this will stop me from staying gluten-free.

I'm not sure why you have to tell people your test results, none of their business. As for those close to you, the answer is "I am IGA deficient so the tests are inconclusive but my dr dx'd me gluten intolerant".

Now my question is........since I'm possibly gluten intolerant........will the gluten if consumed still damage my organs?

If you're GI, it isn't supposed to damage your organs but....many think GI is just the precursor to celiac disease. I don't think you can rule out celiac disease because you were gluten-free before testing and that throws off the testing.

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CMG Rookie
CMG
Posted

I just saw a new doctor this week who specializes in gluten intolerance. His view is it doesn't matter if you are celiac or "just" gluten intolerant. Gluten intolerant is also an autoimmune condition; and it is causing inflammation and damage somewhere in your body even if it has not destroyed your villi. He also talked about the possibility of gluten intolerance being precursor to celiac. Bottom line is you do need to be just as strict if you are gluten intolerant. He also told me that staying on gluten or doing a gluten challenge just to find out if it is celiac rather than gluten intolerance is a really bad idea - you can cause too much damage in the process. He likened it to feeding a high fat, high cholesterol diet to a cardiac patient to see if it causes a heart attack.

I went to this doctor specifically because of the types of concerns you are having - I wanted a "real" diagnosis that people would not question. I guess I'm back to square 1 in terms of other peoples' opinions on my decision to be gluten free; but, I think I finally got past my own desire for a diagnosis. I know I'm on the right track. It sounds like you are, too.

Jackie927 Rookie
Jackie927
Posted
  • Author
I just saw a new doctor this week who specializes in gluten intolerance. His view is it doesn't matter if you are celiac or "just" gluten intolerant. Gluten intolerant is also an autoimmune condition; and it is causing inflammation and damage somewhere in your body even if it has not destroyed your villi. He also talked about the possibility of gluten intolerance being precursor to celiac. Bottom line is you do need to be just as strict if you are gluten intolerant. He also told me that staying on gluten or doing a gluten challenge just to find out if it is celiac rather than gluten intolerance is a really bad idea - you can cause too much damage in the process. He likened it to feeding a high fat, high cholesterol diet to a cardiac patient to see if it causes a heart attack.

I went to this doctor specifically because of the types of concerns you are having - I wanted a "real" diagnosis that people would not question. I guess I'm back to square 1 in terms of other peoples' opinions on my decision to be gluten free; but, I think I finally got past my own desire for a diagnosis. I know I'm on the right track. It sounds like you are, too.

Awww....thank you so much CMG. Thank all of you so much. He sounds like a doctor with much knowledge. The inflamation in my brain and body is one of my biggest problems. It causes all kinds of problems. That is what got me to the Rheumotologists and lead me to Celiac. Unfortunately, my doctors are have not much more to say since no celiac. So off I go to my own NO GLUTEN diet and read my post daily to learn what I can.........without any diagnosis too. At least now I have an explanation (from your doctor) to print and make flyers out of to show all.............lol. I wish you well. WOW! That makes so much sense.

ksymonds84 Enthusiast
ksymonds84
Posted
I just saw a new doctor this week who specializes in gluten intolerance. His view is it doesn't matter if you are celiac or "just" gluten intolerant. Gluten intolerant is also an autoimmune condition; and it is causing inflammation and damage somewhere in your body even if it has not destroyed your villi. He also talked about the possibility of gluten intolerance being precursor to celiac. Bottom line is you do need to be just as strict if you are gluten intolerant. He also told me that staying on gluten or doing a gluten challenge just to find out if it is celiac rather than gluten intolerance is a really bad idea - you can cause too much damage in the process. He likened it to feeding a high fat, high cholesterol diet to a cardiac patient to see if it causes a heart attack.

I went to this doctor specifically because of the types of concerns you are having - I wanted a "real" diagnosis that people would not question. I guess I'm back to square 1 in terms of other peoples' opinions on my decision to be gluten free; but, I think I finally got past my own desire for a diagnosis. I know I'm on the right track. It sounds like you are, too.

I am still not recovered from the gluten challenge I started in May and had to end in the beginning of July. Each day gets better though but I can tell I did some damage. I have arthritis pain in my foot that still bothers me and geographical tongue with a vengeance. Almost a month of gluten free but still having loose stools every morning. My energy is starting to return. Your doctor is right, sometimes a gluten challenge is a bad idea!

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