Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Negative For Celiac

Jackie927

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fermented foods, Kefir, Kombucha?

      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested...
    2. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    5. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,875
    • Most Online (within 30 mins)
      7,748
    Jen J.
    Newest Member
    Jen J.
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.