Jump to content

  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Not Celiac

mike2184

By mike2184
in Food Intolerance & Leaky Gut

Recommended Posts

mike2184 Rookie
mike2184
Posted

I just received my blood tests back - all the antibody levels were 1's. I also tested negative for both of the celiac genes. To further confirm, I had a sandwich last night and a slice of pizza today - none of the symptoms that I had determined to be gluten-related occurred.

I am starting a food diary. The only time I have had what I considered to be a gluten reaction is after eating mexican food. Any ideas there? I also know that I have stomach issues with coffee and alcohol - but not sodas.

So much had improved since going gluten free - I guess I thought I had my answer. Now I am back to the drawing board. I am wondering if the change to a healthier diet has made the differences. I have no more dizziness, brain fog, back pain, and my overall health has been much better. The neuropathies have also improved, although they have not gone completely away.

I am really at a loss from where to go from here. I have had complete bloodwork and and MRI done prior to going gluten free. I am definitely going to keep on a similar diet, although it will be nice not to have to stress about being glutened when eating out.

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

My blood tests were also negative, but I had two gluten intolerant genes and no celiac genes. You can see my Enterolab test results below. The blood tests can have a false negative, and it sure seems around here that for non-celiac gluten intolerants they usually are negative. You could still have a gluten problem!

If you get sick after Mexican food (I do, too, err, did), my guess is the dairy is a problem for you. I found I was casein intolerant.

When I got back on gluten for testing, and same with some others around here, it didn't bother me for a few days. At first, there was no reaction.

Keeping a food diary is a good idea. You may want to try Enterolab as their tests are more sensitive.

Nantzie Collaborator
Nantzie
Posted

The food diary is an excellent idea. That's what I suggest to people who find that gluten doesn't seem to be a problem.

I also had negative blood tests, negative biopsy and my genes came back gluten intolerant, not celiac. Read my sig line for more. Keep in mind that symptoms of being "glutened' arent' limited to gastro problems. Headaches, tiredness and irritability are what I usually get now.

Nancy

Guest nini
Guest nini
Posted

try enterolab, that can help you narrow down other intolerances if they are there, and has been stated, gluten symptoms aren't always digestive in nature... so gluten may be PART of the bigger picture, so a food diary is a very wise thing to do to help you find patterns

AndreaB Contributor
AndreaB
Posted

You could still have a gluten sensitivity. Enterolab is much more sensitive than blood draws as the intestines produce the antibodies and I assume after so much damage go to the bloodstream.

Enterolab tests for celiac as well as gluten sensitive genes. I would hate to see you not worry about getting glutened when you go out or start eating it occasionally and doing yourself more harm.

Enterolabs website is Open Original Shared Link

eKatherine Apprentice
eKatherine
Posted

Enterolab has found that many people who test negative but go gluten-free find health improvements.

mike2184 Rookie
mike2184
Posted
  • Author

Thanks everyone for the advice. I will continue keeping a food diary and look into ordering one or more of the tests from Enterolab.

In the meantime, it won't be too difficult to know if gluten is my problem. My health has gotten consistently better in the 10+ weeks of being gluten-free. So if it regresses, I have my answer with or without a diagnosis.

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

Celiac.com Sponsor (A8-M):


Susan123 Rookie
Susan123
Posted

I was told by the Celiac Research Center in Baltimore that if you don't have the genes for Celiac that you can rule it out with 99.9% accuracy. That is pretty strong. I would look into other food allergies maybe. Have you gotten the food allergy testing done?

AndreaB Contributor
AndreaB
Posted

Just because you don't have the genes for celiac doesn't mean that you don't have what has been labeled non celiac gluten sensitivity. They have also labeled genes that tend toward that.

KaitiUSA Enthusiast
KaitiUSA
Posted

A food diary is a great idea. I hope you find out what is causing it. You could have a sensitivity or intolerance of some kind that is causing it. Also, msg causes many problems so it could be an additive like that.

You may not be celiac but you may still have a problem with gluten.. Have you looked into doing an Enterolab?

mike2184 Rookie
mike2184
Posted
  • Author

In reviewing my celiac panel, I noticed that my immunoglobulin score is high. Could this be indicative of a food allergy?

Thanks.

corinne Apprentice
corinne
Posted

Casein (a protein in dairy) intolerance can cause very similar symptoms to gluten - GI/brain fog etc. Might be worthwhile looking into.

Archived

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

Go to topic listing

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



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. HelloFlowersGoodbyeFlour
      - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      5

      Anyone else get a lot of upper respiratory infections?

      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired. I haven’t been to an allergist in a few years, I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young...
    2. HelloFlowersGoodbyeFlour
      - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      5

      Anyone else get a lot of upper respiratory infections?

      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply
    3. cristiana
      - cristiana replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      5

      Anyone else get a lot of upper respiratory infections?

      Hi @HelloFlowersGoodbyeFlour I wonder if you suffer from reflux, as if you do, you may find it could also be irritating your airways. I shall explain: I have to use a blue inhaler from time to time, and it seems to be related to reflux. Never had any trouble before my coeliac diagnosis, the reflux seemed to be something that developed following...
    4. trents
      - trents replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      5

      Anyone else get a lot of upper respiratory infections?

      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
    5. Scott Adams
      - Scott Adams replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      5

      Anyone else get a lot of upper respiratory infections?

      Yes, some people with celiac disease do seem to deal with frequent infections, especially if they have ongoing inflammation, nutrient deficiencies, asthma/allergies, or another immune issue going on. Low vitamin D can also affect immune function, so it would be reasonable to ask your doctor to recheck vitamin D, iron/ferritin, B12, folate, zinc, and possibly...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,124
    • Most Online (within 30 mins)
      10,442
    HelloFlowersGoodbyeFlour
    Newest Member
    HelloFlowersGoodbyeFlour
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • HelloFlowersGoodbyeFlour
      Anyone else get a lot of upper respiratory infections?

      By HelloFlowersGoodbyeFlour · Posted

      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired.  I haven’t been to an allergist in a few years,  I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young etc. But yes I think I should at the very least get a different opinion. Thank you for your reply 
    • HelloFlowersGoodbyeFlour
      Anyone else get a lot of upper respiratory infections?

      By HelloFlowersGoodbyeFlour · Posted

      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply  
    • cristiana
      Anyone else get a lot of upper respiratory infections?

      By cristiana · Posted

      Hi @HelloFlowersGoodbyeFlour I wonder if you suffer from reflux, as if you do, you may find it could also be irritating your airways.  I shall explain: I have to use a blue inhaler from time to time, and it seems to be related to reflux.  Never had any trouble before my coeliac diagnosis, the reflux seemed to be something that developed following a holiday to France in 2019, where I had been exposed to gluten.    The reflux continued into the autumn and winter, my throat itched to begin with, particularly after meals, but it then that feeling of irritation seemed to spread to my lungs.  I even found it difficult to breathe on occasion. What stopped it in its tracks was using a wedge pillow at night, following a reflux diet (you can find them online), not eating 2-4 hours before bed and also having a dose of Gaviscon Advanced at night, which forms a barrier so that acid/food can't go back up your esophagus.  The throat irritation faded, and then I found it easier to breathe again. Just mentioning in case it could be a contributing factor.
    • trents
      Anyone else get a lot of upper respiratory infections?

      By trents · Posted

      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
    • Scott Adams
      Anyone else get a lot of upper respiratory infections?

      By Scott Adams · Posted

      Yes, some people with celiac disease do seem to deal with frequent infections, especially if they have ongoing inflammation, nutrient deficiencies, asthma/allergies, or another immune issue going on. Low vitamin D can also affect immune function, so it would be reasonable to ask your doctor to recheck vitamin D, iron/ferritin, B12, folate, zinc, and possibly general immune markers if this keeps happening. Also, people with celiac disease can have reduced spleen function, or hyposplenism, which is one reason some celiac organizations recommend pneumococcal vaccination or making sure you are up to date on pneumonia-related vaccines. Since you are getting bronchitis, pneumonia, and frequent colds in your late 20s, I would not just brush it off, especially if symptoms are lingering after a week and a half. It may or may not be directly from celiac, but repeated respiratory infections are worth documenting and discussing with your doctor, and possibly with an allergist/immunologist or pulmonologist.
×
×
  • Create New...