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Not Celiac

mike2184

By mike2184
in Food Intolerance & Leaky Gut

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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.

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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.

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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.

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      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

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    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

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    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

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      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

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