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Not Celiac


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11 replies to this topic

#1 mike2184

 
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Posted 06 September 2006 - 01:13 PM

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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#2 CarlaB

 
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Posted 06 September 2006 - 01:17 PM

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.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#3 Nantzie

 
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Posted 06 September 2006 - 01:51 PM

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
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#4 Guest_nini_*

 
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Posted 06 September 2006 - 05:39 PM

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
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#5 AndreaB

 
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Posted 06 September 2006 - 05:49 PM

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 www.enterolab.com
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Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.


#6 eKatherine

 
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Posted 07 September 2006 - 12:35 AM

Enterolab has found that many people who test negative but go gluten-free find health improvements.
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#7 mike2184

 
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Posted 07 September 2006 - 08:32 AM

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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#8 Susan123

 
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Posted 07 September 2006 - 08:51 AM

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?
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#9 AndreaB

 
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Posted 07 September 2006 - 09:14 AM

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.
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Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.


#10 KaitiUSA

 
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Posted 07 September 2006 - 09:46 AM

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?
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

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#11 mike2184

 
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Posted 07 September 2006 - 11:29 AM

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

Thanks.
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#12 corinne

 
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Posted 07 September 2006 - 01:13 PM

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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