Just an update...
I am finally feeling better! No gluten, no soy, no corn is in my diet. And I can function again.
I will still see the gastro even if any testing won't give accurate results. Other maladies can at least be ruled out, if my progress isn't enough to do that.
Now I just need to educate myself on how to eat out without ingesting any of these poisons.
Thank you again for your support during my troubled times.
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#17
GottaSki
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"Migratory flight complete."
Posted 08 September 2012 - 08:24 PM
Welcome AnnJay!
Wasn't sure if something was clear to you because celiac testing is so very frustrating - but keeping gluten in the diet before endoscopy gives the BEST CHANCE for accurate biopsy. This does not mean that it will not be beneficial for you to have one done. It is possible to have a biopsy that is positive shortly after removing gluten, it is just more likely while still ingesting it.
Additionally, if damage is severe it can be observed by the doctor, not just by biopsy. I hope yours is not visible - just letting you know there is value to the procedure even if you can not tolerate the gluten challenge. The endo also looks at other parts of the digestive system and often provides valuable info.
Regarding your children - you mentioned "the antibody test" I'm not sure you had a full celiac panel. The full panel is essential as it gives far more information than the celiac screening tTG IgA test.
Here is the Full Celiac Blood Panel:
Total Serum IgA
Tissue Transglutaminase IgA and IgG
Gliadin IgA and IgG
Endomysial Antibody IgA
Deamidated Gliadin Peptide IgA and IgG
Glad to hear you have had some improvement by removing gluten along with some other foods - I hope you continue to improve each day
Wasn't sure if something was clear to you because celiac testing is so very frustrating - but keeping gluten in the diet before endoscopy gives the BEST CHANCE for accurate biopsy. This does not mean that it will not be beneficial for you to have one done. It is possible to have a biopsy that is positive shortly after removing gluten, it is just more likely while still ingesting it.
Additionally, if damage is severe it can be observed by the doctor, not just by biopsy. I hope yours is not visible - just letting you know there is value to the procedure even if you can not tolerate the gluten challenge. The endo also looks at other parts of the digestive system and often provides valuable info.
Regarding your children - you mentioned "the antibody test" I'm not sure you had a full celiac panel. The full panel is essential as it gives far more information than the celiac screening tTG IgA test.
Here is the Full Celiac Blood Panel:
Total Serum IgA
Tissue Transglutaminase IgA and IgG
Gliadin IgA and IgG
Endomysial Antibody IgA
Deamidated Gliadin Peptide IgA and IgG
Glad to hear you have had some improvement by removing gluten along with some other foods - I hope you continue to improve each day
-Lisa
Undiagnosed Celiac Disease ~ 43 years
3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
6/1/13 - Slowly trialing a few of the items above - haven't gotten any back, but some reactions have been less severe 
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
#18
Finally@45
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Community Member
Posted 12 September 2012 - 09:32 AM
The carmel color reaction is to corn. I also can't tolerate most vinegars; red wine is ok, but I tend to avoid all of them. Corn vinegar is just as bad on my reactions as gluten-contaminated vinegars.
Check out your reaction to corn.
Check out your reaction to corn.
Celiac symptoms since childhood, with no diagnoses til age 45
Celiac diagnoses & went gluten free summer 2011
Severely fructose intolerant, primarily from corn, w/IBS June 2012
Celebrating each day of feeling GOOD.
Celiac diagnoses & went gluten free summer 2011
Severely fructose intolerant, primarily from corn, w/IBS June 2012
Celebrating each day of feeling GOOD.
#19
shadowicewolf
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Advanced Community Member
Posted 14 September 2012 - 11:58 AM
I react badly to tomatos (it sets my body literally on fire feeling) and am now allergic to them. If you suspect them, cut them out.
ADHD
Asperger's syndrome
Stress issues
Celiac
Allergic to red food coloring.
Asperger's syndrome
Stress issues
Celiac
Allergic to red food coloring.
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