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Test Results - All Negative

pattic

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pattic Rookie
pattic
Posted

Hi guys! just sharing. quick background for those who haven't read my prior posts.

Lifelong symptoms (I'm 41.999!). Nutritionist recommended wheat free 9 years ago. I went gluten free. Felt much better.

2 years ago had colonoscopy (mom had cancer, dr told me to have it done). He saw no reason to be gluten free, so I ate everything for several months, till my old symptoms re-appeared. Have been gluten free since.

Just had celiac disease panel (antigen Igg, Iga, Ige?? - paper upstairs, too lazy to get it!), and DQ2 and 8. It was negative for the DQ2 and 8; panel numbers were all 1's & 2's (negative).

I'm not going back to eating gluten again, but wanted some opinions on these results. No, I don't have any other food allergy that I'm aware of (I say that because being gluten-free without changing anything else in my diet works). I do have psoriasis, which is an autoimmune disease.

Any thoughts or opinions????? Please share!

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Guest nini
Guest nini
Posted

I say that positive dietary response is a more valid test result than any blood test or biopsy... the tests are good screening tools, but are imperfect. They miss too many of the cases of gluten intolerance and early stages of celiac disease.

pattic Rookie
pattic
Posted
  • Author

thanks nini!

that's what you told me before the test too - sticking to your guns - LOL.

I do agree and staying gluten-free is already a way of life, and is certainly better than feeling yucky all the time! guess you'll be seeing me around here a lot anyway! :)

thanks for your input!

lonewolf Collaborator
lonewolf
Posted

Your story hits home with me. Looking back, I've had symptoms most of my life. I'm 42, had serious health problems and went wheat free (mostly gluten-free too) and eliminated lots of other foods almost 10 years ago. I got better. Tried to add spelt back into my diet and had more health problems. Went gluten-free and got better. My doctor decided I should have the Celiac panel and gene test done in December, after being firmly gluten-free for over a month and barely eating any for almost 10 years. The panel came back negative, no surprise, and I was negative for DQ2 and DQ8. So no diagnosis, but I KNOW that I can't have gluten. It would be nice to have a diagnosis, but I just tell myself it really doesn't matter, since I know my body better than anyone else and I also care about my health more than any doctor possibly could. You and I could both have Celiac, possibly with a different genetic marker or just be gluten intolerant for whatever reason. Someday we'll look back and think how dumb everyone was for not figuring it out.

Oh, and I also have psoriasis. I've had two times in my life when it went completely away. Once it was gone for almost 2 years when I ate only fish, rice, fruits, vegetables and sunflower seeds for a year and slowly added other foods in (still avoid eggs, soy, dairy and red meat). The other time was when I was on massive doses of prednisone. I'm trying to get back to a really restricted diet, no traces of dairy or eggs, nothing fried at all, no sugar, more fish and see if it will help. I was hoping that totally gluten-free would clear it up, but it hasn't.

Guest nini
Guest nini
Posted

LOL! Yep I'm sticking to my guns! LOL!!!!

Feel free to PM or e-mail me with any questions that come up...

CMCM Rising Star
CMCM
Posted
Hi guys! just sharing. quick background for those who haven't read my prior posts.

Lifelong symptoms (I'm 41.999!). Nutritionist recommended wheat free 9 years ago. I went gluten free. Felt much better.

2 years ago had colonoscopy (mom had cancer, dr told me to have it done). He saw no reason to be gluten free, so I ate everything for several months, till my old symptoms re-appeared. Have been gluten free since.

Just had celiac disease panel (antigen Igg, Iga, Ige?? - paper upstairs, too lazy to get it!), and DQ2 and 8. It was negative for the DQ2 and 8; panel numbers were all 1's & 2's (negative).

I'm not going back to eating gluten again, but wanted some opinions on these results. No, I don't have any other food allergy that I'm aware of (I say that because being gluten-free without changing anything else in my diet works). I do have psoriasis, which is an autoimmune disease.

Any thoughts or opinions????? Please share!

Well, supposedly not all the celiac/gluten sensitivity genes have been identified. You might also consider the possibility of casein sensitivity. For myself, even though I tested with both the celiac gene and the gluten sensitivty one, my most major food reactions were from dairy. I was told to not only eliminate gluten but also dairy, and was told that dairy could cause the same intestinal damage as gluten. That damage leads to the "leaky gut" syndrome, and then when the proteins get into the blood they are attacked by the body and the whole autoimmune thing gets going.

If you felt better not eating gluten, that's your body telling you not to eat gluten. I've read some things lately stating that conservatively speaking, they are beginning to think that fully 50% of the population is probably gluten sensitive to some degree.

All in all, even if you don't have a firm diagnosis, if you feel better not eating gluten (and/or dairy too) then that's what you should do. By the way, psoriasis is frequently linked to dairy. This is true for my daughter, and also my mother in law.

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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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