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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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    • Jmartes71
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    • trents
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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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