Cheated On Gluten

[songcanary]

Sue,

I loved your comment. Throughout my whole life when I would have strange symptoms, I remember thinking 'I am SO WEIRD'. I blamed my symptoms on myself. Now I know better, and it is so helpful when others mention seemingly unrelated problems. I have learned so much here

[abetterjulie]

All of this has confirmed for me what I originally said. I need to do the gluten trial and get a biopsy to confirm that I need to have the gluten restriction. Like someone else said, if POTS is causing me to have bouts of diarrhea and fatige, and not gluten...then why restrict myself? I have enough going on without complicating it.

I had rice all day yesterday and felt good. I had a BP that was effective and enough energy to clean up the kitchen a little. Today I am starting my day with an apple and we will see where that takes me.

Thanks to all for the insights and suggestions.

[sue1234]

Sarah, I am one that had a 4x high anti-gliadin, but biopsy was negative, so told I didn't have celiac. Of course, the medical community has not "defined" gluten-intolerance, and so they don't know what to tell me with the 4x the upper limit result. I do consume a little gluten here and there, as I can't cook or prepare my own food. So, who knows.

[issie]

All of this has confirmed for me what I originally said. I need to do the gluten trial and get a biopsy to confirm that I need to have the gluten restriction. Like someone else said, if POTS is causing me to have bouts of diarrhea and fatige, and not gluten...then why restrict myself? I have enough going on without complicating it.

I had rice all day yesterday and felt good. I had a BP that was effective and enough energy to clean up the kitchen a little. Today I am starting my day with an apple and we will see where that takes me.

Thanks to all for the insights and suggestions.

Hate to burst your bubble - I know you want to be able to eat glutten. I'm not celiac, but do find I'm extremely sensitive to glutten. It has made a world of difference me staying off of glutten,dairy and sugar. I was having real bad neuropathies and other auto immune type symptoms and these are starting to get better the longer I stay off of these things. We all mess up once in awhile - that's okay. But, realize that in the long run the closer you can stick to what makes a difference for you - the better you will be in the long run.

[ramakentesh]

I would like to jump in and say that I have never read anywhere that rice has gluten. There is the "sticky" rice, which is called "glutinous rice" and used in sushi, etc., but I actually talked to someone with the Celiac Society(?) and asked if glutinous rice contained gluten related to celiac, and they said no. And, I believe rice is one of the few gluten-free grains.

that would be correct.

[Birdlady]

Biopsies are known for its false negatives. If they don't take samples from an exact spot with damage, then it will show negative. You could have damage in another section that they completely missed and still have Celiac. This study specifically mentions children, but note in the objectives it says they are already aware of the issue in adults and were seeing if it affected children as well.

http://www.nature.com/ajg/journal/v105/n1/abs/ajg2009557a.html

http://www.celiac.com/gluten-free/topic/12697-negative-biopsy-positive-ttg-antibodies/

You really should go completely gluten free and see how you feel on it. The positive blood work is enough in my opinion because those usually don't show anything. Unfortunately if you want to do this, there is no consuming gluten here or there. It is all or nothing and I don't support what the OP did. I understand the frustration with the diet though because I get it too at times. However cheating on the diet is just going to make you sicker, which doesn't make a whole lot of sense to me. I would first be checking every single thing I have been putting into my mouth since the diarrhea started and see if I am consuming gluten. You can't just assume you aren't because sometimes something we had been buying for a while, now has gluten in it. We don't think to take a second glance.

The best way to avoid gluten is just eat fruits, vegetables and meat. I do eat rice btw and don't have problems with it that I am aware of, but I know some people are sensitive to GF oats. My tests were even stranger because I had no reactions to barley, spelt, oats or rye, but only to wheat.

Sarah, I am one that had a 4x high anti-gliadin, but biopsy was negative, so told I didn't have celiac. Of course, the medical community has not "defined" gluten-intolerance, and so they don't know what to tell me with the 4x the upper limit result. I do consume a little gluten here and there, as I can't cook or prepare my own food. So, who knows.

[cnm1]

I know that for my daughter - dietary restrictions have made a huge difference. In 2006 , an immunologist/allergist dx her with wheat (not gluten), soy, dairy, egg, and peanut sensitivities. This was based on IgG blood tests. He said it was not an exact science but to try dietary restrictions to see if it helped. It did - big time. Of course in the last few months, she was dx with MCAD by Dr Castelles and started on gastrocrom. It is the best she has felt in 10 yrs.

I want to recommend a wonderful cookbook for those with food allergies/sensitivites: The Allergen-Free Baker's handbook by Cybele Pascale. The recipes are amazing - good even if you have no food allergies. I could not believe the banana cream pie!!!

Louise

[Sarah4444]

Just to make things more complicated, as I am learning about MCAD I have met several people with various forms of mastocytosis/MCAD who feel that gluten is one of their "triggers" for mast cell degranulation/anaphylactic-type symptoms.

[sue1234]

Sarah, I could totally believe that.