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Preparing For Testing. Need Advice On Diet & Self-Care
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5 posts in this topic

Hey folks,

This gluten-free journey started for me in October and it's been quite the roller coaster ride. I am going to see a gastroenterologist who specializes in Celiac on 1/15. I believe it would be prudent to genetic test first since Celiac can be ruled out with the genetic test and then I could consider it a wheat intolerance. Any advice there?

Also, I've been eating gluten for a week now. It's tough to go through. Any advice on how much gluten I need to eat? My appetite is suffering.

I'd love to know your different applications for self-care as well. My body is hurting pretty good.

Any advice you all can give would be most appreciative. There are plenty of people who are telling me there's no need to go through with it. I need to hear from the other side.

Thanks, Cali

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NEVERMIND.

My husband just threw a fit about me being on gluten because he sees such a difference. He thinks there are more pitfalls in seeking answers through the medical community than in being resolute about staying gluten-free and watching my health improve despite the doctors.

Today begins my first day back on the gluten-free journey. I am looking forward to not wanting to hang myself.

Officially self-confirmed celiac.

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Hope you continue to improve on the gluten-free diet... and welcome to the club.

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A genetic test can't really rule celiac out since there are other genes associated with celiac than the two commonly accepted genes; and it certainly cannot rule it in, so will do nothing to resolve the issue. I think your husband is probably right' You can mess around with doctors forever but if you are improving gluten free enough for him to notice it would seem you are on the right track. In the end, only you can decide whether a formal diagnosis is necesary for you, though and whether you are prepared to go through what it takes to get it. :)

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It baffles me that before 1960, doctors diagnosed celiac by eliminating gluten from someone's diet, reintroducing it and noting a reaction. Now, everyone has to go through a myriad of tests which may be inconclusive.

Thanks for the correcting my misunderstanding of the genetic test. I would have been very bummed finding this out after the fact.

My heart goes out to everyone going through this process.

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    • Thanks.  This is very helpful.  Our first post diagnosis grocery store trip took several hours, just trying to read labels to make sure everything is safe.   Our son loves bread and this going to be the hardest part. 
    • i would agree with most of your assessment but overall the popular chefs are very aware. Ed Kenny at Town did have  gluten-free options on the menu.  Mavro's will fix something special given advance notice but its expensive.  excellent but very expensive.  Alan Wong is very aware and will have his staff prepare something as well.  We did find many options at both Oahu  whole foods -- mostly  with tofu. the only thing  there is to be aware of cross contamination with things  next to it.  they make a great gluten-free southwestern tofo dish which is great but not if its sitting next to anything with gluten. Its not whole foods but people use the smae  spoons and tongs i found more at   down to earth in peal city than by  University ave  
    • Hi,  I'm in KOna but my kaiser doctor just retired  who was pretty good about it. I dont know of a specialist here  but most of hte kaiser docs wil test you if thats when you need to talk to them about. good luck  
    • Yes.  And wouldn't it have been nice if your doctor had tested you for Celiac disease before you went gluten free? Then you would know if your issues are Celiac or not.  That would help you know how careful you need to be, what other illnesses and problems to look for, whether you might be passing a genetic disease on to your children, if you should look for another cause of your symptoms, etc  
    • I would be very careful in giving this kind of advice, she is in an advanced stage. I was there and one additional symptom that I was getting was a strong urge to commit suicide so eating gluten for three months might not be the way to go for some people. If a gluten free diet stop the problems them gluten is the problem or a least part of it. I eliminated MSG from my diet because I notice that the common denominator for some products that affected my well being was MSG. I eliminated oats because I notice that I would get canker sores every time I ate it. Wheat is what affect my brain the most, irritability gets uncontrollable, my mental capacity greatly diminish, rash in my arms appear, can't sleep,etc. Barley makes my stomach groan, and constipated. Will try testing how Rye affect me some later time. 
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