How Strict Do I Need To Be With My Diet?

[von]

I'm waiting for my endoscopy but my blood test was positive so my doctor says it is almost guaranteed I am celiac. I'm just wondering how strict I need to be with my diet once celiac is confirmed. I don't have any severe digestive symptoms (just extreme fatigue from conditions like iron deficiency and hypothyroid as a result of celiac) so I feel like some possible contamination (such as gluten-free pizza from a non gluten-free facility) wouldn't be a big deal. Reading these forums I see that people are very sensitive to a single crumb of gluten so are there different levels of severity to celiac?

[kareng]

If you have Celiac, you need to be very careful. Even if you think you aren't noticing any issues, you are still having damage. You may realize after a few months of gluten-free that things you didn't think of are better- for example- no more canker sores, less headaches, less acne, etc.

" The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve."

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[cyclinglady]

Karen is right.  Not even a tiny crumb!  

 

You sound like me.  Anemia was my only symptom at the time of my diagnosis.  No tummy issues.  I have thyroiditis too (last 20 years).   Like Karen said, little things resolved which I had been blaming  my thyroid or menopause once I went gluten free (e.g. anxiety, fatigue, tingling, etc.)  I also found out that I had osteoporosis when I fractured two vertebrae two months after my diagnosis.  That alone has given me the incentive to avoid gluten like.....rat poison!  

 

Oh, between my blood tests and endoscopy I continued to eat gluten per my doctor.  Except, I took it as an opportunity to say goodbye to my old gluteney favorites.  Like a loaf of sourdough a day (I kid you not!)  That's when I really noticed stomach pinching, etc.  I was really to get off gluten by then.  There are plenty of gluten free subs that my family adores!  

 

I wish you well!  

[StClair]

I am extremely careful. Just this evening I had made myself a nice split pea soup, and my brother helpfully stirred it with a wooden spoon that I thought may have stirred a pot of pasta in the distant past. No split pea soup for me! I take no chances, because I don't want to have to guess about where my symptoms are coming from, and I have enough problems with the food intolerances that my celiac has created for me.

[von]

wow thanks for your responses..I had no idea how strict this diet is! This might be a challenge for me as none of my family have celiac (that they know of!) and they see it as kind of a fad (the odd bit of gluten won't kill you kind of thing) but I will try my best!

[ravenwoodglass]

You could introduce them to this site to help them understand how strictly you need to follow diet and the precautions you all will need to take in the home to keep you safe. Do be sure to read the Celiac 101 topic at the top of this page. It will be quite helpful. 

Do also encourage your relatives to get tested even if they think they don't have any symptoms. 

It is tough at first to get used to all that we have to do to be safe but it is so worth it. 

[C-Girl]

I understand many here have symptoms with very small traces, but celiac disease isn't always just about gluten. There can be other intolerances at work - dairy, soy, corn, legumes, nuts... And really, even non-celiac people have issues from time to time. Scientific studies that fed various amounts of gluten to celiacs and measured changes to the villi put the limit at between 10-50mg gluten per day. That's roughly 1/500th a slice of bread, or a small crumb if my math is correct. Invisible amounts that might pop up on your scrubbed pans etc are probably not the cause of your problems. I'm still not convinced I needed to buy that new toaster, but it was a better safe than sorry step.

Most products from major corporations that are testing their share facility products are going to be below the ppm limit to be certified gluten-free. However, the FDA rules can be broken and there isn't a lot of oversight. Stick with brands that people here trust - Glutino, Udi's etc. looks for the certified gluten-free label. Be wary of any ingredient that could have wheat but isn't specified (eg. Soy sauce without the wheat-free designation).

A diet with abundant servings of gluten-free foods below the ppm limit should be safe, but in general these will be processed foods.

A diet filled with processed foods is not a healthy diet. Stick to mainly whole foods - fresh fruits, vegetables, meats - and you will be even safer and healthier.

It's not to bad, really.