Research About Cross Contamination

[jeslk]

Hi everyone,

I'm less than a week into being gluten-free - got the biopsy results yesterday confirming celiac. My family is being very supportive - everyone wants to know what they need to do to help keep me safe. The biggest debate right now is how much of a danger cross contamination really is.

I've never had outward symptoms of celiac. The only reason my doctor tested was because of ongoing anemia and low vitamin D levels. So it is very unlikely that I will know it if I come into contact with gluten accidentally.

BUT - I'm 35 years old and have already been diagnosed with two forms of cancer - Non Hodgkin's Lymphoma and Thyroid Cancer. And I know there are some theories that this could be related to the celiac disease. So I really want to know how careful I need to be. My husband and parents obviously want to keep me safe, but I don't want to go overboard unecessarily.

I searched this forum and came up with the following thread: 'Reason to Worry This Much?" . . . as you can see, though, there was disagreement about whether research backs up the claim that everyone needs to avoid all gluten.

Where can I get answers? Have there been ANY published studies staying

My inclination is to err on the side of being too careful, but if that's unnecessary I'd love to know it. And if not, I'd love to have some evidence to point to for the skeptics in my life. There aren't many, but they're there.

Thanks!

Jess

[eyeaspire]

The biggest debate right now is how much of a danger cross contamination really is.

I've never had outward symptoms of celiac. The only reason my doctor tested was because of ongoing anemia and low vitamin D levels. So it is very unlikely that I will know it if I come into contact with gluten accidentally.

BUT - I'm 35 years old and have already been diagnosed with two forms of cancer - Non Hodgkin's Lymphoma and Thyroid Cancer. And I know there are some theories that this could be related to the celiac disease. So I really want to know how careful I need to be. My husband and parents obviously want to keep me safe, but I don't want to go overboard unecessarily.

I had the same curiosity when I was first diagnosed. I remember scoffing at the idea that I should change out my wood spoons or be wary of gluten-free foods and regular restaurants. I thought I didn't show any outward signs, barring some mild depression & occasional constipation (but that's life, right?). It turns out that the longer I've gone without gluten, the worse my reaction is when I do ingest it. In fact, it is downright crazy how bad my symptoms are (I have ataxia, so my brain & nervous system get really messed up). Also, considering you have two types of cancer that are tied to Celiac (according to Dr. Greene's book Celiac Disease: a hidden epidemic), my advice to you would be to err on the side of caution.

While I understand and appreciate the need for data (I'm a data nerd myself & am also 35), let your body dictate how cautious you need to be. The evidence is in your diagnosis and in your other illnesses. Give your immune system every opportunity to be as strong as possible. Also, don't be surprised if other food sensitivities surface. Once your immune system settles down, it won't be on high alert all day every day, thus giving it a rest so it can respond more forcefully when needed.

Be sure to avoid soy if you aren't already (it can wreak havoc on the thyroid). Also consider avoiding iodine (also hard on the thyroid) - which includes the stuff in multi-vitamins. Cooking any cruciferious vegetables (kale, chard, spinach, cabbage, etc) will greatly reduct the amount of goitrogens, which will in turn support your thyroid.

While I don't have thyroid cancer, I do have Hashimoto's. Since I have taken gluten, soy, casein, most grains (even rice), and raw cruciferous vegetables out of my diet, my antibody count has gone down considerably and my T3 & T4 levels are within the range of normal. This includes spacing out on refilling my Armour prescription for six months (life got in the way). Given the opportunity, your body has a remarkable ability to heal. This will undoubtedly cause some degree of hardship for your husband and family members. But it is a lot harder on them if you are unwell, as opposed to making some lifestyle changes. The lifestyle changes can be really challenging and on-going, so do what you can to get support, either here and/or with a support group or nutritionist in your area.

When it comes to eating with family and friends, consider making a plan to make sure you are safe. Maybe bring your own dish/meal. Eating at home before eating out can reduce your need for food and subsequently increase your options when you do eat out - since you won't be so hungry.

[jeslk]

I should add that the research doesn't necessarily have to be about cross contamination - it could just be about whether there is in fact a safe amount of gluten that can be safe (even if just trace amounts). Thanks!

[SaraKat]

I was diagnosed in September and my blood test levels were super high and my biopsy showed blunting and atrophy (I think they said Marsh 3). I just had my follow up blood test done 2 weeks ago (6 months) and all my levels except 1 were in the normal range and the one that isn't is very close to being normal. Example- my TTG was >100 at diagnosis, now it is 2.2

I will tell you what I did. I cut back on a lot of processed foods (even the stated gluten-free ones) and started cooking either chicken or fish and vegetables a lot- sometimes with rice or quinoa. We didn't buy any new pots or pans (per my Dr) and I didn't buy any new wooden spoons or silverware. My husband still eats gluten and we use the same dishwasher. I didn't buy gluten-free shampoo or conditioner, but I did buy gluten-free face lotion and lipsticks.

We cut back on going out to dinner, but we still go out a lot. We used to go out way too much. When I go out I just get stuff plain unless they can specifically tell me that the sauce is gluten-free. I've ordered gluten-free pasta twice out with no issues.

I have had 5 known glutenings in this 6 month period- 2 of them being pretty bad- I ate a whole bag of Tostito multigrain chips without thinking (since most Tostito products are gluten-free I just assumed) and then over XMAS I had tons of Hershey's minis which I thought were gluten-free and they weren't. A few smaller things too, but those were the worst. Other than that I don't think I have ingested any unless CC at a restaurant.

You have to be super strict about not eating gluten, but as far as buying new cookware/shampoo I didn't go to that extreme and my levels have come down.

I take the diet very seriously and never cheat.

I have lost 10 lbs which is an added benefit! When I go to a party I bring rice crackers and string cheese to snack on (of course I hide it pretty well so it's not obvious). I probably wouldn't touch anything at a cocktail party unless it was a just veggie tray.

The diet isn't that hard I have to say- it just going out and eating at other's homes when you really have to worry. My Mom and MIL have been very supportive and have read up on it and I feel comfortable eating at their houses.

Good Luck to you ,

Sara

[jeslk]

Thank you so much for your response! I have been doing some additional reading around this forum and the phrase "silent celiac" has proven very helpful in finding similar information. I guess I was just hoping to have some kind of document, like a "tip sheet" to send to family members to help them know what needs to be done. Thanks again, and good luck to you!

[nmthommy]

CC - I'm a newbie and was making pasta for the family. I made mine with quinoa and regular pasta for my husband. The best way to make sure pasta is done is by tasting it. YEP, I did. Darn! Didn't think about it until it was in my mouth