Cross Contamination?

[Bubba's Mom]

I just got my diagnosis after an endoscopy. I saw the Dr. yesterday. She said the biopsy confirmed Celiac Sprue. She said the damage to my mucosa and villie are severe.

She ordered up a slew of blood tests to check for vitamin deficiencies, a bone density test, and a repeat of the CT scan I had in March that showed enlarged lymph nodes in my belly...the first test that showed a problem. My primary care Dr had me pegged as a hypochondriac and told me to eat Tums for my belly pains.

After I had the scope she gave me pics of my upper intestines and a tentitive diagnosis of C. Sprue. I looked it up and found out what it was and decided to stop eating gluten while waiting for the test results.

I checked the labels on everything before eating it, but then found out the "sneaky" names for gluten in an ingredient list. What I thought was gluten free wasn't.

The specialist I saw yesterday said.."don't eat gluten". That's all she said. I'm reading what I can online and I'm thankful for finding this forum.

I've been seeing things like..seperate cutting boards, pans, wooden spoons, etc. Do I really have to scrub the dickens out of everything? Not handle dog food?

It's going to be tough. I opened the container of Olivio spread to add it to my potato yesterday and found toast crumbs in it from my husband. I told him he can't leave crumbs in things and he laughed at me and told me to "scrape it off".

[psawyer]

Sensitivity levels vary from individual to individual. Here's what I know after eleven years.

The effect of gluten on your system is a function of the *total* amount of gluten actually ingested. You can eat a slice of "gluten-free" bread at 10 ppm, or two slices at 5 ppm--the amount of gluten you ingest is the same.

What you need to do is keep the total gluten ingestion small enough that the autoimmune reaction does not overtake the continuous healing of the body. Every bit counts, so the more you can prevent the better.

Some things are porous, and can not be cleaned effectively: wooden cutting boards and spoons come to mind. Any material with visible scratches fit here, too.

Some things are impossible to clean of crumbs effectively: you can not share a toaster.

Most things can be washed thoroughly and safely used. Cutlery, metal pots and pans in good condition (cast iron is a special case), plates, glasses would be in this group. An automatic dishwasher is effective for this. If you are worried, a double wash may make you feel safer. When we had a mixed kitchen, we only used the single wash cycle, and I never had any problems.

These may also be of help:

Unsafe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

A list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." Open Original Shared Link This makes shopping MUCH easier.

[GFinDC]

Yep, trace amounts will get cha! Celiac is an auto-immune disease, and the damage is caused by your own bodies immune cells attacking the tissues. Your immune system like germs not so very much, and so it attacks and kills them. It also keeps attacking for a while. Celiac makes your immune system think your gut lining is an invader when their is gluten stuck in it.

Shared toasters are crumb warehouses, with lots if gluten packages waiting to get in your gut and trigger a reaction. Shared condiments like butter or peanut butter, jelly etc are mine fields also. Shared pots and pans that aren't well washed are a problem, and so are wooden utensils that are rough and porus. The gluten molecules can get stuck in little places and come out later.

[okieinalaska]

Bubbas mom I wondered the same thing and after confirming it for myself the hard way i can say Yes, you do have to watch for contamination. However, I don't worry about handling the dog food or if there is gluten in my shampoo. But I do have my own toaster, peanut butter jar etc...and I wash everything in the dishwasher. The contamination adds up.

Best wishes,

[Darn210]

Yep, from my daughter's perspective, I see it as an accumulative effect. In general, I don't think my daughter is overly sensitive to contamination, but once she triggers a reaction, it takes a long time to return to "normal". I look at it this way, I prevent every possible crumb that I can see because I don't know how much she is ingesting that I can't see. I can see those crumbs in the butter so she has her own. I can't see how they handled her food in the restaraunt or how many ppm her store bought food contains.

[Bubba's Mom]

Thanks so much for your answers.

I guess I'm going into overwhelm at the changes I have to make? I can get a new toaster, maybe a couple of small frying pans too? A new cutting board shouldn't be hard, and some spoons? I think the hard part will be getting my husband and son to take contamination seriously? I shopped for some kind of pasta I can eat and it was pricey. I hate to give up spaghetti though. My hubby said I should just make both kinds of pasta and keep the pricey one for myself. It sounds like it might be better to just go all gluten free instead?

I'm wondering if once the gluten is out of my system, being exposed to it will give me a more severe reaction?

I've had such trouble sleeping I was taking a Xanax and Melatonin an hour before bedtime and two Benadryl just before hitting the hay. I just read the bottles last night. The Melatonin and Benadryl both have starch. No wonder it wasn't working!

[mushroom]

I've had such trouble sleeping I was taking a Xanax and Melatonin an hour before bedtime and two Benadryl just before hitting the hay. I just read the bottles last night. The Melatonin and Benadryl both have starch. No wonder it wasn't working!

Starch is not necessarily from wheat; it could be cornstarch - these are the two most common fillers. Unfortunately, you have to check with the manufacturers to find out which because they are not required to tell you (sometimes they don't even know themselves because they have purchased product ingredient from another company which did not specify). It can be a real pain checking meds. With scrips, sometimes the pharmacist will do it for you. You can call their 800 number or email the company to find out. I am in the process of doing that myself right now.

[Bubba's Mom]

Thanks..I'll call. I just assumed starch meant gluten.

I just got diagnosed and I called my pharmacy right away. I told them to add gluten to my allergy list and had them do a quick check to see if any of my current meds had gluten. They didn't..so that's good!

There are so many details to attend to!

[sa1937]

There are so many details to attend to!

Yes, it seems to be overwhelming at first but after awhile, it becomes automatic and so much easier. We do have to major in Label Reading 101.

[Bubba's Mom]

I'm so glad I mentioned the ingredients. I was told that dextrose meant gluten, but when I called about the Melatonin I was told it was from corn.

The generic Benadryl said starch only. It took two phone calls to track that down and I found out it's corn starch.

Maybe I'll get some sleep tonight?

[Bri69]

i was told by my doctor that it doesnt matter if its a trace or a slice of bread. the same damage is happening even if you dont feel the pain.

[GlutenFreeManna]

I'm so glad I mentioned the ingredients. I was told that dextrose meant gluten, but when I called about the Melatonin I was told it was from corn.

The generic Benadryl said starch only. It took two phone calls to track that down and I found out it's corn starch.

Maybe I'll get some sleep tonight?

Brand name Benedryl is gluten-free. My husband is sensitive to dyes and has different reactions to generic versus brand name meds. Some meds that make me sleep (like Benedryl) make him stay wide awake. So you might just try the name brand and see if it helps you more than the generic.

[psawyer]

i was told by my doctor that it doesnt matter if its a trace or a slice of bread. the same damage is happening even if you dont feel the pain.

For most of us, there is a definite relationship between the amount ingested and the magnitude of the reaction and recovery time. Your doctor's perspective is dangerous because it leads to the idea, "I've eaten one bite by accident, so now I might as well finish the whole thing."

[Bubba's Mom]

That's just what I thought! Surely the more you're exposed to, the bigger the reaction should be?

[GlutenFreeManna]

For most of us, there is a definite relationship between the amount ingested and the magnitude of the reaction and recovery time. Your doctor's perspective is dangerous because it leads to the idea, "I've eaten one bite by accident, so now I might as well finish the whole thing."

My reactions are the same whether I get a few crumbs or a large amount. I have NEVER thought "might as well eat the whole thing" if a little gets me by accident. I don't think that's what the dr was implying at all. I think it's just as dangerous to think that crumbs don't matter. Even people that don't get major reactions from small amounts may notice a culmulative effect over time. It's better to be overly cautious than to not worry at all about cc.

[GFinDC]

I don't know if the name brand Benedryl is really safer. The Feds took over control of the factory where it is made a while back because of quality concerns. So maybe it is ok now, with the Feds running things. Hmm, doesn't sound real believeable tho.

[Bubba's Mom]

Isn't it scary when you hear they could mess up medicines? For now, I'll stick to the generic. They were very nice about finding the ingredient info for me, and I'm glad I can still take it. It helps me sleep, but it also helps with my allergies. My son recently moved back home and brought his two dogs with him. I'm allergic to dogs.