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Triplets

New - On Strict Diet, But Getting Worse - Is This Common?

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I am new diagnosed and have been on a gluten-free, milk-free and legume-free diet since July 2nd. It seems that no matter what I eat I still end up with explosive diarrhea (and the accompanying discomfort and fatigue). I will have a good day and then several bad days. I can find nothing in my food diary to point to.

Help! Is this normal? Anyone else experience this? Will it go away over time...and how long if it will? I am taking gluten-free supplements and have probiotics (VSL) I can take, but I am wary every time I take a bite of anything. And yes, the sudden lack of energy and being able to plan anything (I am running a large event tomorrow and don't know how I will get through it) is really getting me down.

Anyone out there with any experiences or advice? I am nearly at my wit's end...

Thank you for any input...

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You might not be completely gluten free, do not eat any Quaker oats Rice Cakes.

Have you checked all your meds?

are you cooking with flour? & other gluten?

have you checked your personal care products, lotions etc.?

are you washing your hands before you touch your food?

did you get a new cutting board & replace other porous items in your kitchen? are you still using your old wheaty cast iron skillet? old non stick pans?

pet food? the list is endless on checking cross contamination. the learning curve is huge, it takes time to learn everything. (& to believe it...)

good luck, I hope you are better soon

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Thanks for the repsonse! I didn't know about wooden cutting boards or teflon pans. Could a shared toaster also be an issue? Do plastic items include tupperware, even after it has gone through the dishwasher?

I live on a ranch, so I habitually wash my hands, but could just my feeding my horses grains be doing it? I thought I had to ingest the gluten, but is there some other way? :huh:

Wow... I can get it from hand lotions? This is starting to feel overwhelming.

I guess what I cannot figure out is if I have radically reduced any contact with gluten, why am I getting worse...and getting worse fast? It seems so all of a sudden that I cannot eat almost any foods. Was this anyone else's experience?

Does anyone know of a site that has a comprehensive list? I feel like I am trying to put together a crazy quilt of information.

Thanks again for your thoughts.

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I'd like to assume that your diet really is gluten-free, but judging from my own experience and what I've read here, it's quite likely that you are not as gluten-free as you think you are! (And please pardon me if I'm wrong, which is also possible!)

The following contain gluten:

Rice Krispies (contains malt, which is gluten)

Corn Flakes (contains malt, which is gluten)

Krispix Cereal (same)

Corn Chex Cereal (same)

deli tuna salad (contains bread crumbs)

"lite" ice creams (contain wheat flour or wheat starch)

soy sauce (most brands contain wheat)

oats and oatmeal (including oatmeal lotion and oatmeal baths)(also make sure your toiletries DON'T contain wheat germ oil)

spelt (it's another form of wheat, actually)

Rice Dream Rice Milk (yes, it says "gluten-free," but that's because they are LEGALLY allowed to call their product gluten-free if it has less than 200 parts per million of gluten; as it happens, they use barley enzymes, but they are not legally required to list barley as an ingredient)

If what I wrote is a huge surprise to you, you might want to post a sample of your daily menu and the old-timers here can offer suggestions. If you already knew all this, you're way ahead of where most of us here were after only a few months!

Other possible sources for the blowouts might be:

eating gluten-free bread substitutes (I know this sounds crazy, but those are actually VERY tough for a gluten-damaged tummy to digest--wait a couple of months until your tum has healed before trying)

a systemic yeast infection

Lyme disease or Rocky Mt. Spotted Fever (THere's a HUGE list of people on this board with Lyme Disease--look for the Lyme disease thread)

heavy metal toxicity (many on this board have an overload of mercury, from dental amalgams or from vaccines, or from other sources--look for the "OMG-- I might be on to something" thread)

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Hi Triplets, sorry for your troubles.

Yes, throw away ALL your tupperware OR use glassware for your leftovers/storage (keeping the tupperware for the rest of the family or friends). Or buy the cheap ziplock or glad containers for your use.

All plastic cookware is suspect if previously used with gluten.

Metal, glass, porcelain and china should be ok. (Non-stick pans should be replaced if scratched or more than a few weeks old.)

I have horses and chickens. I was getting glutened by the chicken layer feed and horse grain. I started wearing a dust mask (like painters wear) - cheap and effective. I though about wearing a respirator like painters use for fumes but I think the disposable face masks are ok. I haven't gotten sick since I started using them. I know that there is gluten on my barn gloves and barn coat, pants etc., so I put the mask on before I put on my coat/gloves. The neighbors must laugh at me but I don't care -they're not the ones getting sick.

And when I come in from the barn, I take off the gloves/coat/hat first, then I wash my hands and up to wrists/elbows.

Good luck and you'll be fine. It just takes a while - it's a very steep learning curve. Ask more questions.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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Thank you Laura for this information! From the responses, I have the diet covered (even caught on to Rice Krispies and Quaker Oats rice cakes), but it never occurred to me that I would also have to get rid of all cooking utensils that are pourous. Your list really helps! Today was such another bad one that knowing that there is something I missed gives me a lifeline to grab onto. Especially helpful is your information about feed. I will try a painter's dust mask and see if that helps. I have this image of the horses, sheep, miniature horses, ducks and dogs all standing there with a hoof or paw over their mouths sniggering. :P

I really appreciate this info - thanks!

Deirdre

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Thank you Laura for this information! From the responses, I have the diet covered (even caught on to Rice Krispies and Quaker Oats rice cakes), but it never occurred to me that I would also have to get rid of all cooking utensils that are pourous. Your list really helps! Today was such another bad one that knowing that there is something I missed gives me a lifeline to grab onto. Especially helpful is your information about feed. I will try a painter's dust mask and see if that helps. I have this image of the horses, sheep, miniature horses, ducks and dogs all standing there with a hoof or paw over their mouths sniggering. :P

I really appreciate this info - thanks!

Deirdre

Oh, yeah, I forgot about dog and cat food, if you have them.

For dog food, we use EVO which is gluten free. The gluten-free cat food made our cat sick, so the food she eats (Avoderm) does have some gluten. But she's an outdoor cat and I have someone else feed her.

But if you have indoor pets they should be on gluten-free food so they don't lick you and/or their fur and get the gluten spread around.

~Laura

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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