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Kauk

I Am New And Have A Question.

By Kauk, in Coping with Celiac Disease

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Kauk    0

Kauk
Posted

I have had this disease for about 2 years and I am fiding so many conflicting things about Modifyed starch, corn starch and such. Recently I wentr on a pill that has Modifyed starch..and I dont know of its bad..I feel worse and am way off since... I have always avoiced Modifyed corn starch but was told it was ok...now I am so confused. Anyone able to help?

Rebecca

Gluten Free for 3 years.

An Aunt came to me and told me she Celiac Disease. (Had not spoken to her in 8 years) She said I should be tested and I did, however I had never heard of it before then.

I suffered with severe depression since 14. Took two kinds of meds that didnt help me at alll. After Celiac, I take no meds at all and feel great.

I am a new woman and life has changed. :)

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darlindeb25    5

darlindeb25
Posted

Rebecca, are you in the US? With the new allergen laws, the allergens must be listed on the label. Modified food starch is said to be ok now, what you are reading is info we used to live by. I too, worry about it though, and usually stay away from items that say "food starch"! Modified corn starch is fine, as long as you are not intolerant of corn, it does not contain gluten.

As for meds, those are not regulated in the same way. Many times the fillers may contain gluten. You should get in touch with the company that makes the product and ask it's gluten status. Most companies now do know what gluten is.

An example is Xanax. I was taking it for years, was told it was gluten free, and yet I had a reaction to it within 12 hours of taking it. I always thought the reaction must be just my body, not the Xanax, since they said it was gluten-free. Well, in time, Pfizer finally stated that Xanax was not gluten free, then they said they never said it was. I had been taking the generic brand made by Greenstone labs, which turns out, is a subsidiary generic brand company owned by Pfizer. So, all along, I was being glutened. It took me a long time to find a generic brand that is gluten-free, but I do finally have it. You must call these companies personally, and get your own info. I trusted Glutenfreedrugs.com and have learned my lesson. They are still listing Xanax as gluten-free.

Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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gfp    0

gfp
Posted

Rebecca,

I'm in the UK but I have to agree with everything deb said....

Quite honestly I don't trust the "If it's doesn't say then it's not from wheat" because of reactions similar to Deb...

(generic asprin amongst others)....

Like Deb's I then investigated and got the same response... "We never claimed it was gluten-free" ...

This has happened to me on so many things I really have 'trust issues' with companies and the lengths they go to disguise stuff. The ONLY real way is by writing a letter or email and put thewm on the spot...

Make it VERY CLEAR... don't give them loopholes etc. to give a vague answer.

Can you guarantee that <> is 100% gluten free.

Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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ravenwoodglass    1,429

ravenwoodglass
Posted

Unfortunately as stated the regs for inert ingredient labeling for meds just don't exist. I think another issue is the insistance that wheat starch can be made gluten-free by processing. If drug companies believe that wheat starch can be processed to take ALL the gluten out they can still tell us legally that the pill is gluten-free. Thank you codex standards GRRRRRRRRRRRR.

Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Kauk    0

Kauk
Posted

Thanks all.

I have to ask because I was told once...Gluten free...doesnt mean Wheat free....Is that true. Some of my packages say wheat AND gluten free. I wonder if its gluten free and wheat free......

I eat Modifed dorn starch and I seem to do worse...I dont kow why...Its weird. My mood ghoes south, hoever I can eat corn chips and stuff like that. I dont know what to do about the pill. Off it for 2 days and I feel better. I am not so dead tired and I feel I can eat again. UGH!!!! lol

Thanks for the replies guys. I am from Canada too..:D

Gluten Free for 3 years.

An Aunt came to me and told me she Celiac Disease. (Had not spoken to her in 8 years) She said I should be tested and I did, however I had never heard of it before then.

I suffered with severe depression since 14. Took two kinds of meds that didnt help me at alll. After Celiac, I take no meds at all and feel great.

I am a new woman and life has changed. :)

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happygirl    7

happygirl
Posted

Its the other way around. Something that is gluten free is wheat free. But wheat free doesn't always mean gluten free, since 'gluten' is in rye, barley, and contaminated oats also.

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Kauk    0

Kauk
Posted
Its the other way around. Something that is gluten free is wheat free. But wheat free doesn't always mean gluten free, since 'gluten' is in rye, barley, and contaminated oats also.

OHHHHHHHHHHHHHHHHH!!!!!!!!! LMAO Thanks for clearing that up for me..Thats a huge help for me.

HUGS

Kauk

Gluten Free for 3 years.

An Aunt came to me and told me she Celiac Disease. (Had not spoken to her in 8 years) She said I should be tested and I did, however I had never heard of it before then.

I suffered with severe depression since 14. Took two kinds of meds that didnt help me at alll. After Celiac, I take no meds at all and feel great.

I am a new woman and life has changed. :)

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gfp    0

gfp
Posted
Its the other way around. Something that is gluten free is wheat free. But wheat free doesn't always mean gluten free, since 'gluten' is in rye, barley, and contaminated oats also.

It's both....

As Ravenswood said the insistence that wheat starch can be rendered 'gluten free' (<20ppm) means it can contain gluten and claimed to be gluten-free.

Just as it can say wheat free and contain rye or barley.

This unfortunately leaves us in a no mans land or between the rock and hard place....

Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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