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Cranberry Juice, Vitamin Supplements,tofu (And More)


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26 replies to this topic

#1 nodrog

 
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Posted 29 June 2013 - 06:16 AM

For several months I had been, and have been, having trouble with an excess amount of gas, bloated abdomen, and so on. My primary physician suggested I take Beano and simethicone to relieve these symptoms.  These didn't seem to be working, so he sent me to have blood work done and to provide stool samples.  None of these tests resulted in anything that stood out.  He then had me get a cat scan.  Again, nothing stood out. (Meanwhile he had me continue taking the Beano and simethicone) In desperation, or perhaps in exasperation, he referred me to a gasterenterolgist.   The gasterenterologist  had me stop taking the Beano and simethicone and instead has me on a probiotic (Align). He also had me stop taking the antibiotic medication I was using to manage a urinary tract infection. He, too, sent me to have blood work done and to provide stool samples.  In adition, he sent me to have xrays and a flouroscopy done. He has me scheduled for a followup appointment this coming Tuesday.  And he suggested I might be allergic to celiac and gluten intolerant, which has lead me to ask the following questions. 

 

If a product is not labeled gluten-free, does that mean it is not gluten-free? Do some food producers not think it is important to label something gluten-free or not? For example the tofu I buy at Trader Joe's is not labeled gluten-free, but I had read somewhere that tofu in general is gluten-free. My local Trader Joe's has a list of gluten-free products, probably a nation-wide generated list.  The list indicates that the Trader Joe's canned pink salmon is gluten-free, but the can says nothing about being gluten-free.

 

I also drink Langer's Zero Sugar Added Cranberry Joice to ward off urinary tract infections, but the label says nothing about it being gluten-free.  What should I be reading on the juice label ingredients to warn me if I am gluten intolerant?

 

How about vitamin supplements?  I noticed that the fourth ingredient on my Centrium multivitamin shows Mannitol (Wheat), so I guess I'll have to stop taking this supplement.  This leads me to another question.  For over twenty years, I have had an ileostomy.  That means, among other things, that I cannot use gel forms of medications because I cannot absorb them properly. Instead, I need to take capsule, chewable, or liquid forms of medication.  (I use a fish oil omega three supplement, instead of a gel tablet.)

 

I know these are lot of questios to pose for a first post, and I even may have omitted some questions that slipped my mind, but I would greatly appreciate your advice and suggestions and eagerly await your responses.

 

Thank you very much.

 

 

Gordon

 

(By the way, the Align doesn't seem to be having any affect on my symptoms.)

 

 

 

 


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#2 Mr. GF in Indiana

 
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Posted 29 June 2013 - 07:53 AM

First congrats on using doctors to pursue your difficulty. However, if he wants to test you later for
villous atrophy (celiac gut damage) you need to keep eating gluten for now. The test could turn up
negative, you could still be gluten sensitive even so, just not "celiac".

Labels in the US are unregulated as to wheat content (or corn, for that matter...lots of people have trouble with corn, celiac or not). You take your chances, check the "search" function on celiac.com for foods and drugs by brand name, lots of information here. You can, if the food is important enough, buy test kits for wheat gluten down to 20 ppm sensitivity or better.

Your statistical odds of having "celiac" or "gluten sensitivity" WITH provable symptoms or consequences, are actually very small, meaning your problems can also be one of many other unfortunate conditions. http://farrp.unl.edu.../celiac-disease
http://glutenfreewor...e/#.Uc8A3fvD8kL

I used align, found it worthless and most probiotics don't do much for most people (unless they are just finished with antibiotic).
In order best to find out what foods and problems you may have...if any can be proven...consider doing an "elimination diet" where you find foods that don't trigger the symptoms, no matter how narrow that may be, then add one food at a time until you think you have the symptoms, repeat, and do research on the internet. This can require considerable discipline and a long time and multiple trials. I found sites such as rightdiagnosis.com to be helpful. Avoid jumping to conclusions; if you focus on one medical condition, use pubmed.com to read the articles description (and limits of each study) for yourself. Also check rxlist.com for all of your medication cross-reactions, it's surprising how difficult it is to avoid side effects as well (since many gut problems come from medications).
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Best Wishes!    Gary

 

Misdiagnosed 62 years; finally medically confirmed Celiac/prolamin 2010

No corn, wheat, rye, barley, oatmeal, sorghum; rice is tolerated.  Salicylate sensitive.

Vitamin D and B deficiency, thyroid deficiency, bleeding disorder (all improving slowly).

Neurologically disabled, retired attorney.

 

Only you can take care of you; random advice from someone on the internet does not substitute for your own doctor!


#3 kareng

 
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Posted 29 June 2013 - 08:04 AM

,

Labels in the US are unregulated as to wheat content (or corn, for that matter...lots of people have trouble with corn, celiac or not). ).



This is not true. In the US, wheat falls under the Allergen labeling laws. It must be declared in a food ingredients.

Corn is considered safe for Celiacs.
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#4 notme!

 
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Posted 29 June 2013 - 08:32 AM

 I noticed that the fourth ingredient on my Centrium multivitamin shows Mannitol (Wheat), so I guess I'll have to stop taking this supplement.  This leads me to another question. 

 

mannitol is a sugar alcohol derived from a sugar 


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

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have a nice day :)

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#5 cyclinglady

 
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Posted 29 June 2013 - 09:57 AM

I can address the probiotic.  Its purpose is to re-populate your intestinal tract with good bacteria.   After ending a course of a broad-spectrum antibiotic, you often wipe out or reduce both "good and bad" bacteria.  (Everyone (bacteria and fungus) is jockeying for wall space!)  An unbalanced intestinal tract can lead to all kinds of problems (fungal, bad bacterial over-growth, etc.)

 

So, probiotics are beneficial but don't help with immediate symptoms.  My MD began recommending them almost 20 years ago after ever course of antibiotics he prescribed. I even give them to my dog after she's been given antibiotics.  


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#6 Mr. GF in Indiana

 
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Posted 29 June 2013 - 12:29 PM

This is not true. In the US, wheat falls under the Allergen labeling laws. It must be declared in a food ingredients.

Corn is considered safe for Celiacs.


Please feel free to believe whatever works for you and whatever you like. Where I live however, wheat is neither labeled on food cans sitting in my own kitchen, if one knows the hundreds of names under which wheat ingredients hide, or has called the manufacturer (example, wheat is used to act as a paste in wine barrels and to "fine" the wine...think that's disclosed?).

Due to my wheat gluten-identical reactions to eating any corn (maize) I have researched this extensively. It is shown conclusively up to half of "celiacs" show an inflammatory response to corn, demonstrated in a "rectal challenge".
http://www.ncbi.nlm....pubmed/11252409
The same test is used to show that celiacs react chemically to casein (the protein in milk, which is almost identical to the gluten protein). "A mucosal inflammatory response similar to that elicited by gluten was produced by CM protein in about 50% of the patients with coeliac disease. Casein, in particular, seems to be involved in this reaction." http://www.ncbi.nlm....pubmed/17302893

Also, sorghum (a very close corn relative but a major food crop) is thought to be safe for "celiacs"; it isn't if the problem is a prolamin problem, not merely a wheat gluten problem (beware cross contamination, of course).

NOTE: there are about twenty-five thousand medical articles on celiac (coeliac) in worldwide medical journals just in English language alone (see, pubmed.com and other search engines). Please see the Cochrane reviews as to the low quality of many studies and their general statistical methods and reliability or undisclosed conflicts of interest.
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Best Wishes!    Gary

 

Misdiagnosed 62 years; finally medically confirmed Celiac/prolamin 2010

No corn, wheat, rye, barley, oatmeal, sorghum; rice is tolerated.  Salicylate sensitive.

Vitamin D and B deficiency, thyroid deficiency, bleeding disorder (all improving slowly).

Neurologically disabled, retired attorney.

 

Only you can take care of you; random advice from someone on the internet does not substitute for your own doctor!


#7 kareng

 
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Posted 29 June 2013 - 01:26 PM

Please feel free to believe whatever works for you and whatever you like. Where I live however, wheat is neither labeled on food cans sitting in my own kitchen, if one knows the hundreds of names under which wheat ingredients hide, or has called the manufacturer (example, wheat is used to act as a paste in wine barrels and to "fine" the wine...think that's disclosed?).Due to my wheat gluten-identical reactions to eating any corn (maize) I have researched this extensively. It is shown conclusively up to half of "celiacs" show an inflammatory response to corn, demonstrated in a "rectal challenge".http://www.ncbi.nlm....pubmed/11252409The same test is used to show that celiacs react chemically to casein (the protein in milk, which is almost identical to the gluten protein). "A mucosal inflammatory response similar to that elicited by gluten was produced by CM protein in about 50% of the patients with coeliac disease. Casein, in particular, seems to be involved in this reaction." http://www.ncbi.nlm....pubmed/17302893Also, sorghum (a very close corn relative but a major food crop) is thought to be safe for "celiacs"; it isn't if the problem is a prolamin problem, not merely a wheat gluten problem (beware cross contamination, of course).NOTE: there are about twenty-five thousand medical articles on celiac (coeliac) in worldwide medical journals just in English language alone (see, pubmed.com and other search engines). Please see the Cochrane reviews as to the low quality of many studies and their general statistical methods and reliability or undisclosed conflicts of interest.

I will state once again, in the US, wheat as an ingredient in food cannot " hide". If you believe a manufacturer is " hiding " gluten in a food and have proof of that, you should report it. There is a way to do that on the FDA website, I believe.


But seriously...from that study you cited, it doesn't mention corn. The second study gave them gluten with the milk protein.

"Rectal challenge with gluten results in increased luminal levels of NO in a group of patients with treated coeliac disease. Further studies are needed to evaluate the role of NO in coeliac disease and the potential usefulness of rectal NO measurements in aiding diagnosis of this intestinal disorder."
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#8 kareng

 
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Posted 29 June 2013 - 01:55 PM

Here's the link so you can report the unlabeled gluten foods you have purchased

http://www.fda.gov/F...u/ucm334249.htm
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#9 IrishHeart

 
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Posted 29 June 2013 - 03:21 PM

and most probiotics don't do much for most people (unless they are just finished with antibiotic).
 

 

I am afraid I have to disagree with you, strongly on this one  (and I will get to the erroneous statement about wheat paste and wine later <_< maybe )

.

Dr. Guandalini of the Univ.of Chicago Celiac Center has written an article in the book Real Life With Celiac Disease

by Melinda Dennis and Daniel Leffler about probiotics and their usefulness in treating inflammation in celiac's guts.

 

Other articles have been published in Pub Med that show that they help reduce inflammation in  the gut in people with microscopic colitis, C. Diff, IBS  and Crohn's. etc..

 

A wide spread statement like "most probiotics don't do much for most people" because  is simply untrue.

Many people on this site will attest to their usefulness.

They have helped me enormously as I had no detectable levels of beneficial gut bacteria upon DX and my GI tract was in flames. I am right as rain for the first time in life and my own GI doctor believes in their efficacy.

 

This article sheds some light for the OP:

 

http://thefooddoc.com/probiotic_facts


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

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"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

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#10 IrishHeart

 
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Posted 29 June 2013 - 03:32 PM

. It is shown conclusively up to half of "celiacs" show an inflammatory response to corn, demonstrated in a "rectal challenge".
http://www.ncbi.nlm....pubmed/11252409
 

 

 

Why do you use " " around the word "celiacs"?? just curious.

 

Ok, here is what I saw in this Pub Med article:

 

" The aim of this study was to evaluate whether rectal challenge with gluten would trigger an increased local production of the gas nitric oxide (NO), a novel marker of intestinal inflammation"

 

"20 patients with treated coeliac disease and in 13 healthy controls. Luminal levels of NO were measured in the rectum ".

 

How on earth does a study of 20 patients undergoing a rectal challenge with gluten ....show an inflammatory response to corn?????


Edited by IrishHeart, 29 June 2013 - 07:10 PM.

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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#11 Lisa

 
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Posted 29 June 2013 - 05:48 PM

You will need to read lables and also make some judgement calls.

 

The US labeling law is not in place yet, but hopefully soon.  Until then, it's voluntary without regulation.

 

Wheat is required, due the allergin law, to be listed.  And sometimes you have to deside if a product includes malt or barley.  Or call the manufacturer.

 

Certified Gluten Free Products ARE tested to be withing the safe limites for most people with Celiac.

 

I generally read the labels of companies that will always disclose all forms of gluten, such as Kraft, Unilever and Hormel  (I think I'm missing one...)  But, still...nothing goes into my cart without me reading the label.
 


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#12 Mr. GF in Indiana

 
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Posted 29 June 2013 - 07:44 PM

Hmm...here's the study on corn.  http://www.ncbi.nlm....pubmed/15888782.  I missed.  Since I have over 5000 celiac-oriented articles copied and indexed, clicking the slightly wrong place is rather a hazard of computers.  If anyone has further questions or thoughts on what that all means, or the reason that corn gluten and casein resemble and act on many people in the identical way as if it is wheat gluten (because on a molecular level of the important fraction, it is in general)...feel free to do your own research on PubMed, on its British equivalent, and the French and German versions, and draw your own conclusions (although it seems most major German studies are getting into English...but not all). Every study has its limitations, unfortunately.   Note:  use the word "maize" as well as "corn".  Also, scientists use the word "celiac" in all sorts of senses, one quickly learns that each has a different definition (also, "coeliac" if one is British, Maladie cœliaque if French, etc).      

 

I find that amazon has the largest list of gluten free packaged foods, but I am able to get them locally so far and haven't had to order from them, but the list is useful, maybe you can find the products you like in a competing, but marked "gluten free" package?      


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Best Wishes!    Gary

 

Misdiagnosed 62 years; finally medically confirmed Celiac/prolamin 2010

No corn, wheat, rye, barley, oatmeal, sorghum; rice is tolerated.  Salicylate sensitive.

Vitamin D and B deficiency, thyroid deficiency, bleeding disorder (all improving slowly).

Neurologically disabled, retired attorney.

 

Only you can take care of you; random advice from someone on the internet does not substitute for your own doctor!


#13 kareng

 
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Posted 30 June 2013 - 05:11 AM

Hmm...here's the study on corn. http://www.ncbi.nlm....pubmed/15888782. I missed. Since I have over 5000 celiac-oriented articles copied and indexed, clicking the slightly wrong place is rather a hazard of computers. If anyone has further questions or thoughts on what that all means, or the reason that corn gluten and casein resemble and act on many people in the identical way as if it is wheat gluten (because on a molecular level of the important fraction, it is in general)...feel free to do your own research on PubMed, on its British equivalent, and the French and German versions, and draw your own conclusions (although it seems most major German studies are getting into English...but not all). Every study has its limitations, unfortunately. Note: use the word "maize" as well as "corn". Also, scientists use the word "celiac" in all sorts of senses, one quickly learns that each has a different definition (also, "coeliac" if one is British, Maladie cœliaque if French, etc).

I find that amazon has the largest list of gluten free packaged foods, but I am able to get them locally so far and haven't had to order from them, but the list is useful, maybe you can find the products you like in a competing, but marked "gluten free" package?

..6 people had a slight reaction to someone putting corn in their rectum.

Some of these studies of 10-20 patients that you keep putting on this forum actually say that they are just a preliminary study and more in depth study needs to be made.

If corn bothers you....sorry. don't eat it. But to say that a large % of Celiacs can't eat it safely is not in align with current recommendations.

http://www.curecelia...-contain-gluten
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#14 nodrog

 
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Posted 30 June 2013 - 03:30 PM

This is all very confusing, but thanks for all the responses. I'm sorry not to have replied sooner, but I keep on getting locked out.

 

 

Gordon


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#15 kareng

 
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Posted 30 June 2013 - 03:43 PM

This is all very confusing, but thanks for all the responses. I'm sorry not to have replied sooner, but I keep on getting locked out.


Gordon

Sorry you thread got hijacked.

To answer your question about foods labelled gluten-free. In the US, there is no definition of gluten-free. Many companies choose to test for gluten and label gluten-free. Some label gluten-free if they use no gluten in the product. Many don't bother to label gluten-free but that doesn't mean there is gluten in the ingredient. For example, canned tomatoes - ingredients : tomatoes, water, salt. That is gluten-free. Probably not labelled gluten-free or tested for gluten as ere is no reason to add that expense to the product.

Because we have no law for what is gluten-free, many companies are waiting to label things gluten-free. Also, its a bit misleading for a company to label an apple as gluten-free. It is naturally gluten-free.

We're you tested for Celiac? You should not eat gluten-free until all the testing is done or they might come up negative. You produce the antibodies and the damage, that is being tested for, when eating gluten. No gluten, no antibodies, basically. Also, Celiac isn't an allergy it is an autoimmune disease.

Have you read the Newbie thread? A lot of basic info there.

Let me get the link
http://www.celiac.co...ewbie-info-101/
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