Close Family Member...dealing With A Tragedy

[elye]

I wasn't sure where to put this topic, as it deals with a couple of things. I'll start with the symptom part. A very sad story: three months ago my 56-year old brother- in- law John had a massive ischemic stroke. Thirty percent of his brain is now dead--so tragic. He is in a long-term care hospital now, and we know he won't be getting out.

Ever since I was diagnosed with celiac and learned all that I have, I've often suspected that John is celiac or gluten intolerant. He has had GI problems for years, anemia and needing B 12 shots, etc. Now, he is on a feed tube, so all he is consuming is the liquid meal replacement. He is continually having wicked GERD (as he has for years), very loose stools, anemia. I have read the ingredients on the meal replacement box and don't recognise anything that looks like gluten. I went on their website and didn't find anything about it either way. I forget the brand name, but I will get it and mention it in my next post. Anyway, does anyone know if these liquid meals are gluten-free across the board?

Also, he has blood in his stool. I have not seen that mentioned as a symptom of small bowel/villi damage, but it would make some sense. Anyone ever had bleeding stools attributed to gluten? I truly appreciate ANY feedback!

[mcoop911]

So sorry to read about your family member's tragic event and the sadness this brings.

To respond to your question, I recently had an appointment with a registered dietician for the purpose of discussing gluten and meal replacements. She ensured me that the branded products like ENSURE and BOOST are indeed gluten-free. These liquids, I would think, are appropriate for a nasal-gastric tube feeding albeit I have not done it myself. Reading the ingredients with your critical eye (not a hospital person) would be the best. I know hospitals also use Carnation Instant Breakfast but know nothing about their contents or taste. Since I noticed your from Canada you may need to do things differently with products? or are all products the same in origin?

Good luck, I went through the same thing with my father many years ago, it is a family tragedy all the way around.

[Mtndog]

Emily- I am so sorry...I had no idea. I think that you should ask your sister if she would consider having him tested.

I know when my mom was ill, all the food drinks (like Ensure Boost etc.) had lactose and if his villi are damaged, the lactose may be bothering him.

Also, if he has internal hemmorhoids, he could have blood in his stools.

Again, I'm so sorry. I will keep you all in my prayers. Hugs, Beverly

[Viola 1]

I am so sorry, that really is very sad.

Bleeding in the stool could also be sign of a bleeding ulcer. Is his medical team aware of this problem?

[elye]

Yes, the medical team is aware of everything that could be causing the bloody stools (everything except celiac, they would state, I'm sure). He has had, I believe, ulcer-like problems in the past...and there is something ELSE that I have not heard connected to undiagnosed celiac...ulcers...anyone had that connection made? The reasons I strongly suspect celiac with John is his history of GERD, his malabsorption issues and GI irregularities. His daughter and son from a first marriage have both been diagnosed with Crohn's (mistakedly?)...

My sister is now insisting that they run the blood panel for celiac.

Before the stroke, I always used to mention to John that he should be tested. He eventually had the endoscope done for the chronic anemia, and they obviously saw no obvious villi damage because gluten tolerance was never diagnosed. But we all know about the questionable reliability of the tests. I'm so sorry that I didn't try harder to get him to try a gluten-free diet when he was healthy. We could have our answers, and perhaps his last few months could be much more comfortable. The name of his meal replacement is Novartis...

[Ann1231]

My Dad's family has a huge history of ulcers and celiac. My uncle died from untreated celiac that basically destroyed his insides. My Dad had ulcers since childhood as well as kidney cancer, lung cancer, prostate cancer, and liver cancer. He never got tested but now, seeing my symptoms and knowing all his (extreme gas, gerd, anemia, etc), and knowing most his siblings have tested positive, we believe he had celiac. I personally have bleeding stools anytime I have gluten. I started with that symptom in jr. high, scared me to death when it started! I didn't know about the celiac until a few years ago, I'm 44 now. That's a lot of years with it untreated, I know.

I hope they find what is causing John's and that he gets the treatment he needs.

Prayers to you,

Ann

[Ann1231]

sorry, it double posted

[Mtndog]

My sister is now insisting that they run the blood panel for celiac.

Before the stroke, I always used to mention to John that he should be tested. He eventually had the endoscope done for the chronic anemia, and they obviously saw no obvious villi damage because gluten tolerance was never diagnosed. But we all know about the questionable reliability of the tests. I'm so sorry that I didn't try harder to get him to try a gluten-free diet when he was healthy. We could have our answers, and perhaps his last few months could be much more comfortable. The name of his meal replacement is Novartis...

Oh my gosh Elye, your post broke my heart. I didn't realize he was dying. I'm so so so sorry for you and your sister and John. I am sending you much love and hope for comfort for ALL of you!

Novartis is a company. Did you mean Novasource? Novasource is gluten-free.

[elye]

Thanks so much for all your thoughts and prayers! Amazing how it can all help so much...

The nutrtional feed that John is getting is called Resource 2.0, by Novartis. I have heard that it is, in fact, gluten-free, but I cannot help but suspect...If it really is gluten-free, then we know for sure that John is not gluten-intolerant, as this is the only thing he is consuming. Can't imagine any way it could be cross-contaminated (although you never know in our less-than-perfect medical settings of today)! I visited him yesterday, and it makes me so sad to see him for all kinds of obvious reasons, but mainly due to his great discomfort from the acid reflux, the diahrrea, the low haemoglobin...and he cannot complain or speak clearly to us anymore. If I find out that his liquid food is gluten-free, then I can move on to other concerns. I know very little about casein intolerance, but I suspect that the symptoms are similar to gluten intolerance. And I DO know that the supplement is FULL of milk...

[angel-jd1]

Thanks so much for all your thoughts and prayers! Amazing how it can all help so much...

The nutrtional feed that John is getting is called Resource 2.0, by Novartis. I have heard that it is, in fact, gluten-free, but I cannot help but suspect...If it really is gluten-free, then we know for sure that John is not gluten-intolerant, as this is the only thing he is consuming. Can't imagine any way it could be cross-contaminated (although you never know in our less-than-perfect medical settings of today)! I visited him yesterday, and it makes me so sad to see him for all kinds of obvious reasons, but mainly due to his great discomfort from the acid reflux, the diahrrea, the low haemoglobin...and he cannot complain or speak clearly to us anymore. If I find out that his liquid food is gluten-free, then I can move on to other concerns. I know very little about casein intolerance, but I suspect that the symptoms are similar to gluten intolerance. And I DO know that the supplement is FULL of milk...

Here are some numbers for the USA Novartis company sites. Call and as for their pharmacist or their Chemist and ask about the gluten free status of the product. They should easily be able to help you.

-Jessica

Annandale, NJ

Business Unit: Chiron

Address: Novartis Vaccines and Diagnostics,

Inc., Annandale Site

P.O. Box 990

Annandale, NJ 08801

USA

Phone: +1 908 7301200

Fax: +1 908 7301217

Site Address: Novartis Vaccines and Diagnostics,

Inc., Annandale Site

1545 Route 22 East

Annandale, NJ 08801

Broomfield, CO

Business Unit: Generics

Address: Sandoz Inc., Broomfield Manufact.

P.O. Box 446

Broomfield, CO 80038-0446

USA

Phone: +1 303 4662400

Fax: +1 303 4384474

Site Address: Sandoz Inc., Broomfield Manufact.

2555 West Midway Boulevard

Broomfield, CO 80020

URL: Open Original Shared Link

Cambridge, MA

Business Unit: Pharmaceuticals

Address: Novartis Institutes for BioMedical

Research, Inc.

250 Massachusetts Avenue

Cambridge, MA 02139

USA

Phone: +1 6178718000

Fax: +1 N.A.

Cambridge, MA

Business Unit: Pharmaceuticals

Address: Novartis Institutes for BioMedical

Research, Inc.

220 Massachusetts Avenue

Cambridge, MA 02139

USA

Phone: +1 6178718000

Fax: +1 N.A.

Cambridge, MA

Business Unit: Pharmaceuticals

Address: Novartis Institutes for BioMedical

Research, Inc.

500 Technology Square

Cambridge, MA 02139

USA

Phone: +1 6178718000

Fax: +1 N.A.

Cambridge, MA

Business Unit: Pharmaceuticals

Address: Novartis Institutes for BioMedical

Research, Inc.

400 Technology Square

Cambridge, MA 02139

USA

Phone: +1 6178718000

Fax: +1 N.A.

Dayton, NJ

Business Unit: Generics

Address: Sandoz Inc., Dayton Site

2400 Route 130 North

Dayton, NJ 08810-1519

USA

Phone: +1 732 2742400

Fax: +1 732 2748989

URL: Open Original Shared Link

Duluth, GA

Business Unit: CIBA Vision

Address: CIBA Vision Corporation

11460 Johns Creek Parkway

Duluth, GA 30097

USA

Phone: +1 7704763937

Fax: +1 N.A.

URL: Open Original Shared Link

East Hanover, NJ

Business Unit: Pharmaceuticals

Address: Novartis Pharmaceuticals Corporation

One Health Plaza

East Hanover, NJ 07936-1080

USA

Phone: +1 8627788300

Fax: +1 9737818265

URL: Open Original Shared Link

Emeryville, CA

Business Unit: Chiron

Address: Novartis Vaccines and Diagnostics, Inc.

4560 Horton Street

Emeryville, CA 94608-2916

USA

Phone: +1 510 6558730

Fax: +1 510 6013343

URL: http:/www.chiron.com

Emeryville, CA

Business Unit: Chiron

Address: BioCent Insurance Company, Inc.

4560 Horton Street

Emeryville, CA CA 94608-2916

USA

Phone: +1 808 5853530

Fax: +1 808 NA

Emeryville, CA

Business Unit: Chiron

Address: MemRx Corporation

4560 Horton Street

Emeryville, CA 94608-2916

USA

Phone: +1 510 6558730

Fax: +1 510 6013343

Emeryville, CA

Business Unit: Chiron

Address: Sagres Discovery, Inc.

4560 Horton Street

Emeryville, CA 94608-2916

USA

Phone: +1 510 6558730

Fax: +1 510 6013343

Fremont, MI

Business Unit: Consumer Health

Address: Gerber Products Company, Fremont Site

445 State Street

Fremont, MI 49413

USA

Phone: +1 231 9282000

Fax: +1 231 9282723

URL: Open Original Shared Link

Greensboro, NC

Business Unit: Animal Health

Address: Novartis Animal Health US, Inc.

3200 Northline Ave.

Suite 300

Greensboro, NC 27408

USA

Phone: +1 336 3871000

Fax: +1 336 3871066

URL: Open Original Shared Link

Greensboro, NC

Business Unit: Animal Health

Address: Novartis Animal Health US, Inc.,

Farm Animal Business

3200 Nothline Ave.

Suite 300

Greensboro, NC 27408

USA

Phone: +1 336 3871000

Fax: +1 336 3871066

URL: Open Original Shared Link

Holly Springs, NC

Business Unit: Chiron

Address: Novartis Vaccines and Diagnostics,

Inc., Holly Springs Site

Rosewood Business Center

2500 N. Main Street

Holly Springs, NC 27540

USA

Phone: +1 919 3032196

Fax: +1 919 NA

Lake Success, NY

Business Unit: Generics

Address: Eon Labs, Inc.

1999 Marcus Avenue

Lake Success, NY 11042

USA

Phone: +1 516 4789700

Fax: +1 516 4789810

URL: Open Original Shared Link

Laurelton, NY

Business Unit: Generics

Address: Eon Labs, Inc., Laurelton Site

227-15 N. Conduit Avenue

Laurelton, NY 11413

USA

Phone: +1 718 2768600

Fax: +1 718 7238041

New York, NY

Business Unit:

Address: Novartis Corporation

608 Fifth Avenue

New York, NY 10020

USA

Phone: +1 2123071122

Fax: +1 2122460185

Newark, DE

Business Unit: Generics

Address: Forte Pharma, Inc.

227-15 N. Conduit Avenue

Laurelton, NY 11413

USA

Phone: +1 718 2768600

Fax: +1 718 7238041

Site Address: Forte Pharma, Inc.

UPS Logistics Warehouse

Newark, DE

Parsippany, NJ

Business Unit: Consumer Health

Address: Novartis Consumer Health, Inc.

200 Kimball Drive

Parsippany, NJ 07054-0622

USA

Phone: +1 973 5038000

Fax: +1 973 5038400

Parsippany, NJ

Business Unit: Consumer Health

Address: Gerber Products Company

200 Kimball Drive

Parsippany, NJ 07054-0622

USA

Phone: +1 973 5038000

Fax: +1 973 5038430

URL: Open Original Shared Link

Philadelphia, PA

Business Unit: Chiron

Address: Novartis Vaccines and Diagnostics,

Inc., Philadelphia Site

1717 Arch Street

28th Floor

Philadelphia, PA 19103

USA

Phone: +1 215 2554200

Fax: +1 215 255-4222

Princeton, NJ

Business Unit: Generics

Address: Sandoz Inc.

506 Carnegie Center, Suite 400

Princeton, NJ 08540

USA

Phone: +1 609 6278500

Fax: +1 609 6278659

URL: Open Original Shared Link

Reno, NV

Business Unit: Chiron

Address: Chiron Overseas Holding Co.

Corporation Trust Co. of Nevada

6100 Neil Road

Suite 500

Reno, NV 89511

USA

Phone: +1 NA

Fax: +1 NA

Seattle, WA

Business Unit: Chiron

Address: Novartis Vaccines and Diagnostics,

Inc., Seattle Site

201 Elliott Ave. West

Suite 150

Seattle, WA 98119

USA

Phone: +1 206 4678100

Fax: +1 206 2703313

St. Louis Park, MN

Business Unit: Consumer Health

Address: Novartis Nutrition Corporation,

St.Louis Park Site

5320 West 23rd Street

St. Louis Park, MN 55416

USA

Phone: +1 952 8486000

Fax: +1 952 8486050

St. Louis Park, MN

Business Unit: Consumer Health

Address: Novartis Nutrition Corporation

1600 Utica Avenue South

#600

St. Louis Park, MN 55416

USA

Phone: +1 952 8486000

Fax: +1 952 8486050

URL: Open Original Shared Link

Vacaville, CA

Business Unit: Chiron

Address: Novartis Vaccines and Diagnostics,

Inc., Vacaville Site

2010 Cessna Drive

Vacaville, CA 95688

USA

Phone: +1 707 4532200

Fax: +1 707 4532222

Washington, DC

Business Unit: Chiron

Address: Novartis Vaccines and Diagnostics,

Inc., Washington, DC Site

1300 I Street NW

Suite 1090

Washington, DC 20005

USA

Phone: +1 202 3936540

Fax: +1 202 6398910

White Plains, NY

Business Unit: Consumer Health

Address: Gerber Life Insurance Company

1311 Mamaroneck Avenue

White Plains, NY 10605

USA

Phone: +1 914 2724000

Fax: +1 914 2724099

URL: Open Original Shared Link

Wilmington, DE

Business Unit: Chiron

Address: Chiron Holding, LLC

2711 Centerville Road

Suite 400

Wilmington, DE 19808

USA

Phone: +1 NA

Fax: +1 NA

Wilmington, DE

Business Unit: Chiron

Address: Chiron Vaccines, LLC

2711 Centerville Road

Suite 400

Wilmington, DE 19808

USA

Phone: +1 NA

Fax: +1 NA

Wilson, NC

Business Unit: Generics

Address: Sandoz Inc., Wilson Site

4700 Sandoz Drive

Wilson, NC 27893

USA

Phone: +1 252 2342222

Fax: +1 252 2362600

Wilson, NC

Business Unit: Generics

Address: Lek Pharmaceuticals, Inc.

4700 Sandoz Drive

Wilson, NC 27893

USA

Phone: +1 252 2342222

Fax: +1 252 2342600

[Mtndog]

Here's what the Open Original Shared Link said Technical Features - RESOURCE

[elye]

Yeah, "MAY BE SUITABLE FOR A GLUTEN-FREE DIET"...not very reassuring. I did read that, and thought it was pretty ridiculous. I mean, is it gluten-free or not? Thank you for all those numbers, Jessica. I will call them up. Actually, I will search for a Canadian number. I forget which country has questionable maltodextrin...is it the States or the UK where there's no guarantee of it being gluten-free?

[angel-jd1]

Yeah, "MAY BE SUITABLE FOR A GLUTEN-FREE DIET"...not very reassuring. I did read that, and thought it was pretty ridiculous. I mean, is it gluten-free or not? Thank you for all those numbers, Jessica. I will call them up. Actually, I will search for a Canadian number. I forget which country has questionable maltodextrin...is it the States or the UK where there's no guarantee of it being gluten-free?

Sorry didn't even look to see where you were from. Here are some Canadian numbers.

-Jessica

Boucherville, Quebec

Business Unit: Generics

Address: Sandoz Canada Inc.

145, rue Jules-Leger

Boucherville, Quebec J4B 7K8

CANADA

Phone: +1 4506414903

Fax: +1 5145961460

Charlottetown, P.E.I.

Business Unit: Animal Health

Address: Novartis Animal Health Canada Inc.,

Charlottetown Site

37 McCarville Street

West Royalty Industrial Park

CDN- Charlottetown, P.E.I. C1E 2A7

CANADA

Phone: +1 902 5664966

Fax: +1 902 5663573

Dorval, Quebec

Business Unit: Pharmaceuticals

Address: Novartis Pharmaceuticals Canada Inc.

385, boulev. Bouchard

CDN- Dorval, Quebec H9S 1A9

CANADA

Phone: +1 514 6316775

Fax: +1 514 6311867

Site Address: Novartis Pharmaceuticals Canada Inc.

385, boulev. Bouchard

CDN- Dorval, Quebec H9S 1A9

URL: Open Original Shared Link

Mississauga, Ontario

Business Unit: Animal Health

Address: Novartis Animal Health Canada Inc.

2000 Argentia Road

Suite 400, Plaza 3

CDN- Mississauga, Ontario L5N 1V9

CANADA

Phone: +1 905 8140840

Fax: +1 905 5670221

URL: Open Original Shared Link

Mississauga, Ontario

Business Unit: Consumer Health

Address: Novartis Consumer Health Canada Inc.

2233 Argentia Road

Floor 2, Suite 205, West Tower

CDN- Mississauga, Ontario L5N 2X7

CANADA

Phone: +1 905 8124100

Fax: +1 905 8214936

URL: Open Original Shared Link

Mississauga, Ontario

Business Unit: CIBA Vision

Address: CIBA Vision Canada Inc.

2150 Torquay Mews

CDN- Mississauga, Ontario L5N 2M6

CANADA

Phone: +1 905 8214774

Fax: +1 905 8218106

URL: Open Original Shared Link

Mississauga, Ontario

Business Unit: Generics

Address: Alphora Research Inc.

6-2400 Dundas Street West

Suite 661

CDN- Mississauga, Ontario L5K 2R8

CANADA

Phone: +1 905 4030477

Fax: +1 905 4038744

[nikki-uk]

I forget which country has questionable maltodextrin...is it the States or the UK where there's no guarantee of it being gluten-free?

Maltodextrin is ok in the UK.

Good luck finding out if it's gluten-free

[elye]

I tried one of the Canadian numbers, but their offices are closed over the holidays and will reopen on Thursday. So I wait...

If only John were able to eat just chicken and rice for a week! Too late for that now, I'm afraid...

[Lisa]

Emily:

I am not of any help to you on your questions, but I just wanted to add that I am sorry that this trama has effected your family and my thought go out to you and your sister and husband.

Lisa

[Viola 1]

Maltodextrin is also safe in Canada.