LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Refractory Celiac Disease...any help appreciated

 - UBBFriend: Email this page to someone!    
Author Topic: Refractory Celiac Disease...any help appreciated
jlcd1
LymeNet Contributor
Member # 18138

Icon 1 posted      Profile for jlcd1     Send New Private Message       Edit/Delete Post   Reply With Quote 
So this is for my cousin who has celiac but was on the diet but still losing weight..like 20lbs pretty quickly. Any advice would be awesome. Thanks!!
Posts: 908 | From Albany | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
jlcd1
LymeNet Contributor
Member # 18138

Icon 1 posted      Profile for jlcd1     Send New Private Message       Edit/Delete Post   Reply With Quote 
They want her to take steroids and immunosuppressive??
Posts: 908 | From Albany | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Don't they ALWAYS want everyone to take steroids and immunosuppressives for just about anything that is the tiniest bit complex? Sure seems like it. Of course, many of us here know how that can go so terribly wrong because we've been there.

First move: find a better doctor, seems obvious but not always so practical and also very precarious for most used to the way the medical "system" is set up.

Various infections can trigger celiac. I'd look at it from that angle.

With any infection, of course, neither immunosuppressive Rx nor steroids are without major risks.

As you don't say that she has lyme, I assume that is not suspected. [But, really, it is ALWAYS suspect.]

And you don't say what state she is in.

Yet, if there is a LL ND near her, that would be my best bet as a LL ND would know enough about possible chronic stealth infection-connection with celiac.

A regular ND (naturopathic doctor) might also be able to help. It's just that a LL ND would be far ahead with the infection possibilities.

She may well be as "on the diet" as possible, however, gluten may be hidden in her diet, somewhere, even in lip balm. Is she fully aware of all this?

Google: HIDDEN SOURCES OF GLUTEN

several good results will pop up. See them all as some lists have a few things on it others do not.

Of course, the celiac advocacy groups may have some help. The celiac support groups in her area MAY have some who have gone outside of the typical medical mindset and would know of any doctors who can go above and beyond.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Is she getting enough calories into her in the first place? Start there.

Money could be a problem.

And mindset. Find out a bit about what she thinks is a balanced diet - and her goal calories.

It seems that far too many people think they just don't need to eat nearly the amount of good food their body needs

(including carbohydrates -- a popular mind-set but misinterpretation of what it's really about, "low" carbs, are not the way to go but "smart" whole, wholesome carbs are our friends. If she thinks she has to be "low" carb that could be a big part of the problem).

Of course, if she is and it's not being absorbed, that is a different matter. But do back up and ask the question.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Low Dose Naltrexone - immune MODULATION

She might do well to find a doctor trained in LDN.


http://www.lowdosenaltrexone.org/gazorpa/LDNFAQ.html

FAQ - LDN

[this site is geared for MS and LDN but it's a place to start and my file notes are just a jumble on this topic -- there is good book out about it and a good major website.]


http://www.solasclinic.com/wordpress/the-beauty-of-low-dose-naltrexone-ldn/

THE ELEGANCE OF LDN

- by Tim Shannon, ND -May 26th, 2012
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
How could I have overlooked this possibility:

PARASITES?
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Read an article a while back, well, two. One said that QUINOA might cross react for those with celiac. I did not study it enough and read from a nice variety of experts on the topic to come to my own conclusions but I stopped quinoa until I can do the homework. She might want to as well.

Another article said, maybe coffee (that connection was less clear to me but I don't drink coffee so not going to spend time studying up on that).

If she eats quinoa, you might suggest instead to stick to brown, red, black and wild rice. Millet. Amaranth. Buckwheat Groats.

But also avoid anything from BULK BINS as in the back room, wheat flour is often flying around.

Same at a deli. Just because the food, itself, is gluten-free does not mean the environment is and that matters tremendously. Flour flies. It's just what it does. Kitchen / Deli staff also can mix and match utensils, etc. in food prep.

Restaurants are not just safe, IMO, for anyone with celiac -- not without very special study.

Also: Mexican or Spanish Rice in a restaurant often has gluten as a flavor / substance enhancer. Who would think? I sure did not when starting down this path. But I got clobbered with that, big time.

Still, even the non-gluten "grain like" foods should be balance with good proteins to help build muscles and lots of veggies / fruits (is she can) of bright colors to help heal the stomach tissue . . . and good fats as well.

She may not be along that wave length, or may well be. Find out where she is with all that, though in as gentle, non-lecture way as possible.

I hope others may have some ideas, too.

Please encourage her to find some other way. There is always some other way - or more to investigate - so very often, anyway.

While a lot here, likely she knows all this already but there may be one piece of the puzzle that I hope will help her.
-

[ 04-17-2015, 12:04 AM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
jlcd1
LymeNet Contributor
Member # 18138

Icon 1 posted      Profile for jlcd1     Send New Private Message       Edit/Delete Post   Reply With Quote 
Fantastic info as always keebler. Lyme and company is not expected at this time, but we all knkw how that goes. She is in North Carolina, and i will pass this along.
Posts: 908 | From Albany | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.