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!!
Posted by jlcd1 (Member # 18138) on :
They want her to take steroids and immunosuppressive??
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by Keebler (Member # 12673) on :
- Low Dose Naltrexone - immune MODULATION
She might do well to find a doctor trained in 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.]
- by Tim Shannon, ND -May 26th, 2012 -
Posted by Keebler (Member # 12673) on :
- How could I have overlooked this possibility:
PARASITES? -
Posted by Keebler (Member # 12673) on :
- 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 ]
Posted by jlcd1 (Member # 18138) on :
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.