<<Disclaimer: Verify this information before applying it to your situation.>>
Wow! There were many responses and I appreciate all of the suggestions.
Here's a list of the books that were recommended with a total of how
many people recommended it after the title and author. At the very end
of this e-mail, I have a copy of my original post for anyone that needs
reminded. There is a secons summary with other reponses that contained
more advice. Any comments from me will be after the response in ( ).
I've decided to make a list of all of gf "junk food" that can be bought
at a regular food store for my aunt and uncle. Maybe they are
overwhelmed with the thought that they have to eat "healthy" and
everything from scratch. I am undecided on which book to get, many of
these I have not seen. I have gotten to the point where I adapt any old
recipe I find. It has become second nature. I also get a lot of good
recipes from this list :) I'm also going to try to gently tell them that
this could be seen as medical neglect and social services could get
involved (the last thing anyone wants to happen).
A big collective Thank You All. There were so many responses that I
cannot reply to everyone individually.
~Crystal in Maine
*Against the Grain by Jax Lowell's book 7
*Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy
Gluten-Free Kids, by Danna Korn (Besthesda, MD: Woodbine, 2001). You
can order it now, from Amazon.com, and it'll be sent when it becomes
available. 3
*Wheat-Free Gluten-Free Dessert Cookbook which has 400 gluten-free
dessert recipes. Take a look at http://www.glutenfree.homestead.com/
homepage.html 1
*Food Allergy field Guide...a Lifestyle Manual for Families" by Theresa
Willingham is excellent and strongly addresses children's issues. ISBN
#1-889374-07-5 by Savory Palate www.savorypalate.com 3
*Gluten free Gourmet by Bette Hagman 5
*More from the Gluten Free Gourmet by Bette Hagman 3
*The Gluten Free Gourmet Cooks Fast and Healthy by Bette Hagman 3
*Bette Hagman's Gluten Free Gourmet Bakes Bread Fast 4
*Gluten Free Kitchen by Roben Ryberg 2
*Feeding Your Allergic Child 1
*Gluten-Free Baker Newsletter has many kid-friendly recipes as well.
For more info, go to: http://www.celiac.com/cook.html#leonard 1
*Special Diet Celebrations by Carol Fenster 1
*Wheat Free Recipes and Menus by Carol Fenster 1
*Celiac Disease Needs a Diet For Life -3 Edition 1
*GOOD FOOD,GLUTTEN FREE by Hilda Cherry Hills Keats Publishing, Inc.,
New Canaan, Connecticut 1
*Biological Treatment for Austism and PDD by Dr Shaw 1
*************************************************************************
My original post
> I'm writing to get suggestions for good basic gluten-free books (both
> for recipes and info) for my Uncle and Aunt who in July had 2 of
> their young children diagnosed as celiac, but have not started the
> diet. I'm sure it is because it is so overwhelming. One of the
> children is autistic and the doctor said their was a very good chance
> he would be normal after being gluten free. All of my advice and
> experience doesn't help (my 6 yo has been gluten free since 16 mo)
> because we gladly eat veggies and Brennin has never been addicted to
> wheat. When all the family will eat is fast food and peanut butter
> sandwiches on Wonder bread, how do you tell them to start cooking
> all their food from scratch and eat Basmati Rice Salad or Potato Kale
> soup (ewww, there's green things in there?) I'm sure there are bound
> to be families out there that are/were in this same boat. What books
> did you find very helpful? I will summarize.
Okay, these are your comments.
*************************************************************************
This is not easy task. I try to tell my relatives for 4 years, without
any success. One of them told me, that he rather die, than give up bread
and bear. Conclusion? You are wasting your energy.
(My hopes are that since it is their young children, if I provide them
with a bit of info and some easy to handle recipes that they might try.
I won't make this my life crusade since I have many other things to do.
I would like to warn them also that this could possibly constitute
medical neglect just as if the dr had prescribed medicine and they
didn't give it to the kids. I just don't understand how they can do
nothing -- how could they face that autistic child as a grown man when
he learns he could have been normal if they would just feed him right?
Oh, well, I guess it's not for me to judge them.)
************************************************************************
Make sure they know about www.GFCFKids.com (for parents of autistic kids
who are GF and CF (milk free).
My daughter has ADHD (attention deficit) and has been helped by a GF
diet, but I would be extremely surprised to hear if her kids stopped
being autistic after going GF.
My daughter's developmental pediatrician has a web-site:
www.megson.com
with lots of useful links for autism.
There is life after going GF for junk food junkies - just stock up on
Cheetos, Orville Reddenbacher popcorn, gf candy, hamburgers, Ore-Ida
shoestring potatoes, Peter Pan Peanut butter.
*************************************************************************
You should know that he will also have to go entirely dairy free, with
the GF diet. This is the basic diet for autism. This is called a GFCF
(casein free) diet. You will find a good explanation of this at the
following website: http://www.gfcfdiet.com/Directory.htm
*************************************************************************
Hi, mom of seven little Celiacs here. I loved Roben Ryberg's Gluten Free
Kitchen. It made me start thinking how I could make the new change as
simple as possible. Her recipes use mostly Corn Starch and Potato
Starch, and most of them are very good and kid approved. *KEEP IT
SIMPLE* Thats my motto. I would go insane if I didn't follow it.) BTW
I my oldest son has Asperger's Disorder. Its a high functioning form of
Autism. Although we have only been on the GF diet for only a few weeks
now, I can already tell a big difference in his school work and eating
habits.
*************************************************************************
Crystal, "Feeding Your Allergic Child" is a small cookbook written by a
woman whose children have multiple allergies. I don't remember her name
but found the book in the library. The recipes didn't take alot of
ingredients and were simple to make. LOL
*************************************************************************
Perhaps talking to an easy listener, understanding professional would be
more helpful than a book for this family. To the best of my knowledge,
there are not a lot of books written on Celiac Disease. I would
recommend you have the mother contact Cynthia Kupper of the Gluten
Intolerance Group in Seattle, WA.
Cynthia is very down to earth and will not put the mother down in any
way for any question she might ask. She has also had communication with
a local autistic group, in regards to the gluten free diet and how it
seems to really help these children.
Contact Gluten Intolerance Group (GIG) in Seattle, WA for information.
Gluten Intolerance Group
15110 10th Ave SW, Suite A
Seattle, WA 98166-1820
Telephone: 206-246-6652
Fax: 206-246-6531
Website: www.gluten.net
Email: [log in to unmask] or [log in to unmask]
Executive Director: Cynthia Kupper, C.R.D.(Certified Registered
Dietitian) (and she has Celiac Disease) is very willing to work with
anyone that calls.
Cynthia also has credentials as a former C.D.E. (Certified Diabetes
Educator).
(Yes, I have given my aunt the name and meeting time of a wonderful
support group in Richmond, VA called Parents of Allergic Children. They
are the women who first helped me when we were first gf. Anyone in
Richmond who wants there info, can e-mail me and I will look it up for
you.)
*************************************************************************
They do have their hands full, but, remember, it is like all else,
suffering is optional and you cannot force them to change - so don't
sweat it too much - do what you can and then....
*************************************************************************
You certainly do not have to be a vegetarian and can even eat lots of
junk food and follow the CD diet. I am not sure that anything you say or
do will be of any help. If I had an autistic child I would switch to
cat food if I thought it would help, they do not care enough to do
anything to help. When my son got married his wife asked what kind of
desserts he liked. He did not want any because with a younger diabetic
brother we never had desserts. None of which really addresses your
problem. I just do not think you or anyone else can help them. how very
sad.
(Yes, but I would hate for it to be a lack of info. If they have even a
little bit of info and still do nothing....)
************************************************************************
Food Allergy Field Guide: A Lifestyle Guide for Families (Savory Palate,
2000) at www.savorypalate.com It's a very comprehensive guide for
families of food sensitive children that took me two years to write and
was inspired by my own "lessons learned" with my own gluten sensitive
son, who is now 8. It covers everything from the toddler years to
early teens, from school, field trips, parties and outings, to cooking
and shopping.
If I can tell you anything specific about the book or anything in
particular that you think might help your relatives see the gluten-free
light, please ask. I'm glad to help in any way I can. I deal with the
same issues in the book that you mention in your note. It's very
difficult when the family can't or won't change their paradigms about
food. It has to be a whole lifestyle change and one that's embraced
willingly. I use case studies of about a dozen families in the book
and discuss dietary intervention in autism and ADD at some length in
the book. If they really need convincing on the autism issue, steer
them towards Dr. Lisa Lewis, of ANDI (Autism Network for Dietary
Intervention) at http://www.autismndi.com/, and Lewis' compelling story
about her own autistic child at http://members.aol.com/lisas156/gfpak.
htm. She's also written an excellent book called "Special Diets for
Special Kids" (Future Horizons, 1998). Karyn Seroussi also wrote a
book about her experiences called "Unraveling the Mystery of Autism and
Pervasive Developmental Disorder: A Mother's Story of Research and
Recovery," (Simon and Schuster, February 2000). Her book discusses her
son's complete return to normalcy after being diagnosed with autism
and going on a gluten-free, casein free diet.
Those are about the most focused of the discussions on autism and diet,
but deciding to change a diet takes time and it's a personal issue for
everyone.
They don't necessarily have to cook "from scratch," and perhaps
understanding that would help. There are plenty of foods readily
available that don't necessitate a lot of preparation or cooking,
especially if you stick to fruits and veggies, plain corn and potato
chips for snack foods and things like that. They don't have to eat
Basmati Rice salad. They can enjoy plain old rice and beans, or
southwestern style rice made with Uncle Ben's rice (I wouldn't -- but
hey, it's familiar and non-threatening!) frozen corn and a little salsa,
or gf meatloaf with mashed potatoes. They don't need to eat Potato Kale
soup! They can have tomato soup and cheese sandwiches made on gf bread.
Treat them to a cheap bread machine and show them how to make a great
loaf of gf bread that takes five minutes to prepare and a couple of
hours to knead and cook automatically.
It doesn't have to be gourmet or exotic to be GF, and that's an
especially threatening thought for new celiacs. It can be plain and
ordinary and pleasant and easy to fix. I've got a hundred recipes in my
book that are a piece of cake -- including cake! Try showing them all
the great "normal" foods they can have. Also, another thing that's
helpful is telling folks to "try it for six weeks." Usually, if people
know they only have to do something for a short time, they're more
willing to give it a shot. And after six weeks, it's not so hard to keep going.
Those are just a few suggestions. I really hope they can work it out,
for the sake of their children, and for the whole family. GF is just
plain better than G! Good luck! They're lucky to have you caring for
them!
************************************************************************
I think that Jax Lowell's Against the Grain was incredibly helpful when
our older daughter was diagnosed. It doesn't have a ton of recipes,
but the info is great. And as for GF cookbooks, I would advise anyone
new to gf-living to use a good gf mix (such as Bette Hagman's) in
their regular recipes (with a little xanthan gum), and just skip bread
for a while.
Hope this helps, and God bless you for helping this family!
************************************************************************
The best bread mixes I have found are from Authentic Foods.
Especially their Cinnamon Bread mix to which I add raisins for morning
toast.
************************************************************************
My daughter was diagnosed at 2 years old (7 years ago) at Boston
Children's Hospital. They have a Children's Support Group that produces
a terrific newsletter with many "kid" tested recipes. Annual
registration is required and they ask for a donation, if possible.
To subscribe to the newsletter, contact:
Boston - Children's Celiac Support Group, 300 Longwood Avenue, Boston,
MA 02115 Attn: Stacy Diamond
E-mail Stacy Diamond: [log in to unmask]
Tracey Keegan: [log in to unmask]
The best thing was to participate in the local support group. Everyone
brings different homemade or purchased gf products to try. We now ask
for donations from many of the gf manufacturers to have on hand at our
meetings as well. This helps those new to the diet become acquainted
with the products available, collect recipes, and to sample before they
buy. If you, or your Aunt and Uncle (and kids) live in the Portland
area, please feel welcome to come to any of the Portland Celiac Sprue
Support Group meetings. There are other celiac support groups in the
Waterville and Bangor areas, and there is also an autistic group in the
Brunswick area that is familiar with the gf diet.
************************************************************************
Join a support group if there is one nearby.
Join The Celiac Sprue Association . They have lots of materials. Join
the list serve!
************************************************************************
Make sure that you tell them to take the autistic child off of all
dairy, including Caseine and Whey. They may already know this, but there
have been cases documented where the autistic child became totally
normal after this diet. There is even a web site on this subject!
http://www.gfcfdiet.com. As far as the family goes, it is very
overwhelming at first and I would suggest that they buy the premade gf
items from the gf mail order companies. Then after a couple of months,
after some of the stress has worn off, they can begin to bake. Good
luck!
************************************************************************
I know what they must be going through because we all have been there.
I must say that if I had an autistic child I would not hesitate about
switching to the cd diet.
I found that it was easier to try to convert my own tried and true
recipes to gf ones. Now if you sit down each week and try to convert
just one of your families favorites it is much easier than trying to
scrap everything.
I remember starting with the pasta since that is what we all had once or
twice a week. We started trying all the different types of rice and
corn pastas. I bet we went through 8 or 10 before landing on the
Tinkyada brand of rice pasta. Then I started to get the bread going.
I spent a lot of time on that one. It came down to the Gluten Free
Pantry's Favorite Sandwich Bread mix. I buy it by the case from my
local health food store and save about $1.00/bag. I can make it and
freeze it and it is good for sandwiches, french toast, or recipes that
call for bread or bread crumbs.
So I went along and started to convert my existing daily recipes with
much success. We have 10 celiacs in our family now and we all exchange
recipes and ideas. In fact, when we have a family get together, I
usually bring the food for celiacs and I always have to chase the non-
celiacs away from my main dish and dessert.
Just my 16 yr old son is the celiac but my husband and I decided that it
was too stressful for him if we ate regular food and made him gf food
every night. So we all ate gf food. He is 21 now and doesn't care if
we eat non gf food but to tell you the truth it is too hectic to try
to make two different meals when he is home from college visiting. It
is also hard to make sure that you don't contaminate his food because
you are trying to prepare two things at once. I no longer have any
wheat or gluten items in my home. My husband and I really do like
most of the gf food that I make for him plus it is a lot cheaper.
My son and I have just finished a new cookbook for the newly diagnosed
celiac. If you go to the website www.dreamwater.net/biz/cookceliac/ you
can get information on ordering it. It is easy to read, easy to shop
for and it is about 25 basic recipes to help get you started when the
doctor or GI tells you that you have celiac sprue disease and sends you
home with nothing more than a bill. It is also easy to buy the
ingredients for the recipes because I tried to name the brand names and
most use items that can be purchased from your local grocery store.
The least that they could do is give you a website or a support group
to call. We felt like no one cared when in fact we found out that many
people do care and are very willing to help. It was the biggest eye
opener of my whole life. 99% of doctors today don't know how to
diagnose celiacs and if they do they don't know the first thing about
helping them maintain their health.
If I can be of any help please let me know. I hope you and your family
have a wonderful Thanksgiving!
God Bless you and yours, Donna, Flemington, NJ, USA
************************************************************************
I don't know how exactly HELPFUL my favourite book is, in terms of
practical suggestions for feeding children, but I don't think you can
beat "Against the Grain" by Jax Peters Lowell for a good healthy
attitude adjustment. I find her so refreshingly positive about her diet
- it really helped me to find my own positive attitude in feeding my
celiac husband. I'm sure it's already on your shelf...isn't it required
by the "Law of Celiac Disease" to have one??
************************************************************************
My situation is not exactly the same. I have a 5 year old celiac
daughter and we have been GF for 2 years. One cookbook that I really
enjoy is Carol fenster's Special Diet Celebrations. The receipes are
good. But they have menus in the fron, So, it is great for party
planning. Or even just a specail meal etc.
Here are some of my "staples" that make life more "normal" for my
daughter.
Dietary Specialties have GF shells and ravioli. They are great. Also,
find a good GF pasta. We use tynkada. But elows with cheese for M&C and
spaghetti are always a treat. Pamela's products. I prefer the mixes
and make my own quick breads and cookies etc. But you can buy the
cookies already made.
Good Luck to your family. Seeing the change in my daughter after going
GF makes all the effort worth it. But, it is hard at fisrt because
you have the effort and it takes time for the results.
*************************************************************************
Check out the book on this site...
www.scdiet.com
for more info, see.....
www.scdiet.org
Also note that there is a chapter in the book
about the mental connection since there is
a child with autism in your situation
*************************************************************************
for the diet-autism connection go to the bookstore on www.feingold.org
the books by Dr. Shaw (Biological Treatment for Austism and PDD) and
Karen Serroussi (sp?) might be inspiring. I think it is some sort of
abuse or neglect if you don't make an effort to treat your children with
diagnosed Celiac - this family must need counseling of some
sort.Hopefully other folks will inundate you with the fast food and
easy food options - I'm of the basmati rice ilk and can't help much on
that one. I do know that food addicts can get much worse as they go
through their withdrawal, and also that autistic children react badly to
the standard antidepressant crap, so that is not even a decent band-
aid approach thing to try.
****************************************************************
Crystal, maybe it would help for them to start with this simple letter:
-vance
With encouragement and help from several others on this list,
I now send this letter to new members the first time I see
them post to the list asking for help. I hope this is a help
rather than an imposition. I have no medical qualifications
other than listening to people on this list and five years
experience with the problem. But several people, who know more
than I, have checked this out and corrected any errors they
could find. I hope the suggestions in this letter are pertinent
to your interests. Several people have printed this letter off
and given copies to their skeptical relatives and friends, who
believe they are exaggerating the condition or that it's all
in their head.
The question of testing for celiac disease and what doctor to use is of
primary importance. There is a common opinion that only about 5 to 10
percent of the professionals in any discipline (doctors, lawyers,
professors, mechanics or electricians) are competent. Most
gastroenterologists may recognize fewer than three true celiacs in a
lifetime's practice. Many celiacs in this discussion group have had
experience with going to several doctors, none of whom can seem to find
what is wrong with them. They have been diagnosed as having one or more
of a myriad of complaints -- or dismissed with: "Oh, it's just
irritable bowel syndrome," or "It's all in your head." It is not!
Celiac symptoms often resemble those of an astounding number of other
problems and diseases, mostly digestive diseases. Celiac can also cause
a litany of other diseases. That's why it's often called "The Great
Masquerader." After starting visits to doctors in the search for answers
to what's causing the symptoms, the average time it takes to recognize
and diagnose celiac is eleven years. Only after finding a rare good
doctor who knows something about this disease do patients find for
certain whether or not they are celiac. A doctor must THINK the
possibility of celiac disease before she can diagnose it. Good advice
is simply to contact your nearest celiac support group (look in white
and yellow pages under "celiac" or "gluten") and ask
them to recommend a GI doc that their members have found to be reliable.
If no groups are listed, check Scott Adam's excellent site
<http://www.celiac.com/> or call CSA/USA (Celiac Sprue Association),
(but remember, they will not tell you about groups that are not
affiliated with their organization). Or you can ask on the list here if
anyone in your locale had had experience with a good celiac doc. That
simple step can save you a lot of time, money and problems.
Most celiacs once agreed that the only trusted way to diagnose this
disease is to have a biopsy of the small intestine and the blood
screening antibody panel (3 tests) WHILE STILL LIBERALLY INGESTING
GLUTEN containing foods -- then have the blood sent to a reputable
national laboratory experienced in celiac testing. If you have been
eating "gluten free" (GF) for a while, the biopsy and the blood
tests are worthless. They will almost certainly give false negatives
-- even if you are liberally ingesting gluten, if the biopsies are
not taken properly or read properly, they can still produce an 815%
false negative. The blood tests also give false negatives from 10 to 50
percent of the time (according to which study you believe). If you are
liberally ingesting gluten prior to the testing and you register
negative, you may want to have another lab perform the tests after
finding out, from the celiac organization of your choice, which labs are
competent to perform this test. The estimation is that there are only a
few labs in the US competent to assess the tests for celiac accurately.
If you'd like a list of these labs, feel free to write me and I'll send it.
If you have been GF for a while, opinions vary on the
amount of time you must eat gluten again prior to testing; the
length of time recommended varies from three weeks to three
months. Some insist you should be as sick as you were to begin
with. So if you are now eating gluten it is prudent to continue
till you have the biopsy -- especially since reactions are
likely to be far more severe after being GF for even a short
while. Many celiacs who react too violently to the gluten to
ever go back on it for the required time may come to realize
they have wheat/gluten problems after an elimination diet.
A wheat "allergy" is different from gluten "intolerance," although many
of our resources are important for those with wheat allergy. But the
biopsy itself, everyone seems to agree, is much easier and milder an
experience than it sounds when it is first suggested. They will sedate
you so you remain relaxed, and then worm a small tube down your throat
to take the biopsy. Most say they felt only slightly uncomfortable.
But like any surgical procedure, the biopsy can do some harm, even
causing hiatal hernia.
For an excellent in-depth explanation of the tests and what they mean,
try this website: http://www.enabling.org/ia/celiac/diagtst.html#US Just
some of the many and varied symptoms and reactions that celiacs, and
others who are intolerant to gluten, may manifest are: GI distress
including vomiting and chronic diarrhea from mild to incredibly harsh;
frequent but incomplete defecation; aphthous ulcers of the mouth; mood
swings; constipation; gas; foul smelling flatulence; abdominal bloating;
mental fogginess; migraine headaches; Dermatitis Herpetiformis rash (DH)
often on elbows, buttocks, knees and feet); muscle wasting (especially
in the buttocks); increased or decreased appetite; bad temper; weakness;
fatigue or lack of energy; migraine like headaches; eye-aches; asthma;
epilepsy; alopecia (loss of all hair); considerably underweight or
overweight; lactose intolerance; malformed teeth; and malabsorption,
which causes almost anything from psychological problems or psychosis
(including schizophrenia, autism, and tourette syndrome) and/or anemia
to osteoporosis, smooth tongue with cracks in the corner of the mouth,
leg cramps from calcium deficiency, and edema from low blood protein.
And the Canadian Celiac Association and some others say that eyelashes
that are noticeably longer than normal are also a symptom. If you have
DH you are celiac. UNTREATED celiac patients have an increased incidence
of osteoporosis and intestinal lymphoma. But on the diet, the incidence
only fractionally higher than normal, and it's a fairly rare problem in
the general population.
Another symptom some celiacs may manifest is floating
stools. Stools may float for either of two reasons:
1. steatorrhea, is when the celiac does not absorb fat and it passed on
in the stool, which is a pale color, floats and leaves an oily film on
the water surface; 2. when there is a lot of gas and that gas is
absorbed into the stool it floats because it has air in it and does not
leave an oily film. This may be a dark color. Another symptom is thin or
skinny stools from the diameter of your thumb to the diameter of a wood
pencil. You will find the celiac world is complex, and there is
considerable controversy among celiacs, celiac organizations, and
different nations as to what may harm us or cause and what will not. The
UK, for instance, says food that has "wheat starch," which is
supposed to have the gluten removed from it, is gluten free (GF).
Perhaps this letter will help to simplify a complex issue.
GRAINS THAT CONTAIN GLUTEN in order of the amount of
gluten in them: Wheat, spelt (or spelta), kamut (or kawmut),
durham, and triticale (all are wheats), rye, barley and oats.
All grains containing gluten must be avoided for life. Some
studies with specially grown pure oats find they may not contain
gluten, but ALL commercial oats are contaminated with wheat, so
oats may be an option if you grow your own.
GRAINS THAT MAY ELICIT A REACTION due to cross contamination or
individual sensitivities: Millet, sorghum, teff, ragi, quinoa, amaranth,
and buckwheat (which is really not a grain). Some have even claimed an
intolerance to Canola oil, but it is not clear why this should be so.
You may wish to observe consumption of this to see if it affects you.
Different celiac organizations and individuals have differing opinions
concerning these substances.
Some celiacs are intolerant to other grains or carbohydrates also.
It may be better initially to limit your diet to rice and later
experiment with other grains. But remember: though some will react
within a few minutes, some rare celiacs may not react for as much
as three days after ingesting an offending substance. It's a good
idea to keep close track of what you have eaten before each reaction
by keeping a food diary, listing everything you eat till you get
a solid idea of what may be toxic to you. This is doubly important
to do for celiac children.
Furthermore, some celiacs may not react at all after ingesting gluten,
and many go though a long period of adolescence, sometimes through the
twenties, when they do not react; it's doubly important for them to
check out everything before they ingest it. Any ingested gluten still
does terrible damage to a celiac's intestines whether or not they react to it.
To have celiac, it is believed, you must first have a
genetic predisposition to it, and the prevalence of celiac
disease is approximately 10 percent in first degree relatives
of celiacs. But the disease may not be active when you are
young. Sometimes it takes a psychological or physical trauma
(such as a major operation, esp. GI) to activate the problem.
There is some evidence that a specific virus can do so too.
So many celiacs may not have problems till they are older;
forty percent are diagnosed after reaching sixty.
There is also some controversy over which vinegars are
GF and which are not, but if you follow this simple guideline
you will be safe till you form your own opinion: "Pure" apple
cider and wine vinegars are safe. Many hold that you should
avoid distilled, clear, and white vinegars, as well as "cider
flavored" vinegar unless you are assured the product is made
from corn and does not use a grain sludge or mash or as
starting material.
Also many celiacs are lactose intolerant because the villi in the small
intestine (which are damaged and flattened by gluten) are the site of
lactase production -- specifically the tips of the villi which may be
damaged first. Without this lactase we are unable to digest lactose. In
this case most celiacs may be lactose intolerant, but sometimes this
intolerance may go away after the small intestine has time to repair and
is in good shape again. In bad cases this may take as long as two years.
The problem here is that the villi may lose their ability to produce
lactase after not doing so for two years. So it might cause a little
discomfort for a while to reintroduce milk.
Many who are just lactose intolerant may be able to drink Lactaid 100,
which is real milk with all the lactose removed. But some may also be
sensitive to the protein or casein in milk. In this case they may want
to drink soy or rice milk, if they are not sensitive to that too. Here
are the two brands I've checked on and find to be decent tasting, and
they are easy to remember because everything in their line of milk
substitutes is (GF): Pacific (all rice and all soy milk substitutes)
and Better Than Milk (all soy milk subs). For additional choices check
this website:
http://www.fastlane.net/homepages/thodge/MILKALT.txt
When celiacs first go on a gluten free diet they should also abstain
from ALL dairy until the diet is stablized and they know what bothers
them and what does not. Once stabilized they can suddenly re-introduce
milk for a day and see what happens. If they have a strong reaction to
the dairy, they should abstain for a year or more before trying again.
For all the information you'll ever need on lactose intolerance try Don
Wiss's site:
http://www.panix.com/~nomilk/
Celiacs must also be aware that some may have damaged their intestines
so much that molecules of some substances can "leak" through the walls.
This may cause sensitivities to other foods as well; hence, in order to
avoid this, it's imperative to maintain a diet that will allow the
intestine to heal as soon as possible. Because of this "leaky gut,"
celiacs may develop sensitivities, allergies or intolerances to almost
any food. For further information check:
http://www.healthy.net/library/articles/galland/Leakygut.htm
Many, perhaps even most, feel we have found more help on this list than
from any doctor, or especially from any dietitian. Doctors or
dietitians may insist this problem is all in your head: They're wrong.
There are a few dietitians who are interested in celiac and can be of
some help, but they are rare. Most do not know "diddley."
Here are some Internet sites we have found helpful. Keep in mind that
not all celiacs nor all celiac organizations, nor all countries agree on
everything:
http://www.ajcn.org/cgi/content/full/69/3/354#SEC8 Every celiac
should read this first. A very helpful article by Dr. Murry,
perhaps the most knowledgeable of celiac docs.
http://www.celiac.com/forbiden.html This is a useful list of foods
and additives that are safe, and those that are not safe for
celiacs. I printed off the unsafe portion and carried it in my
billfold for the first two years after I was diagnosed so I could
check any list of ingredients against it.
http://www.geocities.com/HotSprings/Spa/4003/gf-ongoing.html This
is a good place to start your shopping: it's a long list of food
products that are gluten free, from baby food to tomato pastes
and sauces.
http://www.aafp.org/afp/980301ap/pruessn.html an excellent article:
"Detecting Celiac Disease in Your Patients," by HAROLD T.
PRUESSNER, M.D., University of Texas Medical School at Houston.
http://www.glutenfree.org/ Don Wiss's site has a lot of information
and links to other helpful sites.
http://csaceliacs.org/ This is the Celiac Sprue Society's site.
You may want to order their 89 page CSA commercial products
listings booklet. It lists a lot of brand names of GF products,
and it is a great help at first. Some celiacs do not trust the
organization or the booklet implicitly so they phone and chec
out everything before they eat it, but it's a good place for
beginners to start, rather than starting blind with no idea as to
what may or may not be GF.
http://www.glutenfree.com/contacts2.html#G This offers numerous
sites where you can check on just about anything, including some
sites where you can order GF products.
http://www.geocities.com/HotSprings/Spa/4003/gfindex.html Another
good site that has extensive lists of GF foods, medicines,
beverages, etc.
http://www.stokesrx.com/ You can order Stokes book, A Guide Through
the Medicine Cabinet. It will tell you whether most medicines
have gluten or lactose in them. Or you can have them prepare GF
or lactose free medicines for you.
http://www.enabling.org/ia/celiac/sn/spnk9701.html#trier Doctor
Murray explains some of the symptoms of celiac disease.
For Canadians, either:
http://www.celiac.edmonton.ab.ca/ Canadian Celiac Association, or
http://www.celiac.ca
Recommended books:
Against the Grain by Jax Peters Lowell
Prescription for Nutritional Healing by Balch & Balch
any or all of Betty Hagmans Gluten Free Gourmet series
Brain Allergies by William Fillpot and Dwight Celiata
Allergies & Your Family by Doris Rapp;
The Impossible Child by Doris Rapp.
Here are some companies (US and Canadian) where you may order GF food by
mail:
Ener-G Foods: http://www.energ.com/nrg2.html
Gluten Free Pantry: http://www.glutenfree.com/toc.htm
Gluten Free Mall: http://www.glutenfreemall.com/
Kinnikinick: http://www.kinnikinnick.com
Miss Robens: http://www.geocities.com/HotSprings/Spa/4003/gfindex.html
http://geocities.com/HotSprings/Spa/4003/gf-meds-toiletries.html
website with GF medicines and toiletries.
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