going gluten-free, a book? Elimination diet?

[Hen]

I have been thinking about eliminating gluten from my diet, I constantly have stomach problems, anemia, tired. A hint from someone on a another thread gave me the push to do it. I am just wondering, shouldn't you start with an elimination diet first, to see if it is something else?

 

Can someone recommend a book that would outline how to do this?

 

I have googled celiac disease, gluten free and frankly my head is swimming with the volume of sites to wade through.

 

so, anyone with history doing this, how did you do this?

 

Dh and I discussed this, and we are not wanting to test through my Dr. because of fear of not being able to get health insurance in the future.

 

I just want to feel better. Thanks, all knowing hive-mind.:lurk5:

[athena1277]

Hi Jen! I'm sorry you are having such problems, but please consider getting tested for Celiac Disease before you start a gluten-free diet. My dd was diagnosed with CD 4 years ago. In all my research since then, I have never heard of anyone with CD being denied insurance coverage. You also don't want to have to go through a "gluten-challenge" later to find out for sure if you have CD.

 

As far as books go, I don't know much about an elimination diet. If you are starting a gluten-free diet I recommend anything by Danna Korn. I have her book on kids with CD and it is great. She is also the author of "Living Gluten Free for Dummies" which would probably be a great resource for you.

 

Hope you can figure out what is wrong and feel better soon!

[Storm Bay]

There is a special diet social group (you can find it via community). Although it's been quiet lately, there have been some book suggestions, etc, there.

 

Gluten free is not as hard as it seems at first, especially if you like to bake. We buy g/f flours in bulk and it saves us a great deal of money that way. I have to get off now, but feel free to PM me if you don't get any other books as I have a few downstairs I could look up. Or ask here--I've subscribed to this, but I've overdone my computer time today (I come to this board last.)

[ccm]

I'm not sure if this is what you're looking for, but Is This Your Child? Discovering and Treating Unrecognized Allergies in Children and Adults by Doris Rapp, M.D. has an elimination diet that we used with our son 15 years ago. Hopefully the book has been updated since it was written in 1991.

[Supertechmom]

My dd can't get a private policy thru Blue Cross Blue Shield. Due to the "pre celiac" dx on her chart. They won't accept it. That was Jan of this year. However if she is in a work group policy or under us on a group policy, she's good. I hope that changes when she gets older.

 

 

When we were working with the allergist, he said the best thing to do is go to a very strict veggie, fruit, plain meat diet. And not eat anything that you might suspect is an issue. Use only basic salt and pepper. That way you know you aren't getting any gluten, dairy, or eggs - the main food culprits. Then write down everything you eat and when and journal along beside that how you feel. Moody, angry, upset stomach, fever, change in movements .. anything. For us it was easy because my dd's bowel movements instantly cleared up in 2 months. Then we went to food trials. He said to do a month long food trial eating the exact same thing prepared the same way for that month. start with eggs, then dairy, then move to wheat (since most wheat products have the other two in them) . Continue writing down the food and journaling affects. So for a month we added scrambled eggs to our breakfast and for the next month a bowl of ice cream for dessert and then moved to a slice of toast for the next. 3 weeks into that we started having clear cut no doubt its wheat. Took the wheat out , replaced with barely, then took that out and replaced with rye and then we were at the ped gi by then.

We then went back to the basic diet and then after two months of that, added in one at time gluten free things. If you bake, you will find it easier to do and cheaper. Good luck with it!!

[Hen]

Melissa,

 

thank you, I will go look for books by Korn, I see she has a "dummies" book, I'm going to head out and see if the bookstore has it.

 

I'm still unsure about being tested. It would be very helpful to know for sure, and not to always wonder if I'm being "high maintenance" or always thinking something is wrong with me. Also would be good to know if I am allergic to anything.

 

but, beyond that, it seems to me that it is all about diet, not sure how having the diagnosis would really help. We have good insurance now, I worry tho about what if dh was laid off and we had to get our own insurance, this would then be a pre-existing condition.

 

then again, it might help to have a diagnosis, to know that this is serious, and that I can't be casual about it.

 

ohh, what to do?

[Hen]

Karin,

 

thank you for your helpful hints, I did not know about the social group, thanks.

 

Cyrena, thank you for the book recommend, I will see if the library has it.

[Hen]

Servin,

 

Thank you!:) That was very helpful...I was trying to figure out the mechanics of eliminating things, you helped me to see it.

 

I am sorry about the insurance issue with your child, that kind of thing worries me, specially since I am getting older, and it is all down hill from here...body wise...

[Storm Bay]

Melissa,

 

I'm still unsure about being tested. It would be very helpful to know for sure, and not to always wonder if I'm being "high maintenance" or always thinking something is wrong with me. Also would be good to know if I am allergic to anything.

 

but, beyond that, it seems to me that it is all about diet, not sure how having the diagnosis would really help. We have good insurance now, I worry tho about what if dh was laid off and we had to get our own insurance, this would then be a pre-existing condition.

 

ohh, what to do?

 

 

Having done just gf/df and messing around with the various elimination diets, etc, I have to say that having an ELISA test done was worth it--worth it enough to have had to pay for the MD ourselves (but not the test) as she wasn't on our insurance.

 

Even meats can be trouble for some--my dd cannot have lamb nor chicken, and chicken is a common suggestion in starting an elimination diet. Most MDs know little about foods, and many allergists know next to nothing about food sensitivities as they're focused only on allergies.

 

An ELISA test is a blood test that measures immune responses to food; these are not necessarily allergies as the problems produced do not fit the strict definition of allergies. You don't have to have celiac disease to be unable to digest gluten, or to be sensitive to it in other ways.

[hi_itsgwen]

Hi Hen Jen,

 

I'm sorry for your troubles. One of my fav. sites for health stuff with a more natural and DIY approach is www.welltellme.com. They have a very active community of ladies who post a lot about gluten free lifestyles including recipes, what tests to have done, etc. A lot of them use DAN doctors or Naturopaths, as they seem to be more in tune with rooting out the cause of allergies instead of just treating for symptoms.

 

I'm sure they would be more than happy to answer questions for you. Here is a great thread on beginning a gluten free lifestyle, and another very interesting thread I've been following is called the GAPS diet. It's essentially an elimination diet with the goal of healing the gut issues that are causing food sensativities. Probiotics may also be of great help to you, and can be purchased at most regular drug stores.

 

HTH!

[Jennefer@SSA]

Jen,

 

Hi! There may be a sort of pre-test you can do before doing the full out test to check for gluten intolerance. Ask your doctor but when I thought I might have Celiac my dr first did a basic test that checked to see if there were excessive antibodies in my blood. No extra antibodies would indicate no celiac. High levels of antibodies would warrant further testing. Also I was not anemic so we stopped right there. If your doctor isn't familiar feel free to PM me and I can call my dr and ask the name of the test. I can't remember off the top of my head.

 

As for how to go about this, here are some tips others shared with me when I was starting out -

 

Get rid of all your wooden cooking utensils and cutting boards (or put them away until you decide if you will continue this diet or not). These materials are pourous and it is impossible to get the gluten out completely. I purchased all new wooden spoons when we started.

 

Check spices. McCormick are guaranteed to be gluten free as well as Adams. Most other brands of spices are suspect unless they specifically say gluten free.

 

Vanilla extracts typically have gluten (the vanilla pods are soaked in alcohol made from grains). Find a vanilla that is gluten free.

 

It is better to have your entire family go gf with you if at all possible. Otherwise cross contamination is really difficult to control.

 

Many, many recipes you will find use lots of corn starch, white rice flour and other nutritionally void flours/grains. These are akin to white flour and avoid them as much as possible. One of the best things that I learned from the gf experiment was how many amazing grains are out there. The bread I currently make for our family has millet, oats, flax and quinoa. I never would have been exposed to many of those if it were not for gluten free cooking for 8 months.

 

This was my favorite blog for wonderful recipes when we were gf:

 

Gluten Free Mommy

 

And her GF bread was the very, very best of about 15 recipes I tried. She mentions in the post that Jennefer requested the recipe. That was me!!! :D

 

On her right side bar is a group of posts called "Essential Posts" and those would be really helpful for you starting out.

 

If I think of anything else, I'll post them later. Good luck and I think you are really wise to try this. It will take some getting used to but it's very doable. There are even a few restaurants that have gf menus now!

[Hen]

I am loving all the links everyone, thank you!

 

I went to the bookstore to find Celiac disease for dummies, but it wasn't there. I looked through another book, it was very informative and she was very much for getting tested...so I am starting to re-think having it done.

 

But now, later in the evening, I am wondering if I am overblowing my problems...now that I feel better. I had an episode starting Thursday night and did not end till late this morning (sat.) bloating, gas, pain, some other stuff I won't go into...

 

but now I am feeling better, so I am starting to wonder if I am a worry-wort.

 

Hubby does agree there is something wrong with my digestion, he can hear me sloshing around at night.

 

The big point for getting tested, the book said there are differences between sensitivities, allergies and celiac disease, and that celiac disease is actually tearing up your intestines..it's not something you can just cheat on once in a while and deal with being uncomfortable, that you are damaging yourself. So, it does seem important to know what you are dealing with, specially, I would think if you have a track record of not having discipline with food.

 

thanks for all the tips and help you guys.:001_smile:

[keptwoman]

The big point for getting tested, the book said there are differences between sensitivities, allergies and celiac disease, and that celiac disease is actually tearing up your intestines..it's not something you can just cheat on once in a while and deal with being uncomfortable, that you are damaging yourself. So, it does seem important to know what you are dealing with, specially, I would think if you have a track record of not having discipline with food.

 

thanks for all the tips and help you guys.:001_smile:

I hear what you are saying but in the end testing was not an option for me as I figured out by myself what was causing the issue and would have had to make myself sick again to get tested.

I don't know if I have celiac. I suspect I do. However the fact that I feel so much better is all the motivation for me! When I eat gluten accidentally I know I have done it and pay for it for weeks afterward. It's weeks of discomfort rather than a night or two. That in itself is enough to make me very careful about avoiding gluten. I don't have a lot of discipline with food particularly sweet food; but I have discipline when it comes to avoiding gluten because I don't want those stomach pains again! There is also of course the motivation of the damage I may be doing but I'm rather short sighted.... I'm much more interested in just avoiding the pain and bloating that comes with eating it.

Edited April 19, 2009 by keptwoman

[Mrs. Lilac]

I have a GF boy here....we love these books....

 

Special Diets for Special Kids (there's a vol. 1 and 2)

The ADHD/Autism Cookbook

[Supertechmom]

I hear what you are saying but in the end testing was not an option for me as I figured out by myself what was causing the issue and would have had to make myself sick again to get tested.

I don't know if I have celiac. I suspect I do. However the fact that I feel so much better is all the motivation for me! When I eat gluten accidentally I know I have done it and pay for it for weeks afterward. It's weeks of discomfort rather than a night or two. That in itself is enough to make me very careful about avoiding gluten. I don't have a lot of discipline with food particularly sweet food; but I have discipline when it comes to avoiding gluten because I don't want those stomach pains again! There is also of course the motivation of the damage I may be doing but I'm rather short sighted.... I'm much more interested in just avoiding the pain and bloating that comes with eating it.

 

 

:iagree: The big difference between allergies, sensitivity, and Celiac is nothing in reality IMHO. A lot in theory and in talk, yes. One does this and one does that and one causes these complications and one causes this set. But in day to day practice whichever you are given, you must go wheat free/gluten free and remain that way to feel good and avoid discomfort. Based on my dd and myself, Celiac tends to leave you feeling bad for weeks if you ingest gluten .

 

However, I was amazed to discover just how bad I felt once I began to recover. It wasn't just a little discomfort when I ate or gi upset. It was the all day long pain that I had learned to live with and didn't even realize I dealt with in so many ways. Like the first time I stretched out my arms to put my coat on. I haven't extended my arms in years due to the pain that would quickly make me wish I hadn't. And I put my coat on in a hurray to catch the toddler before she bolted. Normally, I slowly carefully pull one on with arms down. This time I just threw it on and realized What? I could lift my arms above my head. WOW.

 

It's discovering tons of those little things you learn to live with and have forgotten you ever could do. You just chalk it up to age, getting older, having more kids, being wore out more. Then the day comes when you run half a mile chasing a toddler on her trike going down hill and don't even have a pain, when your 12 yo gives you a harder than he should have punch in the arm and you don't have a bruise and can tussle him to the ground without even wincing then or later. :D I can do more at 38 one year gluten free then I could at 28 living on gluten. That is just down right sad and disturbing!

 

The tests for gluten are like pregnancy tests as I read someone here mention. Yes means OH YEA, No means try again another day. you can rule it in with the Celiac Blood panel and with the biopsy but you can never rule it out. Too many people think including drs that a negative means you don't have it. Nope, it just means your level of gluten antibodies falls below normal. We are all weirdos around here and our gluten antibodies were all round 5. It was a 10 to be considered Celiac. A blood test is a good way to go. It's the Celiac panel from Prometheus labs in California and it tests the following

Anti-gliadin IgG ELISA:

Anti-gliadin IgA ELISA:

Anti-human tTG IgA ELISA:

Anti-endomysial(EMA) IgA IFA:

Total serum IgA:

 

This lab is the best in the country. SO best that they recently changed the reference range to reflect the latest studies produced by the University of Chicago Celiac Center which uncovered earlier methods/levels of antibodies detecting Celiac disease. Had we been tested under the new range, we would have been dx with a definitive Celiac dx. However. they were tested before this latest study was released in 2008 and were not high enough to score under the old norms. I haven't been able to get an agreement that the test is the same just with new range in order to change her record. (They didnt' change the test. They just adjusted the levels based on the research that discovered earlier stage Celiac.) And an interesting side note that has always fascinated me. If you are Dx with Celiac, they want your numbers (igg, and iga) to be 0. Not 1 or 2 or above normal but 0. Anything above that means you are getting gluten into your system. I wonder sometimes if producing any antibodies consistently is good for anybody even if it is "normal". Anyway....

 

http://www.celiac.com/gluten-free/ is a great site to start. It's a forum. Post your questions and you will get answers. Search around and you will see tons of all levels of Celiacs as well as find detailed posts on testing and diet. A lot of those people are very informed, know the latest, and can point you to the research studies to back up their claims. Celiac is even being studied to reclassify it as "spectrum" disease with a wide spread much like Autism was done a few years ago. A lot of things fall under this that most people would never link together.

 

My only other favorite that I haven't seen listed here is the recipe book GLuten Free 101 http://www.savorypalate.com/gf101.aspx