Allergic to Gluten

Updated on October 15, 2009
J.R. asks from McKinleyville, CA
24 answers

My allergy test from a blood sample finally came in . . . as suspected, I am allergic to gluten (had high level of antibodies). I read about the different levels of gluten allergy: sensitive, intolerant and celiac disease. I do not know where I stand on that gradient and am not scheduled to have more testing done. What I wonder about is to what level should I be careful about not eating gluten? For now, I plan on removing all sources of wheat, rye and barley from my diet, but what about oat? Also, should I really stop eating none-gluten products from factories that handle wheat? I would love to hear from your experiences and advices on the subject. Thanks!!

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So What Happened?

Thank you for all the replies. I really appreciate the encouragements and most of all your recommendations. I love reading and the links/books provided below will be a good place to start. I will also request some more testing to find out my level of sensitivity (would surely be something good to know). Thank you also for the food product recommendations . . . I will look for them in the health stores close by or order online.

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G.D.

answers from Modesto on

I would suggest you join a GF/CF group online to learn and share with others about cooking gluten free!!! http://health.groups.yahoo.com/group/GFCFrecipes/ This is a good one!!! Good luck!!!
Love, G.. :0)

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A.H.

answers from San Francisco on

Hi J.,
Sorry to hear about your situation. I'm allergic to gluten too and don't have any idea where I stand on the scale of allergy. I do know when I feel crummy and when I feel good. As a previous Mom suggested, you should detox and heal a little before experimenting with oats or equipment-shared foods. Personally, I can handle a small amount of oats (in meatloaf, for example) once, but if I eat them again the next day I'm not too happy.
I'll also point you to a great website I just found:
http://glutenfreegirl.blogspot.com/
Also, if you'd like an awesome recipe for gluten free peanut butter cookies or blueberry muffing, let me know!
Good luck and the good news is you will consistently feel good now that you're off gluten.
A.

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S.H.

answers from San Francisco on

hi josse - sorry to hear about your gluten intolerance! if you are interested in getting more professional feedback and help, my husband is a functional diagnostic nutritional counselor, a certified metabolic typing advisor and a holistic lifestyle coach (i know, all random fancy words)... he is gluten free as well, and has a wealth of knowledge in this arena. if you'd like an experienced opinion or adive, he's more than happy to chat with you. let me know and i'll put you in touch with him. :-) best of luck!
- S.

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J.H.

answers from Sacramento on

Can't speak to your specific question, but I have a friend who has been living gluten free for years. She buys many things from Trader Joes and Raley's/Bel Air. You might be amazed at how much better you feel if you just go all the way.

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C.H.

answers from San Francisco on

I have 3 1/2 years experience with my daughter being allergic to gluten. It is a bit of a challenge at first, but there is so much information avalialbe now so you can educate yourself. I agree with the advice to talk to your doctor to find out exactly how sensitive you are. I would also find a naturopathic docotr who knows so much more about the digestive system and other effects the gluten can have on your system.
My daughter can not eat oats - it surprised me to see that so many can. The hidden sources are the most difficult ones to find. While it is easey to avoid wheat bread, barley soup and pasta etc - it is easy to forget that soy sauce is made with barley and modified food starch often is made with wheat. Learing to read labels and reading online and in books is really your most important thing to start with. I also agree to take several months to clean your body from all gluten before trying anything that you may or may not tolerate. Some people have severer withdrawal symptoms, like qutting drugs cold turkey so it's probably good to find out what is within the range of normal. As for products we have found Pamela's to be very good for baking, pancakes etc, but there's a lot of other good ones out ther too. Good luck in your new adventure - you will feel so much better soon.

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J.P.

answers from Phoenix on

Yes, I know many people with celiac and they told me that oats do make them worse.
I am a mom and also the author of "The Truly Grain-Free Cookbook; Beet and Cane Sugar Free Too!" You may find my book helpful to you. By nature, it is Gluten Free. The ISBN # is: 1-60563-263-5. You can also visit my website at: www.freewebs.com/trulygrainfree I offer help on there in my blog for grain free cooking. I have children that are grain free/sugar free and have been cooking this way for 11 years now. I hope that I can be of help to you.

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M.K.

answers from San Francisco on

For several years my son was gluten and casien free. I learned a lot during that time about where gluten is hidden. I suggest that you look up Gluten Free Gourmet cookbooks by Bette Hagman. She has several books out, they are easy to find via Amazon among others, not very expensive and quite informative. She has recipes for just about everything and they all work and are tasty! If you have celiac disease, you really do need to avoid all gluten as it does damage your digestive tract and you'll feel awful, too.

Oat is controversial. It depends on who you are reading and listening to. My understanding is that oats do not naturally have gluten but are often processed in plants that process wheat and get contaminated. So you are taking a chance with oats. On the other hand, they process a lot of stuff that doesn't get cross-contaminated. It is a calculated risk depending on the manufacturer.

I wish you the best.

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H.F.

answers from San Francisco on

Do an internet search to find your local celiac support group. They will welcome anyone who is gluten-free. Also when you have tried gluten-free foods from your local store, if you find something you like try Amazon.com's subscribe and save program. You agree to have a case sent to you every 1, 2, 3 or 6 months and get 15% off plus free shipping. We do this fro Bob's Red Mill GF cronbread mix and may try other foods in the future. Also at the Health food store be wary of the bulk food bins. Scoops easily travel from bin to bin. We only buy from the top bins that don't use scoops and the bulk herbs that are in a different section of the store. I noticed you liek a whole foods diet which will actually make things simpler for you. Most of the hidden gluten is in processed food. We get Bob's Red mill gf steel cut oats (we'd rather be safe than sorry). The oats issue for cross contamination goes beyond the factory it starts in the fields with crop rotation (ever have something grom in your garden you didn't plant?) then they are often transported in the same trucks, processed on the same lines at the mills and packaged on the same equipment. When Quaker had their oats tested they tested at 980 parts per million for gluten. The FDA says that to be labeled gluten-free in needs to be 20 ppm or less. We've talked of growing our own oats (as we love them) but haven't gone that far. It is our 17 month old who is celiac but since th whole family has gone GF to protect her my 7 year olds eczema has disappeared my 3 year olds bowels hav efirmed up and I am having my first pregnancy with out blood sugar swings and constipation. I think gluten affects all of us more than we realize.

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S.K.

answers from Sacramento on

I would suggest getting the tests done to see what level your allergy is. How you change your diet will be different if you have celiacs vs being sensative. I have a sensativity to wheat/gluten so I do my best to remove those items from my diet, but I haven't had to remove oats or barley or any of that. If you had celiacs, those items would most certainly need to be removed. I have also been able to substitute spelt flour for wheat (something you can't do if you are celiac). So I think it's important to know where you stand, it will make finding foods you can eat so much easier. On a side note, if you are looking for pasta to replace wheat pasta, you should try the Tinkyada brand brown rice pasta, it's the best I've found so far.

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A.S.

answers from Sacramento on

Well, welcome to the world of gluten free living : ) I was diagnosed with Celiac at the age of 3. Everyone's sensitivity is different...some eat a grain of crouton and know something snuck in within 30 minutes, and others like myself don't have immediate reactions and it's more of a "build up in your system" type of thing and then symptoms start and last for months. My gastroenterologist says ANY wheat in ANY amount is bad because your body reacts. I'm sure it's true, and I consider myself a pretty strict follower but not obsessed. I will buy products that were processed on a plant with wheat. I don't drink regular beer and stay away from barely. Oats are okay with me, but not with everyone. I would clean yourself out of both and when your symptoms have gone away, try introducing them and see what happens. If you would like my recommendations on products I'd be happy to pass them along, it can get pricey taste testing your way through gluten free items, just let me know. Good luck, it's definitely an adjustment but one that really can be made without sacrificing all the wonderful things you've come to love.

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R.K.

answers from San Francisco on

hi,

hope you feel better. fyi i make all organic, gluten free, no added sugar products, www.organicvillefoods.com. they taste delicious!

take care
R.

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K.B.

answers from Sacramento on

It's really going to depend on how bad your allergy is. I was sensitive to gluten for awhile, so I didn't have to be over the top careful, but now that you know you can be more aware of what affects you. I adjusted as I went, some things I thought I'd be ok with, I'd end up feeling crummy, so I'd take that out & others I thought would get me sick didn't. So it's a real personal thing. There is a magazine I used to get that was all gluten free recipes, articles, etc., the name escapes me but it was helpful. You should get retested in a couple years, as my allergies have changed, I'm now allergic to oats, rye & barley, fun fun! Good gluten free living!
K.

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E.B.

answers from San Francisco on

Hi. My 3 year old son has celiac disease and was diagnosed when he was 15 months old. My primary advice is to investigate further to determine whether or not you do in fact have celiac disease or just an intolerance (there really is a difference). As your doctor for the panel of antibody tests that specifically tests for celiac disease. If those come back positive, there is a 95% chance you do have celiac disease. You could pursue further after that for 100% confirmation by having a intestinal biopsy (my son had this done). Whether or not you are gluten intolerant or have celiac disease, you should avoid all gluten...wheat, rye and barley. Oats are not considered to contain gluten, but b/c of cross contamination issues, most celiacs avoid oats. There are oats out there that manufacturers guarantee are 100% gluten free. As for cross contamination from factories that handle wheat, we don't worry about that. We've never had an issue with my son. I guess it depends on how sensitive you are. We just felt that it would leave virtually nothing for my son to eat if he had to avoid cross contamination products. Overall, we've not had a hard time with the gluten issue. Its pretty easy to follow as long as you do lots of cooking at home and don't mind not getting take out very often. Feel free to email back if you need any other information. I know its very overwhelming at first, but it gets so much easier.

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J.E.

answers from San Francisco on

Here is a great website to check out: www.glutenfreeclub.com. It is a site that has recipes, advice and community Q & A similar to this site. There is information on restaurant dining, traveling in the U.S. and abroad and more. I have found it very helpful.

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J.F.

answers from San Francisco on

Hello J.,

I am also gluten intolerant. It is really hard to give up, I know, and there is hidden wheat and gluten in everything. You can probably eat oats, but just see how you feel after you eat them. I eat oat and I am fine with it. I am really careful, though, that I read labels carefully. One slip and I feel terrible.
Some suggestions:
Whole Foods (I know it's expensive) has a huge selection of gluten free breads, crackers, corn tortillas...
Also raw snacks are gluten/wheat free.
I use pure polenta as long as there is no hidden gluten in it, it's great stuff.
Hang in there and you'll get used to it.

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S.M.

answers from San Francisco on

These are medical questions. Ask your doctor.

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J.S.

answers from San Francisco on

Almost everyone is really allergic to gluten but they don't know it or how bad it is for you. YOu can get gluten free oats from Bob's redmill. I buy mine at Whole foods.
Truth is you can have more testing done but the best thing is to eliminate it from your life all together. I have a friend who is very knowledgable and has a protocol for supplements to take get it out of your system all together. Call her for more questions if you would like and she can help steer you in the right direction, ###-###-####, her name is Zandra.She has a back round in nutrition and is a bodyworker and lives in Oakland.
Good luck!

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W.A.

answers from Salinas on

Totally eliminate it for about a month. Let your body detox. After that, try a bit and pay attention to how your body reacts. How do you feel? Tired? Sick? how intense is your reaction. You won't be able to tell until you flush out your system entirely and allow yourself some healing time.

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A.O.

answers from Salinas on

Hi Josie, sorry to her your allergic to gluten. However, if you are looking for gluten free recipies check out this blog: http://crockpot365.blogspot.com/ and click on "gluten free" This is a great blog!!! Hope this helps

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L.M.

answers from Sacramento on

My suggestion is to keep reading!!! Read as much as you can on the subject. Get some books...You will refer back to them constantly.

Here are some websites that are really good.

http://www.publix.com/wellness/notes/Display.do?id=Diet&a...

http://ezinearticles.com/?A-Gastroenterologists-Personal-...

Re: testing--
http://www.celiacdisease.net/testing

http://www.celiaccentral.org/What_is_Celiac/13/

http://glutenfreeinsd.com/about_celiac.html

http://www.clanthompson.com/news_archives_story.php3?stor...

http://www.gluten.net/downloads/print/glutenintolerancefl...

My main concern for you is that your doctor needs to be giving you much more guidance. If you haven't already, you should see a gastroenterologist. An endoscopy needs to be done to formally diagnose celiac. If you are celiac, you should avoid every speck of wheat to avoid the damage being done to your intestines and to avoid realted illensses (autoimmune condisitons, cancer, etc.).

Whether you are gluten intolerant or celiac, the treatment is the same--A gluten-free diet. There are celiac support group everywhere. You will learn so much from the other people who have already done so much research.

You can try gluten-free oats. Many celiacs handle them fine but some can't. The oat companies tell you to go completely gluten-free for about 6 months then gradually add the oats back into your diet. I would also REALLY try to eat only foods CERTIFIED gluten-free. That means try not to eat food s that say they processed in a factory that processes wheat. I'm not sure what symptoms you had and what led you to be tested but your body needs time to heal.

Good luck in your research and hang in there! It can be done with some reserach and some practice. It isn't very convenient but you will feel better and protect your future health. Let me know if you need any specific artilces to read.

:) ~L

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K.U.

answers from San Francisco on

Hi J.,

For about five years now I've been working very hard to avoid gluten and I've read quite a bit about it. Everywhere I've looked, it's been said that the gluten in oats is tolerated by most if not all people who normally test positive for antibodies, as you did. I can't explain this anomoly but it is fortunate b/c oats are great. I use a lot of oat flour, rice flour, and others (amaranth, quinoia, etc.) I think for most people it's important to be vigilant. I had a little bit of tempura yesturday and I regretted it almost immediately! The level of damage it does to a celiac person's intestine is too severe to risk even a little bit. I think after yesturday (a VERY rare indulgence) I will go the full-time, never off-the-wagon gluten-free myself. I think it's worth it in the long run.

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C.C.

answers from San Francisco on

I never had the test, but have taken gluten out of my diet on the advise of my chiropracter, not my md.

Other sources of gluten can be soy sauce and teriyaki sauce. They have wheat in them. Some salad dressing have gluten in them. You really have to read the labels.

Whole Foods (grocery store) has a pdf file on all the gluten free foods that they carry. I find this to be very helpful.

I, also, started seeing a food coach to see what foods I can successfully eat. Some alternatives to wheat grains are millet, quinoa, amarenth, brown rice

I bought a gluten free cookbook and it tells you what is gluten free and what is not. Also, some types of salad dressing will have gluten in them.

There are many websites that deal with celiacs disease and gluten intolerance. You can google them because I don't know off hand.

I was really sick from eating the gluten products and am glad that I try not to eat them. (although I do miss my pasta, but there are alternatives).

I hope this is helpful. My food coach is also into eating whole, non-processed organic food.

C.

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K.C.

answers from San Francisco on

I would avoid oat too since most oats are contaminated with wheat. Since the fine particles of the wheat flour can stay in the air a long time, any plant that processes wheat or any of the other gluten grains there is a strong chance of contamination...even if equipment that are shared are not cleaned properly. I usually advice my patients to avoid oats too and check out the celiac disease website. It has a lot of info and tips as well as other grains you can try.

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G.B.

answers from San Francisco on

Hi, Just an fyi, I got coconut flour online. I wonder if you can have that?

ps...Candidas albicans has the same protien chain as wheat gluten and can do the same damage to the intestines.

gut repairing: take L glutamate

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