Gluten Free Casein Free Update

by Erin, The $5 Dinner Mom on May 27, 2009

What happened to all the GF recipes? 

Well, after seeing a GI (gastrointestinal specialist) about a month ago, we stopped the GFCF (gluten free casein free) diet so that biopsies and further testing could be done to investigate the digestive issues that our oldest has had since birth.  She ordered an upper GI scope, as well as skin allergy testing.  The allergy testing came back negative, but the scope showed that he had an inflammed esophagus.  The biopsy revealed that he has eosinophilic esophagitis. 

Or a fancy way of saying he has a food allergy.  Just as your nasal passages swell and react to foreign pollen or chemicals causing sneezing, runny nose, etc., so his esophagus is swelling when he eats a food that his body does not agree with!

More extensive food allergy testing will be done in the near future, plus he is now taking a series of medications to control the swelling in the esophagus.  But obviously, the ultimate goal is to identify and eliminate the food causing the allergy, and get off the meds!!!

So I’m not crazy after all, as some have made me feel!  And we will get to the bottom of this and figure out exactly what foods to eliminate!  In the mean time, we have to have all foods “in the system” for the next round of testing.  So we carry on with a “normal” diet.

{ 21 comments… read them below or add one }

Melanie May 27, 2009 at 1:09 pm

Sorry to hear that the biopsies revealed EE, but in a way it’s good to know what you are dealing with. It definitly makes treatments easier and you know what will work. I hope you will be able to figure out what foods he is allergic to and eliminating them will help him feel better.
My little guy still has GI issues and we really don’t have answers, except that the allergist thinks he has chronic idiopathic urticaria. So he keeps having allergic rashes, GI reactions and other reactions without a known cause.

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Jennifer May 27, 2009 at 1:33 pm

You are in my thoughts.

I was told that my son has a sensitive tummy and skin and is NOT allergic to anything.

I have seen rashes as well as the working of benadryl to prove them wrong.

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Laura May 27, 2009 at 1:54 pm

I had wondered about the Gluten/Casein diet. I didn’t realize there were medical issues. That’s tough. Good luck to you all!

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Donetta May 27, 2009 at 2:18 pm

Check out eating for your blood type. I have suffered with allergy my whole life. It apears that the allergy foods are just along my blood type line. Also the additives and the Genetically altered foods are really having an effect that folks at kept in the dark about.
The genetically altered seeds have made use of a virus to insert the genome that allows it to become round up ready. That is the poison can be sprayed on the crop and the seed with the GA is not killed when all else in the field is. I have watch a significant improvement in my family keeping away from those product. It can be easy if you learn about it. It can also be inexpensive.
fri
your never crazy when your doing what you can to have the best outcome.
no one can make you feel anything so it is said. We let them make us feel it.
Do not let anyone give you any business over it :)

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LLnL May 27, 2009 at 4:21 pm

Good Luck. I try to eliminate things from my diet to see if I feel better but I think that going through the series of testing is the only conclusive way of finding out.

Hope your baby feels better soon.

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Suzanne Brown May 27, 2009 at 6:02 pm

Hope all is well. My daughter has a food allergy. The RAST test is not accurate. You must do skin testing too. Good luck!

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Vikki May 27, 2009 at 6:09 pm

I’ve had scopes done, and nothing revealed gluten-intolerance. However, I have the skin problem (dermatitis herpetiformis) so I benefit from eating gluten-free. My Tween recently had the allergy testing done, and they didn’t want to go further (managed care, my foot!), but the testing showed no actual allergy. We were informed that it’s probably just an “adverse reaction”. Since the testing, we’ve taken him off of almost everything… gluten, anything processed, anything not organic, and changed out cheese for raw or organic goat milk products. He is 70% a different person.

Gotta trust in self! Vikki at http://www.homesteadingbasics.blogspot.com, http://www.backyardgrocerygardening.blogspot.com and http://www.survival-cooking.com

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Iva @ Horizontal Yo-Yo May 27, 2009 at 7:07 pm

Mom knows best.

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Kelly May 27, 2009 at 7:23 pm

My son has to have a scope done in a few weeks. They are checking for EE also. It was nice to read your post, because this is the first time I have heard of this condition.

Thanks so much!

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Melissa May 27, 2009 at 8:49 pm

Have they done RAST blood tests? I highly rec those….

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Alison May 27, 2009 at 9:20 pm

From everything I’ve read, one must be on a high-gluten diet (4-5 pieces of bread per day for 3-4months) in order for the bloodwork to be positive for gluten intolerance–which neither RAST testing nor allergy testing will show, as gluten intolerance is an autoimmune problem rather than a true allergy.

The proper blood tests would include IgA, IgG, Endomysial Antibodies, and 2 others that I can’t think of off the top of my head. Allergy tests look for IgE. (

Don’t get me wrong–I think it’s good to rule out allergy, too! But there are reasons why in the US, it takes an average of 11 years to be correctly diagnosed with celiac/gluten intolerance–and one of those reasons is that physicians, even GI specialists, often order the wrong tests, or read the right ones incorrectly.

With children, the biopsy/endoscopy is not particularly accurate, as there are 22 feet of intestine, villi damage (from gluten) is patchy, and often not visible to the naked eye, and only a couple of tiny samples are taken from those 22 feet. It’s hit or miss.

The biopsy/endoscopy has been considered the “gold standard” of diagnosis since the 1960’s–when the sophisticated bloodwork available today hadn’t even been dreamed of.

I hope that gluten is NOT a problem for your boys, and that the ultimate solution is something quick and easy. I just wanted to make sure you knew all the parameters here.

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Jennifer May 27, 2009 at 9:44 pm

Erin, thanks so much for sharing this story with us. One of my twins has to have the GI scope and 24 HR PH test done in about a week for GERD issues she has had since birth. We also had allergy testing done and it revealed an allergy to eggs.

Wishing you the best of luck with your little guy!

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Jennifer May 28, 2009 at 3:08 pm

good luck! Allergy testing is no fun and digestive problems aren’t fun either. My daughter has both, but so far they can’t figure out the digestive part. Makes it hard on everyone.

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Vickie Lindstrom May 29, 2009 at 5:38 am

My daughter does not suffer from gluten allergies but has seizures and we have found that food aditives, colors and perservatives in alot of food and cheese especially has a big impact on what happens. We have been almost 3 years on a diet that is resrictive of alot of these things and her seizures,gerd and sleepless nights have gotten alot better. You are a mom and know your little one better than anyone else, they told me that I was crazy and that I shouldn’t worry, but my perserverance has paid off and now my daughter is dong so much better we are thankful and this diet has become a way of life we don’t really even feel like we are not on a regular or normal diet. You are strong hang in there and don’t worry what others think, you know what is best for your little one comes first. They told me that I shouldn’t worry but that is my job as mom. Keep it up and things will be fine. Sending you all my prayers.

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Michelle, the GF/CF SoccerMom May 29, 2009 at 1:52 pm

I’ll never understand why people feel the need to belittle us for feeding our kids healthy! Good job in doing what was right for your kids in the first place, and good luck figuring out the rest! Don’t you just love when science proves us right!?!?!

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Jackie May 29, 2009 at 9:26 pm

I am so sorry for all you have gone through to get to this point. I have been on a quest to help my son which has taken three doctors so far. He is allergic to several foods. I started a new blog to share some of my allergy-free recipes. I am trying to cook frugally and healthfully for him and the whole family. It is a journey.

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Emily May 30, 2009 at 4:19 am

Cute site you have here!
I have a son who is allergic to EVERYTHING! I bought this book http://sophiesafecooking.com/ and it is all wheat, egg, dairy, tree nut, peanut, soy, fish, shell fish and wheat free recipes. It has been such a good resource for me, and is for many people with your sons diagnosis. I know there are a lot of resources out there, but this cookbook was a life saver for me. . .and my son! Good luck!

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Connie Walsh May 30, 2009 at 5:05 am

I’m sorry you are going through all this. I didn’t even bother with the diagnosis. I feel better GF CF so that is the way I eat (*mostly*). I have had the celiac panel but I had only been on Wheat for 2 weeks, I understand now that may not have been enough.

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Emmie July 16, 2009 at 7:34 pm

Check out apfed.org and kidswithfoodallergies.org for the most accurate info about EE. Managing EE is a huge undertaking. Wishing you the best.

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Mary October 9, 2009 at 8:00 am

I am sorry to hear that all these great GFCF recipes are the result of health issues for your son. I know this can be challenging because of my own kids with similar issues.

A note about blood vs. skin allergy tests… research is showing that allergy skin tests are not as accurate as allergy blood tests which can show sensitivity to foods. Many allergists refuse to suggest the blood tests not sure why. I have seen time and again people receiving a “no allergy” result from a skin test only to have a blood test show 10-20 things they had sensitivity too. As a result, they were able to make the right dietary changes and finally feel better. I think this is an important message to communicate because traditional doctors are not communicating this to their patients and it’s very frustrating!

Best wishes to you on your health.

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Erin, The $5 Dinner Mom October 9, 2009 at 12:36 pm

@Mary,

Thanks Mary! We have done immediate skin testing, delayed (48 hour) skin testing and blood testing. And I think we’re to the bottom of it…and are eating the right foods!

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