In September, I posted about trying a gluten free diet for a few weeks. I have not said a lot about it since then, so I thought it was finally time to post an update.
A Little History
I have had digestive and reflux problems since I was a baby. I have literally had problems since I was just a few weeks old. My parents tried everything, including some very strange diets, in order to figure out what was wrong with me. I was a sickly child that was always underweight. I also had and still have, severe asthma and allergies.
As an adult I have continued to suffer with various health problems including infertility and endometriosis. I could write pages and pages on my various health problems, doctors that I have seen, and tests that I have had done.
Currently I have severe relflux problems, otherwise known as GERD (gastroesophageal reflux disease). Nine years ago, my esophagus was so severely scarred and narrowed from years of refluxing that I had trouble eating. I was actually getting food stuck in my esophagus, and it got so bad I could not even swallow my own spit.
At this point I found a GI Dr. that finally listened to me and understood my need to figure out what was wrong. He stretched my esophagus out so that I was then able to eat. After this procedure I did a lot better, because of the repair the Dr did and the medicine that I was on, but my acid reflux continued. Damage was still being done.
Seeking The Cause
Over the years I have tried various things to help my reflux. I have done no dairy, no refined sugar, no sugar, whole grains, no meat, etc. I tried not eating after dinner, so that I would not reflux at night. Nothing helped.
I have never been your average reflux patient. When you are diagnosed with with reflux problems they give you a list of things to avoid, none of them were things I was doing. I have never been overweight and do not have weight to lose. I have never drank coffee or tea. We do not eat a lot of greasy high fat food. We do not eat out more than a few times a month. Yes, I eat some chocolate and a pop or two a week (though I tried eliminating that also), but not enough to cause the problems or damage that I have had.
Getting Worse
About 3 years ago I started refluxing so bad at night that I was refluxing food into my lungs and coughing up visible chunks of rice, beans, etc., in the middle of the night. My reflux was far from under control.
I went through another round of tests, and they could not find anything wrong with my esophagus or stomach that would be causing these issues. At this time, I also had 14 polyps removed from my stomach and told my vocal chords were in very bad condition due to the years of reflux. I went through yet another round of test to see if surgery would help my problem. I was told it would not. I was then put on another medicine for my reflux and told it should help. I continued to get worse.
After researching Celiac disease and the gluten free diet, I decided to give it a try because I was desperate to find something that would help me. My mom had tried no wheat, when I was a child, but never removed all gluten from my diet. So, I thought it was worth trying. After less then two weeks, I was so much better. I can’t even begin to explain how much better I felt. After years of reflux and other intestinal problems, I finally knew what normal was and it was so nice. I was no longer waking up multiple times in the night due to my reflux and coughing up food. Just being able to sleep through the night was worth the change of diet.
My GI Dr. agreed that Celiac and/or gluten issues made sense. He put me back on wheat to run the tests for Celiac. I had blood tests, a scope, and an intestinal biopsy. My blood work was negative for Celiac and so was my biopsy, but during the scope my Dr found damage. My vocal chords are still so damaged that no one knows why I have a voice at all. Medically speaking I should not be able to speak. He also found damage to my small intestines.
Finally A Solution
If you know anything about gluten issues, intolerance, allergies, Celiac, etc, you know what difficult things they are to tack down, diagnose and deal with. I don’t want Celiac, and am glad that my test have come back negative.
However, my GI Dr. feels that because of my history and the fact that I have so much damage, that I should keep my diet gluten/wheat free. I agree because I feel so much better with wheat out of my diet.
My doctor may not be able to tell me why a wheat/gluten free diet works, but it does and for now that is all I need to know.
The Plan Now
I have now been gluten/wheat free again for almost three weeks, and it is great. I feel like a new person. I seriously do not remember ever feeling this good. I have no desire to eat gluten filled cakes and cookies again. I now know what they do to me, and I have lost all desire to eat like that again.
My Dr. did say to eat what I feel like eating and if it bothers me don’t eat it. So, I am going to try adding back in some things like oatmeal and rice crispies, that contain some gluten, but very little, and see how I react.
So, what does this mean for this site?
Will it change? No, it won’t change. I plan to continue to do what I have always done post recipes, tips, and kitchen ideas that everyone can use.
I have been posting mainly gluten free recipes for the last few weeks. Most of our meals have been gluten free, yet they have been normal food that anyone can eat. Most things can simply be adjusted by using corn tortillas instead of flour ones or by using rice pasta instead of regular pasta. Many desserts are gluten free or I can make them gluten free. Puddings can me made gluten free by simply using cornstarch instead of flour. I plan on doing what I have always done on this site.
Plus, since I am not considered a Celiac, I do not have to worry as much about things like cross-contamination. Which is good, since the rest of my family likes wheat and things that contain it. We are still working out exactly how much our eating as a family will change. For now I am fixing gluten free food for dinner, but the rest of my family is eating things like pancakes, bread, etc for the rest of their meals.
Baking gluten free does involve using some specialty flours, so I may start posting occasional recipes that contain those things. If I do that, I will post them on a specific day. That way, if you are interested in that, you can be sure to read that post, but if you do not need gluten free baked goods, than you can skip that post. I think by having a specific day for those recipes it will help you know what to expect. I am still working on what day I will do that on, and honestly I have a long way to go before I have any gluten free baked goods worth posting on. Believe me, I have had more disasters than successes when cooking with the specialty flours.
Overall, I hope nothing will change on my site and that you will continue with me in my adventures in the kitchen. I still have lots of recipes, ideas, kitchen tips, and reviews that I want to post on.
My readers are what makes this site great, and I hope you will continue to join me as I continue to make healthy and wholesome recipes and meals for my family.
Sorry to hear how you’ve suffered all these years. My 2-year old son has GERD and possible Celiac disease. He never ate enough gluten for the blood test to come back positive. He has a feeding tube because he refuses to eat. It is understandable since eating has caused him so much pain. I am thankful that you found relief for your symptoms, and I’m thankful that I and my son will benefit from your gluten-free recipes. We are praying that my son will some day eat, and we won’t know until then whether he really has Celiac or not. I’m happy you found relief, and I’ll say a prayer for you too.
Oh my goodness, Lynn. How awful to suffer so much for so long! Thrilled for you, that you found a diet that makes you healthy again.
Thanks for sharing so openly about your health issues. How tough for you. I have had my own health issues, and it can be a frustrating journey to healing 100%. I so agree with your doctor. Who cares if you don’t have an official “diagnosis”, if eating gluten free makes you feel better, by all means do it! So glad that it’s helping. 🙂
I was recently tested for Celiac – my GI doctor thought that I had symptoms similar to someone with the disease. He didn’t put me on wheat because he suspected that I was getting an unknown source of gluten. Well, the test was negative but we still don’t have a solution. It’s so important to take care of your health – I am so glad that you are taking care of yourself. It’s a journey for sure, but one completely worth it. I’m glad that you have a great doctor that listens to you.
Lynn, your symptoms actually sound a lot like eosinophilic esophagitis. My son has EE, was diagnosed for reflux like you, and it took us years to figure out what was really wrong. His EE is triggered by food allergies (it’s the protein in wheat, milk, soy, eggs and peanuts) that causes his symptoms. You might have food allergies (not the anaphalaxsis kind — and possibly not even that would sjow up on a skin test). Check it out: https://www.apfed.org/ee.htm
@Colette Martin, Colette, thank you for that information. I have had multiple biopsies on my esp. and stomach over the years, testing for different things. I am not sure if I have been tested for that or not, I may check into that. I am considering looking into allergy testing although I have had it 3 times before. But it has been over 15 years and allergy testing is much better now than it used to be. And maybe I need some more in depth allergy testing than just the skin testing that I have had.
Lynn, I am so pleased that you have figured things out! GERD is in my family, so I know how bad that can be. I often wonder if going gluten free would have saved my Nana from a lot of pain before she passed. She had a bleeding ulcer in her thirties and was on medication for years for acid reflux. I hope you continue to feel better and better!
Also, don’t worry about things changing. We come here for you – all recipes are good!
Lynn, I am feel for you and understand the problems you have been going through. I suffer from severe allergies, asthma and stomach type issues. I have through trial and error learned what foods cause more problems and avoid them now. It’s still a learning process as I love to cook and try new foods. Keeping you in my thoughts.
Take care~ Amy
I’m glad you have found something that makes you feel so much better. It’s always disconcerting when you can’t figure out what’s going on and on top of that be suffering the consequences from the unknown. I can’t really sympathise with you like the others here. My husband is allergic to shellfish and I have to be careful about using a lot of milk with my toddler but that’s about it.
All that to say, I will be back! I’ve enjoyed your blog and have gleaned a lot from it.
Lynn, I just want to voice my support for you as well. So happy that you have found a solution! I do not comment often, but do subscribe in a reader. I have mentioned before that I have food allergies and sensitivities (also recently diagnosed), so you have my sympathy and support. I just say what a wonderful thing it is that we each like to spend time in the kitchen creating new dishes, anyway… so it’s just a new “fun” challenge to meet new restrictions, find new substitutions, etc! 🙂 Again, just so happy for you to find good health!
I love your website, its one of the first I started following regularly. I am sorry you have had all these problems but so happy you have found some relief recently. I will still follow your adventures, you always have great recipes. I have a friend who does have Celiacs and i will be sure to share your site with her.
I am so glad you have found a diet that helps you feel better! I’ll give you a link to a blog I enjoy. She had celiac disease, and posts lots of gluten free recipes you might like to try.
Oh my gosh, my story sounds so familiar to yours. I had a bad virus and became sick for 2 1/2 years before they figured it out. At first, a positive blood test for Celiac but negative biopsy. However, they found Barrett’s Esophagus but told me I could eat gluten since I didn’t have Celiac. I was also diagnosed with GERD. What? I didn’t have any heartburn symptoms so I thought. I had burping, belching, joint pains and extreme bloating. Over a years things became worse and I began to have troubles swallowing almost everything and nausea too. At one point, I even had an ulcer in the esophagus all the while the doctors believed that this issue was not related to a gluten issue. One new doctor thought I should at least try the diet and I was simply amazed how it changed my life. I no longer woke up chocking. I slept through the night. I was rested and no longer needed naps. The burping and belching went mostly away. I was on the diet for a year when I had to have my Barrett’s checked by endoscopy (ever two years for life). He said he couldn’t believe it but felt the Barrett’s was gone. He couldn’t believe how different my esophagus looked. I originally was told that Barrett’s doesn’t heal and that maybe it is now hidden with fresh new tissue. So, I still need to look into what to do about comfirming the Barrett’s diagnosis but it is so neat to hear that your esophagus is doing better too on a gluten free diet. I’ve never heard of anyone else having issues of the esophagus from the gluten. And I too was told I wasn’t a candidate for fundoplication surgery. I had the 24 hour ph test and manometry done as I’m sure you did too hearing about your story. My doctor believes I may be able to get of the GERD meds for good. I sure hope so. Thanks for sharing your blog. I came across it when at another site, “I’m an organized Junkie”.
It is important for people to read stories like yours. I also tested negative on the tests for celiacs but I clearly get sick every time I eat gluten, so while I may not have celiacs I am gluten intolerant. I found relief from my GERD and other symptoms within days of going gluten free. Thanks for sharing.