October 24, 2010


Another Gluten-Free Eater

Ten years ago this month I was diagnosed with celiac disease.  I’ve already written out my celiac story, so I won’t go over it again. It doesn’t look like we’ll be having a party as my son suggested in the post A Reason to Celebrate, but we’re continuing to enjoy good food. 

10 Years
Interestingly, it is that son who is now also eating gluten free.  He has given me permission to share some of his story.  Let’s just call him J.  He’s my oldest and is now 19 years old.  Over the summer he worked long hard hours for a tree company.  It was one of our hottest summers ever and he drank lots of Gatorade and water.  When he mentioned one day that he had a slight change in bowel habits, but no other symptoms I attributed it to the sugar in the Gatorade.  A couple of months later he casually mentioned that he thought he should be tested for celiac.  Work had been over for a while and he was still going to the bathroom more than usual.  He also noticed that he was more tired than usual.  Later he asked me what to do for mouth sores.  I told him that canker sores can be symptom of celiac and that I had them before I went gluten-free.

I’m going to skip a lot of details that I might give if it was my own story.  The good thing was that we had testing, including an endoscopy done very quickly.  Both blood work and biopsies were negative.  The doctor said his villi looked great.  The confusing thing is that his symptoms vary.  Sometimes he seems to have a strong reaction such as diarrhea or a mental reaction (you can read about how I react to gluten mentally here).  Other times, he seems to be fine.  After all the tests came back negative and the doctor recommended a gluten challenge, J hesitantly ate some gluten.  He didn’t react, so he ate some more.  He went a week eating normally with no strong reaction, but his canker sores started coming back and he was noticably irritable.  After that he decided he should probably eat gluten free. 

I don’t think he’s completely convinced the problem is gluten because he still has fatigue.  It may be that he needs to be gluten free longer and be more careful, or it could be that something else is also affecting him.  I find his symptoms and reactions to be too much like my own to think that it’s not gluten.  For now he is eating gluten-free, though.  He respects my opinion on the matter, but he’s not a child who I can tell what to do. 

Before we had the results of the tests, I actually wanted them to come back positive.  It seemed obvious that the problem was gluten and I wanted J to know for sure that he had to eat gluten free.  Now I have mixed feelings.  I’m glad he does not have celiac disease, and I feel pretty confident that this is a case of gluten intolerance rather than celiac.  However, I hope that he will not give up on the diet. He commutes to college and plans to do so in the future, but at some point he will move out and not have mom to cook for him.  I would hate for him to live with symptoms unnecessarily, and eating gluten-free will make it much less likely that he will develop celiac disease.  However, any accidental ingestion could trigger it.

Having another gluten-free eater in the house changes things a little.  Anything I cook or bake is always gluten free and the whole family eats it.  That doesn’t mean that everyone always eats gluten free, though.  I do purchase bread, cereal, and crackers for the gluten eating members.  Thankfully, J is not a picky eater and is pretty happy as long as he has food of some sort to fill him up.  He can do a little cooking and fends for himself pretty well.  I had to clean out cabinet space to make room for more gluten free items.  Being young and on the go a lot, I try to have some quick and easy food on hand for him.  I have made and frozen some food, but I hope to do more of that soon.

That’s the gluten-free news at our house.  It’s been 10 years for me and about a month for my son.  How long have you been gluten free?

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I'm so sorry to hear about your son, sweetie. Thanks for your supportive blog. It has been the most helpful, encouraging, down to earth ting I have subscribed to since being diagnosed 14 months ago. And I have subscribed to A LOT of things, so that is truly a compliment!
Bless you for sharing and may your son find what he needs to be healthy.
Thanks for sharing J's story. We need to hear everyone's story so we can help ourselves and each other. The range of symptoms amazes me. It's incredible. I'm sure your son will start to feel better soon. I know it took my husband a long time to get his tummy back on track after his celiac diagnosis. My son was diagnosed almost a year ago with gluten intolerance. We are all gluten-free now, in and out of the home. It's just easier for us that way. Your son is lucky to have you in his corner!
I've been GF on & off for about 6 years now. Like your son, i don't always have the strongest reaction. Sometimes it effects me (mostly with either migraine or other pain) but other times it doesn't. I'd say that i currently eat a diet that is 100% GF 95% of the time. (I usually eat GF, but about once a month i may eat something that is not.)

I've lots of health issues unrelated (as far as i can tell). Chronic Fatigue mostly (it doesn't abate even when i'm 100% GF).

I hope your son soon improves, but i completely understand where he is coming from. When it doesn't always cause problems & the fatigue seems unrelated, sometimes it is hard to be motivated to stay 100% GF.
Congrats on ten years. A decade of being gluten free must feel amazing. I can't to get there and look back on all the great food I've experienced since going gluten free.

I'm sorry to hear about your son. It's good that it isn't Celiac Disease, but I hope you guys figure out what's causing his fatigue and other symptoms. <3
I've been gluten free for 6 years now. My 21 year old daughter just started eating gluten free earlier this year as well.

Sorry your son hasn't been feeling well and hope he'll be better soon.

Add on the other intolerances and allergies and it's a wonder we function at all!! I get reactions, mental and physical from artificial flavorings!! - Margaret
I've been gluten free for 7 months now. I was tested for the gluten antibodies by a chiropractor trying to pinpoint the source of my debilitating migraines. I have since found out that one of my nieces also highly intolerant of gluten and has gone gluten free. I suspect more of the family are probably either gluten intolerant or are suffering from celiac. I've been trying to educate them about gluten sensitivity and encourage them to get tested. My niece and I are both feeling much better since going gluten free.
My guess is the artificial flavorings in gatorade, and look at all the food colorings! Red 40 Yellow 5, Blue 1 YUCK! Praying he can find the reason behind all of this soon!
I have been gluten free for almost 2 years now - wow - what a difference it has made in my health! All of the tests - endoscopy, blood etc. showed no villi, but I pushed on with the doctors and sure enough, gluten sensitivity. When will they ever learn? I pray your son finds out the underlying reason for his ill health and starts feeling better soon. Thak you for your blog - it is great!
I've been GF for two years last week and it took 1.5 years to stop being tired....it drove me crazy but I stuck with it and now I feel like me again! Good luck to your son on this journey.
My wife was diagnosed with celiac in December of 1999. So, I'm right there with you. Even though I can eat all the gluten stuff, my wife's diagnosis has certainly changed my eating habits. It seemed so difficult at first and now it is just part of life.
Linda - I'm one of those whose tests for Celiac came back negative, but I am doing the gluten-free diet anyway. For the first few years I wouldn't necessarily get a reaction if I ingested gluten accidentally, but now, after four years, I am finding that I get a strong and immediate reaction. I feel stupid that it took me so long to figure it out, but I'm realizing now that some of the digestive and mood symptoms I've been experiencing over the last two years have been from small amounts of gluten rather than additional allergies or unrelated reasons. The symptoms, while not as severe as many I've heard of, last for 4-6 weeks. Fatigue is one of them. I hope your son has an easier time of it than most people going on the diet due to your expertise. Thanks for sharing your son's story. Sometimes it's important to hear other peoples' experiences.
What a story, dear Linda!! I am not a celiac but I am gluten sensitive. I can eat gluten for 2 days in a row, but not for the 3rd day otherwise I have headaches, stomach pain & a lot less energy!!!

I am living mostly gf since june 2010 & I feel a lot better, have more energy & I feel great. Too bad that gf foods are more expensive & sometimes tastes less!

But I love the challenges in gf baking & I learn a lot from your lovely recipes!
I have been GF for almost 9 years. I too used to get mouth sores - for me it was cold sores, one right after another and sometimes several at the same time. So many other issues I had went away or greatly improved when I went GF also. All the best to your son.
Linda, I may have shared before that my son is wheat-free and as far as we know does not have Celiac's. He can and does eat other forms of gluten (but it's rare).
It was 10 years ago for me, last January 2. That day made a huge change in my life, both for more "work" to eat, and for increased health for doing it right. It's been worth it, though. Thank you for so much good information!

Pat @ Elegantly Gluten Free
10 years - that's a milestone. As for your son, I hope he continues gluten-free for a bit longer and that he improves. For me, I didn't have a clear diagnosis either. My first try gluten-free wasn't as careful as it should have been, and it was only 3 weeks. I didn't notice dramatic changes, so I quit. It wasn't until 5 years later that I tried again and went strictly gluten-free (unprocessed, no cross-contamination, etc) for 2 solid months that I noticed the changes. (and my fatigue started to go away too) And now, when I eat gluten, I get immediate mental symptoms and digestive symptoms. I know. But I don't want for your son to suffer either - I hope he finds an answer. You might suggest to him to have his vitamin levels checked. Mine were low before going gluten-free (B12, D, iron). Probably what contributed to my fatigue.
Congrats on 10 years, Linda! It's 7 1/2 years for me. Now it's hard to remember every single issue I did have when eating gluten because there were so many, and once you start feeling great and don't have the symptoms any more, you tend to forget them. Fatigue was always a big one for me. Dr. Cynthia Rudert says it's the most common symptom. I know that many who have been diagnosed with CFS actually have celiac/gluten intolerance per Rudert and others. I actually had more fatigue the first several months after going gluten free. The doctor said it was a detox thing. I went on FMLA and could just come and go as needed at work. Sometimes I had to cancel appts because just a 30-min drive would exhaust me. But after a few months, I found my strength coming back. Part of it was the fact that I was beginning to absorb vitamins and minerals after going gluten free. I was also put on thyroid meds, which made a huge difference in my energy levels. I second Alta's recommendation that your son's vitamin/mineral levels be checked, and his thryoid levels, too.

He's so luck to have you looking out for him, Linda. I feel a certain empathy and deja vu as my son finally went gf on his own 2 years ago. He inherited the issues from me although he didn't test positive for celiac either. He did test positive for gluten sensitivity though and does have the celiac genes as well. He's so glad he went gluten free and while I think he gets more accidental gluten than he should from eating out a lot and even doing fast food where the risks of cc can be higher(burgers with no buns), he's improved greatly and knows when he's been glutened immediately. He still has healing to do, but I'm hopeful it will happen more and more as he eats regular, home-cooked or very cautious meals.

All the best to you and your son,

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