Gluten free? Anybody know anything?

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Lance2020x

New member
I did a search and it doesn't look like there are any topics regarding this...

Where I am in California 'Gluten free' is an extremely hot thing. I've done some research and haven't found a ton of data so have sort of assumed it was a fad and people were feeling a placebo effect or felt better because cutting out gluten changed other parts of their diet and they attributed the better health to being gluten free.

But then I started dating someone who is incredibly healthy, vegan and very focused on eating right.... and she's been recommending I try less gluten as it's supposed to be an inflammatory.
I don't mind trying it, but I LOVE bread (I bake bread every week) so I need a little extra convincing.

Has anybody with CF tried going gluten free? If so did you feel any difference? I feel like we (as CFers) are more aware of what really works on us vs. what is just a placebo... So I'd like to find out.
 
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jshet

New member
My son has been gluten free for 10 years. He has cf, autism and celiac disease. The diet for him is not a fad, but will be a lifetime must. The diet has been a blessing for him. He is so much healthier because of it, and happy. He does the diet for medical and behavior necessities.
I will say the diet is expensive as compared to not being gluten free. For example, a loaf of bread that contains only 12 slices costs over $5:00, and a bag of pretzels can cost about $8.00. Gluten is in most snacks which makes it tough if you are a big snacker.
There are bread recipes , as far as the taste, I can not comment. I have tried the bread my son likes, and it is not something I would enjoy eating.
If you are going to try a gluten free diet, go slow with removing foods if you consume a lot of gluten now. Great go to foods are potatoes and rice as long as you watch what you are adding to them. Most butters have gluten. Gluten comes in over 150 ingredient forms found on your labels when buying foods. It can take some getting used to recognizing them all. Luckily now, in the last year, most companies list if there is wheat or gluten in it.
just know that if an item says it doesn't contain wheat, that does not mean it doesn't contain gluten. You will need to check all of the ingredients to be sure.
good luck, if I can help with any questions, just ask.
 
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Lance2020x

New member
jshet that's great to know.
Part of my skepticism and frustration with the 'gluten fad' is that I have a good friend who, like your son, has celiac disease.
So when many people in my area 'claim' to have a 'gluten intolerance', saying things like "Well, I shouldn't be eating this bread because I'm intolerant to gluten, it's sooo bad for me but it tastes soooo good!" it just makes me want to thump them.

Thus my hesitancy and desire for facts and testimonials when it comes to anti-gluten enthusiasts.

Do you think that, if your son DIDN'T have celiac and autism, you would still have him on a gluten free diet? And if so what would be your reasoning?

I'm really sorry your son has to go through all of that, sometimes I feel like life is hard enough with just CF, but you and he both are amazing troopers to deal with autism and celiac on top of CF. My hat is definitely off to you.
 
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jshet

New member
To be honest if he did not have celiac and autism, I would not have him on the diet. Without the need medically and behaviorally, I would see no point. I have a daughter, and she is not on the diet, and neither are my husband and myself because we are not having any adverse reactions to gluten and I don't think we could afford it to just be on it without a reason.
my son doesn't really miss these foods because he remembers how sick he was when he ate them. But there are times he gets sad because he will want something I can not find a good alternative for.

I would suggest if you are interested , try the diet, or eliminate some gluten, see how you feel. It doesn't have to be permanent in your case. Just be careful if you decide to go the vegan route on top of eliminating gluten. You need to remember you need to keep your vitamin levels up too.
 
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jshet

New member
To be honest if he did not have celiac and autism, I would not have him on the diet. Without the need medically and behaviorally, I would see no point. I have a daughter, and she is not on the diet, and neither are my husband and myself because we are not having any adverse reactions to gluten and I don't think we could afford it to just be on it without a reason.
my son doesn't really miss these foods because he remembers how sick he was when he ate them. But there are times he gets sad because he will want something I can not find a good alternative for.

I would suggest if you are interested , try the diet, or eliminate some gluten, see how you feel. It doesn't have to be permanent in your case. Just be careful if you decide to go the vegan route on top of eliminating gluten. You need to remember you need to keep your vitamin levels up too.
 
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ymikhale

New member
My dd only has CF. She is not strictly speaking on gluten free diet, but the naturopathic doctor that she is seeing to get her nutrition and overall wellbeing right did mention that gluten was not the most desirable thing b/c of inflammation issues that you mentioned. However, he did not eliminate it from the diet, he rather suggested she eat whole bread and bread made of other stuff than wheat: if you are interested, let me know, I can look up the names in English since I don't remember exactly how this stuff was called.
 
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RobinB29

New member
I have Celiacs and CF so I do the GF thing, but I also don't eat dairy or soy cause my body reacts the same way. All I can say is- try it for 2-3 weeks, if it does nothing for you then it does nothing for you and have a donut for me while you celebrate that gluten does love you back :)
Everyone is different, there is no one size fits all diet for CF folks.
 
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RobinB29

New member
Ps- corn pasta is pretty good and brown rice pasta tastes like wheat pasta, Rudi's white bread is good if you wrap it in a paper towel and microwave a slice or two, Enjoy Life makes great cookies and Vans crackers taste just like Wheat Thins :)
 
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Beccamom

New member
I am wondering about Gluten free also. I tried gluten free and at first it seemed to work well as far as decreasing bloating and gas. Then it seemed like the more gluten free products I bought the less effective. In the end avoiding carbs seemed more important then whether or not the carbs had gluten. Do people benefit from gluten free who do not have CFRD or are those that benefit from gluten free CFRD or pre-CFRD.

rmotion said:
I am gluten free and it made all the difference for me.
My theory is most Cf's have a problem with gluten ( like over 50% of the population) with CF though it gets lost in the chaos of all our other problems.
Read This...
http://www.glutensolutions.com/dark-side-of-wheat.html

I am in LA too , pm if you want some help and tips
Click to expand...
 
Simba15

Simba15

Member
Glueten free is recommended for people with CF. I went a step farther: paleo. No dairy, grains, junk food, meat. My intestines and body have thanked me.
Lance2020x said:
I did a search and it doesn't look like there are any topics regarding this...

Where I am in California 'Gluten free' is an extremely hot thing. I've done some research and haven't found a ton of data so have sort of assumed it was a fad and people were feeling a placebo effect or felt better because cutting out gluten changed other parts of their diet and they attributed the better health to being gluten free.

But then I started dating someone who is incredibly healthy, vegan and very focused on eating right.... and she's been recommending I try less gluten as it's supposed to be an inflammatory.
I don't mind trying it, but I LOVE bread (I bake bread every week) so I need a little extra convincing.

Has anybody with CF tried going gluten free? If so did you feel any difference? I feel like we (as CFers) are more aware of what really works on us vs. what is just a placebo... So I'd like to find out.
Click to expand...
 
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Epona

New member
I have been eating gluten free for several years and Paleo for over a year. It has improved my life immensely and I am not a "celiac" though I do have a mild gluten sensitivity. I could go on and on about the science behind gluten sensitivities and why it is CRITICAL for all CFers to be off gluten, but you should just read what I've already wirtten on this subject on my website.

www.cfnaturalhealth.weebly.com
 
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Lance2020x

New member
Okay... I'm not trying to be a stickler, you just have to understand I LOVE baking, am known in friend circles for my breads, and though I eat bread less than you'd think (considering how much I bake it) I LOVE bread....

I DON'T have any gluten sensitivity (that I've ever known of), I don't have celiac, I don't have CFRD, my blood sugar/glucose levels are normal (and I follow my doctors instructions to avoid carbs after 5pm to help keep those glucose levels normal), I already eat healthier than most people (green smoothies, very little dairy/animal products, very little processed or junk foods) and I exercise...

If it would benefit my body I would (with sadness) love to try giving it up. It just looks like everyone who quit gluten did so because they had some good reason to avoid gluten (celiac, CFRD, gluten intolerance) is there any data of the negative effects it has on someone who doesn't have any sort of known gluten intolerance? Or any testimonials?

Simba15 you say gluten free is 'recommended for people with CF', Why? By whom? What benefits did you see when you stopped eating it?
 
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jshet

New member
It sounds like digestive wise, you are doing well and really have no need to avoid gluten. It really sounds like emotionally you are not really wanting to give up gluten either. In your case I would say, I don't blame you.

Because your girlfriend is gluten free, I can understand her wanting to share this with you because she is so excited about it. But I think because you have cf and have given up so much because of your disease, why give up something that us not harming you and that you enjoy? It is just as important that you keep your weight up and one of the only good about cf is getting to eat pretty much anything you want and enjoy it.

In the end the choice is yours. You can always try it out and if not liking it, return back to gluten. Personally, I would enjoy the gluten, lol. You never know if down the road things could change and you would then have no choice but to implement the diet.

keep us posted.
 
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rmotion

New member
There is a gluten sensitivity issue that most suffer from, someone does not need to have celiac to be affected. There is no test for gluten sensitivity. You can take a IGE test (antibodies)and a genetic test for celiac. We also suffer from carb digestion issues, poorly digested carbs give us problems. Oh dont worry CF is really the perfect storm for messing up your GI and everything else that goes with it.
 
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Epona

New member
There are way to be gluten free and still bake. But I understand if there is a strong emotional attachment there. If you have absolutely no digestive issues at all (like zero, absolute perfect digestion, albeit with enzymes) then I'd say it's not super important to go gluten free. Gluten is certainly not helping you and it is for sure harming you in some way, but most likely its negative impact on you is currently small, so at this point in your life you may not need to go off it. But as Jshet said, you may at some point need to go off it if things change. Just to let you know, I did not for a second suspect I was gluten intolerant until I went off it for a period of months and then took it up again. Bad digestive trouble ensued, plus it increases my lung mucus. Gluten has many more physiological effects than just digestive upset, ranging from increased systemic inflammation, arthritis, and autoimmunity to headaches and psychological diseases. I have done much research on the subject, and my conclusion is that, unfortunately, it is not a healthy thing for humans to ingest. For some humans with relatively resilient bodies, it doesn't cause much damage. But very often someone will hit a threshold at some point and then become gluten sensitive later in life, and new disease symptoms manifest.

I'd say if you're going to eat gluten and bread, make sure it is fermented, as in sourdough bread. Sally Fallon's "Nourishing Traditions" is a great resource for more info on this topic.

Oh, also going wheat free might be the first step. You can make bread out of sourdough rye and barley. But if you can't do that, at least cut out modern wheat (all wheat products that do not specify that it is one of the ancient varieties: spelt, einkorn, or kamut). Ancient varieties of wheat are less hybridized, easier to digest, more nutritious, and cause less systemic inflammation.
 
Simba15

Simba15

Member
Lance dont recall where I read it. Many CFers have celiac disease so getting off gluten is a good idea b/c there seems to be some connection between CF/celiac. I don't have celiac but I have tons of it's symptoms. When I stopped eating gluten i didn't have as much gas and bloat.
 
Simba15

Simba15

Member
I just started taking enzymes. Never took them my whole life. I went paleo before and after enzymes. Even on enzymes I won't eat glueten or grains. they both caused GI problems in the past. even if symptoms are gone on enzymes, glueten and grains are irritants for me. doesn't make sense to keep eating irritants.
 
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Tisha

New member
YES! I realized I was gluten intolerant 2 years ago.
A couple weeks ago I attended a fantastic seminary by Dr. Tom O'Bryan, who was touring Sweden. It turns out that current hospital tests only diagnose 1% of the population (those who have total atrophy of the gut lining) while 40-60% of the population have a partial atrophy. Turns out that gluten issues manifest in multiple ways, simply on your "weakest link" - in our case, most often the lungs. For other people it might be kidneys, liver, ADHD, migraines, ostheoporosis, even epilepsy. I have a ton of information, feel free to email me and I'll share. lklemetz@yahoo.es.
Considering EVERYBODY gets gut damage by gluten, and it becomes an actual issue once the gut cannot regenerate (due to excessive stress, antibiotics, etc), I think CF population is at high risk.
There's fantastic talks at http://theglutensummit.com/ (the access package is way worth the value of the 30 conference talks) and there are also links to get tested with the new Cyrex lab tests, which do diagnose ALL the types of gluten intolerance.
Going gluten free has made an enormous difference for me, and I have learned to make delicious bread and cakes with no wheat.
Happy you posted this!
 
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