1 Year Gluten Free - Are You Healthy Yet?

[T.H.]

With the FDA commenting open and discussions everywhere about what is safe and what isn't safe in our gluten-free food, I was wondering: how many of us are healthy on this stupid diet, anyway?

And what are the issues we have when we're on the diet? Are there any at all for most of us, or are most of us completely healthy now?

In part, I think it would help to see what's worth supporting. Are enough celiacs nutritionally deficient that supporting fortified gluten-free products would be worth it? Would supporting more comprehensive allergen laws be good for our community? That sort of thing.

Another reason I think this is valuable to know is basically because I tend to talk to a LOT of people on a daily basis. Celiac Disease comes up frequently, and during these discussions I think it helps to know what's happening in our community, so I can answer questions more intelligently, you know?

Kind of curious what your experience on the road to good health has been, if it was smooth or you had other issues, and what route you took to try and figure out what was wrong, as well, if you care to share in the comments section.

For myself, I'm a celiac who has no health issues if I avoid gluten, but some permanent damage remains from going undiagnosed for so long. I ended up having: food allergies, vitamin deficiencies, a physical condition, and I seem very sensitive to too much trace gluten in my diet.

[GlutenFreeManna]

I wasn't sure what to answer for the poll. I've been gluten-free for 19 months now. For the most part I'm healthy. I have some other intolerances and food allergies. I'm borderline hypothyroid and also have hypoglycemia. I also have some lingering problems that I hope are not permanant. Basically if I eat mostly home cooked food and very few gluten-free products, avoid even the smallest amount of gluten CC and avoid my intolerance/allergy foods I feel good and normal. However getting gltuened sets my entire system back for up to two weeks. My main goals right now are gaining back muscle mass lost while bed-bound, improving my memory, and losing weight (hard when my thyroid is working against me and my dr won't diagnose me and give me meds since it's only borderline). I'm hoping either my body can repair the damage done to my thyroid or that it will get much worse soon (I'm tested every 6 months at this point).

[love2travel]

As far as celiac goes, my antibodies are now in the negative zone from being strictly gluten-free only five months! The number was 71; now it is 3.8 and anything below 7.0 is negative. That is amazing. However, I am nearly 100% certain I am lactose intolerant.

Strangely enough, celiac is the least of my worries. My chronic pain and fibromyalgia and resultant insomnia are far more debilitating and cause me daily agony. If I had to pick just one of my illnesses to deal with I would choose Celiac. If only I could do that!

So, I am working hard to lower my now high cholesterol, lose weight I gained due to inactivity (pain), find out what the heck is making my fibromyalgia worse and try not to be sad about missing my cheese (I used to make my own). I am also trying to find ways to help me sleep. On average I sleep one night a week or so. I would give nearly anything to be able to sleep well.

Another project? Coming up with the best gluten-free bread recipe ever!

[dilettantesteph]

After one year gluten free I still had lots of issues like arthritis, fibromyalgia, insomia, gut pain, etc. I found that when I was more careful to avoid all traces of cc which took me another year of effort, I could be symptom free.

[lucia]

After one year gluten free I still had lots of issues like arthritis, fibromyalgia, insomia, gut pain, etc. I found that when I was more careful to avoid all traces of cc which took me another year of effort, I could be symptom free.

In retrospect, do you think these were all related to gluten? Even fibromyalgia?

(I still have issues after 1 and 1/2 years gluten-free.)

[T.H.]

In retrospect, do you think these were all related to gluten? Even fibromyalgia?

(I still have issues after 1 and 1/2 years gluten-free.)

I don't know about Steph, but many of my own issues turned out to be gluten related that I had no clue were gluten issues at all. Vertigo, insomnia, memory problems, joint pain, carpal tunnel - all went away after i got completely gluten free.

I have two friends now with fibro that have major symptom changes when they are very gluten free. Not all my friends with fibro have this, mind you, but the ones who do notice a HUGE difference.

[Skylark]

I didn't vote because I couldn't check multiple options in the second question. I was doing really well until my thyroid autoimmunity flared. I do still have a healthy stomach/gut, none of the canker sores that plagued me, and I generally feel better. As far as the thyroid trouble I'm looking at everything - nutrition, other intolerances, trace gluten, or just plain bad luck.

[love2travel]

I don't know about Steph, but many of my own issues turned out to be gluten related that I had no clue were gluten issues at all. Vertigo, insomnia, memory problems, joint pain, carpal tunnel - all went away after i got completely gluten free.

I have two friends now with fibro that have major symptom changes when they are very gluten free. Not all my friends with fibro have this, mind you, but the ones who do notice a HUGE difference.

My fibro certainly has NOT improved whatsoever after going gluten-free. According to my recent bloodwork I am now negative (YAY!) so am doing very well avoiding gluten but as I have only been gluten-free six months perhaps I will notice a difference in my fibro later. I sure hope so - it can be debilitating.

[Reba32]

I don't necessarily think that fibromyalgia is linked to gluten, although flares can be more frequent if you are Celiac and continue to eat gluten. Fibromyalgia is another autoimmune disease, which may or may not be alleviated by going gluten-free.

I've been gluten-free now since Dec. 2009, but I'm accumulating some new stuff now, which I believe are un-related to gluten. I'm pretty good at not getting CC'd, but I think the years of damage to my body from undiagnosed Celiac disease is catching up with me. I've no idea what is causing the problems, and so far nor do the doctors I've seen. So I wait for appointments with new doctors.

[lucia]

I'm reading "Figuring out Fibromyalgia" by Ginerva Liptan. It was published in 2011, and is written by an M.D. who has FMS herself.

Research now shows that people with FMS have "leaky gut" (like some with celiac, especially when first diagnosed). That means that foods are slipping through the barrier of the small intestine that otherwise wouldn't. These include foods that cause sensitivities. If someone is celiac/gluten intolerant AND has "leaky gut," eating gluten would then lead to inflammation. Enough to kick off a flare.

Reba32, I don't know if you've considered other food intolerances as the source of your new issues. Dr. Liptan recommends that FMS patients take the ELISA test and eliminate allergens accordingly.

[rosetapper23]

After going gluten free more than seven years ago, it took about 18 months for the daily diarrhea to resolve. My arthritis and muscle/connective tissue problems (e.g., muscle soreness, tendinitis, carpal tunnel) resolved somewhat and finally went away completely after I started taking a ratio of Omega 6s to 3s. I won't get into that, because that's a huge subject that can't be discussed without boring everyone to death. Anyway, after a cc episode, the resulting iron anemia would NOT resolve, and I had to undergo intravenous iron infusions for several years until I developed breast cancer almost five years ago; and, luckily (it was one of the few positives of having cancer treatments), the chemo healed my gut somehow....and my last iron infusion occurred simultaneously with my first chemo treatment. I've never had to even take an iron supplement since then...for the first time since I was 11 years old. After going gluten free, my migraines resolved immediately, and my peripheral neuropathy improved until the chemo ruined my feet again. I did, however, develop Hashimoto's upon conclusion of my chemo treatments four years ago.

That said, I've been cc'd a couple of times in the past few years, and each episode set me back. All I have to say is, don't ever eat at a potluck!!! Anyway, I'm still recovering from two fractured feet that resulted from "floppy tendon syndrome." Of course, no doctor could figure it out, and I was pretty disabled for six months. Finally, I made the connection to tendon health and did some massive research. I took chelated forms of minerals that I may have become deficient in since I was cc'd at a potluck (one month before the fractures occurred), and I got lucky. The pain and difficulty walking began disappearing after only four days on the supplements. Unfortunately, one foot had collapsed by that time, so I'm careful about the shoes I wear. Even so, I can still jog for short distances and occasionally even wear high heels.

Lately, though, I have to report that I feel better than I've ever felt. Some background: Being able to absorb fat-soluble vitamins has always been difficult for me, but after the glutening at the potluck last year, I've had to take massive amounts of Vitamin D for the past year (50,000 IUs daily) and get weekly B12 shots. Also, I'd begun to feel ill after eating ANY grains. So...I decided to do some more research recently. Coincidentally, a friend handed me a copy of "Primal Body, Primal Mind," which turned out to be the BEST book on the topic of nutrition that I've ever read in my life--and, let me tell you, I've read more than a few in my lifetime.

Now that I've followed the recommended diet, which includes no grains except brown rice, and very few fruits, for about six weeks, I've lost close to 15 pounds, have tons of energy, and I'm hopeful that the added saturated fat in the diet is helping me to absorb my vitamins better. I now believe that grains, in general, were responsible for my health problems and that the situation became more dire because I largely at fruits and vegetables and avoided saturated fats. This resulted in my glucose level going up frequently, causing insulin to rush in (which causes fat storage). The diet is also low in dairy and recommends ghee and organic goat kefir. I still eat either raw milk cheese or organic, grass-fed cheese because I can't live without cheese. Anyway, my digestion is the best it's ever been, I have no pains, and I feel "normal" now. One of the best things about the diet, though, is that there is a large community of people who eat this way. They openly invite celiacs to join them because, of course, they don't eat any grains...so it's safe to eat with them (and they seem to understand the cc part). Instead of feeling as though I'm restricting my diet, now I look at all of the foods that I should be eating--and they make me feel great. I don't miss grains at all. I can't recommend this book enough--it truly is the book that has saved my life.

[Judy3]

As far as celiac goes, my antibodies are now in the negative zone from being strictly gluten-free only five months! The number was 71; now it is 3.8 and anything below 7.0 is negative. That is amazing. However, I am nearly 100% certain I am lactose intolerant.

Strangely enough, celiac is the least of my worries. My chronic pain and fibromyalgia and resultant insomnia are far more debilitating and cause me daily agony. If I had to pick just one of my illnesses to deal with I would choose Celiac. If only I could do that!

So, I am working hard to lower my now high cholesterol, lose weight I gained due to inactivity (pain), find out what the heck is making my fibromyalgia worse and try not to be sad about missing my cheese (I used to make my own). I am also trying to find ways to help me sleep. On average I sleep one night a week or so. I would give nearly anything to be able to sleep well.

Another project? Coming up with the best gluten-free bread recipe ever!

Do you drink Diet Soda? I suffered from what was diagnosed as Fibromyalgia 4 years ago and when I got rid of the aspartame (Equal sweetener) from my diet, it went away. Diet soda, gums, any 'diet' food or drink can have it in.. My sleep issues were solved with that also!!

[love2travel]

Do you drink Diet Soda? I suffered from what was diagnosed as Fibromyalgia 4 years ago and when I got rid of the aspartame (Equal sweetener) from my diet, it went away. Diet soda, gums, any 'diet' food or drink can have it in.. My sleep issues were solved with that also!!

My chiro told me to eliminate aspartame and I did so in January and have thus far noticed absolutely no difference. How long did it take for you to notice a difference without aspartame?