Gluten Free But Don't Have To Be?

[chrissy]

just wondering if any of you are non-celiac, but gluten free? meaning, i guess, that you wnet gluten free for other reasons. i don't have celiac, nor does my husband, but obviously one or both of us carry the gene since several of our children have celiac. i have had depression for so many years and have had bouts with anxiety and panic attacks. i have also had fibromyalgia for a number of years---got really bad after a hysterectomy last fall. i have considered going gluten free with my kids to see if maybe it might help me get well. i take alot of meds and would like to be off at least some of them! can anyone share their experiences with me?

christine

[tarnalberry]

I don't have celiac, in the sense that I haven't had a positive biopsy. But I've never had a biopsy. I had a positive anti-reticulin IgA, which is only fairly loosely related to celiac, and my antigliandin IgG, EMA and tTg tests were all negative, but I had a positive response to the diet, so I stay gluten free. It is ABSOLUTELY worth trying, for at least a month.

[Felidae]

I have not had a biopsy either and my blood tests were negative. I have however, had a positive result to going gluten-free. I used to be very sick with D every day. I had anxiety and worried all the time which I do not do anymore. My hair was thinning and turning grey but now it is thickening and I have not seen any new grey strands. (I know turning grey has to do with genetics, but really it has stopped for now.) I rarely have migraines anymore. My weight is completely stable. My gums are not receding any farther.

I went gluten-free in the hopes of not having D and the other positive results I have got from this diet were completely unexpected. I can't blame the placebo effect because I had no idea it would have changed so many other aspects of my life. It can't hurt you to try it and you may be suprised at the results.

I should add that my doctor is completely satisfied and I think a bit suprised at my health improvements.

[Nancym]

Definitely! I'm not celiac status either, but I'm most assuredly gluten intolerant. I think it has been responsible for some of my autoimmune issues (thyroid, now Lupus - pretty sure). I'm off both gluten and dairy and my energy is coming back a bit. I think Dr. Fine (www.enterolab.com) has some wonderful info out there for folks like us.

People like us are falling through the cracks for diagnosis. We're not sick enough from the gluten to get told we can't have it. I think the intolerance keeps us addicted too. Its a tough master to beat.

[StrongerToday]

My blood tests came back "perfectly normal", but I'm having positive dietary response being gluten free and dairy free. I used to have D daily, enormous stomach pains (like I was digesting glass), brain fog and I was very achey a lot. The best way for me to describe it was it was like just starting the flu, but almost every day. That's no way to be!!

While the diet is very challenging, and I am hoping to reintroduce dairy soon, it has definitely made an improvement in my health.

[nikki-uk]

I'm not a coeliac,It's my choice I'm gluten-free.

In fact my husband's the coeliac.

I went gluten-free(initially) to support him and to make meal times easier.

I discovered that my lifelong complaint of eczema cleared up dramatically.

Unfortunately, I don't get to cheat though-whenever I have any gluten I go hot and feel sick ,palpitations,and get a tingling on my tongue(as well as a skin flare up)

I'm not really sure why,but it tells me that there's something in gluten that my body doesn't like

I've been gluten-free 8 months now (gosh has it been that long),and can honestly say I don't miss gluten.

We as a family eat so much more healthily now since hubbies dx of celiac disease.

There's plenty of yummy gluten-free foods out there for me!

The downside?-it's a pain eating out.

You feel like a malingerer,always asking for gluten-free,but no medical reason to be so.

Ah well....

[jerseyangel]

Nikki--That's interesting that you get those symptoms from eating gluten even though you made the choice to go gluten-free . It adds creadence to the theory that wheat isn't good for anyone. After reading Dangerous Grains, I believe that to be true--some people (probably a small %) don't react at all and a much larger % have symptoms that they don't attribute to gluten.

[bluesky8130]

I went gluten-free to support my hubby & make meal time easier too. I have found that since being gluten-free, I am feeling so much better.

Every once in a while I will have some non gluten-free bread and see to feel sick afterwards. I think I'm getting sympothy pains for him.

[ravenwoodglass]

i have had depression for so many years and have had bouts with anxiety and panic attacks. i have also had fibromyalgia for a number of years---got really bad after a hysterectomy last fall. i have considered going gluten free with my kids to see if maybe it might help me get well. i take alot of meds and would like to be off at least some of them! can anyone share their experiences with me?

christine

Your symptoms are very similar to the ones I suffered from for 30 years, then the tummy stuff hit. It was 15 more years of misery, including 5 totally disabled, before my celiac was discovered. I did not show up in blood work but that did not mean I was not gluten intolerent since early childhood. Personally I would make your home gluten free. I bet you'll find your fibro and depression get a lot better, plus you won't risk contamination of the kids.

[penguin]

just wondering if any of you are non-celiac, but gluten free? meaning, i guess, that you wnet gluten free for other reasons. i don't have celiac, nor does my husband, but obviously one or both of us carry the gene since several of our children have celiac.

Personally, I would go gluten-free because I'm lazy, and wouldn't want to keep up with both gluten-free/non gluten-free things in the house all of the time.

It will probably make it easier for your kids to grow up in a gluten-free home and have parents to look up to when eating out or otherwise being gluten-free outside of the house. That way, when they grow up, it'll be natural for their homes to be gluten-free, too.

And if it makes you feel better, BONUS!

[WGibs]

Like Tiffany, I don't have celiac because I never had a biopsy. I had a high AGA IgG, but normal AGA IgA and tTg. I felt so sick with D and gas every day, so I decided to try going gluten free. I had such a positive dietary response, I am 99% sure that I have gluten intolerance. Who knows, maybe my biopsy would have been positive. At the time I felt too sick to fight the doctor (who was telling me there was nothing wrong) and going gluten-free was the thing I could do without her permission.

I would give it a try -- I really don't miss gluten at all in my everyday life. I wish I could comfortably eat out more, but maybe in time.

Forgot to add...My grandmother has been diagnosed with lupus, scleroderma, and osteoporosis, all of which are associated with untreated celiac. she such a mess they don't even try to label her problems anymore, but just say she has autoimmune disorder generally. I don't want to go down that path.

[Guest Robbin]

Definitely, I have fibromyalgia, too and am in the "fussing with dr" stage of the celiac dx, but, with the exception of "accidental glutens" I have been feeling better with the fibro. The hard painful lumps and tender points are getting better, and the chronic diar. has stopped. Just to feel like there is something you can do to feel better from the fibro is way worth it, even if I hadn't had the stomach/intestinal problems, I am glad the fibro is better and would still do it. The brain-fog is much improved as well. Good luck and I hope you feel better soon.

[Clarise49]

I am also not a celiac. I just had blood work done never a biopsy. But I have been gluten free for almost 3 years and dairy free for about 2 and a half. I feel much better now and prefer the gluten free diet. I am having a biopsy done in March to be certain about everything. I am gluten free because it makes me feel better.

[zip2play]

I was not confirmed a celiac. My blood test came back a little high (I don't know which one) but my biopsy was clear. I was sick and tired of being SICK and TIRED! I had D almost daily and gas and bloating that so bad that I bought my jeans 1 size bigger than what I am. I went gluten free on 01-09-06 and there's no turning back for me. I don't have to be as particular at restaurants and such, but we rarely go out. I stay gluten free. I feel good and so much better than I did, no one can aruge with those results!

Monica

[Fiddle-Faddle]

Gee, I guess I'm in this category, too!

My IgG was very high, but my IgA was normal. I asked for the bloodwork because I thought my horrible rash looked like the pictures of Dermatitis Herpetiformus that I saw on the Internet, which was also the reason I stopped eating gluten. Within 2 weeks of eliminating gluten, I lost 10 pounds and realized that I'd had mild bloating and cramping for ages that I hadn't noticed-- til it went away!

I haven't completely eliminated gluten for my family, but I've drastically lowered it (they can have whatever they want for lunch) , and my 7-year-old's chronic eczema has almost completely disappeared. The only thing with the eczema is, he originally got it as an infant right after getting shots--and he was exclusively breastfeeding at the time (and for the next 8 months after that, too). I went off both gluten and casein at the time just in case it was something in my diet that was exacerbating it, with no results whatsoever.

I still don't understand why my IgA isn't high if my IgG is. My husband is a PhD chemist, and he can't explain it, either.

[jflow]

just wondering if any of you are non-celiac, but gluten free? meaning, i guess, that you wnet gluten free for other reasons. i don't have celiac, nor does my husband, but obviously one or both of us carry the gene since several of our children have celiac. i have had depression for so many years and have had bouts with anxiety and panic attacks. i have also had fibromyalgia for a number of years---got really bad after a hysterectomy last fall. i have considered going gluten free with my kids to see if maybe it might help me get well. i take alot of meds and would like to be off at least some of them! can anyone share their experiences with me?

christine

Hi

I am Gluten Free by Choice for th emost part, I am so for my husband who is Celiac, but I've quite enjoyed the lifestyle. It has made me be more efficient for overall health reasons, and I can say honestly, that more people should opt for this dietary lifestyle on their own. Even healthy people with no food allergies.

My daughter too, who is not Celiac eats gluten-free at home, and I am proud to say that she is probably more healthy than people who choose McDonalds to feed thir kids. Personally, I feel like that is poison to kids. Besides the Gluten, the fat, the carbs, the grease, the environment, etc.

-JF

[francelajoie]

I was not confirmed a celiac. My blood test came back a little high (I don't know which one) but my biopsy was clear. I was sick and tired of being SICK and TIRED! I had D almost daily and gas and bloating that so bad that I bought my jeans 1 size bigger than what I am. I went gluten free on 01-09-06 and there's no turning back for me. I don't have to be as particular at restaurants and such, but we rarely go out. I stay gluten free. I feel good and so much better than I did, no one can aruge with those results!

Monica

I'm in the same boat as you Monica. Blood tests were a little high (doctor didn't give me any details). She told me to avoid wheat, barley, and rye and I did exactly that. No more gas, bloating, or D. I don't get as particular in restaurants either. I do always ask what their food is homeade or processed. Example, I would order homeade mashed potatoes but never the processed ones. I always check to see if they have a gluten free menu, if not...I order a steak and veggies or something. I've been gluten free since June of last year and have not had D or bloating since then. A little gas here and there, but doesn't everybody

[Ursa Major]

I also wasn't diagnosed by biopsy, or even blood tests. I've had aches all over all my life, even as a small child, was thin as a stick, with awful back aches and depression from the age of seven, alternating diarrhea and constipation. Then, when I was pregnant with my first daughter, I was starting to gain weight, and was gaining and gaining until last summer. I was diagnosed with fibro a few years ago, and was put on codeine 24 hours a day four years ago, because I was in so much pain that I was completely disabled.

Last summer I finally (after starting a bowel cleanse) got chronic diarrhea, and got so sick that from May to October I spent more time in bed (and on the toilet) than out. At the beginning of October I finally figured out that gluten was a huge problem. I started on a gluten-free diet that same day. The diarrhea stopped by the following day, the backaches got significantly better the day after that, and I was off codeine within two weeks.

In the meantime I figured out more food intolerances. But as long as I stay away from all the many foods that cause a problem, I am almost pain free. I have more energy, I am losing weight (this far I have lost 25 pounds) and I have no intentions of EVER going back to eating gluten.

My mother had all the same symptoms as me, and was labelled a hypochondriac, too, and was given valium to 'calm her nerves' (of course, it was all in her head), and heart medication (I don't think there was anything wrong with her heart, she was having the same crazy palpitations and heart racing I used to get) for over forty years. She had a heart attack when she was 65, and died of liver cancer at 66. Her mother died of stomach cancer. Coincidence? I don't think so.