18 replies to this topic

[tylerevelyn]

Hello all!

I've, essentially, diagnosed myself with a gluten intolerance (via elimination diet) and have some concerns about symptom alleviation. I've been gluten free for about 1.5 months, aside from accidentally consuming it once and then again to see if I had a reaction. I definitely did. I know that it can take months for inflammation to go away, and for things to start healing. Right now, I'm having some discomfort in my lower colon area; my naturopathic doctor believes this to be inflammation from the gluten. Anyhow, I'm interested to know, what changed for you after you went gluten free? Did you have more energy? lose weight? gain weight? healthier skin and hair? more regular bowel movements? get rid of depression? any bloating? How long did it take to see changes? What symptoms have not gone away? Did being an un-diagnosed celiac for a long period of time cause any one to have any permanent, un-healable damage or other diseases or syndromes? You guys are a wonderful community, and appreciate all of your advice and shared experiences. Have a blessed day.

[nvsmom]

what changed for you after you went gluten free?
No more stomach aches after eating. No bloat or pain with that. Migraines went from 2 weeks or so a month to a day or two. Less hungry. Hypoglycemic symptoms are less. Hair regrowth. Plantar fascitis (sp) is much less. No leg cramps (not sure if that's related since it was due to an injury).

Did you have more energy?
No.

lose weight? gain weight?
Lost 10-15 pounds in the 2nd to 3rd month.

healthier skin and hair?
Had some hair regrowth. Have spikes of 2 inch long hair all over my head but due to another condition, I went to a month of hair loss so it's thinner again... with 2inch spikes... very attractive. LOL I've noticed no difference in skin.

more regular bowel movements?
No apparent affect on my C but hypothyroidism treatment has helped it a great deal.

get rid of depression?
Had no depression

any bloating? How long did it take to see changes?
Bloat was going within a month and gone after 2 months.

What symptoms have not gone away?
I have ITP, Hashimotos (which is still undertreated) and possibly a connective tissue problem so these could cause my symtopms: hair loss, arthritic like pain in hands, elbows, and shoulders, possible bursitis (AI linked) in shoulder, bad back with sciatic pain, bad knees (basically all my joint pain was completely unaffected - actually had a bad flare-up where it got worse for a month); mouth sores; fatigue; bad skin (pimples no matter how much I wash)which is dry and oily at the same time; and a few other annoyances.

Did being an un-diagnosed celiac for a long period of time cause any one to have any permanent, un-healable damage or other diseases or syndromes?
Possibly, yes. I developed thrombotcytopenia as a young adult where my platelets were killed off by white blood cells in my spleen; it could not be controlled so my spleen was removed. I have Hashimoto's which, in hindsight, I think I've had for a good 15 years. I suspect I could have a connective tissue AI problem like lupus or MCTD or UCTD but the diagnostic process takes FOREVER up here.

Who knows if celiac caused all that but I am positive I've had it my entire life because I had the same stomach issues when I was very small.

[Vicky_1989]

What changed for you after you went gluten free?
Stomach aches are pretty much non-existent, I don't get migraines any more; just the occasion headache. I don't have any hypoglycaemic symptoms - which was actually how I was diagnosed. I don't get indigestion either, which is amazing.

Did you have more energy?
I don't feel 100%, but before I went gluten-free I'd say I felt 20% but I feel about 70% now.

Lose weight? Gain weight?
I had issues with losing weight before I was diagnosed (lost 25 pounds) and I haven't been able to gain any yet, but I've managed to stabilise my weight but I'm still underweight.

Healthier skin and hair?
My skin has cleared up SO much - my skin used to be awful and when I do get contaminated, my face really suffers. My hair doesn't fall out as much either.

More regular bowel movements?
I suffered with diarrhoea before diagnosis and it's only just getting better.

Get rid of depression?
When I first went gluten-free, I was quite depressed as I was having withdrawals but I don't have as many low days any more.

Any bloating? How long did it take to see changes?
I bloat after certain things like milk, but I definitely don't bloat as much as I used to. It took around 1-2 months before I saw any improvement.

What symptoms have not gone away?
Brain fog, agitation (can't keep still), I still have problems getting to sleep because of restless legs and I get night sweats a lot.

Did being an un-diagnosed celiac for a long period of time cause any one to have any permanent, un-healable damage or other diseases or syndromes?
I never had a biopsy so I'm unsure of the damage, but my TTG blood test was still over 2000 (normal 0-10) when it was tested in April 2012, but they've said based on that it's going to take a long time for me to heal. I'm also self-diagnosed with DH, but apart from vitamin deficiency's, I think I've been pretty lucky.

[Janice1014]

I can breath without difficulty. I am newly self-diagnosed but only have symptoms of respiratory distress after consuming gluten/wheat. I feel better without gluten--more energy at least I don't get hit with that all-of-a-sudden-feel-like-I-got-hit-with-a truck tiredness like before. I am struggling right now with how to incorporate this new diet in my life style though.

[shadowicewolf]

if you are having issues breathing, that sounds like an allergy dear :/

at any rate:

Anyhow, I'm interested to know, what changed for you after you went gluten free?

No more random "D" and vomiting!

Did you have more energy?

Took a while to get it back

lose weight? gain weight?

Before dx, I lost about 40lbs in a month. Now, i've lost a few lbs here or there.

healthier skin and hair?

Hair is now thick and my skin is slowly starting to clear up.

more regular bowel movements?

Ummm.... I still have a tendency to get "C"


get rid of depression?

not an issue.

any bloating?

not an issue.

How long did it take to see changes?

the first two major issues a week or so, the rest? months.

What symptoms have not gone away?

I still get abit stressed out at times.

Did being an un-diagnosed celiac for a long period of time cause any one to have any permanent, un-healable damage or other diseases or syndromes?

I developed GERD if that is of any use to ya.

[kittty]

Hello all!

I've, essentially, diagnosed myself with a gluten intolerance (via elimination diet) and have some concerns about symptom alleviation. I've been gluten free for about 1.5 months, aside from accidentally consuming it once and then again to see if I had a reaction. I definitely did. I know that it can take months for inflammation to go away, and for things to start healing. Right now, I'm having some discomfort in my lower colon area; my naturopathic doctor believes this to be inflammation from the gluten. Anyhow, I'm interested to know, what changed for you after you went gluten free? Did you have more energy? lose weight? gain weight? healthier skin and hair? more regular bowel movements? get rid of depression? any bloating? How long did it take to see changes? What symptoms have not gone away? Did being an un-diagnosed celiac for a long period of time cause any one to have any permanent, un-healable damage or other diseases or syndromes? You guys are a wonderful community, and appreciate all of your advice and shared experiences. Have a blessed day.

Did you have more energy?
Yes, but it took a few months before it was really noticeable. I'm at about 60-90% of "normal" energy levels depending on the day.

Lose weight?
Yep! I'm one of the folks who gained a lot of weight with celiac. I started to lose weight consistently around the third month gluten free, and it's still coming off. I've lost over 30lbs, without even trying.

Healthier skin and hair?
I didn't have many problems here, probably because I've been taking birth control pills for years to sort out hormonal issues like that. But, my face is much less puffy and bloated now, which makes my skin look better.

More regular bowel movements?
Yes, most of the time. I still have bad days, with diarrhea and stomach cramps. But - that used to be an everyday occurrence, and now it's just a few days per month.

Get rid of depression?
Depression wasn't a big issue for me, but anxiety sure was. I used to be anxious every single day, but now I just have phases of anxiety if something is stressing me out. It's still a big problem, and it's not going away nearly fast enough. I'm still taking Xanax sporadically.

Any bloating?
Nope, that went away quite quickly.

How long did it take to see changes?
Migraines and most of the diarrhea went away within two weeks. I started to feel MUCH better after three months. I feel better now (over seven months) by comparison, but hopefully in a year from now I'll be feeling even better.

What symptoms have not gone away?
The anxiety This is the hardest symptom to cope with too.

Did being an un-diagnosed celiac for a long period of time cause any one to have any permanent, un-healable damage or other diseases or syndromes?
Fortunately no. Although it's possible that I could need cognitive therapy to help the anxiety go away. It's really turned into a bad complex.

[megsybeth]

I just like to participate but my input is probably not so useful since I'm only a week and a half into gluten-free diet =).

Did you have more energy?
Yes, feel much more alert

Lose weight?
Too early to say

Healthier skin and hair?
Too early to say

More regular bowel movements?
No, going a lot more but I'm only one and a half weeks gluten-free

Get rid of depression?
Feel much more up-beat. I wasn't sad before but felt like I was under water, in a fog. I sort of said, well, that seems like something a depressed person would say but I'm not really sad. Now I feel that cloudy feeling lifted.

Any bloating?
Yes, but early days

How long did it take to see changes?
Mood, alertness and sinus congestion cleared up within days.

What symptoms have not gone away?
Stomach pains and D are worse than before diagnosis, hoping this is part of recovery and regeneration.

Did being an un-diagnosed celiac for a long period of time cause any one to have any permanent, un-healable damage or other diseases or syndromes?
Led to infertility, anovulatory cycles, needed to use clomid to get pg second time and I'm so grateful it was a healthy full term pregnancy considering my health.

[BabsV]

What changed for you after you went gluten free?

Brain fog, dizziness and insomnia started to fade after 3-4 months. Nails and hair growth were noticably better after 4-6 months.

Did you have more energy?

Definitely. I am not back to my old levels (I'm 14 months post-diagnosis) but I can walk the dog without having to go lay on the couch for two hours afterwards.

lose weight? gain weight?

I have managed to put on about 20 lbs which I desperately needed -- I was down to almost 100 lbs and looked skeletal.

healthier skin and hair?

Yep. Skin no longer looks papery, hair is growing and seems shinier, nails are no longer brittle and tearing.

more regular bowel movements?

Didn't have GI symptoms...

get rid of depression?

I didn't have depression but oh man did I have anxiety issues. Those have seriously improved over the last year.

any bloating?

Again, not a symptom I had.

What symptoms have not gone away?

Still anemic...vitamin levels are low although in the 'normal' range. Still not 100% energy-wise...still have pain issues tho those are improving now that I am working with a Celiac-savvy nutritionist. Eliminating corn about a month ago has made a big difference in my pain levels...I seem to be able to tolerate small amounts of corn starch but no corn, corn chips, tortillas, etc.

Did being an un-diagnosed celiac for a long period of time cause any one to have any permanent, un-healable damage or other diseases or syndromes?

Bone scan shows I have a mild case of osteopenia. Could be worse but it's one more thing I now supplement for. That's all I know about at this point but who knows what might crop up in the future!

[amahones]

Hello all!

I've, essentially, diagnosed myself with a gluten intolerance (via elimination diet) and have some concerns about symptom alleviation. I've been gluten free for about 1.5 months, aside from accidentally consuming it once and then again to see if I had a reaction. I definitely did. I know that it can take months for inflammation to go away, and for things to start healing. Right now, I'm having some discomfort in my lower colon area; my naturopathic doctor believes this to be inflammation from the gluten. Anyhow, I'm interested to know, what changed for you after you went gluten free? Did you have more energy? lose weight? gain weight? healthier skin and hair? more regular bowel movements? get rid of depression? any bloating? How long did it take to see changes? What symptoms have not gone away? Did being an un-diagnosed celiac for a long period of time cause any one to have any permanent, un-healable damage or other diseases or syndromes? You guys are a wonderful community, and appreciate all of your advice and shared experiences. Have a blessed day.

Did you have more energy? No, actually. Less.
Did you lose/gain weight? I've stayed mostly consistent, if anything lost a couple pounds. Mostly, I FEEL like I lost weight because I don't have constant bloating and constipation anymore!
Healthier skin/hair No.
More regular bowel movements YES!!!!

It has virtually eliminated bloating and stomach pain. I am now able to go to the bathroom regularly. The changes didn't start to be consistent until about 5 weeks in but immediately, I stopped waking up in the middle of the night with awful stomach pain.

I have less energy before but I suspect that is because I eat less in general. I also have ridges in my nails, but I started taking a multivitamin because it might be nutritional deficiencies causing that. I've only been gluten-free for about two months now.

[SMDBill]

Hello all!

I've, essentially, diagnosed myself with a gluten intolerance (via elimination diet) and have some concerns about symptom alleviation. I've been gluten free for about 1.5 months, aside from accidentally consuming it once and then again to see if I had a reaction. I definitely did. I know that it can take months for inflammation to go away, and for things to start healing. Right now, I'm having some discomfort in my lower colon area; my naturopathic doctor believes this to be inflammation from the gluten. Anyhow, I'm interested to know, what changed for you after you went gluten free? Did you have more energy? lose weight? gain weight? healthier skin and hair? more regular bowel movements? get rid of depression? any bloating? How long did it take to see changes? What symptoms have not gone away? Did being an un-diagnosed celiac for a long period of time cause any one to have any permanent, un-healable damage or other diseases or syndromes? You guys are a wonderful community, and appreciate all of your advice and shared experiences. Have a blessed day.

I'm 6 weeks into being gluten-free.

More energy? Absolutely

Lose weight? 11 lbs so far and not trying besides just eating healthier and stopped consuming so much sugar via sweet tea and coffee. Mostly drinking water and I treat myself to 1 cup of coffee each morning, chocolate milk (lactaid) once per evening and orange juice whenever I want some.

Skin? I had bumps on my feet, psoriasis like itching on my scalp in one spot and really rough heels and elbows. All of it cleared up within a week or two and my heels are almost soft again, elbows are completely soft. Head is free of itching.

Regular? OMG yes. No more D and the occasional C is mostly probably from supplements.

Depression? I wasn't depressed, but my disposition changed for the good. I don't fight much with my wife anymore

Bloating? Only the one time I got glutened and it was horrible

Changes? It took 2 days and I felt like a new person, better than I had felt in more than 10 years.

Symptoms? I do not know of any symptoms that didn't go away. My headaches are gone. I no longer take ibuprofen daily and I haven't had a migraine since going gluten-free. My skin is improved. I had sinus drainage constantly before going gluten-free and I had to clear my throat almost every minute while upright. That's gone but came back when I got glutened. I have energy like I'm 20 years old again. I don't get fatigued as easily. My muscle strength has returned, the tingling in my arms and hands is gone. There are probably more symptoms I'm not recalling, but it's been like a miracle for me being gluten-free.

All the horror stories of people saying how hard it is to be gluten-free just haven't materialized. Sure, I gave up a ton and I can attest to the "celiac sucks" claims. I want bread, grains and other products of grains, but I know how it feels when I do. I refuse. I changed my diet, I eat better than ever in my life, I take supplements to get what I'm missing and I feel great as a result. My body tells me how it's doing and I just keep feeding it. I'm losing weight the right way by eating healthy food and burning more than I take in. I feel so good and I'm blessed to have answers to years of problems. I see food as a challenge I can overcome and I refuse to give in to temptations of foods like pizza or cookies. I find alternatives without gluten when I have urges or I find something else to help settle those urges. I'm not perfect, but I'm winning! (Wow, almost sounded like Charlie Sheen!! haha)

Best of luck to you...and many days without gluten!

[tripfecta]

I went gluten free around mid-July. I've been keeping a journal of improvements for the last two months. The majority of my symptoms are now gone.

Gluten-free one month (August 2012)
Improvements:
night sweats are gone
Less intestinal issues, gas, and stomach gurgling
Rash on corners of mouth are gone (occasionally still itches around my lips)
Rash under right eye is getting better
Noticing less hair in the shower
Noticing a little more energy
Sleeping better at night
Tingling in arms (mainly) and legs are gone
Chest pain (left breast area) is less, but not gone

Downers:
Irritable (comes and goes)
Constantly hungry
Still occasionally wake up with a racing heart at night
Still have some intestinal discomfort and D

**added probiotics and B complex supplements in mid-August
**added digestive enzymes at the end of August
- accidentally glutened on our anniversary dinner and mouth rash and intestinal issues made a reappearance.



Gluten-free month 2 (Sept 2012)

Improvements:
Less painful periods (still heavy flow) - little to no cramping, didn't even have to take Advil
Not constantly hungry - feel satiated longer
No hip pain (was on right side when trying to sleep)
Lips are no longer chapped all the time
No more dryness and cracking on heels of feet

[gatita]

Wow, great thread, these posts give me hope. SMDBill, your results are amazing!

I've been 3 months gluten-free and, sadly, have not had one of those miraculous recoveries when it comes to GI issues (severe D). It's not as horrible as it was in June, but it's not gone either. The longest I've been without D is 4-5 days. Still checking out other intolerances & cross-contamination possibilities. Bloating is still a big problem, but at least it comes and goes now.

That said, this thread made me think about other symptoms.

Joint pain, tingling in hands and feet: Almost gone

Itchy spots on scalp and back: slowly healing (very slowly), but some new itchy areas have appeared elsewhere.

Gums: it appears early gum disease may have reversed itself! Wow...

Right lower rib pain: (I forget what it's called) totally gone

Sciatica: still here, and annoying
<p>Weight: gained a lot in the months before my severe%2

[CeliacShack]

I went gluten-free after my diagnosis in late June, so I'm still fairly new, but I have had some changes.

what changed for you after you went gluten free?

- For a long, long time, I have had this constant pain in my left heel. I though I had possibly broken it, but after going gluten-free, it went away. It comes back whenever I have accidently been glutened, and sticks around for awhile. I had other joint pain all over, and an awful bout with sciatica. Those are mostly gone. I had horribly "D", and that went away to some extent, and is improving month by month, as I get better at discovering the hidden gluten I was still getting. (For example, my black pepper and other spices could have had traces) I have only had one or two migranes total since going gluten-free, after having them at least once or twice a month, sometimes more. My brain is much less foggy and I'm generally in a better mood.


Did you have more energy?

- In general, yes. For the first few months, I was still exhausted almost constantly, and would only occasionally have a "good day". For the past three weeks, I have finally seen my energy coming back, bit by bit. I still have bad days, but they are less now.


lose weight? gain weight?

Last time I checked, I had lost about 15 - 20lbs.

healthier skin and hair?

My hair has been falling out, a lot, I'm hoping that will improve soon. My skin has a healthier look to it now. I always looked sickly and pale when I was at my worst. When I have gotten glutened, I look terrible.


more regular bowel movements?

Yes, after going gluten-free, I had "normal" bowel movements for the first time in months. Again, good days and bad days.

get rid of depression?

Yes, much improved.

any bloating? How long did it take to see changes?

Overall, getting better. Good days/bad days.

What symptoms have not gone away?

Still very tired a lot of days, it's still hard for me to exert myself too much, or my body will tremble. I still get my symptoms now and then,... but it's all getting more tolerable. I'm trying to be patient and allow my body to heal.

Did being an un-diagnosed celiac for a long period of time cause any one to have any permanent, un-healable damage or other diseases or syndromes?

- I'm not far enough out to determine that yet. I do have PCOS, (Polycycstic Ovarian Syndrome) which a lot of other celiac women seem to have as well, and insulin sensitivity. I developed severe carpal tunnel in both hands, at a pretty early age. I have had surgery on one, the other needs it as well. My body has been put through a lot, and my weight has gone up and down numerous times.

[CeliacShack]

I am amazed at how I discover new things every time I come to this forum! Someone mentioned dry heels and elbows, that are now getting softer. I never attributed that to celiac, but yes, mine are softer now too. I always had a lot of trouble with my heels, and now they are fine. Amazing what gluten can do to your body.

[slee11211]

I went probably 30+ yrs undiagnosed. Different times of extreme stress and then having a baby brought it on hard. When I first found out and eliminated all gluten, I noticed an increase in energy and stomach issues lessened a bit. But I didn't get a ton of relief with thyroid issue, itchy skin, carb cravings, etc. So after a year, I read some articles that introduced idea that there are glutens in other grains (like out of the 18 varieties of quinoa you'll find without labels as to which they are, 3 of them get a gluten response from celiacs). That was all I needed to hear and went completely Paleo. Since then, all my extra weight dropped off, my stomach flattened out and my entire body is "firming up"...it's not a fitness thing, I'm probably doing less now than before. It's a healing thing, everything just feels more stable and strong. I am not having issues with carb/sugar craving, I'm not having any stomach or digestive issues, no more crippling GERD (that didn't go away with just traditional gluten free), no more sinus issues, and best of all, my immune system is stronger. So there is a LOT to look forward to...be patient, and keep researching to see what's right for you. Everyone reacts to this differently (we are all completely different chemistry sets!), so you have to find the parameters that work for you! Good luck in your journey..