GF avenger

Just wanted to pop in and add that my primary symptom of gluten exposure feels like a bladder infection, but may actually be interstitial cystitis that is aggravated by the gluten.

Tips for feeling better quick:

Steep some looseleaf nettle tea for 10 minutes, and drink up. I believe the antihistamine properties make me feel better within an hour. Linden tea is also quite nice.

A hot pad over the lower abdomen is lovely for the spasms. You might also try a castor oil pack, covered by the hot pad. I did this nightly for months, while drinking nettle tea, as I was getting better.

Also, check out Wendy Cohan's The Better Bladder Book, in which she draws a strong connection between gluten and bladder trouble. (Moderator, I'm not trying just to sell her book. She did save me, and my bladder, and the peeps here should know about it.)

You only get one bladder, be nice to it!

gluten-free Jenny,

Though I've never been tested for it, I suspected that I had some mineral deficiencies, and started taking a Magnesium Calcium supplement that seems to help the restless leg thing a bit. It's a reverse of the usual ratio - 800 mg mag, 400 mg cal, and a bit of zinc. I take it just as I get into bed. Magnesium apparently relaxes muscle tissue, and I think both minerals are things we don't absorb well as celiacs...

Hope this helps!

Hiya gang.

Thought I'd return with 9 or so months later with my gluten-free success story, partly in hopes of bolstering those who are struggling with some aspect of their diagnosis (or lack of), and also just to celebrate feeling so much better!

Looking back now I can see so many more things that were wrong with my poor body, beyond the expected digestive upset:

My teeth were falling apart - 3 years after symptoms began, I had 5 cavities. Never in the 28 years previous had I had any! I am a devoted brusher and flosser, so I think malnutrition did it.

I had a strange, small, rash-like lesions on my arms. Not diagnosed, but suspicious, don't you think? All gone now!

When I'd scrape my legs on things like boats, the scrapes would take 5 weeks to heal, and get infected multiple times. Just two weeks ago, I stubbed my toe almost badly enough to need stitches, and it completely healed in a week.

My blood sugar yo-yoed all over the place, and I'd bonk before during after any workout. Now I am even-steven. (Though I've learned to eat lots of small meals.)

I was reactive to every food. Dairy made me, well... gassy, and eggs made me drunk. Some fruits put me to sleep, and we all know what gluten does... Still off the gluten of course, but I can eat EVERYTHING else. Hurray!

Brain fog made reading and studying absolutely impossible, and most conversations inadvertently hilarious, for most of the last 5 years. No longer a problem! w00t!

Fatigue fatigue fatigue. Strangely, this peaked in months 6-8 of being gluten free. Fortunately, I was off work at the time. Now I'm back to teaching at a community college, and am slowly adding more activity back in. Thank God.

I was beginning to wonder if I was menopausal at 30. No longer.

Ah! I have always been super skinny, and found it impossible to gain weight. Now I have a very pleasant layer of fluff.

I'd get horribly sick at least twice a year. I did not get sick ONCE this entire winter. Take that, avian bovine flying pig flu!

When I do get accidentally glutened, I seem to recover much faster.

My poor bladder took most of the hit from gluten, and it's doing much better now, thank you.

I'm so much less of a irritable, depressed wacko than I once was! I sorta feel like I'm coming back to myself, bit by bit, day by day.

Hang in there, all you newbies!! It can be a long journey of learning to be gluten free, and perhaps tracking down additional diagnoses, but you will feel better!

Those of you who have similar stories - would you mind posting them if you have the time? I think we'd all like to hear of other happy endings...

It is really hard to wrap your head around the idea that you'll not ever have a food that so common, again! And the healing process may take longer than you like, but you WILL notice positive changes, almost daily. I'm about 9 months along, and I feel so much better... well worth the aggravation of learning about hidden sources of gluten, finding substitutes, watching other people eat...

Incidentally, the sauce used in spicy tuna may also be a problem, as can the wasabi if it comes from a tube. You've already figured out the unagi sauce issue. You might also be leery of the miso soup. Aside from all that (!!), sushi is a great option.

Keep your chin up, and do try to keep a sense of humor. Sooner or later, your sense that the whole world is made of wheat will cede to the fact that nearly the whole world is gluten intolerant!

Karen,

I don't know if you're in the Pacific Northwest, but there's a great coconut milk based ice cream called Coconut Bliss out here in Oregon, available at Fred Meyer and the like. gluten-free, CF, delicious! My BF is dairy intolerant, I'm gluten intolerant, but this ice cream is not a substitute, it is simply the BEST.

As for eggs, while my gut was healing, eggs would make me drunk. If you have leaky gut due to celiac, you may be experiencing the same thing. Nearly a year after getting off gluten, I can have eggs again.

Good luck!

My BF and I just visited the Bella Cucina on Business 97 in Bend, Oregon. Holy gluten-free menu, Batman!

Despite the lackluster surroundings - the restaurant is in a big box factory outlet kind of strip mall - Bella Cucina has a gluten-free menu par excellence. Nearly everything - including all of the pasta, pizza, bread baskets, etc - can be provided gluten free.

I had my first LASAGNE in 3 years tonight, people! Fab!

We had a great chat with the owner, Chrisalis Stoddard, who was sweet, helpful, and knowledgeable.

Eat without fear, fellow celiacs!

Contact info for your next visit to Central Oregon:

Bella Cucina

61334 SE Highway 97

Bend, OR 97702

(541) 385-7774

They also have a wine and coffee cafe in the Old Mill District.

Ugh, I can so relate!

I was rowing 4-5 days a week, big bike rides 2-3 days, bike commuting 4-5 days, doing massage 4 days and 4 hours/day/week... And running when I felt like it.

Of course, this coupled with some crazy family stress may have set off the celiac.

The best thing I've found to do is to just go with my body - if I'm tired, headachey, feeling anemic, I don't work out.

Right now I'm exercising very lightly - fun hikes, walking around the neighborhood, XC skiing down the street in this crazy snowstorm has been about my speed. I really can't push it without feeling it for a couple days, but I'm glad to say that my energy overall is up, and I'm finally gaining some weight!

I am disappointed that it's taking so long to get back to uber-competitiveness, but I feel in my gut (ha!) that lots of rest, and lots of good food, is exactly what I need.

Hang in there, y'all. Maybe we could form a celiac intramural eating team? The Gut Busters?!

Hi tmb

You seem very well educated on the particular manifestations of your ordeal with gluten, but I thought that I would mention that I saw some marked improvement in my skin immediately after beginning to take a supplement from Vitanica called the IC Blend. I'm assuming that the copious amounts of Vitamin A in it are what made the difference, but I suppose it could have been some of the other ingredients.

Also, I've been taking 4000 IU of Vitamin D daily, and I wonder if that's had an effect on my mood. My energy has been MUCH better since taking an iron supplement - a very recent test indicated that my ferritin level was through the floor.

I know that some docs are reluctant to do lots of testing for fear of "treating only the symptoms", but in my experience it's been very helpful to know precisely which vitamins and nutrients I'm low in so as to speed my recovery process through judicious application of supplements and creating a tailored and pretty fabulous gluten-free diet. Here's to leafy greens!

Hi tmb

Apologies for my glacial response - the holidays, you know... But at least I can provide some perspective on another month + of healing...

The newest thing I'm noticing is that my mood seems to be super even, very resilient. I've had some major stress since the beginning of November, and I'm sailing through it with unusual aplomb, if I do say so myself.

My skin is still dry, but my color is much better (pink, not blue-ish), and the bags under my eyes are less noticeable. Yay!

However, I have been more aware of my nearly constant fatigue. I'm not sure if enough other symptoms resolved enough so that now I'm aware of how tired my bones feel, or if this has come somewhat out of the blue. Regardless, I'm napping a bunch, keeping stress as low as possible, eating a lot of kale... I did recently get a CBC and my white blood cell count was low (indicating recent infection), as was my ferritin. My ND suggested I also test my adrenals, as many of my continuing symptoms seem to indicate insufficiency.

I did sucessfully make it through Thanksgiving without getting glutened, and we are staying home for Christmas - so much less stressful than travelling!

About your question with regards to going wheat, and then gluten-free... Pardon me, have to get on my soapbox...

I had an IgG test in Feb. 2007 that indicated that wheat and (what I've sinced learned are) all gluten containing grains were problematic, along with enough other foods to indicate leaky gut. Unfortunately, my naturopath at the time did not think to check for celiac. I find that there is a very common and insidious belief among naturopaths that gluten intolerance doesn't warrant testing for celiac, and can be healed, allowing the patient to consume gluten in the future. Thus they don't test for celiac when they should, leaving us (me) to do the detective work ourselves, and forever without a definitive test result. (Just can't justify that gluten challenge!) I didn't really understand intolerance or even know what gluten was at that time, and so despite the evidence, I merely got off wheat, assuming that I'd heal up in 6 weeks or so. Ha!

Fast forward 1 year, and I'm still reacting and with increased agony to accidental exposures to wheat/gluten. Now I'm convinced that something is wrong. I go to my primary care physician for the TtG test, and it comes back negative because I've been ingesting so little wheat for a year. Frustrating! In July, however, I finally get lucky and stumble across Wendy Cohan's book, Gluten Free in Portland, and realize that all of the symptoms she's describing are me, positive TtG or not.

At that point, I decided to give up all gluten, including those debatable oats. While I don't seem to react strongly to them at all (whereas with wheat I react within 30 minutes), I had been eating them almost daily since I'd been diagnosed with a 'wheat intolerance', and I certainly wasn't getting any better. I didn't really start to get better until I gave up the oats, but at the same time I also became much more savvy about hidden gluten, so I'm not sure if oats were the problem.

I don't have a hard and fast opinion about gluten free oats, which are increasingly available in this country. My feeling is that I don't quite trust them - perhaps they're doing their dirty deeds silently? I'd be interested to hear what your opinion is.

You have my sympathy for being in a mixed gluten-free and non-gluten-free family. If it weren't for my extremely accomodating partner, I don't know what I'd do. We have a gluten free house, lucky me.

Hello folks

I recently discovered my gluten intolerance (not celiac, was off wheat for too long for the test to be accurate) and have been doing lots of reading. I strongly believe that my mom's family is nearly all symptomatic, and my mom most of all. Last week she was removed from her home and taken to the local psych ward for her latest and greatest yet manic episode, with the hope of adjusting her meds and returning her to her semblance of normal.

The good news is that I've spoken to a doctor there who thought that a gluten free diet might be a good idea, even in the absence of a positive TTG or endoscopy. What I'm asking you all is if you know where or how I might get ahold of good and possibly peer-reviewed research about the non-gastrointestinal effects of gluten, so that I can convince him to keep her on the diet, during and after this latest 'vacation.'

She has a slew of stuff going on - she's bipolar, has MS, lupus, hypothryoid, Reynaud's, previously had breast cancer, etc. She's 58, and has been my 'ward', and living in a rest home for 5 years. The rest of the family is riddled with MS and schizophrenia. Clearly, gluten goes to our brains.

Thanks!

Hi tmb

I don't think I can say for sure what a reliable test of improving health is - other than the obvious relief of symptoms. Wouldn't it be great if healing were that simple and linear?

In my own case, I note that some things get better, then waffle a bit, then get better, then seem to get worse, then get better... I'd say the general trend has been positive since I went completely gluten-free in August of this year (was wheat free since Feb. 07, finally figured out why I wasn't getting better.). It's only been a few months, and I've had just a few, but a few amazing days where the fog cleared, I had amazing energy, and I almost didn't recognize myself.

My set of docs and advisors would tell you that the things which were impacted first will be the last to heal. Your 'weakest link' is the first symptom you noticed, and will likely be the last to resolve.

Specifically for me:

My skin has been dry, itchy and, within the past year, flaky for no apparent reason. Immediately after going gluten-free and starting a vitamin A supplement, my skin improved. Currently, though, I seem to be in a waffly period, with some dryness beginning again - the season change?

My ability to focus on the task at hand is getting better. When all this started, I could barely read a page in a book. Brain fog was bad, and for a 30 year old, my memory was questionable. I generally feel like my brain is coming back on line, slowly.

My body is definitely happier. I have almost no bloating anymore, much less gurgling, almost no digestive upset, no bowel symptoms. I do note, however, that I am sensitive to more foods - I'm not sure if I'm just carefully watching, and thus noting symptoms, or if my poor abused gut has developed problems with a wider range of foods.

Hm, moods... I was also relieved to finally figure out the gluten connection. I think I'm generally a little more level since dropping gluten, but I wonder how much of that was due to roller coaster blood sugar. I'm definitely less irritable.

Finally - my weakest link appears to be my bladder, which has been outrageously susceptible to unusual bacterial infections for the past 3 years, and some of the un-fun symptoms that go along with that. My bladder is no longer so easily irritated, and I think in general things are better there.

Hope this helps! I'd be interested to hear other peoples' processes, too.

Hello again!

Picazzo's had an extensive list of possible ingredients, if you wanted to build your own pizza. My BF is cow-dairy free, and had chevre on his pizza. Their full menu is available on their website...

Open Original Shared Link

I don't see any dairy-free cheese, sorry, Frec.

It's been quite a while, but the last time I was at Piece of Cake they were selling a spelt cake as wheat-free ARGH! Is that no longer the case?

Hiya

I wanted to relate some recent experiences...

Just went to Picazzo's in Sellwood for my birthday - to die for!!! Holy cow, have I missed pizza, with yummy melty cheeeeeeeese. My BF said he thought my gluten-free crust was better than his wheated one. Ha! I asked our waiter to marry me, and he said no. So for all you single gals out there, there's a single waiter who understands your gluten-free concerns, still available.

Also went to Lingonberries in Vancouver for the first time, and was pretty jazzed by all their gluten-free stuff. Please patronize them, they're a tiny store in an ugly strip mall, and could probably use your business. Lots of fun freezer things - cookies, and scones, and more.

Also, last month my BF and I went to Vindalho, an upscale Indian restaurant on SE Clinton and 21st. They do interesting things with lots of alternative flours, and assured us that many of the appetizers (including the onion rings) and the entrees were gluten-free. We'd just gotten back from central Wisconsin and were starved for a good meal - I was bummed out beyond belief to be really sick within about 30 minutes of eating those onion rings. I suspect that CC was to blame... I wrote a long email and never heard back from them, so they're off our list, and the recipients of some bad karma.

Enjoy!

Hiya

I'm wanting to work with a naturopath as I heal from celiac damage - still pretty worn out after a year of wheat-lite, followed by about a month of gluten-free-ness, since I realized that it's probably celiac, and not just wheat intolerance.

Saw an ND yesterday who was recommended by a fellow celiac, and while I think some of her recommendations were solid - lots of vitamins, a few herbs that I've read about enough to be confident in, she also gave me about $80 worth of UNDA homeopathics, and she wants to test me for sensitivities using an EAV machine.

I've not had any notable results with homeopathics, and generally think they might just be a bunch of hooey. And as for the EAV machine, I can only find positive reviews of it on the webpages of practitioners who use it. It sounds like they've been banned in the UK, the FDA isn't a fan, etc.

Has anyone had any good results with either homeopathics or the EAV test? Is there any reason why I should continue to pay for this?

Thanks!

Ben and Jerry's Cherry Garcia - don't do it!!!

Those natural flavorings got me in some serious trouble.

GFG and others -

Out of curiosity - are any of you with UTI trouble IgA deficient? My mom and I are still in the process of being diagnosed, and I've just realized that we probably both have low IgA levels, hence the positive IgG result, and negative TTG.

In any case, just recently I stumbled across a little information about what low IgA levels might mean - not terribly traumatic for most folks, but some folks may be more susceptible to infections in mucous membrane areas - sinusitis, UTIs, etc.

Thought it was interesting given that I've not been able to get rid of a UTI for 2.5 years - and this infection is what led me to the celiac diagnosis...

If you really love snacking on trail mix you should just make your own. Buy each thing seperately and mix it together..that way you know for sure its gluten free. I use raisins, peanuts, almonds, and M+Ms...but you could use any nuts or any candy or whatever you like. (but remember granola is not gluten free its only wheat free)

Ah! But herein lies the question - do you buy the ingredients from bulk bins, and have you had trouble, or are you buying things in packages? I can't imagine that a nut company is labeling their packages of almonds gluten free...

I did make some simple mix for a hike the other day with hazelnuts and raisins. The raisins were sticky in the bin, leading me to believe that they hadn't been dusted with flour, but I had a terrible reaction that night. I haven't been able to parse out whether the raisins were the problem or if it was the really minute amounts of potentially troublesome "natural flavorings" in the worcestershire sauce i mentioned in an earlier post.

Hence my dilemna. Is a packaged product only safe if it says gluten-free on it? Including things like corn tortilla chips, where the ingredients look safe, but the packages doesn't directly state their gluten-y nature?

Somehow I didn't notice that this thread was continuing to lengthen...

I think my struggles with staying on the diet are probably pretty common among the mis- or self-diagnosed. A year and a half ago, when I got the results from the IgG test, I would never have guessed that I reacted to wheat. And my ND, while well intentioned, didn't think to send me for further testing. I went only wheat lite because that's all I thought I reacted to, and I certainly didn't understand that gluten was a larger issue.

The endomysial test I had over a year later (this past March) came up negative probably because I hadn't been eating wheat and further compounded the confusion - perhaps, I thought, some day I'll get over this! It was only by stumbling around on the internet and this site that I finally realized what was going on and starting getting in touch with some celiac-savvy people.

I have not had the gene test, and will probably resist doing so thanks to my wacky insurance.

You can maybe see why I've been thinking that some things were safe - and how I'd be leery of giving them up because they made my life so much easier. However, having recently been nailed by either the 'natural tarragon flavoring' in some non-malt vinegar, the 'spices' in some Trader Joe's mustard, and the 'natural flavorings' in Lea and Perrins Worcestershire sauce - I'm realizing that 1. I'm reacting to smaller amounts than ever before, and 2. that I'd better get strictly gluten-free, like, yesterday.

I hope I didn't come across as cavalier earlier, I'm more perplexed than anything else. But glad as always for this community! Thanks for all your snack suggestions!

Hello helpful folks!

Just wanted to let you know about 2 discoveries I've come across in the last couple days...

First, in response to the tumeric comment - just today the Oregonian published a little blurb about the pain killing and anti-inflammatory qualities of tumeric. A reader wrote that she's used a blend for 5 years with great success with her nerve pain. The blend is called "Solaray Tumeric Special Formula", and it's made from bromelain, boswellia and tumeric.

I don't yet know if that brand is gluten-free - there might be more info at www.peoplespharmacy.com.

Also, a very helpful RN named Wendy Cohan has a recipe for a tummy soothing smoothie, post-glutenization. The base of it is stinging nettle tea - which I used just a couple days ago in the absence of other ingredients, and it did seem to soothe things lots faster than just waiting it out.

I'm equally opposed to letting the gluten stay in my body, but the getting-it-out process is so agonizing and leaves me so drained (and sleep deprived) that I wanted to know what folks were doing to help themselves during and after. So thanks, GFinDC, I hear you.

I know one thing & that is that if you have UTI's there is a food causing it.

Thanks for your thoughts. I've been thinking that I might need to get more serious about this - I know there are a few other things I react to, though obviously not the same way as I do with gluten.

Soy is plenty easy, but I do so love ice cream. Sigh.......

Exactly - as you exercise, your body shunts blood away from your intestines to your muscles. (From here out is my theory) ...thus your intestines don't have such a party with inflammation and self-attacking...

Swimming really really helped me...

Plus it's a mood booster

Rya, I think you're a woman after my own heart. I've often told my massage clients that a little tiny bit of comfortable movement is a better option than not moving at all when they're sore from some sports event or gardening or whatever - and I'm convinced that the circulation is the thing. I'll definitely keep that in mind for future glutenings.

I'm still feeling a little peaked today - but just went for a big walk with my boyfriend that's at least made my head feel a little better.

Thanks for your thoughts.

Once the D stops you might try some light exercise. That helps me with my bloating, even the next day.

Thanks for your replies. The exercise comment is interesting. While I've been healing this summer, I haven't had much energy for my usual intense exercise (and life!) routine - but small amounts have made you feel better?

I noticed on one occasion that walking, when possible between bouts, did seem to speed things up a bit...

I wonder if it's a circulatory issue.

Thanks for all your suggestions.

I'm amused by the idea of a "valid" negative, since I'm convinced my negative blood test was completely false - I hadn't been eating wheat for a year! And I don't have the numbers, unfortunately, so I don't know whether they were just low or nonexistent.

Trail mixes are easy and do form the basis of my snacking diet. I'll happily leave behind the Trader Joe's mixes if I can find a substitute. Any thoughts on buying nuts and dried fruits like raisins? Is it safe to get them from bulk bins? Or do I need to find them in individual packages from some gluten-free source?

hello folks

I've been struggling with a replacing a few potentially contaminated foods, mostly because I'm so dependent on them... I am an athlete and a massage therapist, and I really need easy snacks for between sessions. I've been supplementing with Trader Joe's trail mixes, which are made on "equipment shared with wheat... etc.". In the past, I've relied heavily on Builder Bars, which I've just recently realized contain oats. I'm a big fan of corn chips (don't react to corn), and while I check ingredients, I haven't bought ones that claim to be specifically gluten-free.

I've been wheat free for about 1.5 years, but still don't feel great, and wonder if these little transgressions are why. I don't seem to react to either of these, but I'm worried about the silent nature of a tiny reaction.

My IgGs for wheat are positive, don't have a celiac diagnosis, just know I feel miserable on wheat. This might be one place where _not_ having the diagnosis makes sticking to the diet more challenging.

So - do you all let your gut lead the way - if there's no outright reaction, is a food ok? Am I playing with fire?

And what are you all snacking on?

Thanks!

UTI's got somewhat better when I was mostly wheat free for 10 years. Totally gone when I went gluten-free 4 years ago.

I've definitely noticed a change in the UTI since going wheat free - fewer incidences of painful symptoms, but I'm frustrated that it's still around at all. I wonder if the fatigue has something to do with having to fight off an infection for 2.5 years. I'm also blaming the antibiotics for kicking off the leaky gut/immune system stress/etc. that might have triggered the celiac, so I'm not really interested in treating it via this 'traditional' method.

I was on cranberry for a really long time, didn't seem to do anything. I've recently been doing some reading about interstitial cystitis that suggests that taking cranberry once you have an infection is like throwing gasoline on a fire, with regards to the lining of the bladder. Interesting! Ack!

Mushroom, I'll check out that other post. Have you found any good ways to boost your immune system?