Lynayah

I just wish they would get some decent eateries to open so my husbaand and I could enjoy a night out. We have one rest. by us and we talked to the chef and he wont alter the food to make it eatible for celiacs, Well needless to say they wont get our business. It's something as simple as a baked chicken--he wont bake it without the flour seasoned coating---CRAZY!!!!

Restaurants: I know what you mean. Some won't budge.

Yet, I find it amazing how helpful some restaurants can be if you call and speak with a manger first -- not the chef but the owner or top manager in charge (the ones who have to deal with libility).

It is interesting that some restaurants I would never have assumed would be helpful have indeed been very helpful.

A couple weeks ago, my husband and I went to a moderately-priced buffet (Golden Corral). I called and spoke with the head manager who was so incredibly kind! He listened to me, REALLY listened, and he promised me he would prepare a freshly butchered slice of sirloin steak on a dedicated grill, with no marinade or spices added whatsoever. And this was in a restaurant where they didn't even know what gluten-intolorance was until I spoke with them!

Other managers at other restaurants have been equally wonderful in telling me that, while they cannot guarantee that any food won't be cross-contaminated, I am welcome to bring my own food. This allows me to attend dining parties or club meetings with no problem, and with no burden on those booking the restaurant.

I guess the bottom line is to keep calling, keep trying. If enough restaurants get enough calls, they'll start to listen.

In fact, I think I'm going to start a thread about this. I'll post the link once it is up.

Hugs,

Lyn

Does anyone here suffer back pain or hip pain when gluttened?

Probably not what you want to hear but dairy can bother celiacs until there digestive system has repaired. If you find you just can't stop the dairy you could try taking a Lactaid to see it that helps. Lactaid is a brand name but most drug stores carry a store brand which worked for me. No prescription needed.

I did this when I first went gluten free. I just couldn't bear giving up more food items at one time. I did go dairy free for several months once I figured out the gluten free foods. Now I'm able to tolerate dairy products without problems.

It is worth the trouble. I found I couldn't tolerate dairy, soy or pork before going gluten free. Now pork is the only thing that bothers me. It's not always but some pork meat produces gluten symptoms now still.

That's interesting about dairy! I did not know that it might be difficult to digest at first but later get better (unless intolerant to milk, of course). Thank you.

Just to add to the thread, I am just now (thanks to this forum) learning that there are some folks who have a difficult time handling MANY gluten-free carbs and who must follow what is called a Specific Carbohydrate Diet https://www.celiac.com/gluten-free/index.ph...=62006&st=0.

So much to learn, here!

Okay, I don't know how else to ask this question without getting too "Augh, GROSS!", but I'll do my best . . .

I have recently been diagnosed as a highly gluten sensitive non-Celiac. All the results for a definitive diagnosis of Celiac were inconclusive until my last test - the gene test -- came back negative.

My question is: Can pre-diagnosis non-Celiac bowel movements be the same as Celiac bowel movements?

Mine (when they weren't full blown diarrhea) were either small and hard or large, kinda fluffy, light in color -- most all of the varieties floated. I thought this was only supposed to happen when your body is not absorbing nutrients properly and the fat passes through? Yet, if I do not have Celiac, my body shouldn't have been rejecting nutrients, yes? No? I'm so confused.

I have been gluten-free for a few weeks now, and finally my bowels have already become more normal -- darker and they do not float.

Yes, I know I need to ask the doctor, and I plan to on my next visit in November. In the meantime, any thoughts from friends here would be most appreciated.

Thanks for letting me give you the straight poop on this!

Thank you for all the posts here!

You'll find the thread under "Other Food Intolerance and Leaky Gut Issues". It's called Specific Carbohydrate Diet (SCD). If you read parts of it, they do recommend web sites and books. I haven't read the books yet but have looked at some of the sites. It's good. I'll defer to the SCD experts on that thread.

THANK YOU, THANK YOU!

Hugs,

Lyn

When I am unsure, I eat whole foods only and keep a diary (as suggested earlier). By whole foods, I mean meat, fruits, veggies and brown rice or another gluten-free whole grain or legume (red kidney beans work best for me), and that's it.

I slowly add one food at a time -- no more than one every other day, and I watch and see.

Some folks are sensitive to starches legumes, so you might want to add these later and see.

It's hard, I know, I know. Sending a hug.

PS: I tried to find the thread about SCD but the search function wasn't working for me. Might you post the link? Thank you so very much.

PS: Are tomatoes a nightshade?

Hey, I'm glad to support you and I totally understand being given drug after drug. I don't want to treat symptoms, I want to find the root problem and reverse it!

I wanted to mention several things to you that I have read from other posters regarding the pain of inflammation. I already mentioned that much of my pain was related to eating grains and many others here have said the same. Many have found relief in the SCD and there is a long thread in the forum discussing it. I'm not completely on the diet but I have gained a lot of insight from reading that thread. Others have found relief from adding Vitamin D3, magnesium and the methyl type of sublingual B12 to their diet. I also take those and they are a huge help. Stay off your meat products for now but later when you are better, you could challenge those. You may be able to eat some again. But that is down the road.

I don't remember if you said you are off dairy, but you should also avoid that for now. Others that are sensitive to nightshades report pain from them. You will have to experiment with that one. Nightshades are potatoes, peppers and eggplant. Don't forget paprika which is from a pepper.

I'm not saying all these are your problem. I'm saying they might be. Start on a very simple whole food diet that you prepare yourself. Stay away from prepared or processed foods. Research all you meds and make sure they do not have gluten or dairy fillers. Start at a low dose of magnesium and work your way up to about 600 mg's. I take more but you have to find the level that works for you. Soak in epsom salt (magnesium) baths for pain relief.

I know you can do this. You are going to be your new dr! Keep a food journal, write down everything you eat, drink or supplement. Note your reactions and pain levels. This can be very helpful to pinpoint food problems. Find a glue that does not have gluten and get rid of everything, EVERYTHING around you that has gluten. This is your new birthday.

Ang1e: What books are available on SCD? What would you recommend? Thank you!

I have my results and am writing to thank everyone again. My doctor ordered more tests, including a gene test.

My Gliadin IgG is very high and I definitely have gluten sensitivity, or intolorance -- whichever you wish to call it.

My biopsy and gene test came back okay, so it is not Celiac.

Because I am highly sensitive to gluten (now that I'm back to eating gluten-free, I see how just a crumb makes me very sick), I still plan on eating gluten-free, and I definitely plan on being a strong advocate for Celiac research, etc.

I am feeling better day by day. The doctor says it may take 6 months or so before I feel fully healed, even though I do not have Celiac.

Thank you all so much for being there and for caring! See you around the boards!

I haven't been, but I would love to hear how your appt. went, if you wouldn't mind

Hi, mom26boys:

I have my results and am writing as promised. My Gliadin IgG is very high and I definitely have gluten sensitivity, or intolorance -- whichever you wish to call it.

My biopsy and gene test came back okay, so it is not Celiac.

So, while I an highly sensitive to gluten and still plan on eating gluten-free, I do not have an auto-immune disorder.

Thank you so much for caring!

Warmest regards,

Lyn

Muffy, where do you live? Are you anywhere near a teaching hospital or a state-of-the-art facility? If there's one thing life has taught me, it is not to mess around with any health care provider who doesn't have expertise in what I suspect may be my problem.

Case in point:

I didn't find out about my Vit. D deficiency until I went to a rhumatologist associated with a teaching hospital.

I didn't find out about my gluten-intolorance (possibly celiac, waiting on more results now) until I went to the Celiac Center at University of Chicago.

Go for the gold. You're worth it.

Hi I'm new here. I just came across this thread. I'm pretty much a mess & am getting more crippled all the time. The pain in my feet & hands is peripheal neuropathy we think was brought on by this gluten intolerance along with meat allergies. The pain is there everyday & as of 2 yrs. ago, what started out as short flareups has gone into high gear with flareups that stay put and don't let up.

I think they call it gluten neuropahty. I still am not on a 100% gluten free meat free diet so I'm getting crippled from all this. When I eat meat or pork of any kind the pain is in the the big toes. When I eat the gluten the pain is in the entire foot. It started in my feet 7 yrs ago & last year it moved to the hands.

And what I've learned here is its going to get worse before it improves if it improves at all. Know now I'm gonna have to be in for the long haul. I tell ya I been on 2 yrs. of trying different pain meds & different treatments, nothing has worked at all. Doc says its a severe case.

I'm 51 & this way of living is horrible. This thing stopped me dead in my tracks.

Has your doctor tested your blood for any vitamin deficiencies? I was a horrible mess last year, very weak and in a lot of pain. It turned out that I had a chronic Vitamin D deficiency -- almost no D in my body at all.

Be careful with this and do not diagnose on your own. Deficiencies call for monitored mega-doses which can be dangerous if not analyzed regularly. There is an interesting thread on D at Open Original Shared Link

I had foot pain when I first got out of bed for years before being diagnosed. It was so bad walking down my four steps from my bedroom were excruciating! When I did my gluten challenge, it came back with a vengeance. Now I only get it when I am inadvertently glutened. For me it seems to dissapate with a lot water - I seem to need ridiculous amounts of water if glutened.

That's interesting about the water. How much do you drink when you've been glutened? How do you know when you've had enough?

My feet were so tender and painful I couldn't go barefoot for the last year or more before I went gluten-free. I wore soft leather, rubber soled shoes all the time and didn't take them off until I was getting into bed.

My brother had the same problem.

I have been gluten free since April 08, and it took a few months to see a big change. I rarely get any foot pain now - sometimes it flares if I get gluten by cross-contamination.

And I can wear my heels again!

Good luck - and give it time!

erin

Thank you so much for posting this. I hope we hear from more.

I have been gluten-free for only a week and am already seeing improvement in my feet and ankles. THANK YOU!

Does anyone else have the same problems? Please add to this thread.

Has anyone here suffered from foot pain that improved once going gluten free? What were your symptoms and how long did it take to improve?

To add to my question: For me, specifically, the tops of my feet hurt and are more prone to swell.

Anyone else?

I haven't been, but I would love to hear how your appt. went, if you wouldn't mind

How nice of you to ask!

I'm still waiting on the results -- I should have them maybe as soon as tomorrow, and I'll let you know.

Much appreciated,

Lee

Thank you to everyone here -- tests are done and I'll have the results next week. I made it through the weekend with appreciation for all of you.

Has anyone here suffered from foot pain that improved once going gluten free? What were your symptoms and how long did it take to improve?

hi,

this would be my first post on the forum,

it was a visit to a doctor in late 2008 that he considered the possibility of gluten intolerance based on symptoms and also, following a thorough blood test, determining that my body was fighting something, but i can't be too sure of the details now.

anyway, i have been pretty good about avoiding direct ingestion of gluten/wheat by avoiding bread, wheat flour products etc.

occasionally i have minor symptoms as a result of soy sauce ingestion which results in a bloated feeling or, at most, head pressure.

in the last month or so i have had recurring issues with Sinus.. i'm not sure if it is a development of Chronic Sinusitis (particularly as a result of cold weather), in the same way that the symptoms of Gluten issues developed over time.. i have been using a nostril spray to clear the Sinus but it doesn't always help.. i'm considering looking into over the counter medicines and also other alternatives to relieve it.. side from the head/face pressure, nostrils are also blocked which gives me a very 'stuffy' feeling

if i digest wheat directly by eating bread or pasta without checking the ingredients properly, as i stupidly did a few weeks ago, then the symptoms are much more serious, which is the pressure in my face and head (Sinus), bloating, and the other recurrent symptom i get is muscular pain, especially in my rib areas, sometimes alternating sides.. this is the main symptom which i went to see my doctor about that he suggested the gluten intolerance as a response to.. these symptoms may start anywhere from immediately to almost a day after ingestion and take anywhere between about 2 weeks to a month to recover from.

the way i treat the symptoms in the meantime is to drink peppermint tea, take the aforementioned spray for the sinus, take a laxative or IBS related medication (i.e for abdominal blaoting, cramps etc) in the event of serious indigestion, and i use heat plaster/bandages for the muscle pain which gives invaluable relief especially when i am going out

apologies for the long post but please accept these message also as an informal introduction about my own case with gluten intolerance/coeliac

regards,

Ben

Welcome to the forum, Ben. Before you know it, you'll be posting like crazy.

Are you seeking further medical advice? Not sure, but it sounds as though you may need to talk to someone who knows enough about Celiac and gluten-intolorance to really help you.

Also, it really helped me when I went to the library and read books about Celiac and gluten-free. I was eating a lot of foods that had gluten, and I didn't know it. Soy sauce being one of them. It sounds as though you've figured that one out (better than I did!), but there is so very much to learn.

It took me forever before I went to a doc that specialized in Celiac, and I wish like heck I had gone sooner.

Hi Lynayah,

I also used to get chronic sinus infections and when I get glutened I feel pressure in my sinuses again.

I also get joint pain and my tendonitis acts up (knees & achilles teondons).

I've seen others mention sinus problems when glutened (or pre-dx) so perhaps there is a link! Worth checking out.

Jillian

Just wanted to say again: I am so glad you posted this! Now that my biopsy is over (still waiting for results), I'm eating gluten free again, and I am excited to see if it will help my sinus problems, too.

This is going to be a long one . . .

This is not my experience. 8 months gluten free, and I get sick bad from a speck. In a way, lucky me. I have no doubts.

Thank you for posting this.

Yes, I do, too. I just posted in another reply that when I am gluten-free, even a little gluten throws me to the moom.

However, when having to force myself to eat gluten for a prolonged period of time . . . at the very end of all those weeks of my gluten challenge (augh!). . . my symptoms began to lessen. That's what I am wondering about -- if others have had the same happen during their gluten challenge. I find it interesting how the body reacts to these things.

Also, for clarification to anyone reading this thread, and this is important: My initial post at the beginning of this thread is not meant to imply that people GET WELL as the symptoms subside. No, no, no. I'm just exploring how with some people, they MAY become less symptomatic

For those who may experience a decrease of symptoms, it's actually a bit scary. I'd worry that some may think "Oh wow, now I'm better and maybe I'm okay after all and don't need to test," when in fact they're probably more sick than before.

I should also add that when I was experiencing symptoms before realizing that I needed to be tested, I wasn't eating gluten all the time. Some days yes, many days no. I'm a whole foods person who stays away from refined foods as much as possible, so without my realizing it, gluten naturally went by the wayside on many days.

Some days I'd have reactions and many days I would not. Because my first celiac test came back negative (blood test only and possibly false because I did not do a gluten challenge), I didn't worry about gluten. What really confused me is that some of the reactions were coming from hidden gluten (soy sauce, veggie burgers, seasonings), I was totally confused as to what was happening to me. I thought, "It CAN'T be gluten." Duh!

So, here's the thing: Before I began eating whole foods, I wasn't aware that I may have a sensitivity to gluten, and of course I ate gluten all the time. Looking back, I probably was somewhat symptomatic: hungry all the time, tired, many infections, a full year of swollen glands from chronic fatigue. But I didn't have the strong lower GI problems I have now.

It was only after eating a whole food diet that my body started to INSTANTLY rebel with D on gluten days. It wasn't until my gluten challenge that my symptoms began to lessen a little, at the end.

Which leads me to wonder if some people become less symptomatic (although still sick) if they force themselves to eat more gluten for a certain period of time.

Just wanted to clarify -- I should have posted this earlier. I'm so enjoying everyone's responses here. I hope we'll get more. THANK YOU!

Contrary to what's being said, I've heard that after some recover they get a "heightened" sense of reaction when they've been glutened. Probably as a sort of defense against sources of hidden gluten and your body trying to take care of itself.

But I agree, not suffering the pain that comes along with consuming gluten makes it considerably harder for you to stick gluten-free. Whenever I crave gluten, or even carbs for that matter, I load up on some fat with my Paleo diet.

That happened to me. Before I realized I needed to be tested, I had a few true gluten-free weeks (where I finally learned about the hidden gluten in food) . . . but I still had a lot of learning to do, and I accidentally ingested gluten twice. Both times, my body exploded -- it was a much stronger reaction than I had had previously . . . and previously was pretty darn strong. D the main symptom -- like, BAM.

I'm so glad you posted this!

I've had the same experience, I started eating gluten about 3 weeks ago and expected to feel a lot worse. Just like you said, the longer I eat regular bread and pasta, the less bad I feel. It's so weird. I am very tired and dizzy but I expected more GI problems, mainly the pain. I'd always had the pain when I ate regular bread before but now I'm just really bloated but pain free. It's so weird and it only contributes to my confusion. If I make to decison to stick to a gluten-free diet, it'd be helpful if I felt REALLY bad while eating gluten. But this way....I don't know.

When's you're endoscopy? I'm going to my new GI doctor tomorrow to discuss my symptoms in more detail tomorrow and to schedule one, but she already told me over a phone conversion she'd like to do one and I should start eating gluten if I want to go ahead with it, which I do.

How did your test go?

Thank you for asking about mine. I had my endoscopy and biopsy on Monday and am still waiting on the results. I went gluten-free THE MINUTE the test was over and am feeling better all ready, psychologically as well as physically. I've never been so happy to leave a food behind. Good riddance!

Hi Lynayah,

I also used to get chronic sinus infections and when I get glutened I feel pressure in my sinuses again.

I also get joint pain and my tendonitis acts up (knees & achilles teondons).

I've seen others mention sinus problems when glutened (or pre-dx) so perhaps there is a link! Worth checking out.

Jillian

Jillian, thank you! I hope others with sinus infections will post their thoughs. I am so glad to know I am not alone.