Lynayah

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.

Even if I eat a small amount of low calorie, low fat food, if there's gluten in it, I feel bloated and I get the same feeling I get when I overeat -- similar to that "uh-oh, I feel like I'm putting on weight" feeling that I get when I blow it on a weight loss diet.

Stuffy, hot, cranky, tired. Sometimes my nose runs. I will feel a slight heavy pressure in my forehead and in the sinus area under my eyes. Also, I get loose stools very quickly, often incontenence. If I eat gluten before bedtime, I will wake in the middle of the night feeling stuffed and hot. No fun.

When I saw the doc last week, she asked me if I am prone to sinus infections, which I am. Not sure why she asked or if sinus infections are common for those with gluten-intolorance. I'll have to ask her next time.

Something interesting is happening to me right now, and I've posted it under another topic (Gluten Challenge: Symptoms Improve?), but I thought it might be worth mentioning it here as well. I've had to do a gluten challenge for the past 6-8 weeks, and just over the last few days, my loose bowel symptoms have lessened, and in the last 24 hours, I've gone from having D to barely having bowl movements at all, even though the doc has me on a laxitive. This is so weird! I'm not sure what to make of it.

I wonder your body starts to readjust in an effort to . . . well . . . adjust!

Oh, and when I eat gluten, I also get more body aches and numbness in arms and sometimes legs. Feet and hips hurt.

Now that I've been on a gluten challenge for over six weeks (prep for my celiac test), my symptoms have started to improve what's with this? I seem to be able to eat more gluten without getting as strong of a reaction. Is this common for some?

Yep--it won't be long now! Just think about how good you're going to start feeling once the test is over with and you can ditch the gluten once and for all.

The laxative may prove to be overkill though--so be careful. Best of luck on Monday--take care.

Thank you, Jerseyangel!

Here's a note for those reading this thread who may have to go through the same thing:

Amazingly, the laxative has been fine -- no problems, and not really any changes (and they say I have a lot to clean out).

Without the Immodium, it is knowing I need a bathroom close by if I eat gluten, but I haven't had any other major "runs," as it were! It feels like old times.

This stuff seems pretty mild. It says on the label that it can take a few days to work, that someone typically sees results on one or two days, so we'll see.

You only have two more days until you can happily toss gluten from your life. You can do it!!!

I have to say though.... if eating gluten gave me diarrhea, there's no way I would take a laxative on top of it. That just sounds like multiple changes of clothes waiting to happen...

As I found out this morning, it is, it is, it is!

That's why I was so tanked up on Immodium! I couldn't do the gluten challenge with out it, well, unless I wanted to carry a wardrobe with me everywhere!

Thanks for the words of support.

Hi, Everyone:

I'm sure this has been posted here before, but as an update I'd like to tell you about my experience with planning a gluten-free Disney World vacation.

My husband and I go to Disney in October. (I am the one who needs gluten-free.)

I called for dining reservations 90 days prior, as is recommended, and I let the reservation desk know about my having to eat gluten-free. They marked it on all of my reservations.

I thought that would take care of everything, but when I was speaking to a Disney World Cast Member earlier this week, she reminded me of something I knew but forgot: It is important to contact the Special Dietary Request Executive Offices as soon as possible once you've booked your dining reservations. 1-407-824-5967.

If you're not booking reservations and just doing quick service, it's STILL important to call. They have a ton of excellent information for you.

Leave a message telling Disney exactly what your allergy needs are. You'll get a call back from the Dietary Department, AND they'll email you a packet overflowing with info:

A letter linking you to Disney dietary info

An attachment that explains how to handle special dietary requests

An overview of what the park restaurants offer

A special attachment that shows all the restaurants that have allergy-free chicken tenderloins.

A copy of the allergy-free chicken tenderloin nutrition label

A dietery request form to send back to Disney

A list of prepackaged snacks

A list of specialty products (did you know you can get a baked potato at Liberty Square with advance notice?)

For my gluten-free needs, I received a specific no-gluten guide to dining in the parks that shows what foods are naturally gluten-free as well as what substitutes can be made at Magic Kingdom, Animal Kingdom, Epcot, and Disney Studios (sit-down and counter service).

Wow!

Also, the Dietary Department told me that Main Street Bakery offers a to-go box which allows you to go to Main Street Bakery early in the day, order what you'd like -- just about anything -- for the restaurant you plan to attend later, and they'll have it there for you!

I assume you can just order carry-out, too. I need to check it out. Not sure.

So, from what I understand, if you're dining at a restaurant that, say, doesn't have allergy-free chicken tenders, all you need to do it order it at Main Street Bakery, and they'll make sure you have it there.

I assume you need to order very early or maybe even the day before. Again, not sure.

I hope this helps! I'm going to post this at disboards.com, too. (For those planning a Disney trip, this site is very helpful.)

Thanks everyone! Hope this helps.

Just wanted to say hang in there! Also, while you are there, ask for a copy of your bloodwork. And, before your procedure, make sure you talk to the doctor to ensure he takes multiple biopsies from multiple locations in order to increase the accuracy of the procedure. ("at least 4 to 6 biopsy pieces need to be taken" - Open Original Shared Link

The end is in site - you can go gluten free very soon!

Luv ya, Happygirl! Thanks for the support.

Everytime I eat wheat, I end up with lower stomach pain, nausea, and diarrhea or crazy stools, in addition to increased anxiety and a depressed mood. I also end up "foggy" and I find it hard to think/make decisions/complete tasks. Inevitably my lower stomach ends up with a burning feeling and when I start eating again it especially burns when food touches my stomach (not heartburn).

So far my results are negative for celiac. I have not eaten much wheat (maybe a beer once a week, a tortilla or pie crust once every two weeks) for a very long time since college when I ate bread every day. I hear that can affect the tests but I'm not willing to eat more wheat for the sake of testing.

I have had a few tests so far:

IGA 158

ENDOMYSIAL AB NEGATIVE

FECAL FAT NORMAL

TISSUE TRANSGLUT. AB 0.3

Reference range: <4.0 Unit: U/mL

TISSUE TRANSGLUT. AB IGG 0.3

Reference range: <6.0 Unit: U/mL

I don't know if I should keep pressing for more tests, or if it's enough to know that when I eat wheat, I get sick? Many others in my family avoid wheat and other grains, also, although none of them have been diagnosed.

Thoughts?

From what I've learned, you absolutely MUST eat gluten for at least six weeks to get a proper diagnosis.

I totally understand how you feel about not wanting to eat gluten. I've had to do it for the last six weeks so I can test, and it's not easy . . . but it is what it is. No fun, but necessary.

Hi,

Please help me get through the weekend?

I go in for my endoscopy/biopsy on Monday. In the meantime, I am told my Deamidated Gliadin is high (86) but my antibody inflamation is low (less than 9). I spoke with the office to get the results, not the Doc., so I'm unsure how to interpret this.

Might anyone offer some thoughts?

In the meantime, I am told that all the Immodium I've been taking to enable me to eat gluten for the last six weeks (I've had to take a TON each day to keep from having diarrhea as well as incontinence) has me so seriously clogged that I need to do something. SO, now I'm on a laxative indefinitely -- Miralax starting tonight -- and no more Immodium allowed.

This is going to be a VERY interesting weekend.

<laughing> Hubby has been lovingly teasing me with, "Gee if they wanted to know if you were full of it, all they needed to do was ask me!"

PLUS, I still have to eat gluten!!! They don't want me off of the stuff until I've been tested on Monday AND they've confirmed they do not want to do a re-test. And I have to work . . . while taking the laxative . . . and eating gluten at the same time. Oh good grief.

Looks like I'm in for a "crappy" time until this whole thing is over. Augh!

Okay, more: I was diagnosed with a dangerously low Vit. D count last year -- I've been taking mega doses of D since, and now I'm testing high which gives me hope that I'm absorbing nutrients and maybe this is just gluten intolorance instead of Celiac, but who knows.

I am so confused about everything.

I love this forum and am so grateful for the support here. Thank you for your help!

reposted under "Please Help Me Get Through This Weekend"