thleensd

*raises hand*

(one of my glutened symptoms? anxiety!)

Me too! Based on the response here, I hope you at least don't feel alone.

My blood work was negative. Fortunately I got the biopsy done, and that was positive.

Not uncommon! Good luck.

*raises hand*

Im putting my hand up. That was one of the first thing a doctor told me.

"There's nothing wrong with your stomach - the reason you're having these stomach problems is because you're depressed - can I suggest a course of Anti-depressents?"....

Umm. No. I have refused anti depressents - im sad because im sick, not sick because im sad.

One of my symptoms when I get glutened is depression.

*sigh*....frustrating doctors - they cant see beyond what's written in their text book!

Does anyone in here with Celiac have a feeling like there is something stuck in their throat? I do it comes and goes though. I have hypothyroidism as well as Celiac and noticed that this started around the same time I was diagnosed.

I had an endoscopy so If I had Barrets disease I am sure the gastro would of told me. It's just really annoying because normally I would never even give swallowing a conscious thought.

Me me me! This has been one of the most persistent annoyances for me! Before I was diagnosed, I was told this was everything from reflux to stress. And, of course, they wanted to throw drugs at it (prilosec--I know some people can't live without it, but it is NOT a good thing for me). Even had it checked out by the allergist...he said it wasn't related to allergy.

When they did my endoscopy, though, there was no sign of problematic acid.

Some days it's worse than others. For the life of me I can't figure out what is causing this.. Except that when my stomach is completely empty (like first thing in the morning) it's least problematic.

The only thing that seems to make sense is that there is a little sphincter muscle in your throat there to keep things from coming up the wrong way...so...somehow my body thinks that could happen. From what I've read, low stomach acid can cause this as well, because food stays in your stomach longer trying to digest.

I'm considering trying some digestive enzymes, but my system is so messed up, I don't want to make anything worse!!

What kind of chicken? I have just discovered that frozen chicken (Koger's) makes me sick. I had emailed them about the indregredients before eating, and they told me it was ok, but I think differently now. They freeze it in a broth solution, so it won't stick together when frozen. I think the solution may be the culprit for me, am going to call or email them again!

I've just been searching the board here for chicken, because I discovered the "frozen chicken tenderloins" I've been eating have the broth coating you're talking about...and I've had a bad health week. They're Ralph's brand (same as Krogers), and the ingredients said, "broth and sodium phosphate". What exactly did they tell you? Did it sound like you were talking to someone that knew what they were talking about? All I could find was that they'll always disclose "wheat" on their website. ...but we know that's not enough info! =/

I'm a bit wary of the restaurant thing. Only been doing this a bit over a month. How careful are the pizza places about cross contamination? It seems to be that a pizza place would have flour everywhere....

Have you had any good conversations with managers?

Thanks. =)

I had to let everyone know about some awesome restaurants I have found that have gluten free choices. I always love finding places to eat! Ok, here goes, I'm gonna play food critic

Ciao Bella in Riverside - Open Original Shared Link

They have gluten free woodfired pizza (good but not the best I've had) and gluten free pastas. I had the Chicken Farfalle and it was the best pasta dish I have ever had! Its a pretty cool little restaurant too. Kinda romantic.

ZPizza - Everywhere! They have 51 locations in California alone and most have gluten free pizza! ZPizza.com

The pizza was about an 8 out of 10 as far as gluten free pizza's go. I would go back for sure. They also have soy cheese but its not dairy free.

Doughboys Pizza in Grover Beach (near Pismo) 1800 E Grand Ave, #N, Grover Beach, CA 93433

This was the best gluten free pizza I have ever had and probably right up there with the best all around pizza I have had! The woman who owns it is a retired dietician who spent months trying different crust recipes until she got it PERFECT! I just wish I lived closer, we went there while on vacation in central California.

Brick Oven Pizza in Poway - Open Original Shared Link

Really good pizza! Been there a few times.

Wow, can you tell I really miss pizza?!?

I would love anyone else's "hidden" gluten free dining places!

Does anyone know what it means to have a low RDW (red cell distribution width) and normal MCV? I know these two tests are usually done in conjunction to diagnose anemia, but I read that in certain situations it can indicate villis atrophy. What about b-12 and folic acid--can just a low RDW affect them? Does anyone out there with anemia have blood counts like this?

Your RDW isn't all that low...it's really pretty close to range. Keep in mind that different labs set different "normal" standards, too. Some define "low" as below 10.2.

However, you should insist that your doc follows up to be sure. I'd be more concerned with the low RBC count.

If your low RBC count is caused by iron deficiency, your doc needs to do iron studies (serum, ferretin, TIBC). They should also "routinely" check for B12...but, you may have to ask. I had to be very insistent with my doc to follow up on blood tests, but I'm glad I did. (then I found a new doc!!) =)

Good luck.

A few years back I was diagnosis with chronic hives and swelling...idiopathic. I don't have any allergies--I've been tested for nearly 90 foods. This condition is an auto-immune disorder. I was also diagnosed with dermagraphism. (Pretty much, if you run your fingernail across your skin lightly it turns into a big itchy welt)

I read an snippet online (don't remember where) that there could be a connection with Celiac, but they haven't done any studies on it...just enough info to suggest there might be something to look into.

Anyone else? Might be a long shot, I know.....

And, of course, I've heard if you have one auto-immune, you're more likely to have another than most...

(oh, I dealt with this issue for about a year...took ridiculously strong antihistamines that knocked me out, and it eventually went away. Only 2 mild recurrences. Still have the dermagraphism though. Seems to be a weird systemic histamine reaction without allergy)

And what will the flavors be...and will they make gluten-free frosting...and what other products will they be coming out with...and what other companies will copy...and will they put all their gluten-free items together in the store...??? Life is getting easier for celiacs Think of how happy kids will be and moms too of course! And birthday cakes!!!

THIS is the part that is exciting to me! Mainstream attention to gluten-free! I talked with managers at both my local grocery stores. One of them really had NO IDEA that there is this huge population of people that avoids gluten.

Yesterday I went into Ralphs and they had five (yeah, that's all I found in the whole store) gluten-free tags up for easy identification. I stalked the manager so I could thank him. His response was, "I'm glad that corporate listened to the idea".

Oh....and the girl scout cookie people told me (email) that gluten free is on their experimentation list...but only when they can figure out how to do it *right*!

Anyone else have problems with Dasani? I've always kind of avoided it because I don't like the taste, but I had some today, and my system is having a fit. I don't know if it was that or CC from something I ate. Trying to figure it out. Anyone??

Wow. Ok. Here goes:

Probably some less significant things before this past year (except low iron for all of adult life), but...

One year ago I got the flu (real flu, not stomach flu). Developed lower right abdominal pain. Nearly passed out, was very weak, and had my first ambulance ride. Tests, tests, tests, you know the story. After that, I had a very hard time becoming functional. My digestion stopped (no BM of significance for weeks), went on a near liquid diet (like ensure, but with gluten in it! I'm SURE that helped!). Hard lumps in my GI track, but not a "blockage". I was very, very fatigued (like, needed help to function - eat, use restroom) and missed over a month of work. Iron dropped to 4, Ferritin dropped to 2. Lost too much weight.

Since then, I've had: tingling fingers and toes, crazy fatigue, constipation, anxiety, feeling of regurgitation (without acid), abdominal pain, tight throat, dizziness, light headedness, brain fog, hard to swallow, extremely tired limbs, and all of the aches and pains that go with malnutrition. Dx by biopsy. Blood work was negative, but I was already eating gluten-light for months.

My body is getting stronger, but I'm still having intermittent feeling of pressure in my throat (feels tight, but I don't think it's actually my wind pipe closing, I think it's my stomach/esophagus). It's actually kind of scary. Allergist assured me I'm not allergic to anything so I shouldn't worry. I recognized the feeling from when I ate wheat... which is why I feel like it's food. Maybe it is corn. I'll lay off it for a few days. I think I haven't allowed enough time in between new foods and supplements.

Hard for me to figure out because I've never had allergies...not to anything. And, I'm getting really tired of eating plain chicken and rice. I've been experimenting with plain diets since November, but either I'm not a linear enough thinker and organizer (or too ADD or something!) to figure it out. I feel like I need a chart and someone telling me what to eat and when. Is there a book out there that will do this for me??

Thanks.

I was diagnosed two and a half weeks ago. Been totally gluten free for three weeks (gluten light before I *knew*). I'm getting stronger, and usually feeling better, but I am definitely reacting to SOMETHING.

I've exorcised my house of all gluten! Including lotions, soaps, etc! So, I've been very careful. Only eating at home, new toaster, etc.

Went to an allergist, and have ZERO food allergies according to the 89 scratches on my back.

That being said, there is something I'm reacting to, and I can't figure out what. After feeling much better for over a week - my throat feels tight (might be a sensation in my esophagus...that used to happen when I ate gluten), and I feel anxious. Those things haven't been happening since I went gluten-free.

If I don't have any "allergies" ...how do I figure out what the reaction is to? Do you have any good resources?

I've heard of the Enterolab stuff...but I'm not sure how much I trust it. I know there are people on both sides of that issue with plenty to say. I'd be interested in hearing stories about experiences with them as well.

Frustrated. =(

Went to a nutritionist/dietician today. Eh. After talking to me for about 2 minutes she said I probably knew more about it than her. True. At least she was nice. She told me I could take a multi-vitamin, but I wasn't really missing things from my diet...unless I went carb free. But I'm not.

She did give me two good things. One was a print-out of websites I could go to to buy gluten free foods, and the other was a 58 page book published by Celiac Disease foundation. It has good stuff in it! Easy to read, etc. You can probably get it on their website: www.celiac.org

Seems to me the best solution is read, read, read. Get the newest books you can, though. I have one that is five years old and have found some inconsistencies with the latest research.

That and eat a balanced diet.

Cheers.

I'm not a poop expert...hehe, but in trying to figure out what the heck was wrong pre-diagnosis I learned some stuff.

The best description I read that was stool should be the consistency of toothpaste, float for a moment, then sink slowly. THERE's something to strive for!

Fatty stools float, but they often are hard to flush away - crud sticks to the sides of the bowl. Also, there will frequently be a greasy film.

That being said, any time you change your diet drastically your stools will change as well. So, give your body a couple of weeks to normalize, and try for a balanced diet.

Hi all...I have an icky question for ya..

I have been on the gluten free diet since late June...so for about 3 months or so. The past week/week and a half, I've been noticing that at least once a day when i go to the restroom for #2...it floats. I thought I'd heard that this was a sign of celiac and the malabsorbtion of fat. I have been careful about not ingesting any gluten that I'm aware of.....but I find it odd that all of a sudden this seems to be happening. I don't actually recall it happening BEFORE I was on a gluten free diet. So my question is: Is this a normal thing that happens every once in awhile regardless of whether you have celiac or not? Does it mean that I've ingested gluten and my body isn't absorbing it? Or.....?? I'm just not sure if I'm reading too far into it or not. Any advice is appreciated

Getting my iron up was the hardest thing for me to do.... My ferritin was all the way down to TWO! But after my diagnosis and going 100% gluten free (not almost gluten free...it won't work), my iron shot WAY up. (And in two weeks! Not common if you visit the iron deficiency forums) And this is after years of trying to get my iron up with iron supplements *three times* per day! Now, I am only taking it once a day and Floravital (made by flouradix--reg. flouradix has gluten). It's expensive, but it's really a life saver for me. It's iron and B complex. I tolerate and absorb the liquid much better even though it's a small dose.

How long have you been gluten-free? My blood work was negative because I had gone off gluten before testing, which is a bad idea. You must be on gluten for tests to show it. My biopsy was positive, but my doc almost didn't do it because my tests were neg.

I have not officially been diagnosed with Celiac Disease, had the classic symptoms and I am feeling somewhat better on a gluten free diet. I have, however, been diagnosed with Iron Deficiency Anemia. I am wondering how long it should take for my intestines to heal enough to be able to reap the benefits of an Iron supplement. It doesn't seem to matter if I take a supplement, get it naturally from my diet, but I still feel weak, dizzy, tired (12+ hours of sleep later) and am getting weaker by the day as it seems my body isn't getting any of the iron it needs. Does anyone else suffer from both Celiac and Anemia? How long did it take you to feel better?

P.s. I know that I should see a doctor, I also know that without testing there is no guarantee that I have celiac disease, etc.

Yes! When you take calcium you should also take magnesium. They need each other. Important to get them in the right ratio, though. I've heard different numbers so I won't quote them, but a few google searches should help you with that. In short, calcium helps muscles contract and magnesium helps them relax.

There's a great book called, "The Magnesium Miracle" ...I know, sounds quacky, but seems legit. Lots of good info in it.

Magnesium calms me down, too. (there is a long explanation about how adrenaline wastes magnesium....but I won't go into it)

Good luck.

I was diagnosed last week. The first thing my GI doc did was give me a referral to a dietician (Kaiser- "nutrition services" or something like that). I'm going Friday. I've been doing a ton of reading, though, and that seems to arm me pretty well. I'll do my best to let you know if they offer anything interesting. (PM me if I forget) One of my seemingly unrelated (but definitely related!) symptoms has been extreme energy drops two hours after a meal (like a blood sugar crash--but blood sugar tested ok every time), and I'm going to ask about that.

Other than that, my GI wants to see me in three months, then once a year after that.

Good luck.

I've been trying my best to live gluten-free since Nov 07. My doctor considers the matter resolved since trying a gluten-free diet, and honestly he hasn't endeavored to learn anything more about celiac or gluten. I've been pretty much on my own.

What I want to know is, are there specific kinds of tests a celiac should get regularly? Is it worth it to spend money on a Dietitian? I would imagine that damage to the gut causes increased risk of colon cancer, so what about that?

Can anyone think of anything? I'd like to run them by my doctor because he's always willing to recommend me to someone if he thinks I need it.

Hey, you San Diego folks....

Give me a holler. Diagnosed last week. Wheeee! I have discovered Pei Wei already =) but looking for other eats, events, etc. I was thoroughly traumatized last weekend on a two-day trip to Phoenix trying to eat out. *whew*! I've been to the support group site, but they meet pretty infrequently, and at times I can't usually make.

Anybody going to hit up whole foods next Saturday for gluten-free tasting?

Ok, back to studying my cookbooks intensely.

I was diagnosed last week. Like most of you, what I have to say is, FINALLY!!!!!

...and then a whole bunch of much more colorful, much less appropriate things for the DOZENS of doctors who diagnosed everything from "nothing" to "take some metamucil" to "let's check for stroke and brain tumor" to "see a shrink". Even my naturopathic doc (who was the one that called it first) didn't tell me I needed to stay on gluten to be tested.

I'm looking forward to good health (trying to be patient!) but in the meanwhile wonder what I can do to help educate doctors. I know there are some big Celiac organizations....but what can *I* do? I've already started the educate-everyone-I-talk-to campaign.

Can someone tell me what is being done to get the info out to the medical community?

Thanks.

Two weeks gluten free down. A lifetime to go. A long, healthy one. =)