thleensd

Scary....

Reminds me of right before diagnosis when I was feeling faint and pulled over on the side of the freeway. Highway Patrol found me and said I either needed to sit up and drive or call 911. Even if I'd have known the problem, I'm not so sure Mr. Officer would have bought, "sorry sir, I just ingested wheat"...haha.... *sigh*

Be careful out there.

I'm curious how you know this. It's kind of an odd meat and most people wouldn't even consider it.

How 'bout ostrich?

Goat?

Wow, really? Where would one acquire ostrich or goat meat?

They found my Vit D deficiency next week (I'm at 18, ref range 30-something). I'm anxious to get started on my D because I'm hoping to get some symptom relief. Vit D deficiency can cause fatigue, muscle wasting, and a whole host of other things including bone and muscle pain. Maybe it will help my insomnia and anxiety a bit too. =D

My regular doc said to take a supplement...1000 IUs or so, but I saw my GI doc today, and she put me on 50,000 IU/week for 8 weeks (like Lahoma). After that supposedly I can go down to a maintenance dose of 1000/day. I did a bit of research and it is the new recommended approach to deficiency.

I took my first 50,000 a couple hours ago. So far so good ;-)

Not only is D deficiency common among the general population, but apparently very common with Celiac. GI doc reminded me that ANYTHING usually absorbed in the duodenum may be low (and should be checked).

She didn't tell me to up my calcium intake, but after a bit of reading today, I might.

My doctor tested me for vitamin D deficiency last week and just called to say that I need to take 2000 mg/day of Vitamin D. This probably explains why my psoriasis has been worse, but I don't seem to have any other symptoms.

Has anyone else had this? I've been gluten free for quite a while, but now I'm wondering if I'm having some type of malabsorption problem.

Anemia was a huge part of my illness. As a result, I've studied up on iron. My ferritin shot quickly up from 2 to 30 within a few short weeks of going gluten free, but I've had to stay on mild iron. You didn't list any numbers or which tests you're referring to, but a couple of thoughts: the distance between "normal" and "low" can be very slim...one unit or even one decimal off. Also, different labs use different reference ranges, so a low "normal" number to one lab can be "low" at another lab. Also, doctors have different opinions on what numbers "should" be. I tested just at the end of normal range for Vit D, but was told it was normal (with no knowledge of the numbers). A year later, a new doctor put me on Vit D supplements because it was much lower than he would like to see it.

Finally, iron numbers fluctuate. If you test while on a supplement, you test may have slightly elevated numbers! And I'll echo the thoughts above about the possibility you still aren't absorbing properly.

I've had good luck with Florivital by Floridix (one is gluten-free and the other not, and they look nearly identical, so be careful!). It doesn't have a very high dose, but seems to absorb well for me and not upset my tortured GI track!

Good luck.

K

I was diagnosed with Celiac Disease just under a year ago. I was severely iron deficient at my diagnosis and my gastroenterologist advised me to take an iron supplement. About 6-7 months after my diagnosis I returned to the doctor because I didn't feel like I was getting "better." He ran several blood test and the results all came back normal, including my iron levels. As a result I stopped taking the iron supplement. Now, 2 months later, I went in for a regular check-up and all of my blood tests came back normal except for my iron. My doctor (different from the first 2 visits since I moved to a different state) told me I am anemic again. My question is, why would my iron be fine and then just 2 months later I become anemic again? My diet has remained gluten free and if anything I have made an effort to eat not only gluten free but well balanced meals as well. Please help me figure this out!

If I had a quarter of a million dollars lying around I'd open up a garlic Jim's franchise (any takers with bucks in San Diego?) They seem to be doing fine (?) and are looking to franchise. They use rice flour for the bottom of ALL their pizzas (so as not to have wheat flour flying around!) I've eaten there a half dozen times or so when I've been near LA... no problems. They assemble all of their gluten-free pizzas in the back. Most of their toppings are said to be gluten-free. The gal making my pizza washed her hands a lot as well.

(I echo that I've had problems with Pei Wei, too! Boo! Even when the manager stood over the cook that was making my meal...)

But, since I don't have 250K, writing to Papa Johns sounds like a good idea.

=)

To the nay-sayers:

Even if GSA doesn't have the funds/ability/market for this, I'd say the more people that are educated, the better! Why not drop a line to company XYZ and tell them that we're here and we're looking for options! You never know what the tipping point will be. PF Changs has a great gluten-free menu and fantastic awareness (at least all of the ones I've been to) ... SOMEONE started that ball rolling. It's going to have to be us. Minorities (in our case - of dietary needs) are not heard if they are quiet.

*steps down from soap-box*

This is a great article on what exactly happens in your gut:

Open Original Shared Link

However, I need more info...any maybe some translation! =)

Particularly... how long does the effect of ingesting gluten last? I know it damages cells, changes your blood, and can set off a chain reaction of sorts.... but how much damage does a one-time accidental "glutening" actually do?

I've been gluten free for 9 months...making slow but steady progress... Accidently ingested some gluten, last week and it hit me HARD. I feel like I've gone back 6 months in the recovery process. Super fatigued, anxiety, light-headed, the whole deal.

Possibly related trip to the ER for very low blood pressure...but I'll make that a separate post.

Any thoughts?

Yep...me too. It was one of the final pieces of my puzzle before I was diagnosed. Scary. But reading up on them helped. Also, understanding the science of it-being able to tell myself that it was "just" my body having an inappropriate adrenaline reaction helped.

Fall back? prescription anti-anxiety meds. Haven't taken them for months and months...but kinda nice to know they're there just in case!

I don't know for certain, but I sense that as all of my systems get back to normal, the anxiety will disappear. It's at least it has GREATLY lessened.

Good luck.

I went to my 2 1/2 month followup with my GI doc yesterday.

I'm still under weight and fatigued, however, I'm functional now. I can work, but I fatigue easily and often. I've gone from 5-10% to maybe 50% of my desired energy/activity level.

Doc wants me to push myself a little more...but I'm so fatigued when I get home the LAST thing I want to do is go for a walk, much less pick up a barbell (she wants me to put on some muscle mass).

Every time I do something recreational (like, went to Disney a couple weeks ago - took it easy, but still a lot of walking), it takes a full day of reclined rest/sleep and a couple days of light activity before I feel decent again. !

I told her I was concerned that I didn't want to push myself too hard and slow my recovery. She said "you won't". And, I don't want to burn the calories I desperately need. She said eat more. Easier said than done! I'm so tired of chicken and rice! (temporary other food intolerances...I hope)

Mixed signals though, because at one point she suggested I was doing too much (hobbies and responsibilities) and maybe I should spend more time focusing on me and getting better.

Any thoughts? Suggestions? Success stories? I've been an athlete most of my life, and I'm feeling very frustrated that I can't even WALK a few blocks without feeling awful...my poor lonely bike has been sitting in the garage without me for over a year.

She suggested setting small goals. I hardly know where to start.

So, you know when you type "________ gluten free" into google and a list of what other people commonly search for pops up? It's good to know that three are 11,200 hits for: rice chex gluten free.

That being said, I've so often run across a really dumb response to a good question. We need a gluten snopes for the little myths or unknowns wandering around that pop up. Is there gluten in _____? I was glutened by __________!

I know it's not that simple. But google search: envelope glue gluten ....and look at the fun array of answers that pop up on the first page of hits!

Totally! "Can you wait a day or two to get sick so we can verify your drugs. Wait, actually, so you can verify them yourself? =D

Part 2 - went back today to get the name brand drug instead of the generic, and of course, they didn't have it. They said Tuesday. They asked if I had any allergies--someone has put on my chart:

Allergies: Bran

Reaction: Celiac Disease

heehhee...well, I guess that's close, right? Not so much!! So, then I had a conversation with the pharmacist on topical ointments that would be used over an open wound...and oh, near the mouth. That was interesting. THen I found out he was new there, so I got to help break him in. At least he was interested.

Once again, new doc and two pharmacists were perplexed that they didn't have a list of safe drugs.

I have never understood why drugs should be exempt from the food labelling laws. These are things you are prescribed, reach for (whatever) when you are desperately in need. You are not sitting back and looking at the menu and saying, "Hmm, should I have that tonight? It could be delicious. Is it something I can/should eat?' You are in *need*, you don't have the time and/or energy to devote to that kind of c--p!! You need it now, not checking with the pharmacy and ultimately the manufacturer, maybe the next day, err, does this contain gluten?? and with the answer, maybe, maybe not. It's just not good enough. We oughta start a campaign!!

Is this 100 or more topic still up somewhere? I've tried using the search function and can't find it... link, anyone? =)

We discussed that question at our celiac support group meeting last night! My symptoms of being 'glutened' are both typical and atypical. I get bloating, gas and excruciating abdominal pain which feels like bits of broken glass are stuck in my intestines. I also get extreme fatigue, but that's easier to handle (with rest) than those excruciating pains. I drink very strong herbal peppermint tea to relax the cramping pains, take hot showers directing the water spray on painful area, or walk. My gluten symptoms can last 7-10 days even after the initial contamination. 2-4 hours after I eat anything I feel pain in the damaged areas. Fortunately I have not been 'glutened' for over a year. My most recent contamination was from dairy (I also have casein and soy intolerances) 2 months ago. You might also enjoy reading the topic "100 (or more) things to do when you're glutened".

BURDEE

Hi everyone,

Not to be too negative, but it's getting a bit depressing for me to keep reading about people who have been gluten-free for so many month and years and are still having symptoms and all sorts of other problems. Is there anyone out there who can say that they've had complete cessation of all their symptoms after going on a gluten-free diet? I keep reading the "official" line that 99% of people with Celiac are able to live normal, healthy, symptom free lives after going gluten-free for a while. This certainly doesn't seem to be the case around here. After 2 1/2 months, I'm suffering worse than I was before, and I eat nothing processed, cook everything from scrarch, and have checked every last little thing possible from pet food to shampoo to old pots and pans etc. etc. etc. etc. etc. etc. etc. etc. It would be awfully nice to hear some uplifting stories and to know there is light at the end of the tunnel.

Anthony

Thank you for posting this. I totally understand...and it's nice to have this community to tell us to hang in there. I trust it will get better. It is definitely tough to be in a tunnel when you have no idea how long it is or is there is light on the other end (thanks for that analogy!)

Best of luck. Hang in there.

Yeah, as much as I like to be the center of attention I'm getting really tired of saying the word "gluten"...So while I contemplate my endless patience in educating the world about gluten and cross contamination and reaffirm the importance of talking to the world about what I CAN eat, I'll vent, too.

I went to a memorial service yesterday, and all that my friends wanted to talk about was gluten. Seriously! Um.... gals.... um.... yeah, see the flowers and the pictures up there? Are we really going to have this conversation for an hour right now?

So, I just have to vent for a minute. I went to my in laws for Easter, and there were a lot of my husband's family members there. They all know that I have Celiac Disease (and other food allergies). I usually bring some of my own food to make it easier on everyone. I always bring my own dessert because I KNOW it is safe. Anyway, as soon as I get it out of my bag, everyone starts gathering around me to see what I am eating, and they have to ask 20 questions about it. Also, I feel like everyone is watching me to see what I am going to put on my plate. If I don't take something, they always say "oh, that should be ok for you to eat" because everyone thinks if it doesn't specifically say wheat, then it is ok. It's really getting old!!!!! I'm so tired of explaining it, so I usually just don't say anything - but it's hard to hold my tongue at times. I saw a cute t-shirt online, and I sware I am going to wear it to the next family gathering. It says "Kiss My Gluten Free Ass" - funny!

I did a search for "anxiety" to see if any one else has a similar issue. (Minus the throat itching, though...that's a little worrisome). I've been tested for 80-something food allergies, and am not allergic to anything. Not even a little.

When I was first diagnosed, I'd been having "anxiety attacks" very much like you describe...interestingly enough, they completely went away when I went gluten free. Also, I'd been having adrenaline surges--just sitting there calmly, and WHAM! Not a psychological thing, didn't freak me out, just adrenaline. That also went away.

Until last night. I ate two new foods...thought they were safe, but then this happened. I thought, "boy, this is a familiar feeling". Very irritating. The striking thing to me is that it seems to be worse now that I'm completely gluten-free. I believe I got glutened one other time, and it was similar, but not nearly as severe as last night. Only lasted a couple hours. But I'm still tired today. I'm trying to be so careful! Grrrr!

Be careful, though...my brother's shellfish allergy didn't hit until he was over 30. Consider getting allergy tests to be sure.

-K

I have gone gluten free for about 3-4 weeks now and have felt great!! Better then I have in years! Last night I took about 5 bites of clam chowder and I started getting that "feeling".

My heart started beating harder and a "warmness" started setting in my body like a panic. My throat was itchy inside and out and I got the sensation of suddenly needing to go to the bathroom.

I was at a baseball game and I started getting nervous. After about an hour, things had "calmed" down I was REALLY tired but my heart had stopped racing.

Is this a symptom that happens or is this in my mind?? Was this a panic attack?

Thanks

So, went to the ER tonight with weird facial swelling ("idiopathic"), and some weird bad gluten-y symptoms that were not hang out at home sorts of feelings.

Funny moment: on check in with "triage", "....so, wait, you KNOW you have Celiac, and you KNOW that wheat affects you this way, then why did you eat it?" Really? Yeah, nope. Not on purpose doc.

Good news: I had a doc that was *very* interested to hear that Celiac doesn't always equal diarrhea and shocked that it took so long to diagnose (and my story was Dx was relatively fast!) He was awesome about acknowledging the things he didn't know. YAY, points. Also joked about docs not knowing the answers then taking the credit when someone else figures it out.

Bad news: After I received my prescription, I said to the doc, "Is this a gluten free drug?" He said,

"That's a very good question". He found that ER screens aren't hooked up to the internet, so I jumped on my iphone (new best friend). Wasn't on glutenfreedrugs.com, so he had the nurse call the pharmacist. I received a long list of fillers, and looked most of them up while I was waiting for it to be filled. One came back as "usually made from potato, but sometimes from corn, wheat, or rice". Now, I would *think* that wheat would need to be claimed in a drug. Am I wrong? Actually, corn or potato for that matter! Anyway, the pharmacist pretty much told me to call the company and ask.

It seems to me that very few drugs would actually contain (at least wheat) gluten or allergy folks would be anaphylaxis-ing (like that word?) all over the place. But it seemed like quite a chore to get this info...for me, doc, his nurse, and the pharmacist. No one on site could give me a firm answer before dispensing the drug! Other than "look at the list".

Shouldn't it be easier? Discuss. =D

Disney!!!!! Disney Disney Disney!

My little nephew is one of those kids that is allergic to everything: wheat, soy, corn, nuts (deathly to cashews and peanuts), among other things. They went on a Disney cruise last summer, and it was incident free! Disney "gets" allergies and intolerances.

(I'll also put in my vote again for how awesome all of the Disney resorts and restaurants are with food needs).

Best of luck.

-K

Hi all,

I need advise. We want to take a cruise in June. We need to be gluten-free as well as casein & soy free. I saw lots of posts about gluten-free cruising, but couldn't find much about multiple intolerances. I wrote to a few cruise lines (Carnival and NCL I think) and came up empty. Basically, they said they could do gluten-free, but couldn't guarantee the others because they didn't have a dietician on board.

Anyway, I THINK that Disney or Royal Caribbean might be able to accommodate, but I need the board's infinite wisdom to feel comfortable. Please help!

Thanks ever so much!

Jillian

Ok, question. I know I have Celiac, but I don't know if I have DH... I have had some intensely ichy rashes on my neck/jawline/collarbone area (both sides), and some blistery sort of things which I suppose could be DH...but since I've already gone gluten free....is there any reason why I should want a diagnosis of DH or non DH? If it is DH, won't it go away eventually?

*pauses to scratch*

Thoughts?

My daughter, age 8, was diagnosed with celiac disease in March of 2006. We've been getting down to gluten free in the food department, just starting to tackle the soaps, shampoos, etc.. Since August she has broke out in hives. Are hives celiac disease related - welty and itchy? They don't look like the celiac disease rash, but wasn't sure. She's been on antihistimes and a steriod treatment. That made them calmer, but didn't get rid of them. Is this more like an allergy? Help - she's miserable and I can't seem to help her. Suggestions on what could be a cause or a different type of treatment....

I don't know if they are related, but I did see a vague medical reference that suggested the medical community look further into it to see if there is a correlation.

A few years back I was diagnosed with idiopathic hives and swelling. They did a ton of allergy tests and I wasn't allergic to anything. I am under the impression that "nothing" causing it really means "we can't figure it out". I was on heavy crazy antihistamines, and the only thing I found that gave me topical relief was putting a couple drops of essential oil straight on the hives (tough with kids... you don't want to get that stuff in your eyes!). I found that lavender, rosemary, and peppermint all helped (some people have allergies to these things, so use caution...there's my disclaimer!)

So...if it isn't DH....that's what I know! Good luck.

I should clarify...cobalt is in a lot of products, but I don't know about it in foods (except in vitamin B12 supplements.) Nickel is found in multi-vitamins just as chromium is. Nickel naturally occurs in many foods and water (tap water especially), and at natural levels is supposedly harmless. Canned foods have higher amounts of nickel, and nickel can leach out of cooking utensils into foods (so can chromium.) I have a list of foods to avoid, but it is rather long to type out here. You can do a google search, though, for more info. Like I said, I am still wrapping my brain around it, trying to figure out what amount of exposure is safe for me...I've just found this info out after struggling with many years of skin sensitivity and food allergies.

Michelle

How did you figure out this allergy?!? Is there a simple test or was it your own trial?

I find the "gluten free" labeling laws (or lack thereof) so aggravating! If something had trace amounts of peanuts in it, could it be called peanut free??

What is the status of the labeling laws? Anyone?

I spoke today with a Van's customer service representative, who advised that the malt extract in the pancakes and french toast sticks is derived from barley but that the gluten is removed during processing. She told me that the ingredients are tested at various intervals during production and that any gluten present in the end product would be less than 20 parts per million (ppm), which would be within the proposed FDA requirement. Given this information, consumption of the Van's pancakes and french toast sticks is a matter of one's own comfort level.

I've been feeling down for a few days with the whole food frustration thing (7 weeks in!)...and today bought some cinnamon brown sugar Kinnikinick waffles. I put them in my brand new dedicated toaster and.... SO GOOD! ...like, went back to double check the box to make sure, then did the happy dance good.

And, I decided the price could be easily justified (haha...keep telling myself that, right?). If you go to Starbucks and buy a pastry, it's at least 2 bucks. One waffle = a bit over a dollar.

Pour some real maple syrup on....and YUM!!!

Soy and Dairy free too!

Smiling.

Wow! Gluten-free bread and pasta at a restaurant! Now that's amazing.

Do you know if Disneyland is as accommodating? I am planning a trip for next year.

YES! I went yesterday and they were amazing. Ask for their celiac/gluten free list at city hall. If you're going to a sit-down restaurant, reserve ahead, but I was so happy to find out there was quite a lot I could eat at walk-up restaurants! Ask for a manager or chef, and with no hesitation they come out and talk to you, let you know your options, and oversee what you get! They were friendly, very accommodating, and it didn't feel like I was asking them to do a tremendous chore.

Yesterday I had rice pasta with marinara for lunch, and a hamburger (with gluten-free bun!!), and fries (cooked in a dedicated frier!) for dinner. They also have pizza (that was in tomorrowland). This was my first real outing like that since dx in mid February.... I was so excited I almost cried!

There is also fresh fruit available all over the park. Not cheap, but where there is!? =)

My bro has kids will all sorts of complicated allergies, and they've had GREAT experience with all things Disney (even their cruises).

Cheers.

Yay, three of us. =) haha...I'm sure there are more. I've picked up a couple of good cookbooks since my dx in February. Just went to Disneyland yesterday....they were AWESOME! They have a list of foods you can eat, and the chefs come out to talk to you when you request gluten free.

I had a bad experience at my last Pei Wei outing =( but, I'm considering trying PF changs. I've heard good things about them recently! Shopping at Henry's has been great, too now that they have gluten-free labels up.

I'm considering going up to the Celiac conference in Pasadena next month since it's so close.... Open Original Shared Link

Activa is not ok... most of the links I found were old, but many of them indicated that there was either cross contamination or that the flavorings are not ok! So, you should definitely replace that in your diet.

Hang in there! Most of us here have has plenty of trials with patience and frustration!