Heather Anne

Jestgar - thanks for that! I was so frustrated at that point. It truly was ridiculous. I have filed a written complaint with the hospital's pharmacy (they said this was the only way to get things changed). This was my thought on the situation at that point in time: I was admitted around 3 and they didn't start trying to give me meds until after 5. My gut tells me that all this pharmacist was doing was looking at the information they have on file in the package insert and NOT calling the manufacturer. I still haven't heard from anyone regarding my complaint, although I filed it in the beginning of September. We have so much documentation, as we asked the midwife and OB for my records regarding the hospital medication requests and their response. We actually filed those with the complaint, mainly so we knew what to do if I ever ended up in that situation again.

What's so funny about all of this is that when I was in the hospital for a few days back in August, the first midwife wanted me to take anxiety medications. When they checked with the pharmacy, all the meds they had for what she wanted contained gluten. They kept asking for things - pain meds, etc. All came back containing gluten. They finally decided to put in an IV and give me the meds (this was in the middle of the night). The pharmacist refused to give me any IV bags for what they wanted - all of the liquids contained gluten as a binder. The next day the OB said that 'liquids can't contain gluten'. I went off on him (I was tired and in pain), citing everything from malt vinegar to an oral suspension I took that glutened me (which is when I started researching medications). So, needless to say, my husband went to the Walgreens down the street and bought me Tylenol and Benadryl (the midwife okay'd this!) and that's what I took for 41 hours of labor. (I didn't want an epidural... although that was deemed gluten-free!)

I already knew I was getting glutened from the stuff they were using internally to induce labor! I would get a headache within thirty minutes of them putting it in (they continued to put stuff in every 4 hours for 38 hours!)! This hospital is the largest in a big metropolitan area, contains an amazing children's hospital, and has a wonderful reputation. AND THEY HAVE NOTHING THAT DOESN'T CONTAIN GLUTEN?

As to band-aids - I can't use any adhesive on my skin. I break out in a rash, feel as if my limb is on fire, and get a headache! I say, do what's best for you in the situation. Not everything HAS to do with gluten, but if you react to it, it's best to stay away from it!!! Not to mention, everyone seems to react differently to gluten.

You may ask!

I was told by my doctor (my gp) that they did not need to be gluten-free if they were not being ingested! I was also told this by the pharmacist. However, I check everything because I get skin reactions to A LOT of stuff. So I figure if my skin is going to react, why not my muscles, etc. I am just very cautious. Apparently overly cautious, but I'm still getting glutened so I don't know how people say that I am to cautious! My antibody levels are still slightly elevated (more than normal, apparently) so it's coming from somewhere. Since I eat mostly unprocessed food (with the exception of broths, tortillas, etc), I don't know where it's coming from. My husband has even been gluten free at home. I've cleaned out everything, changed pans, utensils, etc. I even make my own bread in a new bread maker (I HATE baking, love cooking, HATE baking).

My regular physician thinks I'm nuts, but I don't care. There's something somewhere and I don't know where it's from! So I DO check everything. From your response, I'm assuming that you also feel that it would be necessary to check! I hope that I'm not the only one. I've just been sick so long, after feeling better for a good chunk of time, going back to being sick really sucks!

I've been gluten free since (technically) November of last year. I get a bit of cc by trial and error, things that should be gluten-free but are manufactured with gluten-containing products. But whatever has gotten me recently has been a staple in my pantry for awhile. We are pretty sure we've narrowed it down to the Swanson's Chicken Broth or spices that I've used. We really think that's what's happened with the dish I'm referring to here, but I'd love to know another Celiac has tried them and has not had trouble!

Actually, I'm hyper-sensitive and get skin reactions as well. I reacted to something marked gluten-free (topical) in the US, but upon further research they don't sell it gluten-free in the UK because it contains too many ppm for their standards. This was back in March.

Thanks Lilypad! Actually, I go through lots of steps to make sure that the meds I take are gluten-free. But no, I'm not on anything except pre-natals that I've been taking for a long time now. They are confirmed gluten-free through the manufacturer. I also take some vitamins intramuscularly, which are also gluten-free even though I don't need them to be! I'm way overcautious when it comes to this!

Does anyone know of a good gluten-free recipe for chili (meat and beans, please)? If possible, please include brands for the ingredients. My husband asked me to make mine, but I am scared to. I've always used canned beans and I am worried that they could be cc'd. Plus, there are several things in my recipe that do contain gluten! Please help!

Hmm... I am glad to see some Neutrogena products on here! I have had horrible acne since I was in my early 20s (didn't appear until then). It has been solved by my gluten-free diet! But whenever I'm glutened, I break out a few days later. Don't know why. It just happens! I used to love Neutrogena and haven't been able to use them because I didn't think they were gluten-free! Thanks for the info!

I have had cc'd Boars Head cut in the deli, even after they cleaned the slicer! Easiest way to avoid this is by buying the prepackaged Boars Head. That's what I do. In fact, if the deli counter one is cheaper, my deli will give me a discount on the prepackaged stuff because I can't use the ones they cut! They are very nice about it! I use a Harris Teeter in my area. I tried to get them to do this when I was out of town (at a different Harris Teeter), but to no avail! Oh, well! Live and learn!

Good luck!

That particular one is on their gluten-free list, so I bought it! I had an immediate skin reaction. I'm not sure if it is from the gluten or something else. I also bought it because it seemed pretty natural. I also use the conditioner (non-scented) and I am completely fine with that!

On a side note, once a week I use a dandruff shampoo that is also gluten-free (confirmed by the manufacturer) and I get the same skin reaction down my back and chest. Oddly enough, neither product has anything in common that would be considered an allergen! Go figure!

I am hoping that someone on here will reply with a list! I saw one once on a gluten/casein free site, but can't find it again and didn't print it out like I do most things! Sorry!

Good luck!

I also react to it. I get sores all the way down my back. It is annoying. Because I haven't found any products for dry scalp, I use this b/c they told me it is gluten-free but I wash my body thoroughly (with a stick sponge thing) AFTER I have done my hair! It has been working for the most part. I don't know what I'd do if it was my scalp reacting! I'm so sorry!

Good luck

My dietician, who is a Celiac patient (as well as her daughter), said that some people react to most spices because of cc'd. She told me that the only ones they used in their house for a long time was McCormick, but even her daughter reacts to a couple of their 'pure' ground spices. She has had no trouble with Spice Island. That is the one that I'm switching to, just to be safe! I've been getting cc'd somewhere and this is one of the things that are going from my cupboard!

Good luck!

Thanks! I knew that it was on a gluten-free list, which is why I switched from Progresso to Swanson's. I am pretty sure that this broth is the culprit. It could also be the msg, but I had never reacted to it before (I had that as part of my elimination diet once). I'll probably start staying away from that as well!

From now on I'm using Kitchen Basics or Pacific, as both are natural!

Thanks so much for the response!

Have you tried them yet? I used them for the first time in a casserole about a month ago. I had a horrible reaction to the casserole and the only things that weren't fresh were the tortillas, the chicken stock that I used, and my McCormick's spices. I've been trying to figure out which was the problem but ever since I've been really sick so I haven't been able to make a connection with just one ingredient! Thanks!

I also had that same reaction - the first time I put it on my face! I told my husband and he said that the smell was different. I looked at the bottle in the trash and realized that I had picked up the facial cleanser instead of the gentle wash!!! After calling, I was told that they were all produced gluten-free. But I later got a response to an email and was told that ONLY the gentle cleanser (like everyone else here was told) was gluten-free. This was about three months ago. I still use the gentle cleanser with NO problem!

Good luck!

Now that I'm feeling a bit better, I'll reply! Thanks so much for all of your help!

heidi g. - I am so sorry for your loss(es). It really is hard. I have done elimination diets before, but gluten was the one that made all of the difference. I eliminated diary at the same time as gluten and reintroduced it three months later (at the drs request) and I did fine with it. That was months ago. I may try soy next. I don't eat a lot of it though because I prepare most stuff fresh. I'm pretty sure it's cc from something - most likely Swanson's Chicken Broth. My doctor said that my villi biopsy showed that they'd healed well. I cook with chicken broth all of the time (in rice and other dishes), so that is my first change. I started using a different kind certified gluten free but it has no taste so I'm back to finding a better one! Thanks!

Austin Guy - I have, but I will again. It definitely is not dairy, but soy may be a problem. We shall see in time! Thanks.

Lori2 - I do keep a detailed food journal. I'm pretty sure that, from reading it and going over it with a dietician who's also a Celiac patient herself, it is my chicken broth. However, I am also eliminating McCormicks spices because she says her daughter has problems with some of them. I'll switch those to Spice Island. Hopefully I'll figure it out. I'll reintroduce at a later time and see if the Swanson's Chicken Broth gives a reaction that I can pinpoint. Otherwise, I'll just stay with a new stock/broth. Thanks.

T.H. - It definitely can't be oats. I avoid them like the plague! I started that when I went gluten free because I have firsthand knowledge of agricultural practices with crop rotation. Many oat fields are rotated with wheat and there is always volunteer wheat growing in those oat fields! I am just not willing to chance it! I may introduced certified gluten free oats eventually, but not yet! Thanks. And it probably is that I am super sensitive, according to my doctor. He said that I am doing everything in my power to avoid it because I do eat mostly fresh/home-cooked meals. He said to try organic/non-GMO foods, as well as getting rid of anything that I can find documentation of possible cc (mostly from places labeling gluten-free but not testing well).

Mushroom - First of all, I LOVE your name and picture! I studied fungi for years while I was getting my Masters! I had never thought of nightshades or legumes before to try to eliminate! I don'd eat nuts (I have a peanut allergy and most nuts are contaminated). Since I do have a peanut allergy, I may try legume elimination, since peanuts are legumes! I do already cook all of my own food and use very little processed or pre-packaged foodstuffs. I LOVE to cook, so this is great for me. However, I will be eliminating my chicken broth, as mentioned above, to see if that is the cause! We do go out once a month (down from once a week) to a place that is diligent about gluten-free food. But there is always the chance that I get cc'd there as well! Thanks!

Thank you all so much! Good luck to you!

I'm having the same pains, too. My new gastroenterologist told me that he believes it is from an ongoing small amount of gluten getting into my diet. I never had it before I was diagnosed. I'd been gluten-free for almost a year when it happened, with only a couple of accidental gluten exposures. It's only been in the last month. It got so bad that I went to the hospital. This prompted another endoscopy that showed healed villi but definite signs of irritation (?). He said he thinks I am one of those that are very sensitive and that I need to wait it out for the next two months without having any accidental glutening!

The pain is a combination of sharp (every time I eat) and dull/achey all of the time. It is under my left ribcage and can extend slightly below at times. It is horrible, so I completely understand! If you find anything else, please let us know!

Good luck!

My gastroenterologist totally concurs with this! A doctor thought I had Celiac (had never heard of it before) and sent me to someone who did a colonoscopy (I know, stupid, right?) to diagnose it! Of course, he said I didn't have it! After researching, my husband and I decided that I'd go on a gluten-free diet anyway! It made such a difference! Recently, I've been really ill again. I went to a new gastroenterologist and he suggested an endoscopy! We did it an the said that there was significant damage and looked like lots of other Celiac patients he's seen. But the biopsies were negative! He said that he didn't care, diagnosed me with Celiac, and helped me to figure out what has been causing the problem these last two months!!! I'm so bummed that it has taken this long to find a good doctor who is willing to look past the test results!

Good luck!

I only ask because I thought I was being 100% gluten-free. I normally have severe reactions when contaminated, but I didn't have any for the last three months. Somehow, someway I have been consuming small amounts of gluten. The only thing that I switched was my chicken broth. I was using Progresso, but switched to Swanson's because of coupons!!! That was three months ago. Now my symptoms are worse than ever, but came on slowly over time!

Thanks!

Hi Everyone. I'm wondering if it is possible to get no reaction or a mild reaction to minute amounts of gluten over a long period of time. I have a severe reaction usually, as explained below, but apparently something has been making me sick still.

This is my first time posting, so I'll try to explain the situation concisely! I'm female, 32 years old!

I was very sick last year, feeling so fatigued that I couldn't move. I'd been fatigued for the past 10 years, but it became extreme April 2010. I also started getting tingling in my feet and fingers. Oh, and terrible headaches. Worst symptom though - the excessive diarrhea, bloating, and tummy noises ALL OF THE TIME! First doctor said I was fine. Went back 3 times in 2 weeks. She told my husband it was all in my mind. She called a week later and told me my b12 was low (didn't know how low until I switched doctors and got records - it was 42!). She put me on b12 shots daily, then weekly, then monthly for 6 months. She also sent me to a gastroenterologist to test for Celiac disease (first time I'd heard of it). He did a COLONOSCOPY for the diagnosis and said I didn't have it! (Yes, I know that this is the wrong end now!)

I went gluten-free anyway, at the request of the neurologist that I'd seen for the neuropathy. He said that the prior "ultra rapid cycling bipolar" diagnosis I'd had in grad school was probably wrong too so he sent me to a psychiatrist to take me off of my lithium. I stayed on it until I'd been on the gluten-free diet for 5 months (started in September 2010). I became anal about anything I put into my mouth! And I started feeling great! More energy than I'd had in forever. I was removed from the lithium in January. I was completely gluten-free until February. I accidentally ingested gluten through cross-contamination! I had such a severe reaction to a minute amount - from my father cooking my food in the same pan (after it had been washed) - with GI troubles and brain fog and irritability! It was such a strong reaction that my husband recognized about 30 minutes after eating the offending food.

Since then, I would occasionally ingest gluten by accident - through cross-contamination ONLY, usually at a restaurant (although we would only go out once a month). The reaction was always the same - very severe!

But then things started going wrong. I got pregnant in March and we lost our first-born (still birth) at 23 weeks. I had no morning sickness until I was 10 weeks. Then I could keep nothing down and was diagnosed with hyperemesis. I had weekly growth u/s and weigh-ins. I had been 160 since right after graduate school and I dropped 25 pounds by the time I delivered in mid-August. I accidentally ingested gluten 2 times during the pregnancy, very small amounts. After the pregnancy everyone expected the hyperemesis to go away. But the nausea and vomiting never went away. It did get better. I continued to lose weight and have horrible constipation. We attributed it to a miscarriage 3 cycles (yes, I bounced back quickly and I have 21-day cycles) after losing my son.

Now my diarrhea is back, as bad as it was pre-diet. I was also having severe pain under my left ribcage. My GP said it was probably severe gastritis (I'm prone, obviously) but sent me to a different GE. However, I was going to have to wait 3 weeks. Well, 2 weeks ago I went to the ER. They found nothing. Wednesday last week I had to go back. I had gotten to the point that when I would swallow anything, even water, it would come back up within 2 minutes (usually more quickly! My GP sent me immediately to the ER. They did a CT scan to make sure that nothing was blocking the passageway and then set me up with a different GE for the following day. I went and they immediately scheduled an endoscopy for that afternoon. Here's the interesting part.

He said that I have Celiac disease (really?! I didn't know that!!! haha - why else would I have gone gluten-free?!)! But he did say that it looked like I had never been on a gluten-free diet. Now I'm concerned. Again, I'm anal about what goes into my body. Is it possible that I have been getting a small amount of gluten from something and not reacting until it became so bad that my body just started shutting back down? My GE seems to think that everything can be attributed to Celiac.

Please help! We are going to have to wait another 6 months at least before trying to get pregnant again because that's how long it took originally to get my health back and my vitamin/mineral levels up again! (And yes, I still take monthly b12 shots to keep it at a normal level.)

Thanks in advance for the help!