mela14

It's much easier when you can make your own food. This way you know exacty what you are getting. It takes the guessing out and there's less risk of accidental ingestion. You'll have to get into a routine of making your wond food ahead of time and bringing it for lunch and snacks.

Good luck!

I think you were gracious enough! Don't sweat the small stuff...i'm sure it was a lovely gift but imagine how your boss would have felt if you ate them, got sick and then couldn't go to work! I'm sure he would be upset that he didn't put more thought into the gift he gave you.

I think you were very polite!

I just started to question my body creams. I've been trying really hard with my diet and have been having other dietary challenges. Last night I decided to take a hot bath (a quick 5 minutes!) and the put on this new body lotion I got for my birthday. i wasn't having body pain but woke during the night with horrible muscle pain and a migraine. The only thng that was differnt was this new body cream. I tired to contact the manufacturer (givenchy) on line but was not successful. I am starting to think that there must have been gluten in there that could have caused me to flare so badly. I still feel horrible today. I feels like I've been glutenized...without the stomach issues. I'm just not sure anymore but I'm starting to think that it could be a possibility.

I've heard of people getting sick from inhaling it if they are in a bakery that is using hi-gluten flour. This lotion had a very strong scent that even my husband commented that the entire bedroom and sheets smelled of it! Who knows....I am so sensitive to scents that perhaps this triggered a reaction. I threw the PJ's in the wash and tonight I will change the sheets! I don't want to take any more chances! It's not worth it.

As for the deodorant.....I honestly don't know waht to think but if given the choice betwen gluten-free or not....I would opt for the gluten-free.

Good luck!

We are all still learning so don't beat yourself up!

Everyone has different reactions. I get the gut pain but worse of all is the body pain, fatigue, vertigo, racing heart.

Sometimes gluten will just slip in there but as we learn to scrutinze it will get better.

Another thing I learned is that you can get it from lotions and creams. At first I thought this was a little far fetched for me....(i guess I was still in denial)...but as I watched my diet more closely I found that certain body creams cause me to react violently with muscle pain, migraines and fatigue. Hang in there and give yourself more time. It is about 5 months for me and I am still trying to get it right. The good news is that at least we now know what we are dealing with so we can target it better! Do you think you might have other intolerances? For me soy, dairy, eggs are big killers (to name a few) that cause different bodily reactions!

OH.....for me... since going gluten-free the diahrea has stopped and I have been able to put on some weight...yeah!

Take care,

thanks for all the information. soy is a big killer for me! Dairy and eggs do me in too. they just make me so sick...but soy destroys me! The bread that I have been buying has none of those ingredients. It is made with white rice flour, yeast, guar gum and a few other things.

I am making sure the tuna or canned things don't have soy either...so far so good but I am not a big tuna eater.

I once had steamed chicken from the Chinese Restaraunt that made me deathly ill. I'm sure it was the broth

I recently bought some sugar sweetened banana chips that have coconut oil and banana flavoring. I think I'm better off not snacking on them now. They could be adding to how poorly I am feeling! I'll have to be more careful of the word flavoring.

I have also been having a problem with roasted nuts. I had raw cashews which were fine so decided to have roasted cashews in canola oil which made me sick. The nutritionist feels the oil is too much for me now and told me not to have oil on anything...just a drizzle of olive oil. she wants me to continue with the raw nuts for protein.

At this point my gut is shot! but the reality of all this is sinking in. The thing that messed me up was the dr. telling me I didn't have celiac. she sort of dismissed me as a patient. Of ocurse then I started to second guess myself.

I now that i have no choice but to try harder. There are too many wasted days because of this and I just feel so sick most of the time.

I think I will continue to work with this nutritionist as she is the only one so far that has a clue. Hopefully with some hard work and time I can start to add back foods. Right now...my diet is limited. I will just have to try harder at reading laebls and educating myself.. ...between the gluten, soy, eggs, dairy, peanuts, etc it is so hard....but intentionally eating it will make me sick. so that's out! I have to try harder at not letting it slip in there! I really want to get my life back and not live with this pain anymore. Especially the day to day struggles of accidental ingestion through lack of knowledge. It gets my muscles and every inch of my being! I t makes me feel poisoned.

Today was rough..........I had my crying session but then pushed myself to get out for a few hours. the evening was spent resting and thinking........

I don't really need a test to tell me how i am feeling .but I think it wouldn't have made me second guess myself....I guess when you hear from doctors for years that it is all stress and that you need a shrink you start to believe it.....who knows they may indentify more genes that are related to celiac but while that's being done I can't make myself sick waiting and not adhering to the diet.

it doesn't make sense.

Maybe I can make tomorrow better by being more diligent.

thanks for all your help,

hang in there

I just spoke with the nutrionist at Columbia. She said to stop eating the rice as she feels that I am reacting to it. She said that we can try to bring it back a little bit at a time later on.

she said that I need to be more diligent with reading labels and avoiding gluten regardless of the test results. She said that she has several people who tested neg for the gene but still react violently to gluten. she said that I need to treat this as if I tested positive. she further said that the endoscopy was done at 5 months into the gluten-free diet and that the results were not valid for her and that they have not yet identified all the celiac genes. The 2 genes I was tested for are the more common ones.

she gave me a lot of tips on preparing foods and we went over the York food allergy testing. anything that I tested strong positive to ...I need to avoid. All the others we are going to try an allergy rotation diet....but for now they are out as well.....just until the gut simmers down.

she said that she didn't think I needed to do the Enterolab testing and spend that extra money for the stool gene testing. Either way, I have to scrutinize for gluten...as I get so sick from it. The other foods that I react to are common allergy foods for celiacs: dairy, eggs, soy, peanuts, potatoes. We are going to try to work around them.

She's really very good and I felt a little better after speaking with her but broke done while explaining things to her. I am just wiped from all of this. Hopefully if I get my diet a comfortable point some of the muscle pain might diminish. The muslce pain is always terrible after an accidental ingestion.

Oh well.............onward!

I just got off the phone with the Nurtionist. that partiuclar flavor of Rice Dream Frozen Desert is gluten-free....some of the others are not. I checked before I bought it.

anyway, after speaking with her for 45 minutes, she said to stop the rice for now. It is too much for me and I am reacting to it. It also showed up on my food allergy testing (done by York) as a low positive...so for now it's out. We also talked about the white rice toast and I am going to stop if for a while and have a banana and some raw cashews which I tolerate ok.

I discussed my biopsy results and gene testing results. She said that the biopsy was done 5 months aft4er being gluten-free so she wouldn't give it much validity. As for the gene testing she said that they have not yet identified all the genes with celiacj adn just because I do't have one of the 2 genes they tested for doesn't mean I am not reacting to gluten. She feels I should act as if I tested positive because I am reacting so violently to it anyway! My intestines although seemed ok with the biopsy....are angry and I am not tolerating a lot of foods. She said they need to be babied....no oils either. Just a little oive oil. We talked about what to avoid and how to prepare certian foods to make them easier to digest. I have already learned a lot from her this morning. Of course, the stress got to me and I cried while on the phone with her. I just feel so poorly and am trying so hard but am hitting roadblocks all the time. I guess if it were just the gluten I could concentrate on that one thing....it's all the other things that are doing me in! right now everything is an uproar again and I am exhausted..............

In the meantime the Zelnorm is out too

thanks

Whenever I ingest gluten or anything else I am intolerant too my heart races. It happens right ater eating it and takes a while for it to go away. I get light headed and dizzy. It's a weird feeling!

I usually make my hubby put his hand on my chest to see if he feels it too! most of the times he does..

I think it's all part of the "allergic reaction".

I use this as a clue to not eat whatever caused it anymore.

good luck!

I have been having such challenges with my diet.

I have been trying to keep a balanced diet and actually have a good appetitite. the things is that I have been running into a lot of trouble with different foods.

I posted last night in the medications sections about Zelnorm. I thought that it was too aggressive and making me more bloated. I then took a hard look at what I ate last night and realized that I had white rice which I think is what is making me soooooo bloated! It was horrible. I was distended to the point that my tummy was tight and hard.

I also had Rice Dreams frozen desert (less thatn half a cup) but I am sure that it didn't help the situation.

I've also been noticing that when I have my gluten-free toast in the morning it also makes me bloated. I kept thinking it was my coffee so I stopped it and I was still bloated. Then I stopped the fruit spread too and I was still feeling bloated and muscle achy.

Yesterday I didn't have the toast ( not because I was watching the rice...just because I didn't feel like it). I had just a banana and it was better...no coffee either...so no milk!

Does anone else have any problems with rice? When I was keeping a food diary with my old nutrionist we noticed that brown rice was making me bloated and sick. She said it was because it was too fibrous for me so I stopped the brown rice. I haven't really been having white rice so I never noticed until I made it last night for the first time in months!

I just don't know how to handle my diet anymore or what to eat. I try to maintain some sort of variety and nutriion but the truth of the matter is I am better off when I don't eat! I aws so sick during the night because of this and this morning I had to cancel an appt at Columbia Presb with the nutrionist because I feel too sick to make the drive. Hopefully, they will call me baack and let me do a phone appt. so far, this morning I haven't been able to get through to them and have left several messages....oh well

I think I will have to find someone in the Freehold, NJ area.

any feeback on the rice problem? Do you think that could be it?

I might as well add it to the many intolerances on my list. I am losing my mind over this and feel so bad physically.

After having a terrible night sleeping.......this morning is a killer but I am racking my brains out trying to figure out what happened.

I did not take the Zelnorm this morning but after much though I realized that I did not add that I had white rice with my dinner last night! I haven't had it in so long and now I remember why........it was making me bloated ans sick!

It could also be the reason why my white rice toast in the morning makes me bloated but nothing like what happened last night!

OOPS...I also had Rice Dreams frozen desert as a treat while watching tv last night! ( i stopped having that a while ago too.....because i thought it was the chocolate flavored one doing me in) I had the vanilla last night.

does this mean that I have to eliminate rice too? I feel so awful today that I cancelled my morning appt with the nutrionist...the drive is too far to make feeling the way that I do. Hopefully she will let me do a phone appt. I will call her now.I already know the answer about teh rice....no way I am having it but my diet is getting more and more restricted!

what is going on?

Does anyone have any experience with Zelnorm?

I was taking half of the recommended 6mg dose once a day. It seemed to be ok.

I then upped it to 3mg twice a day. I was cutting the 6mg pills in half as per dr instructions. He actually wanted me to go back to once a day after my symptoms quieted down a bit.

Here's the problem....I was away for a few days about 2 weeks ago and did not have my pill cutter so decided to just take the full 6mg twice a day. I have continued with that same dosage thinking it would be better for me. I've been starting to get really bloated after dinner...especially tonight. I don't htink it was the food but not sure. maybe the zelnorm is causing toooooooooo much movement!

I had grilled chicken...(indoors in the pan/olive oil) cooked plain carrots and an artichoke ( cooked stove top). desert; 2 figs (the ones in the plastic wrap...nothing added but potassium sorbate) some raw cashews. It's not about 1.5 hours after dinner and I am sooooooo bloated and distended! My abdomen looks tight! My husband thinks the Zelnorm is probably too strong for me and causing too much agitation with the intestines. Has anyone else had this happen? Did I eat anything that was gassy? I don't think artichokes are...but then again not sure..I never really took notice

Any thoughts?

How have they helped you? How do you take them? What do they do?

thanks,

Mel

hi westie,

thanks for answering....so you had the gene testing done through Enterolab...at your endocrinologist's orders. Ok.... i had the gene testing done at Columbia through a blood test. They tested for 2 celiac genes. both were neg. maybe it's not as specific as the stool test.

I am see the nutrionist tomorrow...then a nuerologist next week. My fibro and fatigue have been bad and I've been having a lot of sizzling, tingling....pins and needle like sensations. the sizzling is sometimes unbearable.

My "urologist" prescribed neurontin and effexor for this( because of IC and vulvodynia) but I want to make sure with the "neurologist" before I take it. Next i need to do a check up with a new endocrinoligst. I just don't want to start popping pills...i don't normally react well to pills and want to limit what I take.

there are so many things going on. I believe it all came from a series of traumatic events too. I just want to get to a point that each day is not a struggle. I feel that I am fighting so many different things. Food being the biggest one...with all the different intolerances.

Oh well......thanks for your input. I will take it all in and try to make the right decision for myself.

One thing I am going to do for myself these next few days is go off of coffee (if I can) or at least drink less of it. i think it may be adding to irritating my gi tract. Even though i don't drink a lot of it...the little bit may be bothering me. Boy do I love the smell of it though!

Take care and feel well,

thanks westie,

I will email enterolab and discuss the gene testing with them.

You said that you had positive antibodies (which I also have) and positive gene. Was the gene testing through Enterloab or your endocrinologist?

I am still feeling so poorly and don't know who do go to. I have an appt at Columbia with the Nutrionist there this Tues and then and appt with a Neurologist next week. I can't take the tingling and sizzling ang burning that I am getting. It seems to be worse after offending foods. Just not sure about anything anymore. The fibro is in a flare and try as I might with my diet....I am still having reactions.

Take care,

I'm curious as to what happened to your next door neighbor?

Dr Lee even suggested that I could be getting intestinal infections because of my poor immune system. She said that most people do not react to the small amount of bacteria on food but that I could be getting sick from the tiniest amount on MY food. not sure what to think anymore. So many on this board have benn offering good advise. They even suggested the Enterolab gene testing as they do a more extensive test. the blood test I had done only tested for 2 celiac genes and Enterolab tests for more. The thing is....it's not just gluten that is making me sick but so many other things. I try to be so careful and then my gut gets so irritated. That should be the worst of it....it's the horrible toxic feeling I get for days after eating something that I shouldn't have unknowingly.

I'll be seeing Ann Lee this tuesday...and bringing food allergy bloodwork that I had done through York and some that my fibro dr did. I'll also bring an old food diary and see what she has to say. Mu gut is raw again this morning and I was so careful with my meals yestereay. I actually felt ok at one point but then things did not sit well after lunch. I can't figure this out!

Thanks for your response.....what was your neighbor finally diangosed with?

I guess you saw that I had lots of surgeries too! Most of them were to remove adhesions which were formed after my first surgery...(they accidentally severed an artery)....which was one big botch-up!

take care,

Getting sick on purpose makes no sense to me. I reserve those times for when I am out and accidentally get hit with something!

My husband threw me a surprise bday dinner this weekend. it was so nice. I made sure I spoke with the waitress and ordered my plain food while everyone else had this beautiful meal. I was so proud of myself for doing so well and happy that I ate the things that wouldn't hurt me and I would feel ok the next day. i was even able to socialize with my friends and had a great night!

Then it hit! I did everything right....we even went out dancing afterwards and I didn't even order a drink. i woke up feeling sick. the gut started in and all the other symptoms followed. I spent the next 2 days in bed with vertigo, muscle pain, stomach pain, racing heart and fatigue. I was so out of it the only thing I could do was lay on the coach all day.

It's a good thing I ate all the RIGHT things! Imagine how worse off I would have been if I sat there intentionally eating gluten. I hate having wasted days probably more than the fact that I feel ill. I just want to do so much more and I can't do it if I am feeling sick all the time.

try to stay focused and positive. There's so much more to life than just eating a piece of cake. Eating gluten-free will only help you to feel well so that you can do all the other thngs that make you happy!

good luck,

Thanks for all the helpful information. I think that the next step would be to test with Enterolab...just for my own peace of mind.

I am still continuing to be gluten-free regardless of what the drs told me. I just don't feel well when I have it. It's just the fine tuning that needs work and avoiding the many other intolerances!

I called Columbia Presb and spoke with Ann Lee the nutritionist there. she is great. I told her of my results and what has been going on with me. She seems to be saying the same thing that all of you are saying....I am probably intolerant to gluten along with other foods. She also said that not all the genes have been identified in celiac and that the biopsy was done too long after going gluten-free to be of any value.

so....back to basics....and no gluten!

I made an appt to see her next week and after that we are going to do telephone appts as it is a bit of a hike to get to her and would turn into an entire day event!

Thanks for all the info.

One more thing. If i do the Enterolab at this stage of the game do you think it would be affected by the fact that my diet is gluten restricted? Also, today I received my immunoglobulin infusion so my IGg levels will be back up to normal. I will also have other antibodies from donor IGg that might affect my overall IGg tests. For example: I've never had the pneumo vaccine or pneumonia but when I am on infusions I test positive for the antibodies. My dr said this was because of the IGg replacement that I receive which is pooled from LOTS of donors. My IGA is another story. It is ALWAYS low...and there is no replacment for IGA. What I am told is that you cannot give IGA as it would cause an allergic reaction. so what you have is what you get. My IGA levels are low......so I'm not sure how that would play out with making any sort of assessment with the Enterolab results. How iwll that affect the results? would I just be wasting my money?

sometimes this just gets to be too complicated that I feel why bother....just do the diet. On the other hand.........with all my other health concerns and the need for well domented numbers....I fele that maybe I should do it.

OH well................

tomorrow is another day.....I'll have to try a little harder in avoiding other foods that I am intolerant to. Maybe it will get easier with time.

thanks,

I may do the Enterolab testing but then again I already know that I feel sick when I eat gluten. I may be one of those that don't have the gene but still have the horrible intolerance to it.....along with other intolerances.

thanks for the support.

As a lot of you know I got my results form Columbia presb. I "do not have the celiac gene so cannot have celiac disease". I was told this by Dr Lee there.

Just curious what you guys think.

I had the genetic blood test done by her last month which was about 4-5 months after going gluten-free. I also had a biopsy done at the same time which was negative.

About 5 months ago my initial blood work showed a high positive for gliadin IGg AB. That's when my dr suggested going gluten-free. This all came about at a time when I didn't know why I was getting so sick with GI problems and lots of other symtpoms.

I was also receiving monthly IGG infusions for an Immune Deficiency that was discovered a year prior.

They also discovered an IGA deficiency but they cannot do replacement therapy for that.

So, my concern is this: can the IGA deficiency be throwing off the actual results of the tissue transglutaminase test? those results came back normal when they were taken 5 months ago. And can I still have a gluten problem even if I don't have the gene? also, is the genetic blood test always 100% accurate and is it different from the Enterolab test? I was thinking about doing the gene test through Enterolab but don't want to be spending more money if it's going to be a waste of time.

I guess I am confused about the certainty of all these tests in light of all my set backs with different foods.

I did the York Testing about 4 months ago and they were right on the money with the food intolerances that I have. It just has been very difficult to fine tune my diet given all the things that make me sick.

What are your thoughts on this? I have Primary Immune Deficiency (IGG def - 3 of the subclasses, IGA deficiency and high IGM) I was told that the IGM is usually high when you are sick or fighting an infection. In my case it is always high and they thing that reason for this is that my IGM is overcompensating for the IGG and IGA deficiencies.

I was also told that with IGG deficiencies you run the risk of getting more intestinal infections...which has happened to me so often in the past. With IGG replacement it has been better though. right now, I haven't had an infusion in about 3 and half months because of insurance..but..........I am getting one tomorrow! wish me luck....I am having it done at a new hospital, new people and a new product (I hope I don't react).

Thanks guys...........don't mean to ramble ....just thought I would give you some food for thought and get some opinions. afterall, we have to be our own doctors.

Thanks Judy,

I too had positive York results for corn. The thing is that when I eat corn for dinner I don't get sick. So I tried with organic plain popcorn and did not get sick either.

When I had the Orville Redenbacher popcorn I became violently ill for days! I couldn't sleep....I had horrific muscle pain, migraines, joint pain, fatigue, stomach pain, bloating, vertigo. and racing heart. It was like a hangover that lasted about 4 days. the only difference being that I don't drink.

when I read the tiny print on the label ( i needed my glasses to do this)....it said soy lecithin. Soy is a killer for me! I react worse than gluten!

sometimes though, I react to certain meds even when they don't have soy or gluten in them.....or even dairy. When I read the labels on those meds it shows corn starch........ so maybe just the corn starch bothers me. Just not sure anymore. I try not to take any meds...although my urologist just put me on something... I'm not sure I will fill the script.

Take care,

thanks.........

it took a while...but I'm calling Ann Lee as we speak(write). I saw her about a month ago for a consult and she was great.

i was told that I don't have the gene dr Susie Lee after blood work and endoscpoy so thought it must be something else.......well. I am so sick right now and not sure how reliable those tests are!

she said that my intestines looked fine! she said that I probably have fibromyalgia ( duh... i know that I do)

but......I am still getting so sick with foods.

I am at the end of my rope and just so digusted.

Hey guys, I'm back again and feeling sick all over.

As most of you know I got the results to my genetic blood work and my biopsy results. both were negative. They were done at 4-5 months into the gluten-free diet with the exception of some accidents.

I had the tests done at Columbia by Dr. Susie Lee. she called me with the results and said the good news is that "you are not celiac and will never be celiac"..."you don't have the gene". I talked with her for a little while and explained how sick I felt. she said to work with a nutrionist for the intolerances.

so here's what happened..............after I got that news I started to second guess myself. I had some orville's redenbacher popcorn and was sick for days! Although the label didn't show gluten it did have soy which seems to be more of a problem for me. It takes days for it to get out of my system!

this weekend my hubby threw a suprise birthday dinner for me at a restaraunt. He had been planning it for months.

I really was surprised!

anway, I watched everything i ate.......he made sure they knew I had intolerances...so i didn't eat what they had.

Actually, I hardly ate. I had escarole with olive oil and garlic, some white wine (which I tolerated ok a few days before) and filet mignon (which was very raw and I couldn't eat the whole thing). Later, I took a sip of my sister's apple martini..(bad choice)

that's it! so now i am still sick 2 days later and not sure if it was the steak...they said that it was fresh although I can't be sure...or if it was the sip of drink. I was doing better and convinced that i don't have celiac attempted the sip of drink. I don't even know what was in there. If it was the steak then the restaraunt did not give my husband enough info with regards to the freshness of the meat.

this is really getting too stressful and I don't know what to think anymore. I have sooooooooo many intolerances...maybe I should just eat plain salads when I go out and bring my own olive oil. I even asked about the olive oil when they borugh me my salad. they said it was olive but it didn't taste like it so I didn't eat the salad. I have reacted to soybean oils or veg oils in the past.

yesterday was terrible with body pain, fatigue, stomach pain and bloating,vertigo and rapid heart. It was like a full blown allergic attack....but....accoridning to Columbia....the "good news ins that I don't have Celiac!"

OK..........really upset right now....at myself and at this whole thing! Gotta pull myself together for tomorrow......

I have an appt at the hospital for my immunoglobulin infusions.( for my immune deficiency).......I am still in bed today and am afraid that tomorrow I will still be sick.

Does anyone know of a good nutrrionist that I can work with in NJ(monmouth county)?

there's a really good one at columbia but it is Hike for me.

thanks,

Hey, thanks guys. I finally figured out how to get my picture up!

thanks for the heads up!

Levsin, gives me migraines.....so I had to stop. Actually anthing that contains hysocomine give me migraines.

I haven't been taking anything for it. it seems to be better now. I took a not bath and used a hot water bottle all night........and then hubby massages the area. the next day was better but I DID have to suffer all day while i had it.

the dr has me on Zelnorm right now to keep things moving and it seems to help.

I remember taking Bently more than 20 years ago.....and for some reason the dr did NOT want to give it to me now.

thanks,

got all my results.

dr says the good news is that i don't have celiac!

the biopsy and gene test were negative.

the biopsy looked good.....i had already been gluten-free for 4 months

she said that i could just have an intolerance.....but will never be celiac because i don't have the gene...

in any event i still feel poorly and am bothered by so many foods. so with the test or without it i have to really work on my diet.

nuts, soy, eggs, wheat, dairy and potatoes are all off limits as they make me so sick.

not sure how this all happened but i am so tired of not feeling well after i eat. it makes me sick for days.

right now it feels liek i got the flu.........everythig hurts....gut to muscles.

soy started it and then cashews finished me off. at least i din't have gluten...oh well

here we go again