LuvMoosic4life

This has probably been answered, but it crossed my mind:

If a person does not have celiac, through the gene tests/ect... but they have a gluten sensitivity or intolerance, is it possiible for the body to be producing antibodies againts gluten, even if they do no thave the gene for celiac, or celiacs at all??

I was just curious b/c I want to get the gene test. At this point I"ve been gluten-free for a while so the antibody test wouldnt do much for me. If I dont have the gene, but have a huge response to the gluten-free diet, could it be possible that my body is reacting against gluten as an autoimmune response? or is it just that it is hard for me to break down and I dont have to worry about an autoimmune reaction???

I'm just starting to realize how hard this gluten-free thing is. EVen though I feel amazing, it depresses me knowing that I may have celiac (but Idont know) and that I may have to follow a super strict diet the rest of my life. WHich is fine, until the social aspect comes in. I"m a musician and my goal is to travel the world, I'm just thinking how hard it will be going to differant countries/states/places ect knowing I may not be able to even have a crumb of gluten. I"m a person who has a reaction to larger amounts of gluten. SOmetimes small amounts bother me, but say actually eating a piece of bread or some regular pasta is what makes me feel like crap, not neccesarily a small crumb....but then I'm not really sure b/c I still dont feel 100% gluten-free yet...FRUSTRATING! i will work out evetually...just cant wait to see what the doc says....

  LaurenKenzaJacob said:

I have a problem with anemia and coeliacs disease with my 5 year old daughter. She became anemic when she was 3 (nearly 4). We took her to the docs and she was having iron medicine but was still very tired and very pale. One of the times I went I begged with the doc to check everything on a blood test because I was sure there was something wrong (Iever since she was a few months old I had been regularly taking her to the docs and hospital because she was having severe stomach cramps, even a specialist childrens doc and they all said it was 'just wind' or that she was consitpated even though she went to the loo fine!!!). Anyway the tests came back and the one that signifies celiac disease came back as 300 (I think it was meant to be 20/30). So she went and had a biospy which confirmed she had (and prob all her life had) coeliacs. She was still anemic at the time and was on liquid oral iron. She kept going back for tests for her iron levels and they seemed to go up but she was still so tired. I had hoped going on to the gluten-free diet would solve all her problems, but they persisted. So the doc said he would do an 'investigation' blood test. This shows the actually amount of iron in her blood apparntly and not the superficial level the iron level was masking. I think it was the ferritin in the blood??? Anyway at the beggining of this year it was 9 (it should be between 13-30), and we carried on with the iron medicine. She's recently had another blood test and the ferritin has come back as 6!!!! This is desperatly low for a 5 yr old!!! And she has been on the oral iron medicine for over a year!! All the doc would say is 'well some people just dont absorb iron' but I dont feel thats a good enough reason. There must be a reason she is not absorbing it, this problem is continually getting worse and not better so there must be a reason for it. He said that she is obviously not absoring iron orally well so she will have to have, what he called, a booster injection. Apparelty an injection of everything (I assume he means vits and mins as well??). Now we have to wait 2 weeks for that appointment to come through from the hospital.

I feel like I've been plodding along for the last 5 years continually searching for the cause's of my daughters problems and we just get batted from piller to post with no one really wanting to sit down and listen preoperly or/and to get to the bottom of this. I dont know any other children her age who seem to have so many problems as this. It also effects her behaviour, being tired and listless and not knowing what to do with herself. I just want to make her better and healthy!!

Does anyone know of any reasons why she might not be absorbing iron? Could there be something wrong internally?? She's been on a gluten-free diet for well over a year now, nearly 18 months so I thought her gut would be well on the way to healing, but instead the problem had got worse.

Any help is appreciated, thank you!!

are you sure the iron she is taking is gluten free? I was diagnose with anemia at 17, was on pills for acouple years and then went off. A few months ago I was having problems with soars in my mouth, tiredness, always cold, pale, fatigue, feeling sick. I had a cbc done and my hemoglobin was a bit low. I went on iron pills again and I could not tolerate them, I would get so naucious even though I made sure to take them with food and no calcium/dairy....shortly after is when I found out my problems were due to gluten, although I havent been tested, going gluten free resolved about 85% of my problems....

I was actually wondering that too. say I am not diagnosed with celiac and dont have the gene for it, but I know that eating gluten causes me problems (not quite as bad as many people here if only a small amount gets in my system) would it still be damaging to eat it in very small amounts??, not purposely, but for the sake of going out to eat, and say ordering something like grilled chicken that is more than likely grilled on the same grill as stuff with BBQ sauce..ect.....

This topic was brought up in one of my posts here

I found this celiac dating web site, not too many people on it though....

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  sneezydiva said:

Do you know for sure you have an ulcer? I would think you would already have a GI doctor if you have a diagnosed ulcer. The only reason I ask, my primary doctor thought I had one--I had these awful stabbing stoamach pains that fit every description you find on the internet for ulcers, but a endoscopy did not reveal one. But the pains went away on the gluten-free diet, and reappear when I get glutened.

no, I just thought of it as one possiblity. The symptoms comes and go. I'm starting to think it may have something to do more with reproductive problems. I started having and aching lower back after goin gluten-free and some discomfort in my stomach area, its hard to tell whether or not its PMS or digestive since my pms symptoms are sometimes for 3 weeks every month...blah!

  donnal said:

I am (perhaps unfortunately!) a cardiac rehab RN so I have to "preach" high fiber, whole wheat, blah, blah. Well, since I have been doing gluten-free I have, by it's nature, cut back somewhat on the fiber intake. However, it is starting to occur to me that I get the "good ol" bloating whenever I eat berries or add quite a bit of flax or such to whatever I've made. Could I be dealing with cross contamination or just have become more sensitive to fiber? It does usually result in more active bowels (I have been labeld IBS-C). I also feel somewhat guilty as I'm not doing what I'm supposed to preach (whole wheats till they come out one's ears, for instance). I should add that I am presently on the elimination diet (no milk, eggs, corn, soy) and I don't think I had any of that except I did have about 1/8 tsp of Promise margarnine which also lists whey in the ingred (didn't look till after I ate--still learning!). Thanks for any help!

You could be dealing with CC depending on where the berries are from. I am always leary of things that are packaged or cut in stores b/c you never know what was on the surface before the fruit was placed there. Also, if you are eating dried berries in a package there may be gluten in them. I never buy dried fruit unless it is labeled GLuten free. I have also noticed though that too much of certain fruits, mostly dried, can cause GI problems, bloating and gas....its not as bad as a gluten reaction, but its enough to annoy me..

  sweeet_pea said:

I was at Sam's Club the other day and ordered a hot dog no bun. The employee proceeded to pull out a bun to put my hot dog on. I repeated to her no bun and even had another employee tell her NO BUN. I was thinking just pick up the dang hot dog, wrap it in tin foil, and give it to me!!! No I am not kidding when I tell you she walked right over to me and handed me a hot dog ON A BUN. I looked at her and very politely said I asked three times for no bun and she said with a cute little attitude "Well what do you want me to do throw it away?" UGH!!! I told her i didn't care what she did with it but I was "allergic" to bread and could not have it even touch my hot dog. When she came back with my bunless hot dog she had the idacity to say to me "Wow sucks for you to be allergic to bread that must be really hard."

I thanked her and walked away. Turning away from her I just wanted to yell at her and say sucks for me?!! YOU HAVE NO IDEA HOW F*&*#$G HARD IT IS OR WHAT I GO THROUGH JUST TO BE HEALTHY SOMETIMES!!!!!!!!!!!!!!!!! Thank you for letting me vent. LOL

OMG!! That girl serving the hotdogs just made me mad! haha

  AliB said:

Now there's a thing - a section for Celiac Dating?????

I had the most terrible stomach pain for hours every time I ate - not acid reflux but I am sure I had a hernia. My stomach was crippled, probably with an ulcer or gastritis and the most horrendous gas and bloating all through my gut - the referral process was so slow my doctor hadn't got to the point of sending me for gastroscopy (not that I wanted one anyway!).

After having X-rays, Ultrasound and blood tests that found nothing amiss, I went to my GP and insisted on a Celiac blood test which was done. Immediately I stopped gluten and dairy and within 6 hours the pain was gone. Within a week the bloating and residual discomfort had gone and gradually over the last 3 months other things have started to sort themselves out.

Although my blood test came back negative I have carried on gluten-free anyway as I am so much better for it (I have just asked for a Gene Marker Test so it will be interesting to see what, if anything that throws up). I had IBS for years along with fatigue and weight problems. After not having had a period for nearly a year (I thought I was going through the Menopause!) it started again last month, much to my amazement. After re-adjusting my diet to account for my extreme metabolic 'Protein' type which means more protein and a lot less carbs (I can't and have never been able to cope with carbs very well), my blood pressure has come down to normal so I have been able to drop the meds and I have been able to cut my insulin in half.

Why not get your Mum to sit with you and read through some of the stuff on this Forum so that she can get a better insight into individual health problems and why so many can't cope with gluten. Knowledge is empowering. The more she knows and understands, the more she can help you. Perhaps then she can really help you and support you. It is rare for someone to be having health issues like this on their own - there is very often a family link somewhere. I am sure my Mum was Celiac and I am also very certain my Dad was very gluten intolerant so it is in my family.

Whilst your background seems to be Italian, there may be other genes in the mix that are throwing a spanner in your metabolic typing. A high proportion of traditional italian food is wheat-based carbs - if you are a protein metabolic type then it could be that the traditional diet is actually completely wrong for you and is throwing your body out of balance. It's worth looking into at some point but get the Celiac/GI issues sorted first and then address that later if there are still problems not sorted by the gluten-free diet.

thanks. glad to hear I'm not the only one with those problems! yes, I want to get my mom to read through this site. only problem is she has dial up where she is---ugh! but I will eventually.

CELIAC DATING! I think that should be a section!

  ravenwoodglass said:

Can you find a GP or an Internist? If you have a number of problems you may want to consider seeing one instead of a GI. The ulcer could also be a result of the gluten, many, including GI doctors don't realize that gluten can do that also. They were my DD's main complaint at her stage of illness. She only had some esionphilictic (sp) changes in the small intestine that the doctor felt were an early stage of celiac. One thing that helped her a great deal, and myself also when I get glutened is pepto bismal, there were no side effects and it does not affect the amount of stomach acid produced so there is no rebound effect from it like you can get when you stop taking drugs that affect the amount of acid produced.

It sounds like you are going to go the gluten free route and I am glad to hear that. An internist could be helpful in assessing your blood levels for different vitamins and minerals. He can also do a pregnancy test to make sure you are not with child, a possibility if you are also feeling dizzy and have been 'active' recently. The dizzyness could be related to gluten if pregnancy is not a possibility. I lived in an off axis world for over 40 years before I was diagnosed.

I hope you feel better soon.

I have an appt. next week with a GP who is also a GI. I'm defintly not pregnant. I have always had dizziness and have a history of anemia, but this dizziness is pretty bad, and it started getting worse when gluten free. I had my cbc done a couple months back and my hemoglobin was bornerline. It will be interested to see what the doc says b/c I"ve always noticed my Gluten symptoms/GI symptoms seemed to be strongly related to my reproductive system. I have also had ammenorhea in the past. I sometime wondered if my GI symptoms were just a result of hormone imbalance, but now that I'm gluten free my symptoms are gone and I still have having hormonal balancce/reproductive problems, which got worse????? wierd...

  ravenwoodglass said:

I also agree that you should not see the doc your Mom works for.

Have you asked your GP for a referral to a GI? I would go that route or I would just ask my GP to order the celiac panel. It does not have to be a GI doctor that orders one. The time the doctor spends with his patients and his bedside manner also do not determine how many of us he actually diagnoses. I went to one of the best in my area and got a IBS label and handed antidepresants and told I could take Immodium as many times a day as I need it. I could have been a poster child for celiac at that time with almost every system impacted.

It was my allergist who had to diagnose me. After he did my very genial GI had me do a challenge that almost killed me. He also stated, and this is a direct quote "gee those weren't IBS symptoms, I wish I had known it was that bad". This doctor sat with me more than once and although I thought he was really listening apparently he wasn't.

You could also consider going with Enterolab for stool testing and a gene panel. You would not have to be actively consuming gluten for that as long as you do it soon.

thanks.

I dont have a GP at all, so my main concern is at least getting an appt. b/c I do have other issues (whether or not they are related to Gluten INtolerance I dont know.) I know the amount of time a doc spends with the pacient doesnt matter, but I also know this doc specificly deals with people with celiacs.....which also doesnt mean anything, but at this point I'm starting not to care whether or not I'm diagnosed, I just need adoctor so I dont have to keep going to the ER whenever I get sick, the co-pays really add up. I dont think I will be diagnose with anything like IBS because all of my "IBS" symptoms are gone completly when gluten-free. I do not have to agree to any drug a doc gives me and I most certainly would not allow an antidepresent to enter my mouth. my only problem right now are stomach issues that are very much the side effect of an ulcer, not to mention I didnt get my P this month and have been extremely dizzy and losing wieght, even though I'm eating twice as much...

thanks so much! all of this advice is very encouraging!

I'm definitly going to call myself , the only reason I want my mom to schedule it is b/c she can get me in sooner, she's not the only person who answers the phones there, so I have to be sure I call when I know I can talk to her. Since I am a new pacient the wait is longer to get in for an appt.. Every other place around here that takes my insurance has up to a 2-6 month wait to see a doctor!!!! I havent had a real doctor since my childhood, I've been seeing physicians assistants since then who have never been able to help me with my digestive issues, or give me a good reason for me being sick all of the time!.

I actually also thought that it wouldnt be a good idea to go to the doctor my mom works for, but she doesnt work in that office everyday, I actually am going to request a day when she is not working there and make sure the doctor keeps my information confidential. I really want to see this doctor because I know he is good. My mom says he will spend up to an hour talking to pacients, getting to know them ect ect...and GI and digestive diseases is his specialty..... if I have to go back on wheat to get the tests, I might ...just MIGHT consider it.....We'll see what he says...

I will be staying with my mom often this summer, so maybe she'll begin to understand what I'm going through better...

I was walking down the bread isle with my mom in the store. "so what breads in this isle can you eat?.....ooooo!....this is a good one!, 'roman meal wheat bread', lets look at the ingrients to see if you can have it."

Since I found out that gluten has been causing my problems, I'm really having a hard time getting people to really understand me. Even my mom who works for a GI doctor and knows plenty about medical information, just does not understand what gluten is and how I know it is bothering me. I've explained it in detail many times to her and even printed out information for her to read.

I have yet to see a doctor b/c I need to find one that i can be sure will help me, and actually, I asked my mom to make an appointment for me to see the doctor she works for b/c he does testing for celiac and specializes in GI problems. He is also a primary doctor. ( I figure why call and make an appointment myself when my mom will be the person to answer the phone anyways??) She still has not made an appointment for me and I'm just fed up b/c she doesnt realize how much stress this is putting me through. This doctor really is the best doctor fo rme to see in this area.

I've been gluten free off and on since the end of feb. and experimenting with differant foods. I've tried bringing gluten back in my diet several times, sometimes I have a bad reaction, and other times its not so bad, it just depends on how long I continue eating it for/how much, and what types of food I eat (chinese food for example is horrible, I get bloated and a migrane very soon after I eat it, and often while I am eating it)

I got really sick off of a couple of beers and eggplant type pizza last weekend whenI went out with my friends and couldnt keep anything down for over 12 hours after... I even had one of my friends prepared to take me to the ER b/c it was so bad..... Since then I refuse to even touch gluten. Even after expalaining this to my mom, she still just does not get it, and nobody gets it b/c I'm 22 years old and have been eating bread/pasta...ect my entire life, they say why all of a sudden stop? They dont realize how sick I've become off an on over the past year in college, not to mention the GI problems I've had since high school (my mom has been well aware of, but we just figured it was how I am b/c our whol efamily has the problems).

I live alone and nobody actually see's me get sick. My mom keeps asking me to come over for dinner or to go out for dinner, and I say fine, as long as I can eat gluten-free, I've even offered to cook just to show her you can eat normal foods, its not this horrible thing.... I actually just talked to her on the phone today. I got really upset b/c she doesnt realize how life changing this is (its not a big deal for me to eat gluten-free, I really like the diet, I feel so great!!! its just a big deal b/c people dont understand) So after getting upset on the phone about my health and situation, my mom says "well, come over next weekend when school is over and we will go to the olive garden and have some salad and breadsticks, you can eat that right?"

AHHHHHHHHHH!!!!! I just feel like living somewhere isolated the rest of my life and never going out again. I"ve decide if I ever decide to have a relationship with a guy, they will have to be celiac!!!!! Am I normal for thinking this way or going insane??????? or should I go to counseling??? and now I'm feeling like choosing to be gluten-free for my helath will put a burden on everyone else whenever I am involved in dinner plans, cooking...ect......I cant even imagine trying to tell my itailian grandmother how to cook a meal I can eat, she thought I was insane the last time I was there and got upset that her food made me feel sick, she thought it was her fault b/c her cooking was bad! I explined to her things she could make for me, and she said "thats rediculous!" I've avoided seeing family ever since....

the same thing happens with me with the water wieght, so you are right, thats probably what it is. I know if I eat gluten I feel fatigued and achy all over the next day, but a lot of that feeling is from the water wieght b/c there are times where I can actually press my skin and feel soarness..

  CtheCeliac said:

Of course, the first question everyone asks on this forum is are you sure you're 100% gluten-free?

I am sure. I've been eating only products produced in dedicated factories....the only thing that I could think of is my mouthwash. Its and off brand whitening pre-rinse by CareOne, but I didnt see any ingredients that could possibly have gluten...

Since I've been gluten free everyone tells me I look like I keep losing wieght. I have not been trying to lose wieght and I've actually been eating a lot more than I used to and more frequently b/c i actually get hungry and dont feel bloated and gross after eating. The thing that bothers me is in the past week I started noticeing that I look and feel thinner. I have always been a person who has trouble keeping thier wieght down and now that I'm gluten free it seems that no matter how much I eat or what I eat I look like I', getting thinner, even though the scale doesnt show it. My wieght has always fluctuated between 135 and 150 in the past few years, and the flucuation could all be in a month, usually related to my periods. Even though I look thin and my clothes are starting to be too loose on me, I still wiegh the same, around 140, but I look like I wieght 115-120. I'm 5'6.

I"ve been having some wierd feelings in my stomach lately, almost like a burning, but not heart burn type. Its definitly not painful but I notice it off and on and I sometimes feel naucious or extremely hungry even though I ate plenty throughout the day making sure i have plenty of protien and healthy fats and balance of carbs. I also get even more dizzy than normal when I stand up, its to the point where its very annoying!!!!

I was wondering if these symptoms may be the sign of an ulcer? I"ve heard that people with celiacs are at risk for ulcers. I have not seen a doctor in a long time and have not been diagnosed with anything yet. Is wieght loss or possibly a "mal- nourished" look also a side effect of an ulcer? and I was wondering what causes ulcers in someone with celiacs? I thought maybe since the small intestine cant break food down properly that this would cause the stomach to work harder/possibly producing more H Pylori??? I'm seeing a doc soon, I just have all this stuff running through my head b/c I just dont feel right, even though the majority of my major problems are gone when gluten free....this seems like an endless battle....

thanks! yes, same here. The dentist is WAY too expensive!

HAs anyone ever had this??? they are on the insides of my cheeks more towards the back of my mouth.

I did have soars, that were bleeding and a burning tounge a few months back, which is what led me into finding out I have a gluten intolerance. They cleared up when I went gluten free. I did end up having gluten this past weekend and got sick, I just noticed a few days later these very dark red, small bumps in my mouth, almost like pimples inside my mouth and they do hurt slighty if I press. One looks like it is raised and the others look flat......wierd???

Wouldn't a gene test be good in this case? I'm just curious too b/c I'm in the same situation, gluten free and refusing to go back just for a test that may come back negative either way. With the gene test it doesnt matter if ou are eating gluten or not, it will show wether or not you are at risk for celiacs.....but i may be wrong on this, maybe someone can fill me in....

I was goign to ask if anyone ever had any problem with the coffee there, but then I forgot how silly that would be to ask since I worked there (well before I knew I had a gluten intolerance). I just wanted to say it probably isnt a good idea for any celiac to consume anything from there or places like it due to CC. I'm pretty sure that even the coffee pots have gluten lurking in them. When I worked there we had to de-lime them several times a day, this required cleaning the pots and the actual machine that holds the water. I rememebr there was this long metal strip thing that we had to insert into the machine to clean the grounds and gunk out. That metal strip wasnt really stored anywhere special and in between cleaning the pots it would be places rught on the counter were where I'm 100% there were crumbs of gluten floating aroud from bagel and what not.......

just thought I'd share the info.

Also the fruit in the yogurt cups were measured right in the store in the same area donuts and bread was being baked... this depressed me now that I think about it b/c my mom just gave me gift certificates to Tim hortons *GEE THANKS MOM!*

I spellled it wrong: its "Plocky's"

I saw these chips for the first time today. They were in the convience store on my campus. I bought them b/c it says GLUTEN FREE right on the front of the bag. NEVER buying them again! I got heart burn and then gas started bubbling up in my stomach, now its moving down and into my right side causing pain and bloating-yuck! I didnt eat anything differatn today besides those. They arent even produced in a gluten free facilty, I thougt they tasted too good to be true

this is from the food network.com:

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another question:

So along with my "not careing about gluten mode" I ended up going out last night and having beer, definitly more than I should have had, but definitly not to the point of being wasted where I would be puking and in bed all day....I'm not a person to get hangovers with headaces, even if I have a few too many.

So I figured I may as well have pizza with my friends since I already had beer. I actually drank water for a couple hours before I came back, but I noticed after eating I started getting a really bad migrane. I kept making sure to have water, but by the time I got back home everything I ate came right back up. I went to sleep and woke up still feeling naucious/ face was puffy and stomch gurgling with a migrane 10 times worse. I actually had to make myself vomit, I couldnt keep water down, even though I just sipped it when I woke up. I started shaking and almost thought of going to the ER. I couldnt decide if I was cold or hot....just horrible....I've never had a reaction to either alcohol or gluten this bad in any amount....but I mustve just went over the top by combining the two. I'm better now after getting some gluten-free homeade chicken broth to agree with me. The wierd thing is my migrane let up a ton after I vomited, but its still there. I'm afraid to take a pain reliever because I was drinking last night, I know the two arent good for the liver, and having a gluten intolerance on top is 10 time worse for it.....

Should I wait longer to take the pain reliever?? All I have is tylenol. I cant even rest the headace is so bad... this is definitly a glutened migrane, I had it a few weeks ago when I glutened myself.

  48lowesracer said:

YES, I have definitely eaten gluten on purpose when I have been down in the dumps. Some people truly don't have any idea how hard it can be mentally, physically, and emotionally to have celiac disease. If you had to ask them to live a week in our shoes, I bet that they would have more sympathy and understanding!

By living a gluten free life, you are taking the steps for a BETTER life. It can be frustrating, and it can be irritating, but when it boils down to it, you only get one body and you have to take care of it the best you can.

Don't listen to the people that are making fun of you or are telling you to "suck it up". You are doing the right thing by taking care of yourself. We all slip up from time to time on our diets, but don't let that change your healthy eating as a whole. You will notice that your depression will ease the better you eat. Trust me.

Keep your chin held high, as all of us understand you, even if your friends don't!

thanks so much! and I totally agree about having people trying to live in our shoes for a week. Actually, my mom as many of the same symptoms as me. She has had heart problems and is on all kinds of meds. Since this all started she has gained a lot of wieght, but its mostly water wieght and doesnt look healthy. SHe keeps complaining of symptoms, being tired all the time, "D", "C" and bloating/gas. I seriously told her to just try a gluten free diet for a week and even offerered to help. I also wanted her to try so she could realize how hard it is to stay away from gluten, she doesnt undersatnd where I'm coming from since I found out I am gluten intolerant. WHen I started telling her what she could eat she shyed away from the whole idea and I could tell she would never follow through. I'm really hoping my blood tests/gene tests come back positive so it wil force her to get tested also. I know that sounds horrible, but I m going gluten free no matter what the outcome. I can't even tolerate gluten for more than 2 days anymore, so there is no way I can eat it for the antibody test