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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Problems With Support Groups
0

51 posts in this topic

Have you have any problems or doubts with your support group?

I personally do not like the fact that somebody that has not been diagnosed

with celiac disease runs a celiac disease support group. I have seen people

that runs a group because they "feel better" when they do not eat gluten and

when I want to express myself in the group they say that I am being "too negative" when saying that I still have symptoms after being on a gluten-free diet. These people do not have the same symptoms that I have; sometimes they

look perplexed when I talk about my experiences. When I ask them, they tell me

that they are self-diagnosed, do not have osteoporosis,do not have celiac genes, etc. :huh:

I feel really bad, because these people should check themselves if they have celiac, gluten allergy or any mental illness. I am in a helping profession(with a

graduate degree) and I am scared of these people and I wonder if they are doing more harm than good.

Wise,

Diagnosed with celiac disease in 2006

DQ2,DQ8

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I tend to agree with a few of your points. This isn't a fad diet & some people just can not put their arms around someone who gets ill from a few grains of wheat..

What my biggest pet peeve is people who don't stay on top of this ever changing celiac disease, they who say but my doctor said go ahead a little can't harm you,cheaters who tell others it's okay to cheat,ones who only follow the gluten-free lifestyle when it is conveinent, & people who just got Dx'd & want to start a support group with no background knowledge or current info.

I guess I should clarify that these are my pet peeves ......not pet peeve.....

no information is far better than mis-information.....

sometimes you are just better off reading , reading & more reading on your own if there is no one person with correct info to share....you are correct to be safe rather then listen to untruths about gluten-free eating, celiac, & so on.

blessings

mamaw

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This is why I don't bother with a support group of the traditional kind. You all here are my support group ;) Those of us here run the gambit from light symptoms to major illness. Some are diagnosed & some are undiagnosed but know they are gluten intolerant & respond to the diet. The reality is that some of us have lingering issues and will for many years depending on how bad our health became prior to going gluten free.

I know from personal experience, having been really sick in my 20s, going on a gluten-free diet really by trial & error, and seeing a huge measure of recovery for many years, then 2 years ago eating gluten at levels I'd not done since my 20s, and within a year I'm so ill I wonder if I'm dying...takes me another year to figure out what the problem really is (I was having different symptoms than in my 20s) and here I am just over 2 months later and I am seeing a light at the end of the tunnel (and it's not a speeding train!)..but I'm by no means "well" yet. It's coming along nicely & some days are better than others. But rooting out secondary food allergies has been a job, let me tell you.

You are not being negative. You come here and gripe, cry and scream (and laugh sometimes too) all you like. We'll always be ready to listen. Some days I come here to remember I'm not crazy & find a bit of sanity in my day. I thank you all for that. Truly.

FooGirlsMom

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This forum here is my support group, I tried one of those brick and mortars 1 time. I get better, more precise information here than I did at that one. More understanding, a sympathetic ear when I need one and people who understand when I need to vent without making me feel like a nutcase.

I have been able to keep my sanity because of this forum. I appreciate each and everyone here.

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I agree with everyone here about this being my support group. I tried the local one but just didn't seem to fit in with all the people trying to keep up appearances of a "normal" diet when there was almost nothing I could eat. Didn't help that one of the presenters from a local hospital made so many assumptions about how impossible it would be for any celiac to follow the diet and that we were all so weak and prone to cheating and on and on. I couldn't get out of the room fast enough. I am grateful every day for this place and you all.

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I personally do not like the fact that somebody that has not been diagnosed

with celiac disease runs a celiac disease support group. I have seen people

that runs a group because they "feel better" when they do not eat gluten and

when I want to express myself in the group they say that I am being "too negative" when saying that I still have symptoms after being on a gluten-free diet. These people do not have the same symptoms that I have; sometimes they

look perplexed when I talk about my experiences. When I ask them, they tell me

that they are self-diagnosed, do not have osteoporosis,do not have celiac genes, etc. :huh:

I feel really bad, because these people should check themselves if they have celiac, gluten allergy or any mental illness.

Wise,

Diagnosed with celiac disease in 2006

DQ2,DQ8

Well, I don't have a formal diagnosis, and I don't happen to believe that you are more deserving than I of support. I'm quite certain that I feel better when I don't eat gluten, and I'm also quite certain that that it's not a mental illness causing me to believe this.

People have different lives, and I personally don't believe I have the right to judge someone else's illness, nor do I believe you have the right to judge mine.

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Just off the top of my head, I can think of two people who are widely recognized for their efforts in support of us, who do not themselves have celiac disease.

Danna Korn

Shelley Case

You don't need to have celiac disease to be informed about it and help people with it survive.

You clearly had a bad experience with one group, or maybe just one individual.

This community is a wonderful support group (I may be a bit biased). Not all of us have an "official" diagnosis, and some of us are here because a loved one has celiac disease. We are here to help each other cope.

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Have you have any problems or doubts with your support group?

I personally do not like the fact that somebody that has not been diagnosed

with celiac disease runs a celiac disease support group. I have seen people

that runs a group because they "feel better" when they do not eat gluten and

when I want to express myself in the group they say that I am being "too negative" when saying that I still have symptoms after being on a gluten-free diet. These people do not have the same symptoms that I have; sometimes they

look perplexed when I talk about my experiences. When I ask them, they tell me

that they are self-diagnosed, do not have osteoporosis,do not have celiac genes, etc. :huh:

I feel really bad, because these people should check themselves if they have celiac, gluten allergy or any mental illness. I am in a helping profession(with a

graduate degree) and I am scared of these people and I wonder if they are doing more harm than good.

Wise,

Diagnosed with celiac disease in 2006

DQ2,DQ8

I think the problem you describe has nothing at all to do with the diagnostic status of the person in question, and everything to do with his/her personality. Not saying someone is "too negative" or having the same reactions that you do or having osteoporosis - none of these things are required with celiac disease. As someone who decided NOT to make herself sick again just for formal testing after inconclusive blood tests and didn't feel like wasting money on gene tests that are far from all that helpful in diagnostic purposes, I don't feel that there is any evidence that I'm rather suffering from a mental disease, or that I'm harming people by offering support (even some of the tough love, "you're too negative" advice) here either.

I'm sorry that you had a bad experience at this particular group. Perhaps you can try another one, try a different kind of (generalized) support group, make more use of this group here, or find another path that can help provide the support that you would like.

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I feel really bad, because these people should check themselves if they have celiac, gluten allergy or any mental illness. I am in a helping profession(with a

graduate degree) and I am scared of these people and I wonder if they are doing more harm than good.

Wise,

Diagnosed with celiac disease in 2006

DQ2,DQ8

While reading your post and the various replies, I was stuck by the notion that finding and attending a support group has a lot in common with finding and attending a church.

In both cases, the leaders usually

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Someone in my local support group ate McDonalds fries in front of the group to illustrate how they were safe to eat. Then I found that he wasn't diagnosed! I can commiserate.

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My problem with my local support group is that it is not designed to be supportive of its members. Instead it is designed to be supportive of the business that offers the meeting place. Our job is to sample her food, tell her how wonderful the food is and how wonderful she is for being a gluten-free business, and then go tell everyone about her business. I understand that this is how many supports groups start, but it is annoying how clear the message is. We really can't ever give honest reviews of her products. She also spends a lot of time trashing every other gluten-free business around. Real issues are ignored, but everyone knows which kinds of gluten-free baking she's doing that month. She is a real self-promoter who acts as though she knows more than she does.

teachin4

Have you have any problems or doubts with your support group?

I personally do not like the fact that somebody that has not been diagnosed

with celiac disease runs a celiac disease support group. I have seen people

that runs a group because they "feel better" when they do not eat gluten and

when I want to express myself in the group they say that I am being "too negative" when saying that I still have symptoms after being on a gluten-free diet. These people do not have the same symptoms that I have; sometimes they

look perplexed when I talk about my experiences. When I ask them, they tell me

that they are self-diagnosed, do not have osteoporosis,do not have celiac genes, etc. :huh:

I feel really bad, because these people should check themselves if they have celiac, gluten allergy or any mental illness. I am in a helping profession(with a

graduate degree) and I am scared of these people and I wonder if they are doing more harm than good.

Wise,

Diagnosed with celiac disease in 2006

DQ2,DQ8

1

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I think support groups are only as good as the culture of that individual group, regardless of the reason for the support group. I was in a breastfeeding support group and it did not help because it was a very strident group. My friend went to a different one, and had a fabulous experience because her group had a different tone.

I am being careful as I check out local groups for Celiac. Luckily, one also has an email group, so I can figure out the tone before jumping in. I think support groups can be invaluable for learning and exchanging info, but the amount of support depends on what that person needs and has to give and how that fits into the group culture.

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Hello, everybody, happy new year!!!! :D:D:D

Thank you for answering, my god, I would never imagine that you would have so many answers for me. For some

of you, I know, I understand you, but I cannot

support self-diagnosed people, I think that they can do more

harm than good( they can do a lot of harm to themselves) I am going to be explaining myself.

A person that is self-diagnosed is not going to take

the disease seriously, because unconsciously the person

has doubts about it. Let me tell you... when I gave my

support group a wonderful idea that would benefit the

entire celiac community(related to community work pro

celiacs)the group leader(who is self-diagnosed with

no osteoporosis or celiac genes, I suspect she does not have the disease)rejected my idea saying that that was

not the purpose of that support group, because the

purpose was to "create awareness" about the disease. This

self-diagnosed people do not feel a sense of purpose,

this is psychological.

Other thing that I have to mention because I have to be honest with this forum , hoping that the moderator that reads this does not crucify me :unsure:... the first time when I joined the support group and I introduced myself, the leader of the group asked me, using irony,

ohhh, do you have celiac??? And the other person that was

registering the new people asked me the same question

in a very offensive way, too. I did not get it at first,

but I realized later, that it was maybe because I was the first Hispanic of the group, being in a state that is

famous for its laws that don't favor immigrants.

Yes, in the revised edition of Celiac Disease, By Dr. Green, he mentioned that they have seen Cubans and Puertorricans being diagnosed with celiac. It happens

that I am from Puerto Rico, born and raised there, but

I decided to come to US to do graduate work and I decided

to stay in the states. I have been reading a lot about my disease and Puerto Rico and I discover that Puerto Rico is one of the places in the world with high incidence of diabetes type 1( link with celiac?) and I dicovered also reading a book on gluten-free diet that

an American doctor on a trip to Puerto Rico, in the

beginning of the 20th century, had noticed that when the

country men in the island ate wheat, they got sick(another link with celiac,I am not talking about tropical sprue).

Leaders in support groups should understand that when

people are diagnosed, they look for support groups, looking for "s-u-p-p-o-r-t"; this disease is

not easy, you lose a lot of the social contact, because

of the nature of the disease that isolates people. If we look at the studies linking social phobia with celiac disease, you will understand this well. One of these days I will get into one of the forums to discuss this

study done in Europe. :rolleyes: Again, thank you for your answers.

A big hug to everybody. I love you. :)

Wise

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Well, support groups is one thing I don't have to worry about since New Zealand Coeliac Society does not recognize gluten intolerance and will not let you join without the

'official diagnosis', another case where support groups are doing more harm than good. And there is no Gluten Intolerance Group here. So this board is my support group, and a great one it is too, because the main criterion for posting here is that you obey the board rules :o It matters not who diagnosed you or how - the only thing that matters is that gluten does you harm and your are seeking the collective wisdom of people who suffer as you do. And believe me, with psoriatic arthritis and multiple food intolerances, I take this disease very seriously.

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Well, sadly, due to the ineptness of a lot of physicians, I think the majority of people on this board are self diagnosed, including a lot of the moderators, so you may not care to hang around with us, either. But good luck to you dismissing help from caring people because they do not meet your self-defined minimum criterion.

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I cannot support self-diagnosed people, I think that they can do more

harm than good( they can do a lot of harm to themselves) I am going to be explaining myself.

A person that is self-diagnosed is not going to take

the disease seriously, because unconsciously the person

has doubts about it.

I am sorry that you have had this problem. Also discrimination due to being Latino(a). In my experience many of the self diagnosed people are those with the most serious symptoms who take the diet most seriously. Many are not diagnosed because they were too sick to stay on gluten while waiting for a biopsy. As soon as they had an idea of what the problem was they got off gluten immediately. They refused to go back to gluten for a biopsy because it would make them too sick. I think that you are showing your own form of discrimination against self diagnosed people. Just because you met some who did not take the disease seriously doesn't mean that all do.

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I remember going to an "informational" support session (it cost $25) at my local hospital after I was formally diagnosed. The stupid woman not only did not have celiac disease... she kept calling it "celiacs" and spent more time talking about her "fung shue" (sp?) business and how rearranging our furniture would help us!!

She handed out a food list that anyone could have found on the internet and served the most awful gluten-free brownies I've ever had!

The poor woman next to me was so desperate for answers to her daughter's issues, I wrote down this website for her and told her HERE was where she'd find answers to any of her questions.

I left 1/2 way thru the ridiculous session, asked for, and received a refund of my $25! The woman at the educational dept. of the hospital said many had demanded their $$ back!

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...

A person that is self-diagnosed is not going to take

the disease seriously, because unconsciously the person

has doubts about it.

...

when I gave my support group a wonderful idea that would benefit the entire celiac community(related to community work pro celiacs)the group leader(who is self-diagnosed with no osteoporosis or celiac genes, I suspect she does not have the disease)rejected my idea saying that that was not the purpose of that support group, because the purpose was to "create awareness" about the disease. This self-diagnosed people do not feel a sense of purpose, this is psychological.

On the first statement, I couldn't disagree more. I don't consider myself formally diagnosed since I didn't get the biopsy, but I - and my husband - do not have doubts about it. Do some? Sure. But celiac diagnostic status does not determine a person's personality.

On the second statement - so you found a group that didn't have the goal you wanted it to. I teach yoga classes and have had students give me some great idea; but they are not what I'm teaching. There's nothing wrong with the idea, but it's not a part of what I am intending to teach, so I don't use the idea. Doesn't mean that the idea was bad, or that I'm a bad teacher, just that there is more than what one person - or group - can offer. So that group didn't want to implement your idea - form a group that will.

Sense of purpose has nothing to do with diagnostic status. I have a sense of purpose behind teaching yoga. My husband has a sense of purpose behind playing WoW. A friend of mine has a sense of purpose behind dog rescue. We all have different purposes, and just because you are diagnosed with something doesn't mean you have to be an advocate for it. (I have no interest, for example, in being an active, community advocate for vulvar vestibulitis or fibromyalgia. They are worthy interests and things to support, but I have other things that I would prefer to support. Doesn't mean I'm wrong, it means I have my own interests.)

Since this is such a bad fit for you, consider starting your own group for others who are looking for something more like your group.

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Have you have any problems or doubts with your support group?

I personally do not like the fact that somebody that has not been diagnosed

with celiac disease runs a celiac disease support group. I have seen people

that runs a group because they "feel better" when they do not eat gluten and

when I want to express myself in the group they say that I am being "too negative" when saying that I still have symptoms after being on a gluten-free diet. These people do not have the same symptoms that I have; sometimes they

look perplexed when I talk about my experiences. When I ask them, they tell me

that they are self-diagnosed, do not have osteoporosis,do not have celiac genes, etc. :huh:

I feel really bad, because these people should check themselves if they have celiac, gluten allergy or any mental illness. I am in a helping profession(with a

graduate degree) and I am scared of these people and I wonder if they are doing more harm than good.

Wise,

Diagnosed with celiac disease in 2006

DQ2,DQ8

Your post makes me really mad. I am sorry to hear that you were being discriminated against, but you have just done the same to ME!!!

You honestly believe I'm supposed to poison myself and risk long-term health consequences for a couple months to get a piece of paper that tells me what I already know - that I need a strict gluten-free diet? And why do you think you're smarter than all four doctors who have told me I should not harm myself by eating gluten for a largely meaningless test result? You don't have access to my medical records, my history, my family history, or anything to evaluate the accuracy of my self-diagnosis.

I'm sorry, but you need to rethink your attitude against self-diagnosed celiacs. I know there are crazies out there, but many of us are every bit as celiac as you are, and get every bit as sick from gluten even if we don't have a lab slip to frame and hang on the wall or didn't choose to pay for an overpriced and largely meaningless genetic test to put in our profiles.

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I think I see both sides of the coin here. I have gotten tremendous information and encouragement from many people here including self diagnosed, those who thought they might be but later found out they weren't but felt a part of this community anyway and had a better empathy for those of us who are now lifers, from officially diagnosed, from supportive spouses of or parents of sufferers. It is a wide open community here that is well moderated and full of people who RESPECT each other. I have made foolish statements in trying to understand this whole thing and have had almost nary a harsh word whereas in other forums I would have been ripped and trolled and who knows what. This is a uniquely compassionate place. I have had bad experiences in support groups and have chosen not to participate. It seems that Wise has encountered a very negative experience in a face to face situation with a seemingly insensitive or ignorant trend follower. I am going to go off the deep end and out of my experience zone to also note that she, being Hispanic, might have had to deal with subtle or not so subtle episodes of discrimination and that this mix of factors made what might have been a merely annoying situation into one that was downright insulting.

I think we all understand, on some level, the fact that it is hard to get people (let alone doctors) to take our complaints and ailment seriously. I think about a lifetime of being told I wasn't really sick and it must all be in my head. It's complicated enough and I think that the good folks here who are self diagnosed because of whatever reasons might just feel this same dynamic of not being taken seriously.

This is a big place with good people where cooler heads prevail. I think time will help us all understand this better. That's one thing I didn't think I had any more of three years ago.. time.

Peace,

Chuck

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I would not think twice about running a support group and I don't have a gluten intolerance nor a celiac related condition. As long as I had the most current information and was willing to help as much as I could.. oh, wait. I am doing that HERE!!!! lol!

Bringing awareness and offering real help and hope to others is a good thing, in my book.

My daughter only has a blood test that confirmed allergy/intolerance. She would have to go back on gluten for many days to be tested by an invasive procedure. The ONLY concrete evidence she has that there are problems with certain foods is by the way she feels. She is also Hashimoto's and has been for five years. After testing positive to mono awhile back, we were convinced she was exhausted (fell asleep at traffic lights in her car) due to that while all this time it could be due to gluten/diet! But NOT ONE doctor would test. She went through an awful experience before the doctor in 09 tested and found an "intolerance" to gluten and an allergy to wheat! We stopped all gluten/wheat/rye/barley and she is BACK on the dean's list thru management school, while working odd hours!! YAY!

But anyone that would take time out - volunteer their services - to get the information out? I would like to say thank you. :)

ETA: Can there be actual physical damage or harm by NOT eating the products passed off as nutritional today? Really? Forget the gluten for the moment, think about the additives, preservatives, the bromide on most baked goods. By informing just the general public would be helpful, imo!! :) And I read somewhere that "No humans fully digest gluten" Could it be all the other "junk" mixed in too that we are getting sensitive to? Food for thought

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I don't do real life ones, I don't know if they could take the beatings I would administer with the cane I used to have to use to walk with, if some clown told me I was being a lifestyle dilettante moshing on their Serious Auto Immune Disease diagnosis.

Then I would sneak out to the parking lot and chock their wheels with a loaf of Ener- G. That would show them. Tapioca. It's not just for pudding. B)

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So I can see where you are coming from. I would hate to attend a support group with someone who only thinks they are Celiac. I myself am not Celiac, according to a blood test at anyrate, but I do have an official diagnosis of gluten-intolerance, after my doctor saw what the diet did for me. But I think, correct me if I am wrong, your problem isn't the fact they ain't diagnosed with Celiac, its that they are DOING their own diagnoses and then leading a group based on their experience, and not necessarily with fact. Yes, that would annoy the hell outta me. I don't want experiences when I go to a support group. I want facts and answers to my questions. Sure experiences are nice, but really in the end, this is a trial and error with your basis being made by facts.

Beyond that, I have not attended a support group, because I can only find one around here, and it doesn't meet very often. I personally would like more from a support group than "How to plan for the holidays." Or other special meetings. Not to mention the meetings aren't at a regular time. The two I noticed were on different weekdays, and I think at different times. I want something a little more reliable than that. Plus I would probably get SO fed up with them anyway. I personally just prefer to go here. The information is reliable and up to date. And lots of stories and recipes and such to help me cope. THIS is my support group. Not to mention, its easier to focus on things I actually care about here than in a live support group.

By the way, Takala, I love that "Tapioca. It's not just for pudding." I am so stealing that.

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I wish there were a support group near me or people in my area I could speak with by phone. You know to discuss where to eat, where to shop for gluten free products, maybe recommend a good gastroenterologist who understood celiac and/or gluten intolerance in the area, etc. My support group is all of you and I am truly blessed to be here. My husband is very supportive and helps me shop and eat right - but it sure would be nice to have someone close who really understood the hurdles.

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If you don't like your support group you don't need to stay. I am not a diagnosed celiac but I take the diet extremely seriously and I react to even little crumbs. I know just as much about being gluten free/celiac then any other person celiac or not, following the diet. I think if someone has enough time/energy to make a support group they obviously care a lot about the gluten free lifestyle, and try their best to help others. If they aren't working out for you, you can always find a new one or just get on with the diet without the help of others. Personally I visit this website just periodically when I'm bored, I get along fine without a support group.

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    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
    • That's what I thought!  My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that.  He never had the biopsy either.  I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all.  My doctor didn't even offer the biopsy, and said the blood work was enough.  Should I seek a third opinion?  I mean, I've been gluten free for 9 months...
    • It will prolong your life....celiac is a autoimmune disease that  causes your own immune system to attack you. The longer your eating gluten the worse it gets, I mean all kinds of other autoimmune disease, food allergies, food intolances. One day you could lose the ablity to eat carbs, or sugars, or become randomly allergic to tomatoes or corn all cause you decided not to be on road to healing I am not kidding here. I am allergic to corn, can not process meats, have another autoimmune disease that makes it so I can not eat dairy or CARBS/SUGARS.   I wish I could go back in time and go on a gluten-free diet a decade ago. Worse that could happen you could develop cancer or other complications and yes we have had this happen to a member before on our forums. Think of it like this your just changing brand here I will give you some links to some gluten-free foods, and how to order them, You can even order alot of them online this should help simplify it for you. I suggest thrive, amazon, or one of hte other links from there, Many you can order from the manufacture. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/  
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