How Many Have Self Diagnosed Celiacs?

[Guest keegans_mommy]

I noticed, during a search that some of the members here have a self diagnosis of Celiac's because they KNOW that they feel horrible eating gluten and "don't need a doctors diagnosis". Sorry if I sound snotty, I am not trying to be that way

I have been "gluten lite" for months now as I know it makes me feel horrid but I will occasionally eat it when there is a party or we go out to eat. I then have a price to pay and sometimes the reaction isn't so bad and it's worth it. BTW, I don't have a diagnosis of Celiac's but am waiting for a blood test to come back to the GI's office. SO! If I have been "gluten lite" for so long, I am expecting that it will be negative and then I am at a dead end to this mystery of mine. I have most every single symptom that a lot of people here have described and I am feeling confident that I am one of you (LOL).

So, I am wondering how many of you have the official diagnosis and if so, what positives does this bring you? TIA!

[kbtoyssni]

I could see an official diagnosis being helpful if friends and family are doubtful of self-diagnosis. It can also sometimes help children with schools - some schools insist on an official diagnosis and a self-diagnosed child might have trouble getting a doctor's note depending on the doctor. It could also help if you're the type of person who needs medical proof to stay on the diet.

I am self-diagnosed and do not regret it at all. My life has changed so dramatically for the better that there's no way I'm questioning my diagnosis. And I'm old enough to be able to stay on the diet with no problems.

Have you considered enterolab? Even though you're gluten-lite you could still get a gluten-intolerant diagnosis from enterolab.

[wowzer]

I am self diagnosed. My bloodwork came back negative. I have had many positive results going gluten free and now small amounts of gluten make me feel miserable. I also have a little sister that was diagnosed with celiac disease at a year old. I suspect other family members have it and were never diagnosed.

[dadoffiveboys]

I am self diagnosed. My bloodwork came back negative. I have had many positive results going gluten free and now small amounts of gluten make me feel miserable. I also have a little sister that was diagnosed with celiac disease at a year old. I suspect other family members have it and were never diagnosed.

Only one of my children was diagnosed with a Gluten Allergy by the doctor then I diagnosed myself and my other children because the whole family went gluten-free.. and I diagnosed my father.... now everyone is feeling better. I also diagnosed TWO of my neighbors.. and one had NO SYMPTOMS except rash and distended belly and turned out to be CLINICALLY positive (at 3 years old too ). I feel good knowing I helped my friends and the doctors didn't know.

Good news is the doctors confirmed what I said though and it wasn't just 'guessing'. Only 3% (according to CNN) of all celiacs are diagnosed and.. those w/o celiac and just other symptoms.. who knows those numbers... probably near 0%!

[Guest keegans_mommy]

Have you considered enterolab? Even though you're gluten-lite you could still get a gluten-intolerant diagnosis from enterolab.

I don't have the funds for that testing but I have had allergy testing, both delayed and immediate. Gluten came up positive for delayed so I really thought it was just that until I started reading up on many, many posts here in this forum and realized how alike I am to most of you here! Light bulbs started turning on in my head about my life as a child and as I started to grow up. It got worse last Nov. after a m/c when insomnia/anxiety and panic attacks got worse and even attacks in my stomach and intestines got worse.

I just have the feeling that my test will come back neg. at I have been gluten lite for months now. I really do want to tell family/firends that a doctor said so even though I personally am thinking (now that I've slept on it) I don't need the official diagnosis for me. I hate lying so that isn't an option.

[EBsMom]

I could see an official diagnosis being helpful if friends and family are doubtful of self-diagnosis. It can also sometimes help children with schools - some schools insist on an official diagnosis and a self-diagnosed child might have trouble getting a doctor's note depending on the doctor. It could also help if you're the type of person who needs medical proof to stay on the diet.

All of the above are the possible down-sides of self diagnosis (IMHO.) That being said, myself and my two kids are self-diagnosed and doing just fine. My dd was the one with the severe celiac symptoms. Her pedi wrote "probably has celiac disease" on her chart, based on her symptoms, her Enterolab results, and most of all, her overwhelmingly positive dietary response. She (the pedi) was more skeptical about my ds, whose symptoms were all neurological....but she still wrote "doing well on gluten-free diet" in his chart (yes, I'm nosey - I looked over her shoulder to see what she wrote!) It's possible that my kids will choose to challenge this someday....and that's okay. Right now, when they're growing, developing and are busy as all get-out, just didn't seem like the time to deliberately feed them gluten and put them through tests to satisfy the "others" who desired a formal diagnosis (pedi and grandparents.) At this point, my dh and I are satisfied to use their dietary response as our primary diagnostic tool (backed up with Enterolab results.) As for me - the smell of bread near the bakery in my local grocery store now makes me nauseous....I don't think I need a Dr. to tell me to stay away from gluten, lol!

Rho

[ravenwoodglass]

I don't have the funds for that testing but I have had allergy testing, both delayed and immediate. Gluten came up positive for delayed so I really thought it was just that until I started reading up on many, many posts here in this forum and realized how alike I am to most of you here!

If gluten came up as a delayed reaction under allergy testing that was diagnositic. If it was done by your allergist that is a valid diagnosis. I do not show up in blood work and when I had gotten to the point where I was almost dead an allergist finally found it with an elimination diet. I wish I had just stopped there but when he referred me to a GI for confirmation I agreed to a gluten challenge, again. It wasn't like the reaction wasn't real positive to the challenge the allergist did and he wisely told me to stop eating gluten when the reaction occured but the GI wanted to do an endo 'to be sure'. Unlike the allergist when I got ill from the challenge and called I was told to keep eating it until after the biopsy. Long story short I was prostrate on the bathroom floor bleeding from my intestines on the day of my biopsy. I got my confirmation of the results from the allergist but it was at a high cost.

[Guest andie]

Hi

I 'self' diagnosed my husband and son. They have had AMAZING results from the diet.

As I have said before, there is no reason to have to explain yourself on a gluten free diet.

People we invite into our homes say, "I'm a vegetarian." and everyone scrambles to accomodate their eating patterns. In my opinion it should be no different for gluten free. Given, the gluten free is a little more challenging, but basic instruction is not hard to cook. I just say, "Meat, potatoes/rice, and a veggie." That doesn't sound too hard, does it?

Desert is another matter, but then offer to make it and take it with you!

My son is on a rep hockey team and basically that is all the instruction the other parents have gotten. Some will ask for more details but that is more because they are thinking of it themselves!

I would NEVER gluten my son for testing!!!!! He feels 500% better and that is all the diagnosis he needs.

Andie

[CtheCeliac]

I tested positive on the bloodwork but did not have the gold standard (the biopsy). The biopsy was scheduled for six weeks after the bloodwork. I was so miserable that I didn't want to wait for the biopsy to go off glutens. Within four weeks I gained 10 pounds, all gastro symptoms had ceased, and I no longer had skin outbreaks. I called the gastro office to cancel the appointment; I asked to speak to the nurse. I told the nurse my situation and she said to keep doing what I was doing. I asked for a reference for a dietitian; she said I'd be better off getting my information online. Then the week the biopsy appointment had originally been scheduled, there was a glitch in the system and I was called for a reminder. I told the person my situation. I came under intense scrutiny: "How do you know it's gluten? It could be something else. You still need the appointment." My reply: "You could not pay me to go back on gluten for the biopsy test."

A year prior to this, my brother had been to numerous doctors, and finally one doctor suggested trying a wheat-free diet, so my brother went wheat-free and gluten-lite. He had DH extremely bad and it cleared up other than minor outbreaks; he also began gaining weight. He never had the bloodwork or biopsy. It wasn't until I went gluten-free that he went 100% gluten-free; he noticed remarkable changes. (Sometimes we've had symptoms so long we don't realize it's not normal to be fatigued or have certain stool or gastro issues.) His physician recognizes he has celiac disease due to the major changes he's seen since my brother changed his diet.

I agree it's hard sometimes when you don't have the validation of testing. You could either go 100% gluten-free, go back on glutens to test, or go back on glutens to realize how bad it is that you don't need tests to confirm.

[Dandelion]

I am self diagnosed too. I've been so sick for years and the doctors could never figure out what was wrong with me. I was told I had RA, cancer, anemia, Raynaud's and a million different other things. Finally I got the "diagnosis" of IBS. Well, when my symptoms never got any better taking the medication or eating more fiber, etc. I knew I was going to have to figure this out myself. For some reason I kept thinking about this girl in high school who couldn't eat wheat. I wondered if this was my problem too. After researching my symptoms I knew this is what I had. Especially after finding this site. I felt like I wasn't crazy any more. Other people had my symptoms too. I went gluten free right after the New Year and felt so much better. Most of my symptoms have gone away for good. Some I still have. Perhaps they are permanent - such as the numbness in my fingers and toes. But my incredible headaches, sinus problems, ataxia, joint pain, ibs symptoms and extreme fatigue are all gone along with my acne, hives and itchy skin.

When I finally went to get tested I had already been gluten free for months so the blood work came back negative. This was fully expected. My gastro. decided to do the endoscopy anyway. This came up inconclusive. No damage found. But the doctor has listed me gluten intolerant because of the positive dietary response. He also said that he knows I wouldn't do a gluten challenge and that it wouldn't make any sense to do. If you feel better not eating gluten then don't eat gluten. (I love my doctor.)

I will never eat gluten again. I can't imagine going back to being as sick as I was.

[Guest andie]

Wow!

I love your doctor too!!!!!!!!

Tell him to speak to more of his colleges.

Encouraging people to go back onto gluten after a positive dietary response, in my opinion, is ludicris! For a test that is probably at the most going to be 'inconclusive'?

For those Doctors who try to encourage it, tell them to injest some arsenic for a few weeks , then we'll do a blood test and ask them if they feel better once they've stopped taking it!!!!!!!!

Just a thought.

andie

I am self diagnosed too. I've been so sick for years and the doctors could never figure out what was wrong with me. I was told I had RA, cancer, anemia, Raynaud's and a million different other things. Finally I got the "diagnosis" of IBS. Well, when my symptoms never got any better taking the medication or eating more fiber, etc. I knew I was going to have to figure this out myself. For some reason I kept thinking about this girl in high school who couldn't eat wheat. I wondered if this was my problem too. After researching my symptoms I knew this is what I had. Especially after finding this site. I felt like I wasn't crazy any more. Other people had my symptoms too. I went gluten free right after the New Year and felt so much better. Most of my symptoms have gone away for good. Some I still have. Perhaps they are permanent - such as the numbness in my fingers and toes. But my incredible headaches, sinus problems, ataxia, joint pain, ibs symptoms and extreme fatigue are all gone along with my acne, hives and itchy skin.

When I finally went to get tested I had already been gluten free for months so the blood work came back negative. This was fully expected. My gastro. decided to do the endoscopy anyway. This came up inconclusive. No damage found. But the doctor has listed me gluten intolerant because of the positive dietary response. He also said that he knows I wouldn't do a gluten challenge and that it wouldn't make any sense to do. If you feel better not eating gluten then don't eat gluten. (I love my doctor.)

I will never eat gluten again. I can't imagine going back to being as sick as I was.

[mommyagain]

I am self-diagnosed. I got sick during my first pregnancy and was diagnosed with IBS (like so many others here) but I was never sick enough to end up in a hospital. When my dd was about 18months old, my husband decided to try the Atkins diet, and I joined him. My symptoms TOTALLY disappeared during the 3-weeks of Phase 1. Well, hubby decided that he could NOT live without bread (and I found out that he had been cheating all along) and we went back to eating "normally". Of course my gastro problems came back and I decided that I had a "wheat allergy". I avoided wheat but cheated pretty often. My "reactions" were much more severe at "that time of the month" than any other time, and I blamed it on PMS. Then, I got pregnant again, and my symptoms came back full force. This time, I did some research, and found this site. I found out how dangerous it can be for a celiac to have gluten during pregnancy (much higher risk of miscarriage) and immediately went gluten-free.

I have never felt better! For me, a positive dietary response is the only testing I need.

Unfortunately, my husband does not agree. He is willing to go along with the gluten-free diet during my pregnancy, just in case I actually am celiac, he doesn't want to risk harming the baby. But, he is fully expecting me to start eating gluten and get tested as soon as possible after the baby's born. I have told him that I'll try a gluten challenge... but if I have lots of problems again, I will not be able to force myself to stay on it long enough to get the tests. We have pretty much agreed to disagree on this issue for now, and talk about it again after the baby's here.

[Guest keegans_mommy]

I'm really eating up every word in this thread! Thank you!

I just got my results today and of course, it was negative just as somebody else suggested and I suspected since I don't normally eat gluten. So I will see my GI doc in a couple weeks for a follow-up and I hope I can convince him of my symptoms. If he will listen to me I might be able to get a diagnosis of Celiac.

For now I will join you all in the "self diagnosis"

BTW-I have had 3 m/c's in the past 10 1/2 months when my symptoms really kicked up. Now I am wondering....

[aeshlea]

I have to say this topic of self diagnosis is interesting. My boyfriend and I were watching oprah one day (he likes oprah surprizingly) and jenny mccarthy was on (or maybe that is why he 'liked oprah' that day..hmm) talking about how her son's autism basically went away when she put him on a gluten-free/casein-free diet. We got to talking and wondering if a child who has autism can improve SOO much on that diet, what could it do for a regular person? How much healthier could they become? So we deicded to try going gluten free just to see how it felt....needless to say we didnt last long....BUT something interesting happened that after 4 days of going gluten free when I went back to eatting bread I had almost 2 days of extreme digestive distress you could say.....so I started to wonder....

to make a long story short my intution told me 'something was up' and I put two and two together and realized I probably have this. Then I got results from enterolab which confirmed it. My point to all this rambling is that I agree it is hard to go by self diagnosis because in this society 'nothing goes' unless you are 'officially' diagnosed by 'someone who knows what they are doing' ...as in a doctor. But what I find interesting about this whole topic is that most 'doctors' and medical websites have different defintions for this all...and there 'diaognostic' testing dosen't work for a lot of people.

Since I have joined I have heard so many people say that they got the blood test and it came back negative....so they must not have celiac, right? But on columbia universitys website about celiac they even say 'if you get tested and it comes back negative and you think you might have it, keep getting tested".....so what does that mean? Doctors can't even trust their test it seems like ...because 'sometimes ' it just might not show up for some reason.

Anyway, this is not the rant I expected to have here but I think self-diagnosis when it comes to celiac is probably NOT going to be understood by most because they have not gone through all the tests that suck, or the tests the come back negative when they KNOW inside something isnt right. I think it comes down to how empowered you feel and how confident you feel about yourself. Like someone on here who said she self diagnosed and has no regrets about it so confidently, if I met her and she told me that, I would not second guess her because of the energy that comes through when she says that. For me its about knowing for myself what 'fits' not what a 'doctor' tells in a lot of cases. Because doctors are just people too, and they don't know everything.

No one else is in your body experiencing what you experience. Society has gotten WAY to far from their own inner wisdom about things. When it come to celiac, I think the "gold standard" test is what makes you feel better. Its too bad that people feel bad sometimes about self-diagnosis, because they are only following what they feel is true for them..which should be honored. blah blah blah...okay so I must have had that built up inside me a bit...also, as a disclaimer, I dont dislike doctors or think people shouldnt go to them. I just think the time is coming where people are going to start honoring their own intuition about their bodies and doctors and physicians need to evolve to help that and become more of a guide with information, not so much a 'what I say goes'.

[JennyC]

My son had all the symptoms and had extremely positive blood work, the highest his pediatrician had ever seen. As a result, she told me to start him on the gluten free diet and see a pediatric gastroenterologist. I absolutely refused the biopsy since he was doing so much better. It's six moths later and he's doing great. So my son was diagnosed by his pediatrician and myself, but I'm not sure many other doctors would agree without the biopsy.

[Guest andie]

In your case you may need a diagnosis for your husband. Have you explored the idea of the baby having celiac as well? Those are issues you may need to get cleared before you must also deal with a new baby.

However, that said, some babies just have colic. All babies cry. Don't jump to conclusions. Stay gluten free while you breastfeed, (if you are) and your husband will continue to attach the 2 of you together in theory. (Inside/Outside) That will give the baby a good head start on life and when you stop and feed her/him solid food, it will also give you arguement if the baby gets sick.

It is difficult for a dad to form an attachment until the baby is born. Once that happens he will not be able to bear it being sick. He sounds like a pretty caring dad. Giving up his bread might not be as hard after that. He is already entertaining the idea of celiac.

Just a thought.

Andie

I am self-diagnosed. I got sick during my first pregnancy and was diagnosed with IBS (like so many others here) but I was never sick enough to end up in a hospital. When my dd was about 18months old, my husband decided to try the Atkins diet, and I joined him. My symptoms TOTALLY disappeared during the 3-weeks of Phase 1. Well, hubby decided that he could NOT live without bread (and I found out that he had been cheating all along) and we went back to eating "normally". Of course my gastro problems came back and I decided that I had a "wheat allergy". I avoided wheat but cheated pretty often. My "reactions" were much more severe at "that time of the month" than any other time, and I blamed it on PMS. Then, I got pregnant again, and my symptoms came back full force. This time, I did some research, and found this site. I found out how dangerous it can be for a celiac to have gluten during pregnancy (much higher risk of miscarriage) and immediately went gluten-free.

I have never felt better! For me, a positive dietary response is the only testing I need.

Unfortunately, my husband does not agree. He is willing to go along with the gluten-free diet during my pregnancy, just in case I actually am celiac, he doesn't want to risk harming the baby. But, he is fully expecting me to start eating gluten and get tested as soon as possible after the baby's born. I have told him that I'll try a gluten challenge... but if I have lots of problems again, I will not be able to force myself to stay on it long enough to get the tests. We have pretty much agreed to disagree on this issue for now, and talk about it again after the baby's here.

[CMCM]

I'm self diagnosed (at 57). A lifetime of problematic digestive issues. Occasonal dizziness. Headaches. Muscle and joint aches. Despite having a mom who was diagnosed celiac at 40 something back in the 1960's, I never thought I had the gene since I didn't lose weight like she did. In the last 8 years I did a couple of gluten blood tests out of idle curiosity more than anything, always negative (although I now think the tests weren't the right ones). Things got worse with my symptoms, finally I did researching, discovered all sorts of information, and eventually got the full Enterolab test just to "see" what it revealed. I have the gene, I had autoimmune reactions. Who knows if I actually had active celiac disease, if I had intestinal damage, or if things were still at the level of "gluten intolerance" reactions. I guess it doesn't matter.....I feel rotten if I eat gluten, I feel great if I don't.

Thank goodness for the ability to self diagnose with celiac disease, though! Ten years ago none of us would have any idea about what is going on except for the few lucky ones who had a knowledgeable doctor (relatively few of those out there!). We are all so lucky to have the information on the internet to deal with this ourselves, as so many of us have had to do!

[Guest keegans_mommy]

I appreciate everybody's responses to my post! I'm feeling confident in my decison for self-diagnosis and so does my DH. He also feels I have it and with my past, I have put many, many things together!

I recall my mother telling me that when I was adopted and very young, I was TINY for a 5 year old, the size of a 2 year old, and my abdomen was greatly distended. I hated eating and recall having to use the bathroom RIGHT NOW! KIWM? That is the best way I can describe it, even then. Symptoms are worse as I am older and especially this past year. Add in the constant panic attacks, depression so bad that 2 medications almost didn't stop me from killing myself one night and such severe abdominal pain, I felt like I was in natural labor again!

[HouseKat]

I noticed, during a search that some of the members here have a self diagnosis of Celiac's because they KNOW that they feel horrible eating gluten and "don't need a doctors diagnosis". Sorry if I sound snotty, I am not trying to be that way

I have been "gluten lite" for months now as I know it makes me feel horrid but I will occasionally eat it when there is a party or we go out to eat. I then have a price to pay and sometimes the reaction isn't so bad and it's worth it. BTW, I don't have a diagnosis of Celiac's but am waiting for a blood test to come back to the GI's office. SO! If I have been "gluten lite" for so long, I am expecting that it will be negative and then I am at a dead end to this mystery of mine. I have most every single symptom that a lot of people here have described and I am feeling confident that I am one of you (LOL).

So, I am wondering how many of you have the official diagnosis and if so, what positives does this bring you? TIA!

I've had symptoms for 23 years, and started asking doctors about Celiac 15 years ago. They always dismissed it out of hand, and then one of them told me that I couldn't have it because if I did I'd "be wasting away, not gaining weight". After my second close relative was diagnosed and I found out that it was hereditary - a doctor had told me that it was not - I went gluten-free and it changed my life.

I see my primary care doctor in a month - I can't wait. If he asks me to go back on gluten for testing, I'm going to tell him, "Y'all had 23 years to test me for Celiac...heck, I've even been asking y'all to for the last 15! There's no way in hell that I'm going back on gluten...I've already suffered for 23 years with this and I'm not going to suffer one day more!"

Kate

[holiday16]

I think I fall somewhere in between. I had bloodwork done in 2003 that was negative, but no total IGA was done at the time. Last year an NP recommended Enterolab and I tested barely positive, but the response to diet was dramatic and many issues which began 8 years ago when my daughter was born have resolved. We found that my youngest who we had started taking to the Dr. for stomach complaints did better as we were eating gluten free at home and her chronic constipation improved. She went from low gluten to gluten free and I'm still amazed at how flat her stomach looks now. The improvement was great enough no one has ever even recommended testing and she's been gluten free for a year. She tested it once with a twinkie type treat from school and a day later she was doubled over in pain and cried herself to sleep. She's been very compliant with the diet ever since )

We had the oldest tested by bloodwork which was negative, but through enterolab she tested positive so she went gluten free and everyone was amazed at the change in her. She also began to gain weight and she has always been so skinny it was terrible. Her behavior was the biggest improvement, but she is also getting better grades at school, can sleep at night and no longer falls asleep on the bus.

Our son we had tested with bloodwork which was also negative, but we're still planning on testing with Enterolab to be sure. I had my total IGA tested and it came back low so we tested his as well and while it's in the normal range it's not by much. He's never had the same complaints the girls have so hopefully he doesn't have a problem.

I was referred to an internist who offered to do a scope, but I didn't want to have to go back on gluten so I refused. After both dh and I told him how much our daughters had improved as well he basically said the proof is in the pudding and diagnosed it as gluten sensitivity. So after about 9 months of being gluten free I have an official diagnosis from the Drs. I see locally (the NP was someone I worked with from a distance and not a primary).

One of the main things that improved going gluten free was water retention. I was retaining around 30 lbs. at the worst and now I'm finally off of diuretics totally after being on them for years. I still have some edema, but am hoping it will continue to get better. If I have gluten I swell again so it's pretty obvious it's an issue!

[codetalker]

I think I fall somewhere in between.

I'm in the same boat. In my case, I have both a medical and a self DX.

The first DX was at Johns-Hopkins where the DX was celiac baby. Shortly thereafter the same doctors that DX'd me decided I had outgrown the condition and put me back on a normal diet. After 40 years of untreated celiac disease and ever worsening symptoms, I basically had to do a self-DX and figure out that celiac disease is lifelong and not outgrown.

The big positive that came from the original DX was just that I had a search word to use to search the Internet 40 years later. Without that, the Internet and celiac sites like this one, I'd still be sick. At the same time, there is a positive in that the original DX lets me know for a fact that I actually do have celiac disease.

The flip side is the negative that comes from knowing just as factually that all the doctors who treated me over 4 decades were all totally useless. Every mention of the celiac baby DX went in one ear and out the other. Not a single doctor knew what the DX meant. Not a single doctor bothered to find out.

[Ken70]

Self diagnosed as well!

Bottom line is that gluten and casein aren't "good" for anyone. I am almost certain this will become the "next big thing" in the diet world within the next five years regardless of a doctors diagnosis. If you have the courage to remove these foods from your diet (and possibly others) and you feel better doing so then why do any of us need a name for this "condition" or a doctors diagnosis?

I look at it this way... I don't have to be told that I am rat poison sensitive to not eat rat poison. At some point this will be a discussion based on logic. Right now almost no one can believe that pizza is slowing destroying their immune systems and making them susceptible to everything from depression to cancer. I look at pizza like it is rat poison now and it use to be my favorite food.

[DonnaD777-777]

I noticed, during a search that some of the members here have a self diagnosis of Celiac's because they KNOW that they feel horrible eating gluten and "don't need a doctors diagnosis". Sorry if I sound snotty, I am not trying to be that way

I have been "gluten lite" for months now as I know it makes me feel horrid but I will occasionally eat it when there is a party or we go out to eat. I then have a price to pay and sometimes the reaction isn't so bad and it's worth it. BTW, I don't have a diagnosis of Celiac's but am waiting for a blood test to come back to the GI's office. SO! If I have been "gluten lite" for so long, I am expecting that it will be negative and then I am at a dead end to this mystery of mine. I have most every single symptom that a lot of people here have described and I am feeling confident that I am one of you (LOL).

So, I am wondering how many of you have the official diagnosis and if so, what positives does this bring you? TIA!

I'm self diagnosed, i only wish the doctors had an idea when i was growing up, i was in and out of the doctor's office my whole life to figure out what was wrong with me, know i go to the doctor and let them know i have celiac's, and i have not had one argue with me or make me take a test, they say my symptoms are right on.

I do want to let you know that it is very dangerous to be "lite", just a little will destroy your intestines and it takes 3-6 months to heal, that is 3-6 months without correct absorbtion of vitamins and minerals that can lead to very dangerous life threats. I had a neurologist tell me that eating gluten as a celiac that it can cause your immune system to start attacking your nervous system....do your hands and feet fall asleep easy? Many parts of my body falls asleep easy, but has gotten a lot better since i do not consume gluten. If i accidently get gluten, after having cramping and throw up systems in my stomach, my body parts start to fall asleep really easy. Just be careful.

[darlindeb25]

I too, am self-diagnosed out of doctor's ignorance. I begged for help for years. Over 20 years I was ill. I have a daughter because I wasn't absorbing birth control pills, yes, because of undiagnosed celiac disease and my doctor looked at me and said, "99% safe, and you have to be the 1!" Yet, had he found the celiac disease? No! He told me I had the flu, a persistant case of the flu. I love my daughter and I thank God I have her, but I didn't have to have a disease for that. She is 25 now and I have been gluten free for 7 years. You add up the numbers. I have had tummy issues for as long as I can remember and they worsened when I was pregnant with my 2nd son who will be 31 in Dec. I am now 52. My sister was diagnosed with celiac disease in March 2000 and I went gluten-free in July of the same year. I had no insurance and could not afford to be tested and she said, just go gluten-free and see if you feel better, she knew I had celiac disease too. Since then, 3 yrs ago next month, our dad went gluten-free too, at age 69, after stomach issues his whole life.

The only way I can be confirmed celiac now will be with a gene test, yet, no one will ever convince me I am not celiac either. It doesn't matter, I will be gluten-free for the rest of my life. I also am grain free as of now. Within the last 4 years, I had to give up soy, corn, nightshades, cruciferious veggies, then rice. Now I am dealing with borderline asthma because of chemical sensitivities. My doctor here is 99% positive I am celiac, he has never doubted me. Yet, going that many years without a diagnosis wrecked havoc with this body. Now I deal with neuropathy too.

I tell people, if the doctor will not test you, then change doctors, or go gluten free yourself. gluten-free can not hurt you. I believe most people would be better off gluten-free anyways. Grains are for animals to eat. My mom always said, "Corn is for fattening hogs!" and "Milk is for baby calves!" I still enjoy my dairy, I hope I never have to give that up!

[Guest keegans_mommy]

Wow! So much to read! I am enjoying reading all of your stories and they are just helping me to give myself permission to diangose myself on this one. Thank you!

My BFF is being tested as we speak as she has all the symptoms too so I am keeping my fingers crossed she can be helped one way or another.