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Thread: Celiac disease?

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    Default Celiac disease?

    Yeah, yeah I know it's the latest fad to some.....

    Anyway, I've had strange medical problems for the last thrity years that doctors can't figure out so my latest GP is convinced if I just went on antidepresants my body would feel better.

    Tried it hated it.

    Now, I've had my appendix out b/c it ruptured, tonsils out from 15 years of chronic infections, 11 broken bones and the last time they said it looked like osteoporosis (I'm 34), chronic pelvic pain/burning that is not an infection or yeast but comes and goes with intensity over the last 20 years, and burning feet for the last 30 along with various dermatology problems on scalp and arms, oh and bowel movements like 7 times a day of mostly undigested food.

    The last ten days I finally cut out wheat to give it a real try because I read that families of people with type 1 diabetes (my sister) have five times the chance of having it.

    I feel so much better, and in one way that makes me happy, but in another way I'm so mad.

    Now I have to go find a doctor and convince them to test me and I just know they are going to have me up their ass. Like I want attention or a disease, Christ I don't even know why they think this about people.

    I'm not a complainer and hate going to the doctor for this reason. I haven't even sought help for most of it, but I know I need to now if even for my sister to get tested.

    Any advice on how to talk to doctors so they don't automatically assume you're a hypochondriac? especially anyone who has it. I am dreading this.

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    Veteran Member justifymylove's Avatar
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    Default Re: Celiac disease?

    It's my understanding that celiac disease is difficult to diagnose sometimes because the symptoms could indicate a wide range of things. However, it should be simple to go to your physician and request a blood test. Just present your symptoms and say that you've been looking into this disease and that you'd like to be checked for it. I don't know why they would think you're a hypochondriac? If a doctor isn't taking your input seriously and is just trying to push you off onto a drug regime then try to find another doctor.

    Also, I recommend perhaps seeing a naturopathic doctor. Naturopathic doctors can refer you for the proper tests and will probably be extremely helpful in managing diet and lifestyle. And they are likely to be receptive to hearing your perceptions of your health as opposed to just treating symptoms.

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    Veteran Member Christyismyalias's Avatar
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    Default Re: Celiac disease?

    My mother has this disease. I wrote a paper on it, I will PM it if you want.
    The main thing about Celiac is you do have to insist on the test because they don't make money off diagnosing of this disease. That's the thing I learned that annoyed me the most. Demand that they give you the test and screw them if they try to give you a hard time. Dr's are really smart but sometimes they can be stupid. You have to take charge of your own issues. You don't want to seem like a know-it-all and act smarter than the dr, but this is your life so you have to do what you can to improve it.
    Sorry you had to deal with this for so long but hope you get diagnosed so things will get better. My mother never had relief until she was diagnosed and now finally lives a normal, pain free life. Good luck!

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    Default Re: Celiac disease?

    You can order an at home test here: https://myceliacid.com/?source=PPCge...FShSagodGjqdrw

    I've been cutting out the Dr.s office on routine tests like blood panels and urinalysis for UTI and the like. Many labs are open to the public and charge a lot less than what you have to pay at the Dr's office. They have staff that can conduct a proper blood draw, and you get your results much faster than if you were to go to the Dr's anyway.

    If you don't understand your results, you can ask your Doctor to look at your lab work and offer a diagnosis. If you Dr. doesn't help seek out a patient advocate to work on your behalf.


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    Default Re: Celiac disease?

    Thank you guys.

    It seems like doctors i've seen in the past just never believe me.

    Case in point- my appendix ruptured and I was vomiting NONSTOP I mean not even 2 minutes rest and had shitting diahrrea at the same time for 24 hours. I couldn't even get into a ten minute bath without shitting and puking all over myself.

    I went to the doctor the next day he said it was a "stomach flu".. I was like I really don't think so and he told me to "quit wasting his time over a stomach flu when he had real patients to deal with". You can imagine I didn't rush to a doctor even with the pain.

    Ten days later I had emergency surgery to get my appendix out and got reprimanded from my surgeon for "not coming sooner" because "you could have died". They had to take part of my colon out and resection.

    I should have sued but I was so happy to be alive.

    So, to the person who doesn't understand how many people are labelled "hypochondraic" it happens all the time. Not being bitchy, I guess I just wish I were you.

    How do you talk to doctors?

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    Default Re: Celiac disease?

    This sounds like you have a issue with your doctor pigeon-holing you. Get a new doctor and bring all your medical records with you.

    Too often when a doctor doesn't understand what is wrong with you, he/she will say it's all in your head. Maybe try approaching with "I've been told this is all in my head, but even if that is the case is there any way I can get some relief from my pain?"

    Ultimately doctors are in the business of healing people. I'm not sure why you are getting such negativity from your physicians. I've had trouble with one doctor, but I quickly went to see someone else because she was judgmental and ignorant about exotic dancing. (She insisted I had a full screen for STDs up to and including Hepatitis and HIV. This was after I told her I was married and monogamous for over 6 years).

    If you are not getting relief from your pain, then go to another Doctor for a second opinion. Then get a third and fourth and a fifth. Keep trying until you find someone that can either relieve you pain or diagnose your condition as untreatable or chronic.


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    Default Re: Celiac disease?

    Thanks again.

    That was one doctor.

    Then there was another one treating me for a tonsil abscess who kept telling me I would be fine even after three weeks when I was telling him (I could barely talk) that it was getting worse. I ended up in ICU for three days b/c by the time I sought the second opinion it was cutting off the blood supply to my brain.

    The another when I had an infection at the base of my spine told me he took care of it, it was gone, I said I was in pain, he said everything was OK nothing was wrong. When I started bleeding out of healed skin and had numerous abscesses on my tailbone another dr. had to do emergency surgery.

    I've learned almost not to go to a doctor unless they think it's fatal, that's usually when I get treatment.

    Other than the wheat problem, I have a lump in my neck that is getting bigger. I have a decent female ENT who does not question me and said come back if anything changes. On the same issue my bastard GP offered me antidepressants. He thinks I'm depressed.

    I seriously need coaching on how to approach them. It's not one doctor, it's been so many, which is why I now just wait until it's so bad they believe me. Someday it might be too late.

    Incidentally I don't have the same problem with foreign drs. as much.

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    Default Re: Celiac disease?

    Just an update, but finally a lot of my unexplainable symptoms are gone.

    I still have lymph node lumps, but damn I feel good.

    I did eat regular pizza the other day and 24 hours later was shitting burning diahrrea and having abdominal pain.

    The main reason I posted this is b/c 1/100 white people have this. Compare that to 1/250-500 that have HIV but we still all get tested.

    At this point I'm pissed because this particular condition leads to lymphoma, melanoma, intestinal resection, and early death.

    I've already had pre-melanoma and appendectomy related resection but doctors are actually taught this - put your hand on the doorknob to get away from the patient (only in the US as far as know to cut short questions).

    Since I've had three other malpractice ready incidents, if they don't cooperate with testing I will ask where the lawyers should send the paperwork.

    I could of had a house by now, but I was too happy to be alive.

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    Default Re: Celiac disease?

    You can get yourself tested -

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    Mind Blowing Re: Celiac disease?

    Thank you.

    I would do it but at this point even normal doctors won't accept those tests and I want to be able to point out that I'm not a mental case.

    I'm going to schedule a test with THEM.

    I've dealt with years of bullshit, no insurance, and neglect of my health. Apparently, I've asked doctors, they call those home tests "unrealiable".

    Can you believe it?

    My sister was almost in a coma wih type 1 diabetes before someone finally diagnosed her. They kept telling my mom she was a hypochondriac.

    I'm done with western doctors bullshit.

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    Default Re: Celiac disease?

    Get tested asap. You can get various diseases and cancers if it goes untreated. Good luck!

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    Default Re: Celiac disease?

    I have celiac disease. I've suffered my whole life with it undiagnosed but I've known that I had it for about two years now. Two VERY healing years. Testing isn't very accurate at this time. Some people test negative but still are gluten intolerant, so the best way to test yourself is to simply give up gluten for a couple months and then try it again and see how you feel. Your body will let you know. Celiac disease almost killed me and since getting the gluten out of my system I am like a completely different person in so many ways it would be impossible to list them all. Let's just say there would be no way for me to be a stripper prior to going gluten free though, one of my symptoms was a horribly painful, bright red rash of lesions all over my skin. I went years without knowing what it was like to be pretty...

    Other things that cleared up for me:

    Depression
    Anxiety
    stunted growth (after going gluten free I gained 20 pounds and my breasts went from a AAA or almost nothing to a large B and I got curvy hips and thighs and an ASS)
    perfect skin now
    hair grows much faster
    No more constipation (used to have to load up on fiber and laxatives to get myself to go once every 2-3 DAYS-now I'm regular as can be with NO need for supplements)
    A number of other weird, small "issues" that are too much to list.

    I highly suggest anyone with unexplainable health problems that never seem to go away try giving up gluten. There is nothing in wheat that is necessary in the human diet and its very easy to eat gluten free/cook anything you want with replacement flours. I am gluten/dairy/soy/corn free and I still eat very very well.



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    Default Re: Celiac disease?

    Quote Originally Posted by kittygirl View Post
    Thank you.

    I would do it but at this point even normal doctors won't accept those tests and I want to be able to point out that I'm not a mental case.

    I'm going to schedule a test with THEM.

    I've dealt with years of bullshit, no insurance, and neglect of my health. Apparently, I've asked doctors, they call those home tests "unrealiable".

    Can you believe it?

    My sister was almost in a coma wih type 1 diabetes before someone finally diagnosed her. They kept telling my mom she was a hypochondriac.

    I'm done with western doctors bullshit.
    I agree, western doctors completely failed me. I spent thousands on them trying to get them to tell me what was wrong with my skin. I was diagnosed with psoriasis, fungal infections, allergies, you name it. They basically just kept throwing diagnosis at me like a guessing game and prescribing me 200 skin creams which did NOTHING. I even asked my doc if it could be something in my diet and she said "There is no connection between food and skin problems".

    Doctors are idiots. You are WAY better diagnosing yourself through an elimination diet. So just go gluten free and see how you do. Had I listened to doctors, I would now likely be dead.

    (and I'm not kidding when I say I nearly died from this, I DID literally almost die, the gluten destroyed my body so bad my immune system shut down and I got a life threatening blood infection that had me bedridden for weeks-its serious-so get off the gluten!)



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    Default Re: Celiac disease?

    This makes me really, really sad. It's also the number one reason it pisses me off when I tell people I'm going into medicine and they say "Oh, you're going to make a lot of money!".

    It is SAD when people go into solely for money. I myself am going to be a D.O. (as opposed to M.D.) and am going into endocrinology so... yeah. I would totally put myself through ten years of education and being poor for quick money. Ugh. Not all doctors are bad! I promise I won't be!

    That being said I will get off my soap box.

    I would do three things:

    One: Get a new fucking GP. He sounds like an assface and you should have dumped him a long time ago. He should have had his license revoked and I believe if you speak with the surgeon, depending on how long it has been, you can still file a complaint on his ass.

    Two: Document, document, document. Keep a food diary, and list your reactions to it. Keep it for about a week and see if you can notice any patterns. When you go and get tests done, show the Dr (hopefully a new one who isn't a jerk) and this GREATLY helps diagnostic decisions.

    Three: Ask about whether the colon resection may have triggered something, because that is my gut feeling. I am not a D.O. yet, but D.O.s sort of operate on the idea that everything is connected, and we try and treat the whole self along with the problem. You know, I don't doubt that you may also be depressed- I would be too if I had such crippling symptoms! But, I highly doubt that antidepressants would be of any use to you- but then again, my education is not complete.

    I know how you feel. When I was 18, I started getting UTIs 24-7. Every time I got my period. Everytime I had sex, even if I peed afterwards. I had over 40 infections in one year. I went to a urologist recommended to me by my GP, and he did nothing. These infections were so bad in fact that I was peeing chunks of blood and would mistake it for my period. I couldn't sleep through the night; I was up and down to pee every 45 minutes. I am immune now to most antibiotics because I have taken so many.

    So, I'm crying one night and my Dad says hey. Sean across the street is a urologist. Go get a second opinion.

    Dr. Sean Tirney saved my life. He had me to a urinary output diary, which I did diligently. He actually LISTENED and sat down with me; at the time he was very new and I remember him telling me we would work through it together.

    In just a week, we had a diagnosis: Interstitial Cystitis with Hunner's ulcers in my bladder. We scheduled a surgery and he did a hydrodistention with cystoscope, and a biopsy. He put me on some new medicines plus a low acid diet (no citrus, cranberry, coffee etc etc) and you know what: In six months, I was in REMISSION.

    Today, I don't take medication anymore. I still have a very small bladder from all the scarring, I can't eat certain foods, and it frustrates me when everyone tells me to take cranberry (blueberry does the same thing but tastes better. ). But that man is the person who inspired me to become a doctor, because I want to be just like him.

    I guess the point of the whole thing is don't give up. Find someone kind who will listen; I know firsthand how frustrating it is to feel helpless about your own body. Keep trucking.

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    Default Re: Celiac disease?

    I agree not all doctors are bad. My friend is also celiac and he has a good doctor who helps him a lot and is very aware and educated about celiac disease and gluten. However, my friend has insurance and I do not. For people who are uninsured and can only afford clinics and what not, they might as well not go to doctors at all. I've only ever been treated like total shit by doctors at these clinics and honestly, it amazes me some of them went to medical school at all.

    Something is very wrong when I could learn more about celiac disease in a few days reading things online than a doctor could know after years of medical school. Some doctors don't even seem to know what celiac disease IS!

    I am completely self diagnosed and healed myself entirely using diet and alternative medicine. You don't need a doctor to heal from this. PM me if you have any questions.



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    Veteran Member luckischalk's Avatar
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    Default Re: Celiac disease?

    I had no idea that you could get tests done without a doctor's order. I have health insurance so I guess it doesn't make a huge impact on my lifestyle, but this is still great information!

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    Default Re: Celiac disease?

    Yes, and the best test is free. Just give up gluten and see how you feel.



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