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Feeling Like A Fraud
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I work in a hospital, and today I was talking to one of the docs that I work with. I told him about my very low vit d and that is why I have so much leg pain, he stated ooohh yeah that makes since that you would have bone pain.

then I told him about doc carttar saying that I might have Celiac and he laughed and started to say you gotta be kidding me. He didn't day the whole statement then started telling me how hard the gluten free diet is going to be.

He made me feel like I was just wanting to be celiac and that subcontously making myself have the symptoms.

Why would I want that. Why does people want so badly for you to eat like they do.

One of my coworkers was even arguing with me that I need grains and that it was not good for me to be gluten free.

I think from now on I am going to keep my mouth shut.

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Sometimes you have to just do what you feel is best for you and ignore the nay-sayers. Try gluten free (it's not as hard as they would have you believe) and if it helps you, so what to them.

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Sometimes you have to just do what you feel is best for you and ignore the nay-sayers. Try gluten free (it's not as hard as they would have you believe) and if it helps you, so what to them.

:) your right. I have been on the gluten free diet for 18 days now, and I have noticed some response to my tummy and bowels, but not my legs yet. and the leg cramps are not so bad but not 100% yet.

I just hate it that when the docs at work see me all they see is fat fat sherry and don't stop to think that there may be a reason why I over eat like I do. since I have been on the diet I have started loosing weight and eating right.

I even noticed that my finger nails are growing like crazy. They would never grow before being on the diet.

Just needed to vent. But I do feel better. :)

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Your experience is quite common and very frustrating. Over time you'll learn to ignore them. The saddest thing about your experience is that these are medical professionals and they are obviously ignorant about a very common condition. Their lack of compassion is also very disturbing.

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I've been gluten-free for a long time now & I must say the gluten-free world has & is becoming more& more with lots of variety & choices abound. It is a pricey lifestyle but worth every penney for renewed health.

It does require a committment & a big lifestyle change. A learning curve as well. But once you get onto the lifestyle it is simple... again take it in steps & take your time. Jumping into gluten-free all at once is overwhelming.Start out with the things you know to be already gluten-free, once you got it down go on to learning new things that are tasty & gluten-free.

You will find almost everything you ever loved in reg products- there will be a gluten-free one to match it....nothing will ever taste exactly like the wheat things but many gluten-free foods come mighty close some even better.

If your co-workers keep bugging you just say well down the road I will be the healthy one... gluten-free does lack protein & fiber so try to add those items into your foods as well.

I for one take vitamins & minerals along with enzymes & probiotics daily.

Most who are not on the gluten-free foods have no idea they just like to give out opinions. As the saying goes Opinions are like *** holes everyone has one!!!

My mantra is" I know no one who has ever died from not eating wheat"

Stick to what you know is right for your body

blessings

mamaw

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Thank you, I am feeling a little better. I was just upset because I tend to talk tooo much and the doc I was talking to is one I look up too. But I have learned to just keep my mouth shut and not tell everyone about my diet. no one else's business but my own right?

any way thanks for letting me vent.

Sherry

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Next time you see that doc let him know that gluten can damage your small intestines. It happened to me. Please be an advocate and educate this doctor since he obviously didn't learn about Celiac disease in med school. This is no fad.

I work in a hospital, and today I was talking to one of the docs that I work with. I told him about my very low vit d and that is why I have so much leg pain, he stated ooohh yeah that makes since that you would have bone pain.

then I told him about doc carttar saying that I might have Celiac and he laughed and started to say you gotta be kidding me. He didn't day the whole statement then started telling me how hard the gluten free diet is going to be.

He made me feel like I was just wanting to be celiac and that subcontously making myself have the symptoms.

Why would I want that. Why does people want so badly for you to eat like they do.

One of my coworkers was even arguing with me that I need grains and that it was not good for me to be gluten free.

I think from now on I am going to keep my mouth shut.

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I feel you, Sherry. Working with doc's, you know that many always know more about most things than anyone else. ;) ( joking)

Many were taught that Celiacs are very thin. I saw something once where the researcher said that he thought all morbidly obese patients should be tested. He thought that the fact that we aren't getting the vitamin absorption needed made some people eat more and have cravings.

I know before I went gluten-free, craved different things. I don't crave them anymore.

Good luck!

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I feel you, Sherry. Working with doc's, you know that many always know more about most things than anyone else. ;) ( joking)

Many were taught that Celiacs are very thin. I saw something once where the researcher said that he thought all morbidly obese patients should be tested. He thought that the fact that we aren't getting the vitamin absorption needed made some people eat more and have cravings.

I know before I went gluten-free, craved different things. I don't crave them anymore.

Good luck!

Thank you, your right some of the docs have god complex :lol: I will just not say anything and when they say, "how have you lost soo much weight?" then I might tell them.

:lol: then again maybe not :lol: I might just look at them and say I Dunno.

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You can eat plenty of grains on a gluten free diet, just not those pesky three. That doctor is a total idiot and (insert many curse words) like him are the reason so many of us suffered needlessly for years.

SEVEN years ago my OB said I had celiac and sent me to a GI for testing. He acted the same way as that stupid (insert curse adjectives here) doctor did with you today. He talked me out of testing and assured me that I did not have celiac.

Two horrific pregnancies and really bad illness later I found out I had celiac the whole time. Do you know how much anger and bitterness I've had to process and deal with knowing that i could have been spared all those years? My son almost died during childbirth and my OB said ALL of my pregnancy problems including him being a premie were likely due to my celiac. I am so ANGRY at doctors like that. They are NOT doctors in my opinion.

That idiot is the FRAUD not you!!!! He's not a doctor if he isn't willing to look at every possibility to make someone well. Tell him to give me a call so he can get an earful.

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Not sure if you are getting testing done or if you are just doing to diet and seeing if it helps you, but regardless. Do yourself a favor and if you find you have celiac either by self diagnosis or whatever don't tell people the details. Nobody needs to know you are self diagnosed or whatever. Tell them you have celiac. If you have to, lie and say you took the blood test and it was positive. It will make your life much easier if you do.

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Not sure if you are getting testing done or if you are just doing to diet and seeing if it helps you, but regardless. Do yourself a favor and if you find you have celiac either by self diagnosis or whatever don't tell people the details. Nobody needs to know you are self diagnosed or whatever. Tell them you have celiac. If you have to, lie and say you took the blood test and it was positive. It will make your life much easier if you do.

Thank you sandsurfgirl,

I have had the blood test and it was neg. The doc I am seeing won't do the biopsy but told me to go on the gluten free diet at once. He said he agreed with my other doc that I have IBS but that he also thinks I have celiac and said it probably was just a false neg and said that if I only have IBS that about 40% of people with IBS do great on the diet.

I have been on it for 19 days now and counting. and it has helped with some of my bowell issues but not completly better yet. I guess I am going to have to wait and see if in a year it gets better.

My vit D level was 13.5 at testing but my A1C was 6.0 and my LDL was 109 and my HDL was 39 so my cholesterol was bad and I am pre diabetic. he is going to give me 4 months to try to correct that by diet and excercise then if I don't he will put me on meds.

I really think that now that I am on the diet I will be able to get my A1C and my cholesterol down to were it should be.

I think when I see him next I am going to ask him to test my thyroid. If I don't get to have any caffine I am extremly tired and can hardly stay awake. And I have been sleeping fairly well at night now that my leg cramps are almost gone.

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I would definitely get your thyroid checked along with cortisol levels (saliva test) -- get copies of your results, because even if your numbers are in range, they could be on the low side for you. Stick with the gluten-free diet and eat whole foods -- regardless of what people are saying. I can't stand it when people claim to know something when they don't have personal experience or haven't done anything to prove it to themselves.

Also, your at about the pre-menopause age. I just started using a natural progesterone cream (the oral prescription stuff made me moody and tense and gave me a lot of acne), and it's made a big difference in energy level. Although I'm still trying to piece everything together, I think this is part of it. If you're not having hot flashes (which would indicate low estrogen), then it might be worth looking into. I highly recommend the book "What Your Doctor May Not Tell You About Pre-menopause." According to this book, most of us are estrogen dominant, including men, which causes all sorts of issues. This may or may not be part of your problem, but the point is that you should investigate every possibility and not wait for doctors to give you answers (and if they do give you an answer, question it B) ).

Ignore the ignorant comments. Besides, who's going to look like the idiot when you're feeling better, healthy, and looking great?

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This is one thing I would correct a doctor on (and have). When they say "you don't want that, the diet is so hard", I say "no, it's really not, and besides, is something being hard a reason to not do it and be sick instead?" I don't think they realize how much the spector of noncompliant patients alters their thinking.

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You can also remind the doctor that stopping smoking is hard. Does he reccommend that his patients keep smoking?

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Gluten Free Diet = Easy B)

Listening to Glutenoids who must live off of drive thru fast food and mistake it for "nourishment" = :wacko:

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I've said this before, I think some people confuse carb with gluten. We NEED carbs for energy. There is more than one form of carb. Grain is not the only carb you can get your hands on!

I stopped talking about it too. I had some guy (a waiter no less) scoff at me and say something about he wouldn't ditch it even if he had to.

Obviously someone who does NOT suffer from it.

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Gluten Free Diet = Easy B)

Listening to Glutenoids who must live off of drive thru fast food and mistake it for "nourishment" = :wacko:

HAHA that made me laugh. Thank you.

I don't really find the diet *hard* persey. More work, Yes. that it is but hey not much diff than Diabetic eliminating sugar or Hypertensives eliminating salt.

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My vit D level was 13.5 at testing but my A1C was 6.0 and my LDL was 109 and my HDL was 39 so my cholesterol was bad and I am pre diabetic. he is going to give me 4 months to try to correct that by diet and excercise then if I don't he will put me on meds.

I really think that now that I am on the diet I will be able to get my A1C and my cholesterol down to were it should be.

That is a wise doctor you have who is looking at the whole picture not just the celiac panel. I also think once you have been on the diet for a bit your LDL, HDL and D levels will improve. You should think of supplementing the D and also ask the doctor to test you B12 level if paresthesias or fatigue are a problem. When the body is ill the blood sugar levels are higher than normal so I do think those levels will become a lot better also after you have healed a bit.

Don't let those other folks get you down. You know what you need to do and it is not like your doctor didn't advise it. You are being a good patient and listening to him and your body will thank you for it.

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Not sure if you are getting testing done or if you are just doing to diet and seeing if it helps you, but regardless. Do yourself a favor and if you find you have celiac either by self diagnosis or whatever don't tell people the details. Nobody needs to know you are self diagnosed or whatever. Tell them you have celiac. If you have to, lie and say you took the blood test and it was positive. It will make your life much easier if you do.

I haven't been able to tell others that I am Celiac without a diagnosis. I tell them I am severerly gluten intolerant. However, I am pretty certain that I am Celiac. The reason for this is that I also have hyperparthyroidism which which is an autoimmune disorder.

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I think when I see him next I am going to ask him to test my thyroid. If I don't get to have any caffeine I am extremely tired and can hardly stay awake. And I have been sleeping fairly well at night now that my leg cramps are almost gone.

I used to be really dependent on coffee and tea to keep going. Basically had to "shoot up" with coffee every couple hours to keep from collapsing. When I quit coffee and tea I my energy level stabilized quite a bit. Then when I quit soy it really got a lot more even.

I was thinking it was my thryoid also since I have a cyst and couple nodules. But it turned out to be caffeine and soy that were really doing me in.

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You can also remind the doctor that stopping smoking is hard. Does he reccommend that his patients keep smoking?

:P I like that. thank you

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That is a wise doctor you have who is looking at the whole picture not just the celiac panel. I also think once you have been on the diet for a bit your LDL, HDL and D levels will improve. You should think of supplementing the D and also ask the doctor to test you B12 level if paresthesias or fatigue are a problem. When the body is ill the blood sugar levels are higher than normal so I do think those levels will become a lot better also after you have healed a bit.

Don't let those other folks get you down. You know what you need to do and it is not like your doctor didn't advise it. You are being a good patient and listening to him and your body will thank you for it.

Thank you ravenwoodglass. I have started taking 50,000 IU's of Vit D every other day for two weeks then I will only have it once a week. and I hope you are right about the LDL and HdL and A1C becoming normal after I have been on the diet for awhile. :)

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Thank you ravenwoodglass. I have started taking 50,000 IU's of Vit D every other day for two weeks then I will only have it once a week. and I hope you are right about the LDL and HdL and A1C becoming normal after I have been on the diet for awhile. :)

When I was first diagnosed, I was given a great packet of information from my doctor which stated that celiacs tend to have higher cholesterol rates after going on the gluten-free diet. At my 6 month check up, I was expecting my borderline cholesterol to have gone through the roof. It had dropped 50 some points without even trying and was within the normal range for the first time in my life.

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    • by the way, I do find the lab who does the gluten sensitive test Gluten Allergy IgE Test This test is used to determine if a person has an allergic reaction to gluten, a protein found in wheat, barley, and rye.  Roughly 1 in 30 adults and 1 in 40 children suffer from a Gluten Allergy.  An IgE test looks for antibodies which develop in a person who has a particular allergy.  Gluten Allergy can display symptoms similar to other conditions such as Celiac Disease.  Unlike an allergy, Celiac Disease can do permanent harm to the body if left untreated.  Allergy testing when a person is experiencing symptoms can help identify or rule out an allergy as the cause.

      Gluten Allergy is typically less severe than other Gluten related conditions like Celiac Disease.  People with Gluten Allergy will often experience abdominal discomfort, bloating, gas, constipation, or diarrhea when they eat products containing gluten.  These symptoms usually stop when a person cuts gluten out of their diet.

      A Gluten Allergy IgE test can be ordered to help determine if someone allergic to gluten.  This test can also be ordered when a person is testing for Celiac Disease and has had negative results on Celiac specific antibody tests.  An allergy test can also be ordered prior to Celiac testing to rule out Gluten Allergy as a likely cause for a person’s symptoms.
    • so does it mean a person who carry dq2 or dq8 gene will have high chance to develp celiac disease if they continue to eat gluten or some other stuff trigger it??      
    • I just wanted to share my experience. I started with the endoscopy because I was having symptoms of a hernia + I had a colonoscopy at the same time to test for Chron's. While getting the scope the doctor noticed damage of the small intestine and did biopsies and they came back positive for Celiac disease. We followed up with the necessary blood work to confirm and those all came back like yours, negative, however my genetic testing was positive. So although rare, it is possible to test negative on the blood work and still have damage and be a positive. I don't know why my blood work was off, but I am glad I had the scope first because I would have never known the damage I was doing if I relied solely on the blood work. 
    • You're welcome. Good that you're having the gene test as well. If you DO have the gene(s) then you realize one can present with celiac at any point in life -- any age -- so you would need to be tested like you were, every 2 years in the absence of symptoms. If one develops symptoms then they need to be tested right away instead of waiting for the 2 yr. mark. It's not common, but is possible to test negative on the blood and still have villi damage on endoscopic biopsy. So depending on the results of the gene test....... you might see if your doc will do a endoscopy for you OR you might be what they refer to as something like a pre-celiac where you're not testing positive yet but most likely will soon.
    • Just don't give up.  Good luck and best wishes to you.  Let me know how it's going for you.  Been there, done this.  It ain't fun.
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