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I Got My Blood Test Results Back Today!

Guest mmc

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Guest mmc
Guest mmc
Posted

Approximately one week after getting my blood work done, I got my results.

This is how it went:

DR: "You absolutely do not have celiac sprue. We ran several tests on your blood and there is nothing wrong with you."

ME: "My body says there is."

DR: "I guarantee there is nothing wrong with you, it's in your head."

Me: "From what I have read, there are more than 3 parts to the test for celiac, and you only ran 3."

DR: "I didn't test you for celiac, I screened you for it to see if it is even possible for you to catch it."

Now my questions to all of you...

1) I have read that a blood test can rule in celiac, but cannot rule it out, is that true?

2) How many segments does a celiac blood test have?

3) Since when do you "catch" celiac?

Any insight anyone can give would be helpful!

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Ursa Major Collaborator
Ursa Major
Posted

My advice? Ditch this doctor! He knows absolutely NOTHING about celiac disease. Find somebody who does.

And you're right, first of all you can't 'catch' celiac disease, and secondly, if he didn't run all the relevant tests, you may have celiac disease after all.

Have you tried the gluten-free diet? Were you eating a lot of gluten before the tests? A lot of things can influence the results. Plus, if the lab rarely does those tests, they may not know what they're doing anyway.

And it is NOT all in your head! If your doctor wasn't incompetent when it comes to celiac disease to begin with, that remark alone would be enough to ditch him. Who needs a doctor who insults his patients?

Guhlia Rising Star
Guhlia
Posted

1. There are plenty of false negatives out there, but virtually NO false positives.

2. I think there are 5 components to the celiac panel. CarrieFaith??? Where are you???

3. You don't "catch" Celiac.

4. Your doctor sounds like a real piece of work. It might be in your best interest to get a second opinion.

I wish you the best of luck in your quest for answers. Follow your gut instincts and you will eventually (hopefully sooner rather than later) find answers. Perhaps you could print out some information on celiac to take to your next doctor and discuss with him/her the symptoms that you're having that concern you and point out that celiac bloodwork can come back negative EVEN IF YOU HAVE CELIAC.

key Contributor
key
Posted

If he says it is in "your head", find another doctor. He sounds like he is arrogant and clueless about celiac disease. Sorry you have had this experience. For me, my blood tests were borderline. I was already gluten free for two months and so I didn't want to eat wheat to have the biopsy. My body told me I couldn't eat it and that was that. So do what you think is best for you.

Monica

tarnalberry Community Regular
tarnalberry
Posted

The "it's in your head" statement means that he doesn't believe you. In my book, if your doctor can't trust you to be honest in what you're telling him, you can't trust him to take you seriously. There IS validity in psychosomatic disease, but there needs to be trust developed between you and your doctor to ferret out what is pyschosomatic and what isn't, and what he stated does not in any way demonstrate that trust. It shows that he cares more about the lab values that the quality of life of his patient.

Guest mmc
Guest mmc
Posted

Well, after good advice from all of you, I have decided to ditch my dr. I do plan on seeing another dr in the very near future, but even if I get a neg. from him, I'm going gluten free. It makes me feel better and I don't need a test to tell me that.

My husband and I talked about it and he was very supportive. He simply said "I just want my wife back, I want you to feel better and if being gluten-free makes you feel better, then our whole family is on board. I love you, the girls love you, and we just want you to be better. We don't need a test to tell us if this makes you feel better, we already know it does!"

Having his full support makes me feel better, since everyone else thinks I'm mental. I want to thank all of you for your support and advice.

Melisa :D

mouse Enthusiast
mouse
Posted

That is so great about your husband's support. That makes it so much easier. My family eats all of my gluten-free meals as they just want me well. Hugs to you and your wonderful husband.

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Lisa Mentor
Lisa
Posted

Boy, your got it made girl, with the family support that you have. I agree with others that your doctor is short of idiot. Some people feel that they need a diog. to know what they have, but if you feel better with the gluten-free diet, well, just continue on. You will be either wheat intollerant or gluten intollerant. My advise to you is to not waste any more money on the doctor you went to, he can't help you because he is clueless of the disease.

Good for you for a strong support system in you family. That will carry you a very long way. Good luck and feel free to ask any questions you have about Celiac. There are no dumb questions here.

Lisa

Guest Robbin
Guest Robbin
Posted
:) Your dr. sounds like he's a member of the "god complex" club. Fire him. If you need an " official" validation, I recommend Dr. Fine and Enterolab, if not, it sounds like you have the best support system anyone could ask for. You are a lucky girl :) Take care.
sarahjo Newbie
sarahjo
Posted

my daughter doctor finally agrees that my 2 year old has it, he has no proof, just that she improved on the diet and failed with out it, i mean physically failed. she has a feeding tube, iron deficiency, asthma, and sleep apnea. on the diet the only thing was the tube until she was fully norished again. it took me a year to find a great doctor. when we started i wrote him a letter stating what i believed was wrong with her and if he could handle it or not. he knew from the begining what to expect, and he has stuck by me, i wish he was the whole families doctor. if i could give him an award i would. we had a doctor that investigated me for child neglect, because he didn't want to hear about celiac. needless to say we ditched a few months after. just remeber that if you go gluten free and your new doctor wants test that the diet will mess them up. keep a diary of what you eat and how you feel. then you can show it to him and say i feel better than i did... plus it shows them that you are serious and you are tired of being screwed around with, it is your body not theirs. i wish you luck, there are good doctors out there, unfortunly it takes alot of searching. let us know how you are. remeber YOU COME FIRST NOT THEM!!

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      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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