Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Got My Blood Test Results Back Today!


Guest mmc

Recommended Posts

Guest mmc

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

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

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

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

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

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

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Lisa Mentor

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
:) 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

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!!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748

    LowellFrancis
    Newest Member
    LowellFrancis
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.