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

Who Do I Go To To Get Diagnosed?

Random Guy

Recommended Posts

Random Guy Apprentice
Random Guy
Posted

hey everyone,

this is my first post.

my mom recently was diagnosed with celiac. This prompted me to ask for the celiac panel tests to get run the last time I was at the Dr's office anyway. The Physicians asst drew blood. He said something about celiac being an unpleasant way to lose weight. (i don't need to lose weight. that was just his bedside manner.

after a week, the Dr's office clerical person told me that the blood results were positive, although that doesn't mean that I have Celiac. She said that I need to talk to the doctor.

that Dr is never available to talk to. ever. she's kind of like the wizard of oz. i hear she's wonderful and knows everything, but i never actually see her.

so anyway...

I have an endocronologist because I have Grave's disease, which I know often co-exists with Celiac. But is a gastroenteroligist the right person to see?

FYI, I have a million questions.

For all of everyone's here sake, i hope the search function works well so i can find some answers. otherwise, you all might be sick of me pretty quickly.

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

Celiac.com Sponsor (A8-M):


VydorScope Proficient
VydorScope
Posted

Basicly in American the Bisopy via Endoscopy is the "gold standard' for the test. So if you want an offical DX of celiac disease, you need to see a GI doc and get an Endoscopey.

Canadian Karen Community Regular
Canadian Karen
Posted

Hi!

Welcome to the board!

Vincent is right - for the official diagnosis, nothing less than the positive biopsy will be accepted.

Don't worry about asking too many questions, that's what we are here for! Also, if you have a question but think it is too stupid or silly to ask, don't worry about that either. The only stupid question is the one that is not asked.....

There are lots of really helpful and knowledgeable people here on the board to help you navigate through the gluten free world!!!! It may be overwhelming at first, but trust me, it does become easier......

Welcome!

Karen

KaitiUSA Enthusiast
KaitiUSA
Posted

Well, I was diagnosed by blood tests alone and was able to get an official diagnosis that way without getting a biopsy.I had the full panel and a gene test done and the results came back positive and I have one of the main celiac genes (DQ2) so the GI doc. didn't even want to do a biopsy.Biopsies have been considered the "gold standard" however that can only rule celiac in and not out. If you have beginning stages or sporadic damage they can easily miss it. So you can't go by that alone.

Do you know which blood tests you had done? Some are very accurate. Some doctors are using certain blood tests in te place of biopsies.You probably need to see a good GI doctor and have him look at your results and discuss them with him/her. Alot of doctors are not up to speed about celiac though so you need to do some research or ask for suggestions on good celiac doctors in your area.

I also have Graves Disease and yes thyroid problems are common with celiac.

Don't worry about asking too many questions...we are here to help. Feel free to email me anytime as well :)

danikali Enthusiast
danikali
Posted

Random Guy,

may I ask what your symptoms were? Besides Graves disease...........and did you just get tested because your mom came up positive?

Thanks!

Dani

Random Guy Apprentice
Random Guy
Posted
  • Author

thanks.

i need an 'official diagnosis' because i have no symptoms, so it's the only way i'll know if i need to do anything.

but if my celiac panel suggests celiac, then what's the chances of it NOT being celiac?

thanks much

-rg

tarnalberry Community Regular
tarnalberry
Posted

Well... You can be a bit pushy at the office and note that you want to schedule a followup WITH THE DOCTOR, as you are, after all, PAYING HER. I would also encourage you to get a copy of the records sent to you, so you can see the results themselves. Some doctors will DX on bloodwork and response to the diet along, not needing a biopsy, but many require the biopsy to prove intestinal damage. Either way, in order to be a responsible physician, she needs to follow up on the positive diagnosis - not "prescribing treatment" (which is just telling you to be gluten-free, but still) would be medically very irresponsible of her.

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

Celiac.com Sponsor (A8-M):


VydorScope Proficient
VydorScope
Posted
thanks.

i need an 'official diagnosis'  because i have no symptoms, so it's the only way i'll know if i need to do anything.

but if my celiac panel suggests celiac, then what's the chances of it NOT being celiac?

thanks much

-rg

<{POST_SNAPBACK}>

Depends on which tests you had, and what score you got... can you post them? If you do KatiUSA can tell you the answer... cuase I always forget which is which :huh:

KaitiUSA Enthusiast
KaitiUSA
Posted
thanks.

i need an 'official diagnosis'  because i have no symptoms, so it's the only way i'll know if i need to do anything.

but if my celiac panel suggests celiac, then what's the chances of it NOT being celiac?

thanks much

-rg

<{POST_SNAPBACK}>

Which tests were run...was the whole panel with 5 tests run(tTG,EMA,IgA,IgG, Total Serum IgA)? Do you know which ones came back positive?

P.S:Oops guess I posted a few minutes too late...Vydor looks like we think alike lol...you beat me to it

Random Guy Apprentice
Random Guy
Posted
  • Author

Danikali,

i have no symptoms, at least not that i know of.

i got tested because my mom was diagnosed (also without symptoms), and becuase I have graves.

My mom got tested because her brother (my uncle) got stomach cancer, a bad one, unoperable, I can't remember the name. it was suggested that his siblings and kids get tested. Sadly, he passed away from the cancer 2 weeks ago. RIP Uncle Jack.

But who knows, maybe my headaches are caused by Celiac, and i've just been living with them.

or not.

so many many questions, but I'm trying to take it one step at a time.

step one: diagnosis

step two (depending on step one, of course), education.

thanks

-rg

Rachel--24 Collaborator
Rachel--24
Posted

Hi,

I have Graves Disease too. I never got an "official" diagnosis because I started the diet before any tests were run. I can see why an official diagnosis would be important in your case. I get bad symptoms so I guess it wasnt necessary for me to know "for sure". Good luck to you. :)

Random Guy Apprentice
Random Guy
Posted
  • Author

i wish i knew what tests were done, but, as of this minute, I don't

yesterday, when i spoke to the dr's office person who was not the dr, i did ask to have the results sent to me. years of graves disease tests has taught me something :P

If I have a disease, it's MY disease. I own it, not my Dr.

once i see what tests they ran, and how i scored, i'll post the results.

i was planning on waiting for those results prior to calling for an appt with a GI.

thanks for all the responses.

too bad i actually have to work at work today. i'd so much rather be researching this.

-rg

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      0

      Celiac Disease Beyond the Western World: Hidden Populations, Changing Diets, and Growing Awareness

    2. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    3. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    5. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,356
    • Most Online (within 30 mins)
      7,748
    JAGAPG
    Newest Member
    JAGAPG
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.