• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Did Your Doctor Tell You?
0

23 posts in this topic

For those of you who were diagnosed by a doctor, how did the doctor tell you? After my endoscopy my doctor called told me and pretty much hung up. Unluckily for me I was starting my shift at my evening job 15 minutes later. They then sent me to a nutritionist (which you would think would be positive), who's food list was out of date and only gave me a list of foods to eat and said she could do nothing more to help me. While I understand that this isn't a diagnosis of cancer, it seems to be that this could have been done more compassionately. What did other people experience?

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


After my blood test my nurse called me and told me I test positive for celiacs disease, of course I asked her what that meant. She explained briefly, and then that was it. I was on my own. That's probably the reason I tried to ignore my disease for a year. She didn't stress how harmful gluten was to my body

0

Share this post


Link to post
Share on other sites

My doc left a long rambling message about how my white blood count was normal and I didn't have arthritic marks and my this and that were normal, and then right when I'm about to hang up thinking that he has nothing to say, he ends with "and your ttG and gliadin antibodies are off the charts so you probably have celiac sprue."

0

Share this post


Link to post
Share on other sites

I was told my biopsy was positive (already had positive blood test that lead up to it) and was given the "option" to go gluten free immediatly or retest in three months. :huh: Luckily I had been lurking on here before and doing research on my own to know that I needed to be gluten free after the scope/biopsy and that the other was was just plain STUPID! I did consult with a dietician and she basically told me things I had already learned. Her information and pamplets were out of date too and I found two mistakes in the pamplets she handed out. So for me the dietician was really of no benefit. Thank goodness the insurance payed for it.

0

Share this post


Link to post
Share on other sites

was told bluntly to go on diet and live with it and that there was no need for a GI doctor.

0

Share this post


Link to post
Share on other sites
Ads by Google:


I was told by my surgeon, he was really upfront that he didnt know much about it, and to find a good GI doctor, (still looking for that) they also sent me to a dietician who also gave me outdated info. I have learned more and given better advice from all the wonderful people here then anywhere else. Does anyone else kinda feel like most doctors dont know what to do with us.

0

Share this post


Link to post
Share on other sites

I only had symptoms for 2 months when I saw a gastroenterologist. He sent me for bloodwork and scheduled me for a screening colonoscopy since I was close to 50. After my colonoscopy, he said, "I have good news and bad news." I asked for the good news first. He said, "I know what's causing your diarrhea and it can be stopped." Then I asked for the bad news. He said, "You can never eat wheat, rye, or barley again." He told me he'd never seen such high blood levels before.

I went home and did my own research so that by the time I actually got to the dietician/nutritionist at the hospital she told me I already knew more about celiac than she did.

1

Share this post


Link to post
Share on other sites

I feel like all the general doctors I have gone to pretty much know little to nothing about this disease. I had to self diagnose and demand a blood test. When it came back positive the general doctor just said to start a gluten-free diet. My blood test was extremely high and I have inflammatory arthritis so I didn't want to mess around. I called the Mayo Clinic and got an appointment with the best doctor ever! He immediately scheduled a biopsy, bone density scan and did all sorts of blood work and found my B-12 levels to be alarmingly low. If I would have stuck with the general doctor's advice this would never have been found and I could have ended up with severe neurological damage.

I haven't been back to a general doctor yet and I won't be back to my previous 2. My neighbor is a nurse so I asked her for some references of open minded doctors who are into whole body health. She gave me some places to start. I am also going to look online and see if I can find references of a good doctor locally.

If you are diagnosed by a blood test to have Celiac you need to see a GI doctor to order all the correct tests. There are so many other disorders that go along with this disease especially with the absorption of vitamins.

Don't give up if you don't like how your doctor treats you. Ask neighbors, friends, relatives if they can recommend someone. Easier said than done because I haven't found one yet but I am going to keep trying!

0

Share this post


Link to post
Share on other sites

Well I had been seeing my GI for over a year and I had gone through every test he had except Celiacs. He even told me he didn't think I had it but because he had nothing else he was going to try testing me for it before he sent me to another specialist. So I got the blood test and his nurse called to tell me it was positive and I would need another endoscopy to confirm it. I had had an endoscopy a month and a half before to test for Crohn's (I think). After the second endoscopy my doctor called me I told me there was no way I didn't have Celiacs and I needed to schedule a bone density scan asap. After that I had one visit with him where he told me I needed to find a dietician and be gluten free but there was nothing else he could do for me. I got the feeling he was just proud he figured it out.

0

Share this post


Link to post
Share on other sites

After my blood test my nurse called me and told me I test positive for celiacs disease, of course I asked her what that meant. She explained briefly, and then that was it. I was on my own. That's probably the reason I tried to ignore my disease for a year. She didn't stress how harmful gluten was to my body

Same here. No warning or anything - just the nurse's blunt, "Did you know you have celiac disease? You cannot eat gluten any more. Go see a dietitian for handouts." That threw me into a panic as I was not expecting that result whatsoever! Boy, have I learned a lot since then and about 98% of it from this board. :)

0

Share this post


Link to post
Share on other sites

My doctor suggested I go on a gluten free diet. I was never biopsied although I had an abnormal reading with my stool tests and blood antibody test.

And nothing seemed to be abnormal when tested 12 months after that :)

Never was there a need for what the call an "official" diagnosis. ;)

0

Share this post


Link to post
Share on other sites

In the middle of the endoscopy, when I still a bit loopy from the drugs, the gastro told me she saw signs of Celiac. Or at least I think she did, cuz I couldn't really remember anything afterwards. At the follow up appointment she said "you have celiac disease. Look it up on the internet. See you in 6 months." And she walked out of the room.

0

Share this post


Link to post
Share on other sites

Well, I was lying in a hospital bed nearly unable to stand on my own because of what turned out to be undiagnosed celiac but which the doctors thought was non-Hodgkins lymphoma, so I was delighted by the news. He came in and told me directly. It was a total relief to find out what was killing me.

0

Share this post


Link to post
Share on other sites

basically I self diagnosed, but went to a GI for "official" diagnosis to basically get my (now ex) husband to stop bugging me about food. I had to go back to eating gluten for 8 weeks for the challenge, I had the blood test, then had to wait a while still for the endoscopy. The blood results came back "99.9 % positive for Celiac" and the doc said "don't eat pasta or bread anymore" and then the endoscopy showed severely flattened villi, inflammation of the esophogus and a hiatal hernia.

0

Share this post


Link to post
Share on other sites

My husband took me to the emergency room when I reached the point that I could barely stand and I was loosing my vision. BP was 40/60 and they couldn't feel a pulse.

Fortunately my internist called on a GI to consult and she immedately suspected Celiac. After the positive biopsy she told me I had Celiac disease and it could be totally controlled with strict dieting.

She sent the hospital dietician to talk with me. The dietician said she didn't know much about gluten. Look on the internet. Best thing I got from her was a booklet that contained a great cornbread recipe!

I am totally thankful that the right GI was on call. She has been wonderful and supportive. She even sent me a tape of a lecture on celiac given at a medical conference she attended.

My diagnosis was almost four years ago and I am healthy and happy. Finding this sight was a God-send.

0

Share this post


Link to post
Share on other sites

I started checking it out when suggested through somebody on epilepsyfoundation.org gave me links to information describing my epilepsy diagnosis with gluten sensitivity. My neuro couldn't read the paper that I printed out for him, but sent me in for a blood test. I went to my primary doctor and when he read the medical paper that I had shown my neuro, he said, "Well that's got your name written all over it. Doesn't it." He looked at my blood tests and asked if I had already started a gluten free diet before the test, to wich I replied that I may have (I couldn't remember, but think I had :unsure: )". I guess the test came up with for tests of my blood, two of wich came up positive and two negative. He told me that it could've been that way if I had already started a gluten free diet and the best way to find out would be to go back to gluten for a month and see if there is any difference. I tried that and started to have mild seizures again in about a week. My doctor has been able to help me out since his daughter has celiac disease and they have actually written a cook book on the subject. I haven't bought their book, but have gone gluten free. I have not had many seizures, but may have a mild one or a few after consuming gluten now, luckily no where near to the degree that I used to have. So that's my story on it. Gluten sensitive, but not celiac, thank goodness. B)

Later,

Ray

0

Share this post


Link to post
Share on other sites

My tests were actually ordered by a neurologist to RULE stuff out! (no GI symptoms)Went to my GP for followup and she said "tell me about the tests that Dr X ordered", so I told her about the appointment (although truthfully I did not know WHAT he tested me for at the time). I actually went to the neuro for all my neuropathy problems. Anyway, GP says "your antibodies are screaming high for Celiac and I never would have guessed this". She sent me to a dietician (whose brother has celiac) and she was great! She immediately ararnged a bunch of tests and bone density scan and my appt with the GI. I guess I was one of the lucky ones.

0

Share this post


Link to post
Share on other sites

My mum and I were told by my old doctor (he has now retired) that if the test came back positive, he would call us. He didn't call us, but something in my gut instinct(haha) told me it was coeliac, after researching about it online.

I called and made an appointment, and when we got there, he just blurts out of nowhere and goes "You have coeliac disease"

I thought it was really unprofessional and I wasn't prepared for it at all :angry:

0

Share this post


Link to post
Share on other sites

Thanks everyone for your replies. I wish that doctors did a better job of providing the diagnosis, even though at that point they often can't do much. It seems like giving a life changing diagnosis should deserve some respect.

0

Share this post


Link to post
Share on other sites

I spent 2 weeks at the Mayo clinic having every test imaginable. I had a biopsy that was positive and blood work that showed the gene connection and a weak positive on blood work. Have had gastro issues for years and worse the last 4 months. Constant nausea. They didn't really say this is what you have. Just met with the dietician who gave me loads of info and then my final appt with GI told me blood result and biopsy and to go Gluten free, and they would retest in a year to make sure numbers were going down and intestines healing. I was a little disappointed with my GI as he was not very compassionate or willing to answer all my questions. To go on a referral for Autonomic Nervous disorder only to find out I do not have that and have celiac and a large cyst that I am to follow up with my doctors back home unless I wanted to drive back 8 hours to see a doc there in 2 weeks. Not as efficient as they make Mayo sound. But at least they found out why I have been so miserable. More than I can say about what happened for years of being referred in circles here. And kudos to an amazing dietician, although a bit rushed, was very informative.

0

Share this post


Link to post
Share on other sites

Wow. I'm so sad to hear all these stories. My doc was wonderful. He's been following my care for a couple years, and my endo was part of the monitoring of my crohns disease. It just so happened that he found the blunted villi (via biopsy). I can't remember how I was told (over the phone or at the office). My memory is no good even though I was only diagnosed this February! What I do remember is the office visit where he talked to me about my biopsy results at length. Told me MANY times that he strongly recommended that I go on a gluten-free diet. Talked to me at length about the disease, where I can find information, and gave me websites and the web address of a recent conference. He gave me information about a local gluten-free bakery and insisted I talk to the dietician. I was unconvinced, so he gave me an Rx for the blood tests (since I insisted).

The dietician was full of information and gave me so many things to take home (booklet, copies of local restaurant menus and coupons, etc.). Everyone was compassionate, but also adamant about the seriousness of the disease.

I didn't realize how lucky I am to live in the Pittsburgh area. They seem to have really awesome docs here.

1

Share this post


Link to post
Share on other sites

My doctor didn't tell me. I will be telling him.

1

Share this post


Link to post
Share on other sites

I got a phone call on my birthday and was told I have Celiac disease. Not having a clue, as they were looking for why I was anemic and hadn't considered the 25+ years of IBS might be related, I asked "how do you spell that?". She told me how to spell it and that I was going to have to rid gluten from my diet so naturally my next question was "what is gluten?". I don't remember much after that...I heard something like blah, blah...no bread, no pasta...blah, blah...no beer, no pizza....blah, blah...then I started to cry. My follow up appointment was almost a month later and by then, I had done all the research and had found this Godsend of a website. Basically I spent 5 minutes with him and was told to go talk to a nutritionist.

That will a year ago this Thursday...life is so much better now that I know. B)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,466
    • Total Posts
      930,721
  • Member Statistics

    • Total Members
      63,896
    • Most Online
      3,093

    Newest Member
    LMS
    Joined
  • Popular Now

  • Topics

  • Posts

    • KathleenH, I swear by MatteosPizza and they make National Delivery. I have been known to buy them by the dozen. https://www.matteospizza.com/ BellaMonica's is not a bad corn based crust.  By not bad I mean "suprisingly good" that can be bought at most grocery stores. Here is there ZIP locator page to see if they are carried in your local area. http://glutenfreepizza.typepad.com/gluten-free-pizza/where-to-find-bella-monica.html I hope this is helpful. posterboy,  
    • Hey all--have Hashimoto's and am being worked up for epigastric discomfort and IBS like symptoms---   My blood work had an IgA within the lower end of normal range, negative TTG, but weakly positive DGP.   My endoscopy showed a "nodular" duodenum with the biopsy stating there was "reactive lymphoid hyperplasia"...   I have a follow-up with the GI in 3 weeks.   Wondering about any help?
    • DH wasn't linked to celiacs until 1967 from my research...
    • I was at a used book sale yesterday and happened to see an old dermatological textbook.  Of course the first thing I looked up was dh just to see what it had to say.  What I read shocked me as well as scared me half to death. The description of dh was right on, severe itching, blistering, bilateral, arms/elbows etc. but there was no mention at all of celiac, wheat, gluten or anything along that line.  The reason they gave for the cause of dh was "a manifestation of an internal cancer," and later it said it results from cancer, usually cancer of the ovaries or one other that I can't remember.  Being a hypochondriac, this was about enough to put me into cardiac arrest. I looked at the publication date and it was printed in 1963 which really isn't all that far back.  Has anyone else ever heard of this?? I thought by 1963 they were quite certain that dh was a form of celiac or did it come way after that? Sorry if I'm freaking anyone out by asking this.  That's not my intent at all, but since cancer is one of my biggest fears I found this rather unsettling.
    • Feeneyja, This will be a little long but I will  try to be brief as possible. See this discussion thread that talks about how Pellagra is often diagnosed as other disease's today because doctor's rarely recognize it today in a clinical setting. Pellagra's is described as the 3 D's if you don't count the 4th D of death if it goes long enough and is not diagnosed in a timely manner. Dementia (Neurological) Digestive (GI problems), Dermatitis issues (Ezcema, Psorsias, Acne etc.) According to mdguidelines website http://www.mdguidelines.com/pellagra indicates that quoting “The diagnosis of pellagra is straightforward when the classic rash is present but may be elusive if there are only gastrointestinal and/or neurological manifestations.” And why I believe in many cases Pellagra goes undiagnosed today.  Because doctor's have forgotten how it presents. A longer researcher article about the neurological presentations of pellagra mention the many ways a Niacin deficiency can present itself. Here is the link https://www.hindawi.com/journals/cggr/2012/302875/ and I will quote some of the neurological/dementia related symptom's of an undiagnosed pellagra patient. "Mental symptoms were wider than dementia, in that depression, fatigue, psychomotor retardation, mania, obsessions, and a whole range of psychoses with auditory and visual hallucinations were well described, along with personality change and sociopathic and drug and alcohol addictive behaviours. Panic disorders were seen as was a general inability to deal with physical or mental stress. Poor brain development such as hydrocephalus or cerebral palsy was also common. Acute delirium or even coma occurred, with some patients having myoclonus and other extrapyramidal signs reminiscent of the spongiform encephalopathies. The dementias of pellagra included features akin to Lewy body, Alzheimer’s, frontotemporal, vascular, and prion diseases. Parkinsonism was also common and a festinant gait was first described in pellagrins. Tremors of various descriptions, including asymmetric rest tremors, were noted and some patients had typical paralysis agitans. Pellagrins had a characteristic expressionless facies, so some signs of parkinsonism were present in most cases. Many features of pellagra closely resemble the nonmotor aspects of PD. The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." It is me again. You can see the neurological symptom's of Pellagra are severe and wide ranging. Taking Niacinamide 3/day for 6 months can alleviate many of these symptom's if your daughter has subclinical pellagra and the doctor's don't know to look for it. I had deep depression for many, many years and I shudder to think now that only a Vitamin could of helped me 30+ years ago and the doctor's didn't know to look for it. Shoot it isn't just Niacin.  All B-Vitamin's help your stress levels.  IF you have stress B-Vitamins can help your stress levels. I take Folic Acid for Blood pressure problems and it keeps my BP with in a normal range. A article on celac.com discussed this topic in detail a few months ago. https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html I hope it is helpful.  Good luck on your continued journey. If you have never heard of Pellagra you are not alone. Dr. Heaney discusses why this is so in his online article Pellagra and the 4 D's. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ If you don't have time to read the whole hindawi article I also suggest this shorter but informative blog about why a Niacin deficiency can cause dementia related conditions. https://pellagradisease.wordpress.com/ Then decide for yourself and your daughter's sake to decide whether to take Niacinamide or not to see if it helps the D's symptom's she is experiencing (Digestive, Dementia etc.) The International Journal of Celiac Disease makes note of this in their research that Pellagra could be contributing to symptom's being diagnosed as Celiac disease today instead of a possible (co-morbid) Pellagra that causes the same symptom's. When they discuss how Pellagra and Celiac disease are related (Co-Morbid) in a Celiac diagnosis are surprised to find that in 58% of Celiac's -- can also be diagnosed with Pellagra. See this link http://pubs.sciepub.com/ijcd/3/1/6/ Quoting 3. Pellagra and celiac disease "The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [38]. The skin manifestations in pellagra might have some additional etiologies, since multiple nutrient deficiencies are at the origin of the cutaneous manifestations in celiac disease. The following nutritional deficiencies inducing skin rashes, were describe in celiac disease: Zinc, Iron, Vitamin A, E, B12, niacin, folate, selenium and essential fatty acids [39, 40]." If one is being diagnosed incorrectly the other co-morbid conditions can continue to cause Celiac like symptom's. But if the majority of those who have been diagnosed as Celiac could be helped by taking Niacinamide I see no you reason you shouldn't try it. Or at least research it some more. Again good luck on your continued journey. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,
  • Upcoming Events