Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Bad Medical Advice Many Years Ago--Any Way To Get Tested For Celiac Now?
0

9 posts in this topic

My apologies if this is a repeat topic--seems like it would have been asked before but I'm not seeing it.

 

About 12 years ago I saw a doctor who didn't really understand Celiac disease.  She advised me to get a blood test for a wheat allergy and when it came back negative, she suggested an elimination diet.  When I noticed how awful I felt when I added gluten back into my diet, she said, "Great!  Now you know what's wrong--stop eating gluten."  So I did.

 

You all probably see the problem with this plan--when I later learned about Celiac disease and how important it is to be tested for it so you can monitor your progress, I discovered that I could not be tested because I haven't been eating gluten for so many years.  I'm told that if I want to be tested, I'll need to eat gluten for three months. !@#$ no!   No way will I purposefully invite that kind of misery into my life for the sake of a diagnosis. So I've been going along eating gluten-free, never knowing if I have Celiac or not.  But still, I would like to know for sure for various reasons.  My family wants to know as well.

 

So my question: does anyone know of a way around this situation so I could get a real diagnosis?  I fear there isn't, at least not with current medical technology.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Sorry, but the only way i can think of is by doing the gluten challenge. There is a genetic test, but it by itself is not a diagnosis tool (it can help, but cannot stand alone) because about 30% of the population has the genetics for it.

0

Share this post


Link to post
Share on other sites

That's what I figured.  I was just hoping for some miraculous new science I hadn't yet heard about.  Ah well.

Sorry, but the only way i can think of is by doing the gluten challenge. There is a genetic test, but it by itself is not a diagnosis tool (it can help, but cannot stand alone) because about 30% of the population has the genetics for it.

0

Share this post


Link to post
Share on other sites

I actually don't see a problem with that beyond other medical professionals perhaps not believing that you have a gluten problem. How you feel is a huge part of monitoring. If you feel bad, and you have celiac disease and you suspect that trace gluten is still affecting you, blood or intestinal tests could easily show up positive without changing your diet from what it currently is at all.

Besides which, you can have non-celiac gluten sensitivity and still have no positive tests. Both diseases run in families with celiac disease, so all first degree relatives should definitely still get celiac disease testing and consider that they might have gluten intolerance if they are in poor health. There should be no need to put a name to something that obviously makes you feel ill to make someone believe you or cater to you. That's their issue, not yours.

 

I honestly don't know what important monitoring you mean, maybe I'm just missing something.

0

Share this post


Link to post
Share on other sites

Hi kamarie,

 

I'm had a similar experience.
The doctor I had in 2010 told me to stay gluten free and didn't want me to get tested.

I didn't know much. Then in 2011 my health problems returned.

I've been doing the gluten challenge since november 2012 to do the tests.

 

..............................................................................................................................................................

Here is another test:

 

"Rectal biopsy is useful for people who did not get tested 

before starting a gluten free diet and then want to definitely

know if they really do have Celiac Disease."

source: http://glutenfreeworks.com/gluten-disorders/celiac-disease/diagnosis-and-testing/

 

also:  http://www.ncbi.nlm.nih.gov/pubmed/9260799

..................................................................................................................................................................

I didn't find a doctor in my city who knows how to do this test.

0

Share this post


Link to post
Share on other sites




Cavernio, this page explains why I'm thinking about diagnoses:  http://celiaccentral.wordpress.com/2012/10/03/going-gluten-free-before-the-diagnosis-do-or-dont/

 

AFAIK, if you have Celiac disease, doctors are more aggressive about checking for nutritional deficiencies and conditions related to having a severely damaged intestinal tract.  One person told me that they will also monitor your IgE (something like that, I don't know all the terms very well yet) to make sure you aren't eating gluten you don't know about.  But I haven't talked to an actual MD about this, so I could be wrong.

 

For me personally, it would help me determine how strict I need to be.  Although a gluten-free diet helps a lot, it hasn't made me 100% better.  Is it because I'm not really 100% gluten-free and I only think I am, and I'm still sick because of cross-contamination?  Or is something else causing my remaining health issues?  If a doctor could test me and say, "Well, there's no evidence you've consumed any gluten at all for the past 6 months," then I'd know there are other issues to investigate.

 

All of this could be done without a diagnosis of Celiac, and I am definitely trying my best to coordinate it all myself and do my own experimenting, but it would be a lot easier if I had a diagnosis and a cooperative, knowledgeable doctor (I'm resisting going into a tirade about my awful experiences with gastroenterologists, lol)

0

Share this post


Link to post
Share on other sites

Thanks for the links, Deanimated Marcus, that's the first I've heard of a rectal biopsy, which sounds really scary but I'm glad to have another option to research.

0

Share this post


Link to post
Share on other sites

I would just assume you have celiac, and when dealing with medical professionals with future health concerns, just tell them you have it and they will consider other avenues (autoimmune diseases) that they wouldn't otherwise.

 

I say, continue doing so well on the gluten-free diet and don't make yourself sick in order to determine if you are a celiac or have non-celiac gluten intolerance (NCGI). After so many years eating gluten free, there isn't any difference that I know of in the handling of the disease as long as you stay gluten-free.

 

Welcome to the board.  :)

0

Share this post


Link to post
Share on other sites

Hi kamarie,

I'm had a similar experience.

The doctor I had in 2010 told me to stay gluten free and didn't want me to get tested.

I didn't know much. Then in 2011 my health problems returned.

I've been doing the gluten challenge since november 2012 to do the tests.

..............................................................................................................................................................

Here is another test:

"Rectal biopsy is useful for people who did not get tested

before starting a gluten free diet and then want to definitely

know if they really do have Celiac Disease."

source: http://glutenfreeworks.com/gluten-disorders/celiac-disease/diagnosis-and-testing/

also: http://www.ncbi.nlm.nih.gov/pubmed/9260799

..................................................................................................................................................................

I didn't find a doctor in my city who knows how to do this test.

Not sure how a rectal biopsy would help with Celiac as it manifests in the small intestine. I have never seen a Celiac center recommend such a thing.
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
      104,091
    • Total Posts
      920,311
  • Topics

  • Posts

    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,121
    • Most Online
      1,763

    Newest Member
    Sambud
    Joined