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

Diagnosis

JoyfulM

By JoyfulM
in Doctors

Recommended Posts

JoyfulM Rookie
JoyfulM
Posted

I'm going to see my Dermatologist tomorrow for the first time since I was diagnosed, and I have a bit of a bone to pick with her.

When I was diagnosed, I was told over the phone by the office secretary. I was told that I have DH, I need to go on a gluten free diet, to start taking Dapsone immediately, and to come in in two weeks for blood work. No explanation of what gluten is, no help with the diet, etc. Luckily I have a friend who is gluten-free who has been a big help. I called the doctor's office yesterday to see when I needed to come in Wednesday (all I was told was "sometime in the afternoon") so I could speak with her, and they acted surprised that I want to talk to the doctor. Did they just expect me to come in for blood work and leave?

Is this the normal experience during diagnosis? How should I express my concerns to her when I see her tomorrow?

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

Celiac.com Sponsor (A8-M):


DingoGirl Enthusiast
DingoGirl
Posted

Joyful,

Sadly, this is actually MORE help than most people get.....because at least she knew you HAD DH. Most derms don't even know what that is, or if they do, they rarely diagnose it.

Even my wonderful GI, whom I adore, handed me a few photocopied pages about what to eat and what not to eat - but it certainly didn't cover everything. That's when I found this forum, and learned how to eat/live from the people who live wtih it.

Your doctor and the people working in that office probably have no idea either 1) what gluten is, and 2) where it's found. It's highly likely the doctor has no idea how to direct you to eat.

So yeah, this is pretty normal, actually. :angry: It's doubtful the doctor will be able to give you any clear answers, but it might be fun to start asking tons of questions anyway, just to see how......befuddled she gets. (well, that's what *I* would do anyway :ph34r: )

Let us know what happens.

ptkds Community Regular
ptkds
Posted

Yep, pretty normal. That is how I found out. The nurse at my dr's office called me and said the test was positive, and that was it. I have talked to my dr since, and he admits that I know more than he does, and I can find all I need to know on the internet. Doctors are good at giving the wrong advice, too. So it is better to do your own research.

Darn210 Enthusiast
Darn210
Posted

Joy,

I would ask what blood test they are doing. DH by itself is a positive diagnosis for Celiac. Plus, you have already started a gluten free diet which may affect a blood screening. I would want to know what she is testing?

We were told by a nurse practitioner. However, we didn't even know they were testing my daughter for Celiac disease so it was totally out of the blue. I knew what it was because I have two friends with daughters who both have Celiac. They recommended a dietician but by the time we got in to see her, we were already well- and self-educated.

Trillian Rookie
Trillian
Posted
I'm going to see my Dermatologist tomorrow for the first time since I was diagnosed, and I have a bit of a bone to pick with her.

When I was diagnosed, I was told over the phone by the office secretary. I was told that I have DH, I need to go on a gluten free diet, to start taking Dapsone immediately, and to come in in two weeks for blood work. No explanation of what gluten is, no help with the diet, etc. Luckily I have a friend who is gluten-free who has been a big help. I called the doctor's office yesterday to see when I needed to come in Wednesday (all I was told was "sometime in the afternoon") so I could speak with her, and they acted surprised that I want to talk to the doctor. Did they just expect me to come in for blood work and leave?

Is this the normal experience during diagnosis? How should I express my concerns to her when I see her tomorrow?

My GI doctor emailed my primary doctor with my Celiac diagnosis and told my pcp in a brief, one paragraph email, "She has Celiac. Since I've diagnosed her and have done my job, I don't need to see her ever again. Good luck to her." My pcp made a copy of the email and sent it to me - she said, "If you have questions, please call."

Nyxie63 Apprentice
Nyxie63
Posted

In my case, I guess part of the problem is my drs are broken in now. They're so used to me doing my own research, they don't really bother telling me much (not that they ever really did) other than a few short sentences, and expect me to do the rest. The only problem with that is I usually can't think of pertinent or important questions during the appt. They generally pop into my head about 2 days later. Then I have to wait another 1-2 months before getting my answers, unless I happen to find them online.

The GI pretty much lost interest after the biopsy came back negative for Celiac, even though he's the one who suggested the dx in the first place. And the only reason I got the endoscopy/ colonoscopy was because of low ferritin and they were looking for a possible source of intestinal bleeding. He never suggested any kind of dietary changes to see if that would help to alleviate the symptoms. When I saw him again after the elimination diet, he was all kinds of impressed that I'd done it on my own. Yeah, no thanks to him. No pamphlets, no printouts, no nuthin. His advice? If it makes you feel bad, don't eat it. Ummmm.... duh?

The holistic MD was a similar experience. Didn't show much interest when I talked to him about possible intolerance to corn. When I asked him about doing an elimination diet, his reply was "Well, yeah. You can do that, I guess". Way to be encouraging. Thanks doc! When I saw him after the elimination diet, once again, he was all kinds of impressed. To me, it just seemed the next logical step. Don't get what the big deal is. And again, no advice, no pamphlets, no printouts, no nuthin.

Can you tell I'm just a little miffed with docs these days?

JoyfulM Rookie
JoyfulM
Posted
  • Author

My mom went with me to the doctor yesterday. In talking to her, we found out that:

1) My biopsy came back as probable for DH. She did not run the Celiac test. :huh:

2) Everything we said she agreed with. I probably could have convinced her that Hitler was really the Dali Lama.

3) To quote my mother, "The woman at the front desk knows more than she does."

So I'm going next week so she can draw blood for the Celiac test. Should I eat gluten before the test?

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

You have been gluten-free for two weeks. Chances are that a blood test will be false negative by now, even if it would have been positive two weeks ago. Eating gluten for a few days before the test might still result in a false negative result.

If I was you (and had the money), I'd forget about ignorant doctors and get tested with Open Original Shared Link instead. Those tests are still accurate up to a year of eliminating gluten.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
You have been gluten-free for two weeks. Chances are that a blood test will be false negative by now, even if it would have been positive two weeks ago. Eating gluten for a few days before the test might still result in a false negative result.

If I was you (and had the money), I'd forget about ignorant doctors and get tested with Open Original Shared Link instead. Those tests are still accurate up to a year of eliminating gluten.

But if you already have a diagnosis of DH, you don't NEED any more testing!!!! DH is a definitive diagnosis of celiac.

Ursa Major Collaborator
Ursa Major
Posted
But if you already have a diagnosis of DH, you don't NEED any more testing!!!! DH is a definitive diagnosis of celiac.

Right, I forgot about that! No more testing needed.

JNBunnie1 Community Regular
JNBunnie1
Posted
Right, I forgot about that! No more testing needed.

HAHAHAHAHAHAHAHAH!!! You know, I forget everything already and I'm only 23. How's everyone going to be able to tell when I get old if I have Alzheimer's? There won't be any difference!

ravenwoodglass Mentor
ravenwoodglass
Posted
HAHAHAHAHAHAHAHAH!!! You know, I forget everything already and I'm only 23. How's everyone going to be able to tell when I get old if I have Alzheimer's? There won't be any difference!

Keep eating gluten free and you most likely will not develop it. Did you see the research posted a while back about the link between dementias and celiac? For those of us with brain fog that certainly was not a surprise.

gfp Enthusiast
gfp
Posted

I agree, you were LUCKY to get diagnosed... sad as that is it's a reality.

As for 'help' ... Again you were lucky in a funny way. Most Doctors have no idea what gluten-free diet entails... they just never considered the issues like cross contamination or hidden gluten.

The help they are able to give is likely more harm than good. Lets presume you know its obvious you can't have normal bread and pasta... the lists likely just say 'cookies, cakes ....etc. etc.) so if you follow his chances are you're still getting gluten and wondering how/why??

This forum will really help much more.

Hang about, read old posts, do searches from cross contamination or hidden gluten etc.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,678
    • Most Online (within 30 mins)
      7,748
    Kristina S
    Newest Member
    Kristina S
    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

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.