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

  • 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. FannyRD
      - FannyRD replied to FannyRD's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

      Thanks for the resource! I will check it out!
    2. Scott Adams
      - Scott Adams replied to FannyRD's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance"...
    3. Scott Adams
      - Scott Adams replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

      Living with celiac disease can be especially hard when you’re in a smaller town and don’t have many people around who truly understand it, so you’re definitely not alone in feeling this way. Ongoing fatigue, joint pain, and headaches are unfortunately common in people with celiac disease, even years after diagnosis, and they aren’t always caused by gluten ...
    4. trents
      - trents replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

      Welcome to the celiac.com community, @Cecile! It is common for those with celiac disease to develop sensitivity/intolerance to non-gluten containing foods. There is a high incidence of this with particularly with regard to dairy products and oats but soy, eggs and corn are also fairy common offenders. Like you eggs give me problems depending on...
    5. FannyRD
      - FannyRD posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

      I work as a renal RD and have a Celiac pt which has been rare for me (I might have had 3-4 Celiac pts in 15 years). I wondered if anyone can confirm that these medications are gluten free and safe for Celiac. Ferric citrate (Auryxia) Sucroferric oxyhydroxide (Velphoro) lanthanum carbonate (Fosrenol) sevelamer carbonate (Renvela) ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,180
    • Most Online (within 30 mins)
      7,748
    Eldret419
    Newest Member
    Eldret419
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • FannyRD
      Gluten free phosphate binders for dialysis patients

      By FannyRD · Posted

      Thanks for the resource! I will check it out!
    • Scott Adams
      Gluten free phosphate binders for dialysis patients

      By Scott Adams · Posted

      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Symptoms

      By Scott Adams · Posted

      Living with celiac disease can be especially hard when you’re in a smaller town and don’t have many people around who truly understand it, so you’re definitely not alone in feeling this way. Ongoing fatigue, joint pain, and headaches are unfortunately common in people with celiac disease, even years after diagnosis, and they aren’t always caused by gluten exposure alone. Many people find that issues like low iron, low vitamin D, thyroid problems, other autoimmune conditions, or lingering inflammation can contribute to that deep exhaustion, so it’s reasonable to push your doctor for more thorough blood work beyond just vitamin B. As for eggs, it’s also not unusual for people with celiac disease to develop additional food intolerances over time; tolerating eggs as an ingredient but not on their own can point to sensitivity to the proteins when they’re concentrated. Some people do better avoiding eggs for a while, then carefully testing them again later. Most importantly, trust your body—if something consistently makes you feel awful, it’s okay to avoid it even if it’s technically “allowed.” Many of us have had to advocate hard for ourselves medically, and connecting with other people with celiac disease, even online, can make a huge difference in feeling supported and less isolated.
    • trents
      Symptoms

      By trents · Posted

      Welcome to the celiac.com community, @Cecile! It is common for those with celiac disease to develop sensitivity/intolerance to non-gluten containing foods. There is a high incidence of this with particularly with regard to dairy products and oats but soy, eggs and corn are also fairy common offenders. Like you eggs give me problems depending on how they are cooked. I don't do well with them when fried or scrambled but they don't give me an issue when included in baked and cooked food dishes or when poached. I have done some research on this strange phenomenon and it seems that when eggs are cooked with water, there is a hydrolysis process that occurs which alters the egg protein such that it does not trigger the sensitivity/intolerance reaction. Same thing happens when eggs are included in baked goods or other cooked dishes since those recipes provide moisture.  So, let me encourage you to try poaching your eggs when you have them for breakfast. You can buy inexpensive egg poacher devices that make this easy in the microwave. For instance:  https://www.amazon.com/Poacher-Microwave-Nonstick-Specialty-Cookware/dp/B0D72VLFJR/ Crack the eggs into the cups of the poacher and then "spritz" some water on top of them after getting your fingers wet under the faucet. About 1/4 teaspoon on each side seems to work. Sprinkle some salt and pepper on top and then snap the poacher shut. I find that with a 1000 watt microwave, cooking for about 2 minutes or slightly more is about right. I give them about 130 seconds. Fatigue and joint pain are well-established health problems related to celiac disease.  Are you diligent to eat gluten-free? Have you been checked recently for vitamin and mineral deficiencies? Especially iron stores, B12 and D3. Have you had your thyroid enzyme levels checked? Are you taking any vitamin and mineral supplements? If not, you probably should be. Celiac disease is also a nutrient deficiency disease because it reduces the efficiency of nutrient absorption by the small bowel. We routinely recommend celiacs to supplement with a high potency B-complex vitamin, D3, Magnesium glycinate (the "glycinate" is important) and Zinc. Make sure all supplements are gluten-free. Finally, don't rule out other medical problems that may or may be associated with your celiac disease. We celiacs often focus on our celaic disease and assume it is the reason for all other ailments and it may not be. What about chronic fatigue syndrome for instance?
    • FannyRD
      Gluten free phosphate binders for dialysis patients

      By FannyRD · Posted

      I work as a renal RD and have a Celiac pt which has been rare for me (I might have had 3-4 Celiac pts in 15 years). I wondered if anyone can confirm that these medications are gluten free and safe for Celiac.  Ferric citrate (Auryxia)  Sucroferric oxyhydroxide (Velphoro)  lanthanum carbonate (Fosrenol) sevelamer carbonate (Renvela)   Thank you!
×
×
  • 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.