MD diagnosed based on skin rash and symptoms. Do I need other tests?

[ShellWhele]

Based on an elimination diet, and then reintroduction of gluten foods, my MD diagnosed me with Celiac HD.  My main symptoms are skin rash and blisters after eating gluten.  I also get body aches, headaches and some intestinal issues after even a small amount of gluten. I also had the slow growth as a child and the mottling on my bones, particularly on my teeth that are characteristic of some Celiac cases.   After having me eat gluten and seeing my reactions, then  having me follow a strict gluten free diet my MD had me run a blood test.  When it came back negative my doctor said that meant I am positive for Celiac.   I asked him if I should be eating gluten to get a positive test.  He said my reactions were severe enough that he did not want me to go through the process of eating enough gluten to kick off a positive test.  He said it would require me to eat 2 to 4 pieces of bread per day for at least one month and possibly for three.  We both agreed that it wouldn't be worth it. and as I've accidently ingested gluten and had reactions, I have no doubt that gluten causes my symptoms.  My MD has gone overseas to work with Doctors without borders.  I will be seeing a new doctor next week.  How do you suggest I approach this.  Can I just tell him I have Celiac, or do I need to explain the unusual diagnosis.  

Thanks Shelley

[trents]

6 hours ago, ShellWhele said:

Based on an elimination diet, and then reintroduction of gluten foods, my MD diagnosed me with Celiac HD.  My main symptoms are skin rash and blisters after eating gluten.  I also get body aches, headaches and some intestinal issues after even a small amount of gluten. I also had the slow growth as a child and the mottling on my bones, particularly on my teeth that are characteristic of some Celiac cases.   After having me eat gluten and seeing my reactions, then  having me follow a strict gluten free diet my MD had me run a blood test.  When it came back negative my doctor said that meant I am positive for Celiac.   I asked him if I should be eating gluten to get a positive test.  He said my reactions were severe enough that he did not want me to go through the process of eating enough gluten to kick off a positive test.  He said it would require me to eat 2 to 4 pieces of bread per day for at least one month and possibly for three.  We both agreed that it wouldn't be worth it. and as I've accidently ingested gluten and had reactions, I have no doubt that gluten causes my symptoms.  My MD has gone overseas to work with Doctors without borders.  I will be seeing a new doctor next week.  How do you suggest I approach this.  Can I just tell him I have Celiac, or do I need to explain the unusual diagnosis.  

Thanks Shelley

The rash and blisters are likely dermatitis herpetiformis, one of the classic manifestations of celiac disease, the other classic manifestation being GI distress. Some have one or the other. Some have both. All of the other symptoms you mention are very common with celiac disease. Given that you have remission of symptoms in the absence of gluten consumption and a return of them when you get glutened, it seems like a no brainer conclusion to me that you have celiac disease. As far as approaching the new physician about this, I would just say, "My previous doctor diagnosed me with celiac disease and let it go at that unless the new doc pushes you on it. Then you can say to him/her, "I was never tested because I had already started on the gluten free diet but my symptoms are classic and when I abstain from gluten they go away. And when I accidentally ingest gluten they return."

[Scott Adams]

Although it would have been ideal to have at least gotten a blood test while you were still eating gluten (your first doctor should have done this), at this point given your DH and other symptoms I agree that there may be no benefit to doing a gluten challenge for a formal diagnosis. Your new doctor may want to call it non-celiac gluten sensitivity, but the “prescription” is the same—a gluten-free diet.

[RMJ]

I would just tell your new doctor that your previous doctor diagnosed you with celiac disease.  Unless asked specifically, I would not give any details that would give him/her an opening to question that diagnosis.  Unfortunately there are many doctors who seem to be “anti-celiac.” 

[ShellWhele]

11 hours ago, trents said:

The rash and blisters are likely dermatitis herpetiformis, one of the classic manifestations of celiac disease, the other classic manifestation being GI distress. Some have one or the other. Some have both. All of the other symptoms you mention are very common with celiac disease. Given that you have remission of symptoms in the absence of gluten consumption and a return of them when you get glutened, it seems like a no brainer conclusion to me that you have celiac disease. As far as approaching the new physician about this, I would just say, "My previous doctor diagnosed me with celiac disease and let it go at that unless the new doc pushes you on it. Then you can say to him/her, "I was never tested because I had already started on the gluten free diet but my symptoms are classic and when I abstain from gluten they go away. And when I accidentally ingest gluten they return."

Thank you so much!!!! I really needed a little affirmation.  :0)

 

[ShellWhele]

6 hours ago, RMJ said:

I would just tell your new doctor that your previous doctor diagnosed you with celiac disease.  Unless asked specifically, I would not give any details that would give him/her an opening to question that diagnosis.  Unfortunately there are many doctors who seem to be “anti-celiac.” 

Thank you.  My old Dr, was so worried about ;labeling any of us whit preexisting conditions as our insurance is quite sticky at times.  For example three of my four kids have had seizures, but our MD called them shaking events. He said they wouldn't become seizures unless they happened again.  

That may be why he didn't run the tests for Celiac.

 

[fllstuart77]

 

On 9/13/2021 at 3:20 AM, ShellWhele said:

  After having me eat gluten and seeing my reactions, then having me follow a strict gluten free diet my MD had me run a blood test.  When it came back negative my doctor said that meant I am positive for Celiac. 

 😂 😂 😂

that must be the dumbest doctor alive

[trents]

12 hours ago, ShellWhele said:

Thank you.  My old Dr, was so worried about ;labeling any of us whit preexisting conditions as our insurance is quite sticky at times.  For example three of my four kids have had seizures, but our MD called them shaking events. He said they wouldn't become seizures unless they happened again.  

That may be why he didn't run the tests for Celiac.

 

But . . . if it's in your chart as "celiac disease" you now have a preexisting condition, regardless of how the physician arrived at that conclusion, testing or no.

[AlwaysLearning]

There are up sides and down sides to having test results if you live in the United States.

You could pay more for your health insurance if you get labeled as having a preexisting condition. I personally disagree with the way the private insurance companies can extort money from people who might be living healthier lifestyles than everyone else around them just because they have a check box on a form. But until we have nationalized insurance, this will continue to be a problem for anyone who is sourcing their own insurance. If you have a plan through work or have an Obama care plan, this may be less noticeable, but it is something you should take into consideration if you ever decide to leave a job and switch to being self employed.

The United States also has a tax deduction (or they used to) that you could skip paying taxes on the additional expense of gluten free food. So if a regular loaf of bread costs $3 and the gluten free loaf costs $7, you could claim a deduction for the $4 difference. Note that you would need to be able to prove that you have celiac in order to take this deduction, in addition to keeping accurate records and receipts for all of your gluten free expenses (for seven years in case of audit). (The longer I stay gluten free, the fewer premade gluten free foods I eat. I cook from scratch instead so these differences in costs have become more minimal over time.)

But the truth is, you do have an official diagnosis. It is simply a diagnosis based on the symptoms and medical history rather than test results. Your doctor may have already made an official note of celiac in your medical record so you might already be "labeled", so to speak. And with todays' computerized records, depending on your medical provider, those records may already be made available to several other entities, such as other doctors within a medical practice, hospital system, or even to a pharmacy chain, etc.

When it comes to how to share the diagnosis with a new doctor, I think I would come right out and say that a previous doctor diagnosed you as having celiac. Period. No additional details should be needed. If he asks for test results to prove it, tell him you'll have to get back to him and then do nothing other than maybe look for a different doctor who is more willing to believe you.

My experience of trying to figure out my own diagnosis included dozens of doctors telling me my aches and pains were all in my head, so I have a pretty low regard for doctors in general. Those that understand celiac seem to be few and far between so you got lucky in finding one who knew enough to get your diagnosis and to be flexible when it came to pushing testing on you. You may not be so lucky in the future.

Fortunately, there isn't much your future doctor needs to do for you so even if they don't believe your diagnosis, you can still continue with your own "treatment" without their help. There are people who need the official test results in order to maintain the will power to stay gluten free, but I suspect the DH reactions will be enough to keep you honest. 

Anyway, best of luck to you as you deal with the ongoing hassles of people either not believing or not understanding your celiac. 

[ShellWhele]

Always Learning,

(great handle by the way),

Thank you, your advice is really helpful. It's been such a strange road to figuring out what was going on with me.  It's been a bit reaffirming to learn taht so many other people have had similar challenges.  I don't mean to say that is good, but somehow I feel better not being alone in this.  

Grateful for your help,

Shelley

 

 

22 hours ago, fllstuart77 said:

 

 😂 😂 😂

that must be the dumbest doctor alive

It was pretty whacky that's for sure.  

 

 

[ShellWhele]

On 9/13/2021 at 9:04 AM, Scott Adams said:

Although it would have been ideal to have at least gotten a blood test while you were still eating gluten (your first doctor should have done this), at this point given your DH and other symptoms I agree that there may be no benefit to doing a gluten challenge for a formal diagnosis. Your new doctor may want to call it non-celiac gluten sensitivity, but the “prescription” is the same—a gluten-free diet.

Thank you. I appreciate the help.