Difficulty being diagnosed with celiac disease?

[Sambozzi]

I’ve had a bad relationship with gluten my entire life. I had terrible gastrointestinal issues as a child when not as much was known about celiac disease. After many tests and doctors scratching their heads, my mom finally took me to a natural doctor who suggested I stop eating wheat. My mom was perplexed when most of my symptoms went away fairly quickly when I was switched off wheat. But in high school I went back to pretty much eating what I wanted, but had no idea I was slowly getting sicker and sicker. 
 

Fast forward to college and I got cholera on a trip to Haiti and it completely destroyed my gut. Suddenly I was having reproductive issues, respiratory issues, gastrointestinal issues, thyroid issues. A doctor mentioned trying a gluten free diet and I was desperate to get better so I jumped right in. Well, most everything went right into remission, I lost 60 lbs, and I suddenly had a much better quality of life. However, I noticed that anytime I snuck anything with gluten my reaction would get worse and worse. 
 

Now to today, I now have a severe reaction to gluten (even from cross contamination) anytime I am exposed. My GP thinks I definitely have celiac disease, but because of how severe my reactions are, she doesn’t want to put me through eating gluten to be officially diagnosed because I would not be able to handle it. She basically said that the only solution is eating gluten free anyways, so just keep doing what I’m doing. 
 

My question is, how important is an official diagnosis? Should I put myself through the diagnosis process to know for sure that it is celiac disease when I know I’ll get severely ill? Is it okay to assume it is celiacs? Is there anything out there that is similar to celiacs that I should be tested for (that doesn’t involve eating gluten)? 

[trents]

Listening to your symptoms and your symptomatic experience with being off and on with gluten, I have no doubt that you have celiac disease. You may also find that other foods like oats and dairy cause similar symptoms as these two non-gluten foods not infrequently cause similar gut inflammation as gluten in the celiac population.

[knitty kitty]

Welcome to the forum,@Sambozzi,

Have you discussed taking a genetic test with your doctor?  Testing positive for some of the most common genes related to Celiac and improved health on a gluten free diet is frequently accepted as a diagnosis for Celiac.  

[Sambozzi]

  On 4/12/2021 at 5:36 AM, knitty kitty said:

Welcome to the forum,@Sambozzi,

Have you discussed taking a genetic test with your doctor?  Testing positive for some of the most common genes related to Celiac and improved health on a gluten free diet is frequently accepted as a diagnosis for Celiac.  

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I’ve never had the genetic testing done, and she never suggested it. Would it be better to go to a gastroenterologist? Rheumatologist? 

[Sambozzi]

  On 4/12/2021 at 4:45 AM, trents said:

Listening to your symptoms and your symptomatic experience with being off and on with gluten, I have no doubt that you have celiac disease. You may also find that other foods like oats and dairy cause similar symptoms as these two non-gluten foods not infrequently cause similar gut inflammation as gluten in the celiac population.

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You are right on the money with that. I also react to dairy and oats (even certified gluten-free oats). My worst reactions happen when I’ve been exposed to gluten and dairy at the same time. 

[trents]

  On 4/12/2021 at 3:17 PM, Sambozzi said:

I’ve never had the genetic testing done, and she never suggested it. Would it be better to go to a gastroenterologist? Rheumatologist? 

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I would try the gastro doc first.

[Scott Adams]

There are drawbacks to getting a diagnosis, for example higher life (and possibly health) private insurance costs, and policies can be harder to get.

In your case, given your severe symptoms I agree with your doctor--even if the test were negative for celiac disease you still have gluten sensitivity, something they can yet test for, and the outcome is the same, a gluten-free diet.

I also agree that if you're curious you could get a genetic test to see if you have the genetic makeup for celiac disease. This would be important for your direct family members who may also have the genes, and possibly celiac disease. Many celiacs have not symptoms, but research shows that the health risks are still the same.