Help me prepare for testing after going gluten free?

[Southeastmama]

I decided to go gluten-free after having gastrointestinal symptoms that have progressively gotten worse when I have eaten wheat. I did contact my general doctor about getting testing for celiac(after going to an allergist to confirm that I didn’t have a wheat allergy as I get skin rashes as well), but the appointment would be weeks away, and I was so miserable that I decided to just forget doing that and give up gluten first to see what happened. Well, not only did my gastro issues and rashes disappear, but my hip joint and back pain went away. This was so shocking to me. My hip joint pain was so bad that I have been unable to sleep on my right side for years! I also have flexibility and mobility in my hips that I haven’t had in decades. I feel so amazing that I am happily eating gluten free and very strict. My husband has been very supportive as he has seen the changes in my pain and mobility. However, I really do think I need to see about getting diagnosed. Mostly because I am getting alot of push back from family. But because I have been gluten-free for months now, I’m afraid that my test will be off. I know that I need to do some sort of gluten challenge, so could somebody tell me what I have to do to have a successful test that won’t be false? I really dread going back to such terrible morning pain and lack of mobility, but I think it may be worth it in the long run to have an official diagnosis. I have a couple of sisters with celiac and based on my results I have a feeling it’ll be positive, but I want to set myself up for a successful test! What should I do? 

[trents]

https://nationalceliac.org/blog/what-is-a-gluten-challenge/

 

I promise you, an official diagnosis will not have much effect in convincing skeptical relatives that you have a "real disease" that requires you to avoid wheat/gluten.

I think you already have the evidence you need by your dramatic improvement when you have eliminated gluten from your diet, as well as the immediate family history of siblings with celiac disease. Why torture yourself with a gluten challenge? And generally, when you have been off of gluten for a good period of time, you will react more strongly to it when going back on since you have lost any tolerance to it you may have had.

IMO, this is a time for you to be strong and not try to appease your skeptical relatives and friends. 

[Scott Adams]

I agree with @trents, even if you showed them a paper with the diagnosis, they may still not be very supportive, however, here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[knitty kitty]

Getting a genetic test for Celiac Disease genes may be another way to appease people with doubts. 

Having genes for Celiac Disease and improvement on a gluten free diet is an acceptable diagnosis method.  

You don't have to consume gluten in order to test for Celiac Disease genes. 

[Joycie]

A genetic test as Knitty kitty is a good idea. That was the 1st test I had done. It definitely shows whether it is in your genes. But, that has not encouraged my 3 other sisters to be tested. I have Celiac and one other sister does. Yes there are 5 sisters. 

The official diagnosis is immensely helpful!  I had the gene test and 2 endoscopies.  My side of the family has been incredibly supportive and helpful. My husband was likely the worst skeptic at first until he saw the benefits and also the sicknesses that occur when I've been glutened. My husbands side of the family was never supportive. So, even an official diagnosis of 2 endoscopies to prove Celiac fully did not encourage them to be supportive these 9 years. I have another friend who has dealt with that from her immediate family. It is truly a lonely disease at times. Some people are just extreme skeptics. I'm so sorry for the skeptics in your life.  It is a major benefit that your immediate family is supportive. That is a true bonus!!!

[Joycie]

43 minutes ago, Joycie said:

A genetic test as Knitty kitty is a good idea. That was the 1st test I had done. It definitely shows whether it is in your genes. But, that has not encouraged my 3 other sisters to be tested. I have Celiac and one other sister does. Yes there are 5 sisters. 

The official diagnosis is immensely helpful!  I had the gene test and 2 endoscopies.  My side of the family has been incredibly supportive and helpful. My husband was likely the worst skeptic at first until he saw the benefits and also the sicknesses that occur when I've been glutened. My husbands side of the family was never supportive. So, even an official diagnosis of 2 endoscopies to prove Celiac fully did not encourage them to be supportive these 9 years. I have another friend who has dealt with that from her immediate family. It is truly a lonely disease at times. Some people are just extreme skeptics. I'm so sorry for the skeptics in your life.  It is a major benefit that your immediate family is supportive. That is a true bonus!!!

Also, Southeast Mama, 

Getting a clear proven diagnosis may be best for your own resolve. Oftentimes those who are diagnosed through endoscopy take the diagnosis more serious than those who are not. But, the only way to get a legitimate diagnosis is to fully go back on gluten as the "gluten challenge' I believe it is. 

Every Celiac meets many skeptics sadly. Be thankful you have a very understanding husband.