Should I try to pursue a diagnosis all these years later?

[sandree33]

I have been gluten free since 2006 but I continue to have a lot of symptoms. It often does seem to be linked to eating out. Even though I try my best to find clean gluten free food, I seem to flare up very often after eating out and it lasts for days. This holiday season has been tough. I am also dairy and corn free and recently cutting out most sugar.

 

I did not test positive with the blood test all those years ago and was already gluten free. I couldn’t face eating gluten for the extended time that was required for a biopsy because I had so much intense abdominal pain when I was eating gluten and that had cleared up, so I just remained undaignosed.

 

I did have an Enterolabs test done. It says - fecal antigliadin Iga 21 (normal <10) - fecal anti tissue transglutaminase IgA 15 units  (normal <10) - fat <300 (normal <300) - fecal anti-casein cows milk IgA antibody 19 (normal <10) - HLA-DBQ1 allelle 1 0201 - HLA-DBW1 allelle 2 06xx - Serologic equivalent HLA-DQ 2,1 (Subtype 2,6)

 

So I guess my question is - is there a way now to determine if I am celiac? Would I once again have to resume eating gluten for a period of time? What about the capsule endoscopy - could that be helpful? In a way, I think if I was diagnosed, I could be more assertive in protecting myself at home and out. I am careful, but perhaps not careful enough.

 

Is there any other testing that might be helpful? I think I would feel better if a doctor was monitoring me in some way. As I age, I have autoimmune symptoms that concern me and I wonder if I have been celiac all along and should have had a doctor checking up on me. My general practitioners have not paid it much attention.

 

Thank you for taking the time to read this. Sandy

[knitty kitty]

@sandree33,

My heart goes out to you.  I would get too ill to complete a gluten challenge, so the doctor did a genetic test.  I have two genes for Celiac Disease.  With a positive DNA test and my reactions on and off gluten, the doctor made a diagnosis of Celiac Disease.  

You have had a DNA test.  See...

HLA-DBQ1 allelle 1 0201 - HLA-DBW1 allelle 2 06xx - Serologic equivalent HLA-DQ 2,1 (Subtype 2,6)

You have two genes for Celiac Disease.  

Just because a person has the genes for Celiac doesn't mean the genes are activated.  The genes need some sort of stressor to turn on.  The stressors can be an illness, pregnancy, emotional or physical trauma.  

But your reaction to gluten indicates that your Celiac genes are activated.  

You have your diagnosis.  Unfortunately, some doctors are not as knowledgeable about Celiac as we would wish.

Be sure to be screened for vitamin and mineral deficiencies as part of proper follow up care for Celiacs.  

Welcome to the forum! 

Keep us posted on your progress! 

[RMJ]

Some researchers are working on it, but currently there is no medically accepted way to test for celiac right now without eating gluten.

[sandree33]

5 hours ago, knitty kitty said:

@sandree33,

My heart goes out to you.  I would get too ill to complete a gluten challenge, so the doctor did a genetic test.  I have two genes for Celiac Disease.  With a positive DNA test and my reactions on and off gluten, the doctor made a diagnosis of Celiac Disease.  

You have had a DNA test.  See...

HLA-DBQ1 allelle 1 0201 - HLA-DBW1 allelle 2 06xx - Serologic equivalent HLA-DQ 2,1 (Subtype 2,6)

You have two genes for Celiac Disease.  

Just because a person has the genes for Celiac doesn't mean the genes are activated.  The genes need some sort of stressor to turn on.  The stressors can be an illness, pregnancy, emotional or physical trauma.  

But your reaction to gluten indicates that your Celiac genes are activated.  

You have your diagnosis.  Unfortunately, some doctors are not as knowledgeable about Celiac as we would wish.

Be sure to be screened for vitamin and mineral deficiencies as part of proper follow up care for Celiacs.  

Welcome to the forum! 

Keep us posted on your progress! 

This is so interesting that you were able to receive a diagnosis in this way. Perhaps I could pursue that also and look for some support.

 

Sandy

[knitty kitty]

@sandree33,

It's definitely worth talking about it with your doctor.  I'm hoping he will be knowledgeable about Celiac Disease.

Your doctor may offer an endoscopy without a gluten challenge prior to it.  Samples may be taken for confirmation testing.  That way they can check out if there's anything else going on like H. Pylori infection or gastritis.  It will also give a baseline to compare with future endoscopies to check for healing or ongoing problems.

I have found the Autoimmune Protocol Diet very helpful in healing.  It's been scientifically shown to promote intestinal healing.  It's basically meat and veggies with some fruit, and healthy fats.  

No nightshades (potatoes, tomatoes, peppers and eggplant).  No processed gluten free facsimile foods.  No dairy.  No grains.  No legumes.  It's like giving your digestive tract a holiday.  

The AIP diet recommends bone broth and fermented foods, but I chose not to include those because they are high histamine foods.  

In Celiac Disease, our bodies can produce so much histamine as part of the immune response that it has trouble clearing it, resulting in histamine intolerance and possibly Mast Cell Activation Syndrome.  Your doctor can test your histamine levels.  B12 and Vitamin C help clear histamine.  Remember to stay hydrated.

We'll be glad to help with further questions!

[sandree33]

Thank you so much. This is very helpful…

 

Sandy

[LaLeoLoca]

If it helos, I only put the pieces together, on my own, just under four weeks ago. I am still very sick, but doing a little better every few days. I refuse to gluten myself to get tested. Many others do as well. I have had it my whole life, but covid kicked it into high gear three years ago and I almost died. So I will not touch gluten on purpose.

Some scientists are working on a blood test that will expose the blood to gluten and check that way, just via blood, but it could be awhile. It sounds like eating out is causing you trouble, but at least you know that part. I didn’t know anything for almost 40 years. Once you know, you have the power of choice. But I choose not to hurt myself for an endoscopy that still seems unreliable for many (esp considering that may not be the exact spot celiac manifests for each person).