Celiac Testing - Is it worth it for me?

[MichelleGrant]

Hi everyone, I'm a new user here. I have a question about testing and if its worth it for me.

I had an endoscopy and colonoscopy 9 years ago, which came back clear. I can't remember eating gluten pre the tests.

Recently my doctor ordered a celiac antibody blood test, which came back negative.

I've had 20 plus years of stomach aches and pains - directly related to gluten. They were crippling in my 20s, until I figured out what I can and can't handle. Eg. I can eat sourdough ok. But white bakery goods, cakes, wheat crackers - ruin me. Beer is my krytopnite. I get terrible stomach pains and diarrhoea and constipation.

Last week I drank half a beer and within 15 minutes I was hunched over in what felt like the worst pain of my life. I had terrible pain and gas all night. Constipation. The next day diarrhoea. I felt foggy and had a very low mood for the week. (I am usually quite happy).

I've struggled with my iron since I was a teenager. I had an infusion in December. My iron levels are slowly declining again, despite an iron rich diet. I have had mouth ulcers my whole life and brittle nails, muscle aches and tiredness. I think the biggest issue though is my stomach problems - which are probably related to the tiredness and body aches. I am now 42. I do a lot to keep good health - exercise 4 times a week, high step count, healthy diet full of vegetables, fruits, lean meats and nuts etc.

I was wondering - is it worth getting another endoscopy/ colonoscopy almost 10 years later (and making sure I eat gluten 6 daily six weeks beforehand)?

[trents]

Welcome to the forum, Michelle!

Do you know which test or test the doctor ran recently? Do you have access to the results and can you post them along with reference ranges? Unfortunately, many doctors will run only the tTG-IGA test instead of a fuller celiac panel consisting of other antibody tests. Had you been eating good amounts of gluten regularly in the weeks leading up to the testing? The Mayo Clinic recommends 2 slices of wheat bread (or the equivalent) daily for 6-8 weeks pretest for the serum antibody tests and the same amount of gluten exposure daily for at least two weeks before the endoscpy/biopsy.

It is also quite possible you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not throw antibodies or damage the villi so it cannot be tested for. Celiac disease must first be ruled out. The antidote is the same: total elimination from the diet of gluten for life. It is 10-12x more common than celiac disease.

Personally, if you know that you feel better when eliminating gluten then then I'm not sure it's worth the pain and hassle to prove or disprove you have celiac disease when it will not make any difference in what you need to do to feel better. This may be helfpul: 

 

[MichelleGrant]

Hi Trent, thanks for your reply.

My Dr ran the tTG-IGA test. I had been eating gluten prior to the test. This test was negative. As well as the endoscopy/ colonoscopy I had years ago. I think the chances that its celiac disease is very low.

I suspect a visit to the gastroenterologist might be useful, in case something else is going on.

I think you're right about NCGS and think this might be what I have. I feel incredibly foggy and tired after eating gluten again last night. But with the negative testing to date, I don't think I have celiac disease.

Thanks for the feedback/ reply. Its always helpful to talk things through.

[ravenwoodglass]

When your doctor did the endo did he say he was checking for celiac? If not then likely no biopsies were done. It is still quite possible you have celiac despite the negative blood test. My showing up negative on that blood test delayed my diagnosis by many painfilled years and left me with some permanent disability. You have a choice as trents said. You can go back on gluten for 6 weeks and retest or you can go by what your body is already telling you and stay strictly gluten free.

[Scott Adams]

14 hours ago, MichelleGrant said:

I had an endoscopy and colonoscopy 9 years ago, which came back clear. I can't remember eating gluten pre the tests.

Recently my doctor ordered a celiac antibody blood test, which came back negative.

I've had 20 plus years of stomach aches and pains - directly related to gluten. They were crippling in my 20s, until I figured out what I can and can't handle.

Since you had an endoscopy so long ago it sounds like you're aware already that you have an issue with gluten, and it's not fully clear exactly how much gluten you've been consuming over the past 20+ years. It sounds like you eat some gluten, but not much, and may not have been eating it daily before the tests you took back then, and the test you took recently. 

Given your known reactions to gluten it's up to you if you want to endure a 6-8 week gluten challenge. What would happen if your results end up negative, would you start eating gluten daily? It doesn't sounds like you would to me. I guess what I'm trying to say is that you already know gluten causes you symptoms, so at the very least we know you are in the NCGS area and should likely avoid it, but there are no tests yet for NCGS. Since you're likely to avoid gluten no matter the results, perhaps just go 100% gluten-free and see how things go for you? It also sounds like you've not tried a 100% gluten-free diet before, but have been mostly avoiding gluten.

[MichelleGrant]

On 6/20/2022 at 12:58 PM, trents said:

Welcome to the forum, Michelle!

Do you know which test or test the doctor ran recently? Do you have access to the results and can you post them along with reference ranges? Unfortunately, many doctors will run only the tTG-IGA test instead of a fuller celiac panel consisting of other antibody tests. Had you been eating good amounts of gluten regularly in the weeks leading up to the testing? The Mayo Clinic recommends 2 slices of wheat bread (or the equivalent) daily for 6-8 weeks pretest for the serum antibody tests and the same amount of gluten exposure daily for at least two weeks before the endoscpy/biopsy.

It is also quite possible you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not throw antibodies or damage the villi so it cannot be tested for. Celiac disease must first be ruled out. The antidote is the same: total elimination from the diet of gluten for life. It is 10-12x more common than celiac disease.

Personally, if you know that you feel better when eliminating gluten then then I'm not sure it's worth the pain and hassle to prove or disprove you have celiac disease when it will not make any difference in what you need to do to feel better. This may be helfpul: 

 

I checked and the test ran is: "Coeliac Serology" - Deamidated Gliadin IgA/ Deamidated Gliadin IgG/ Tissue Transglutaminase IgA/ Tissue Transglutaminase IgG (Performed on bioplex 2200).

I've been eating a bit of gluten each day I think. I can't handle any for breakfast. I can handle it later in the day sometimes, depending on the type of gluten. Its finicky for me. Sometimes I get bad reactions, sometimes just lethargy. Sometimes nothing. I have learnt what I can't handle, but sometimes it still surprises me and I get a gluten attack which ruins me for a week or more. I'm still recovering from the beer I had over a week ago. My stomach still isn't right.

[trents]

4 minutes ago, MichelleGrant said:

I checked and the test ran is: "Coeliac Serology" - Deamidated Gliadin IgA/ Deamidated Gliadin IgG/ Tissue Transglutaminase IgA/ Tissue Transglutaminase IgG (Performed on bioplex 2200).

I've been eating a bit of gluten each day I think. I can't handle any for breakfast. I can handle it later in the day sometimes, depending on the type of gluten. Its finicky for me. Sometimes I get bad reactions, sometimes just lethargy. Sometimes nothing. I have learnt what I can't handle, but sometimes it still surprises me and I get a gluten attack which ruins me for a week or more. I'm still recovering from the beer I had over a week ago. My stomach still isn't right.

Do you intend to keep punishing your body by this experimentation? Whether you have celiac disease or NCGS you are risking harm by not committing to a totally gluten free lifestyle.

[MichelleGrant]

5 minutes ago, trents said:

Do you intend to keep punishing your body by this experimentation? Whether you have celiac disease or NCGS you are risking harm by not committing to a totally gluten free lifestyle.

I needed to hear this. I've been in denial for years/ too hard basket. Thanks for the directness!

[trents]

12 minutes ago, MichelleGrant said:

I needed to hear this. I've been in denial for years/ too hard basket. Thanks for the directness!

It is hard! Especially at first. It takes a while to learn the ropes of living truly gluten free. You will make mistakes. But learn from them. Took my wife and I about two years to get a firm grasp on how and where gluten is hidden in the food supply and through cross contamination, especially when you eat out. But now, it's like we have this sixth sense, an antenna that goes up as it were when we encounter situations and foods that present risk. But it will become the new normal. The hardest part is navigating the social challenges. Make up your mind that there will be people in your life who will not accept the fact that your gluten intolerance is not just in your head. But don't cast those people out of our life. Be forbearing in the face of their ignorance. Love them for the other parts of their personalities that are good. Some of your social connections will change but others will remain. There are strategies that can be deployed to minimize the impact of this on your social life but it will have some impact. But the fact remains that whatever the fallout, you need to take care of yourself.

Edited June 21, 2022 by trents

[Awol cast iron stomach]

Not sure if this will be helpful. I am labeled NCGS. I was to complete a 2 week gluten challenge for both scopes. I failed. I made it 6 days of my 2 weeks.I also competed Ig E testing before, and food challenge/elimination diet after scopes. I developed additional intolerances during that time period. It took me 2 years and 4 months to feel normal again with the help of a supportive/dedicated/well educated  on Celia/ NCGS chiropractor/acupuncturist. The others gave some sincere advice to consider. 

All the best