Maybe celiac, maybe just ncgs?

[Neat1]

Hey there,

I had a blood test for celiac (was eating copious amounts of wheat) that came back negative, but I’m still having problems with digestion that are worse when eating wheat. While I have overlap with some symptoms similar to SIBO or dysbiosis there are some that still make me think it’s celiac. After ingesting gluten I have terrible neck and shoulder pain. This is repeatable; I thought I slept on it wrong so after pain abated I ate gluten again, bam, pain returned. Being not specifically digestive this is indicative of an autoimmune response, right? 
for what it’s worth I’ve been to a gastroenterologist but after testing for celiac and receiving a negative result they wrote me a prescription for Linzess and told me follow up with an APRN. No further testing of any kind.  
Thank you for reading my post and I look forward to any insights others are able to share from their experiences

[trents]

Welcome to the forum, @Neat1! Can you list the celiac blood antibody tests that were done? Another possibility is that you are IGA deficient which can create false negatives on IGA-based antibody tests. There is a blood test to check for that, commonly known as "total IGA" but many docs don't know to run it.

[Neat1]

Hey there! The test was Tissue Transglutaminase Ab, IgA and result was <1.

 

[trents]

Before you conclude you don't have celiac disease, you should request a more complete celiac blood antibody panel. You got the bare minimum blood test.

You should ask for:

Total IGA

tTG-IGA

DGP-IGA

DGP-IGG

TTG-IGG

You need to have been eating generous amounts of gluten for weeks beforehand but sounds like you are aware of that. Here is a primer that outlines the different kinds of blood antibody tests that can be run when checking for celiac disease:

 

[Neat1]

I don’t love the idea of eating a boatload of gluten 😂 but I also probably knew more testing was going to be required. I don’t see a new GI doc until December, but I might send my pcm a message and ask if they can order any/all of those. 

[trents]

10g of gluten or the amount in about 4-6 slices of bread daily for several weeks should be a sufficient "gluten challenge". Your primary care provider should be able to order those tests.

Edited October 8, 2024 by trents

[trents]

As far as your neck and shoulder pain goes, yes, this could be a symptom of celiac disease as one of the more than 200 symptoms associated with celiac disease is joint pain.

[knitty kitty]

Hello, @Neat1,

Yes, neck and shoulder pain can be symptoms of Gerd, which is fairly common in Celiac Disease.

Ask for a DNA test, too.  Celiac Disease is genetic.  If you've got celiac disease genes, further testing is warranted.  Some people have Celiac genes, but don't have active Celiac Disease.  If you've got symptoms, your genes are probably activated.  

Diabetes, anemia and Thiamine deficiency can cause false negatives on antibody tests.  Some people with Celiac Disease are seronegative.  

Thiamine deficiency can cause constipation and gastrointestinal symptoms.  Magnesium supplementation can help with that, too.  Nutritional deficiencies like these are common in untreated Celiac Disease.

Keep us posted on your progress!

[Scott Adams]

I also had issues with severe neck and shoulder pain for years, so this may be a symptom of celiac disease.  In case you end up screening negative for celiac disease, approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

 

[Neat1]

On 10/7/2024 at 4:18 PM, trents said:

Welcome to the forum, @Neat1! Can you list the celiac blood antibody tests that were done? Another possibility is that you are IGA deficient which can create false negatives on IGA-based antibody tests. There is a blood test to check for that, commonly known as "total IGA" but many docs don't know to run it.

That’s a really interesting idea about IgA deficiency. I’ve had chronic sinus infections for more than 10 years as well. I’ll bring it up next time with my PCM. 
 

in the meantime I’m going to supplement B1 and see if there’s any change. I’m also doing l. reuteri plus a regular multistrain probiotic which seems to be helpful. Do digestive enzymes help at all, or it’s a ymmv situation? 
 

 

 

[trents]

Digestive enzymes won't help with gluten disorders per se but can often help with pancreatic enzyme deficiency related digestive problems.

I'm not sure that having an IGA deficiency necessarily predisposes one to decreases in infection fighting ability but that's a good question to ask your physician. 

[knitty kitty]

@Neat1,

I so glad you're going to try Thiamine!   Do let us know how it goes.  

Benfotiamine is the form of Thiamine that may be very helpful to you.  Benfotiamine has been shown to promote healing in the intestines.  Be sure to take a B Complex because all eight B's work together.  Try to get a minimum of 300 mg a day of Benfotiamine.  Higher doses are needed to correct low thiamine.  Add a magnesium supplement.  Ask your doctor to check your Vitamin D level, which is frequently low in celiac disease.  

Diamine Oxidase (DAO) supplements are digestive enzymes that may help until you start making sufficient amounts yourself with supplemented B vitamins.

Chronic sinus infections are common in Celiac Disease.