I'm not yet convinced

[NatalieCO]

Hello everyone. Looking for some opinions! I'm 43f, overweight by 70lb, have had loose stools for many years now and many other symptoms that fit with Celiac, as well as other conditions, inc bloating, fatigue, lethargy at times, etc. Hashimoto's confirmed as teenager. 

I went to new GI in June to establish care to get routine colonoscopy due to family hx of colon cancer. The NP tested me for Celiac (surprised as none of my family have but somewhat limited info as my mom's parents died in their 40s and 60s and mostly estranged from dad's)

tTGa was weak positive at 8.03 (normal 0-5)

tTGg neg <0.82 (0-4.99)

IgA normal 189 (70-400)

Endoscopy showed mild lymphocytosis. No blunting or atrophy. Neg H pylori. Rare NSAID use. Report said unknown significance but possible treated or latent Celiac sprue or other cause. I have been eating a lot more carbs so tests would be accurate.

Stool culture negative.

GI said I likely have Celiac but I wanted more proof. Saw NP the other day who said since my tTGa was pos and lymphocytes present, then those 2 criteria say I have Celiac. She ordered more bloodwork per my request as I'm still not convinced:

TTGA normal 4.62 (0-4.99)

DGP IgA normal <0.72 (0-4.99)

DGP IgG normal 1.06 (0-4.99)

EMA and genetic tests are pending.

I'll do what I need to be healthy, but I'd like to know for sure before changing so much of my life and possibly seeing insurance rate increases with Celiac on my medical record... We have 4 young kids (2-12) so life is already quite busy!

I welcome any thoughts!

[trents]

Welcome to the forum, @NatalieCO!

So, you have conflicting results from two different tTG-IGA tests, one at 8.03 and the other at 4.62, i.e. one a weal positive and the other a negative.

When they did the endoscopy, did they also biopsy the small bowel lining to have it checked microscopically by a lab for signs of the damage that would be caused by celiac disease's inflammation? 

You say you were eating lots of carbs at the time testing was done. Did that include plenty of wheat products?

If not celiac, you could have NCGS (Non Celiac Gluten Sensitivity). NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both.

[NatalieCO]

Thanks so much for the response!

Yes the endoscopy had multiple samples taken of the duodenum which showed 'mild duodenal intraepithelial lymphocytosis with preservation of the villous structure.' The NP told me this shows damage consistent with Celiac but the histology report says there could be other causes inc H. pylori, Nsaid use, infection (all ruled out) and autoimmune disease (I have Hashimoto's). That's why I'm not yet convinced it is Celiac

And yes by lots of carbs, I do mean lots of gluten containing products

[trents]

Celiac disease is an autoimmune disorder. Hashimotos would not affect the villous lining of the small bowel. So, all things considered, it makes me wonder if you are on the cusp of celiac disease. 

I think you are at the point where you need to trial a gluten free diet for a few months and see if some of your symptoms improve. You have had both the blood testing and the endoscopy done so there is no concern about invalidating testing by trialing the gluten free diet.

[Scott Adams]

I don't believe in the "weak positive" classification--it is a positive test, and your immune system is likely reacting to gluten in an abnormal way. 

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. 

 

 

[Wheatwacked]

Just to point out Hashimoto is also an autoimmune disease like Celiac so you most likely have very low 25(OH)D vitamin D blood plasma.  Low vitamin D plasma is is a compromised immune system and leaves you open to more autoimmune diseases in the future not to mention osteoporosis.

Personally, although the experts deny that osteoporosis is autoimmune, it makes sense to me that it is the first one to be affected by low vitamin D, then comes Hashimoto, Celiac and the rest.  Vitamin D at 80 ng/ml keeps the immune system from out of control B and T cells.

This article may clarify your test results and your resistance.

Are You Confused About Your Celiac Disease Lab Results?

 

[NatalieCO]

Thank you all for the helpful comments and articles! I am highly considering going gluten free just to see if I would feel better overall, whether or not I get an official diagnosis of Celiac.

And EMA just came back negative!

Genetic test results hopefully within the next week. 

[trents]

I assume you know that having one or more of the "celiac genes" does not equate to having celiac disease. Almost 40% of the population has one or more of the genes but only about 1% will develop active celiac disease. It's more of a rule out diagnostic measure in the sense that if you don't have one or more of the genes associated with celiac disease it is very unlikely you can develop celiac disease.

[NatalieCO]

Yes, I am aware having the 1 or more of the Celiac genes does not mean I would necessarily get the disease but I do appreciate the reminder.

My hope was just to rule Celiac out if I do not have the gene(s) and show the initial positive ttga was likely due to something else.

[trents]

Don't forget about NCGS.

[NatalieCO]

So, DQ2.5 was detected (DQ2 heterozygous)

[trents]

DQ2 has the strongest single gene association with the development of active celiac disease. DQ8 is next. Having both is even stronger and having homozygous celaic genes is also stronger.