Unique test results--need your thoughts

[lyndze]

I was recently diagnosed after suffering for 9 years. I have been told in that time by two separate doctors (two separate blood tests, 3 years apart '15, '18) that I might have celiac but both biopsies were negative. My doctor told me that meant I didn't have celiac and diagnosed me with IBS. In 2015 I did try a gluten-free diet for 2 months but saw zero improvements. Thinking back on it now, I had almost zero control over how safe my food was because I relied almost entirely on other people to feed me (LDS mission). 

In January, I had another biopsy done as a standard routine during an endoscopy I had because I have been suffering from uncontrollable GERD for the last year. This time the biopsy was positive. My doctor wanted to track my IgA over time so he ordered another blood test before I began a gluten-free diet. We both expected it to be positive but instead, it was a 12 (>15 is considered positive)! My doctor suggested I still stick with the Celiac diagnosis. 

I've been gluten-free for two weeks now and so far I have not noticed much of a difference except I have definitely had less diarrhea. I know it is probably still too early to tell if any of my other symptoms will improve, but I'm really hoping I finally have my answer. 

So, my questions for you:

1. Would you accept the Celiac diagnosis? After having so many false diagnoses in the past, I'm reluctant to accept this one.

2. I read on the interwebs about IgA deficiency. Could this possibly be the case for me? If so, would you recommend getting further celiac blood tests? And would that mean I need to go back on a gluten diet?

3. Are there any other diseases that could cause intestinal villi damage w/ leukocytes besides Celiac?

TIL!

[trents]

Welcome to the forum, lyndze!

Can you be more specific about what antibody tests have been done? There are a number of them that can be run to detect celiac disease but it is common for primary care physicians who are not well-informed about celiac disease to just order the tTG-IGA. There are also insurance protocols they have to take into account. Here is a primer on antibody testing for celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Yes, low total IGA levels can skew other IGA tests downward and create false negatives. Total IGA should always be included in the test battery IMO.

Ideally, you should go back to eating regular amounts of gluten if you want more antibody tests run, two slices of wheat bread daily (or the gluten equivalent) for 6-8 weeks leading up to the blood draw. These are the recommendations of the Mayo Clinic.

We do sometimes get reports on this forum of people with a positive biopsy for celiac disease but negative antibody testing, and vice versa. Also, there are some non gluten-related diseases that can blunt villi, some foods (the dairy protein, casein) and some medications.

Sometimes people's immune systems respond atypically. This is why a full celiac panel should be run and not just rely on the tTG-IGA.

[knitty kitty]

@lyndze,

Celiac Disease destroys the lining of the small intestine preventing the absorption of essential vitamins and minerals. 

You should be checked for vitamin and mineral deficiencies as part of proper follow up care for Celiac people.

Anemia and Diabetes (both types) can affect blood tests for Celiac Disease, resulting in false negatives.  

I had false negatives on my blood tests, but I had both Diabetes and anemia.  I had a DNA test which showed I have two genes for Celiac Disease.  Since Celiac Disease is inherited, you will have to have at least one gene.  Some DNA testing only looks for the presence of one or two of the most common genes for Celiac.  There are other rarer genes out there.  

 

[Scott Adams]

If I had two separate positive tTG blood tests two years apart, and saw a decrease in diarrhea after going gluten-free, I would consider myself as having celiac disease and/or the more common non-celiac gluten sensitivity (there are currently not tests for this yet, but ~10x more people have it than CD).

[Wheatwacked]

On 4/7/2023 at 10:28 PM, lyndze said:

I've been gluten-free for two weeks now and so far I have not noticed much of a difference except I have definitely had less diarrhea.

You have a diagnosis of Celiac Disease by biopsy, the gold standard of diagnosis. Accept it.  Damage villi due to Celiac Disease causes malabsorption.

Two weeks is not enough time to heal the years of damage done by malnutrition. That can take months to years. In the meantime you have immediate relief of otherwise unexplained diarrhea. Diarrhea itself causes additional electrolyte imbalances, especially potasium loss.  And low potassium is already an international concern.

Nutritional consequences of chronic diarrhoea "Malabsorption can result in both nutritional deficits and diarrhoea. With severe malnutrition, chronic diarrhoea can persist due to impaired immune function and poor mucosal recovery. Food intolerance and an inappropriate diet in the setting of malabsorption may also contribute to chronic diarrhoea. Patients may attribute their gastrointestinal symptoms to specific dietary intake, which can lead to self-imposed indiscriminate dietary restrictions. Therefore, disease-specific treatment in conjunction with appropriate nutritional counselling and intervention is recommended in the prevention and treatment of malnutrition in patients with chronic diarrhoea. "