The waiting game?

[NNThomas]

I have been waiting for my Celiac blood panel results. I eventually ended up at the gastroenterologists after my pain could not be connected to any gyno issues. So, I already have had a biopsy that points to Celiac Disease ( intraepithelial lymphocytes and villous flattening).  I understand that the doctor wants to be sure of the diagnosis. At first, I was almost certain that that this could be the reason that I have had increasing regularity of stomach pain ( the worst stomach pain was 20 years ago after the birth of my son), nightly heartburn, and a diagnosis of ideopathic hypersomnia and on some of my records- narcolepsy is named instead.

However, after reading many other accounts, I am not too sure. Even though I feel better when I avoid gluten( which I often tended to based on the recommendation of my functional doctor) my blood work does not show deficiencies in typical highly affected areas such as vitamin D and Iron. I do take supplements but not consistently and perhaps that has affected my numbers? Prior to seeing the gastroenterologists, the functional doctor recommended I avoid gluten because of  abnormal blood work showing up in elevated CRP, Epstein Bar, and every once in awhile slight hyperthyroidism even though I am overweight.

Has anyone had a backwards diagnosis? What I mean by that is biopsy and then confirmation with blood work?

[trents]

Welcome to  the forum, NNThomas!

Yes, we have had a number of forum participants take that "backward" diagnostic path of have the biopsy first and then the blood work to check for celiac antibodies. Though, I would have to say that the biopsy is still considered the gold standard of celiac disease diagnosis. There are only a handful of other things that can cause villous atrophy so the chances of you having celiac disease are pretty high. One of the other medical problems that can cause villous flattening sometimes is Crohn's disease. I mention that because you report abdominal pain and your CRP is high, pointing to some kind of inflammation going on.

 

[NNThomas]

Thank you for your reply. It is interesting that you brought up Chron's because earlier bloodwork by the gastroenterologist showed ASCA at 34.2  which points to Chron's, but the doctor said there was no indication of it with the endoscopy/colonoscopy. That furthered my confusion as well.

[Scott Adams]

Were you eating ~2 slices worth of gluten daily for 6-8 weeks before your blood tests? If not, you could have lower numbers, or end up with false-negative results.

[trents]

Yes, you need to be consuming a regular amount of gluten until all testing for celiac disease is complete.

[NNThomas]

16 minutes ago, Scott Adams said:

Were you eating ~2 slices worth of gluten daily for 6-8 weeks before your blood tests? If not, you could have lower numbers, or end up with false-negative results.

I went on a good length cruise during that time and boy did I eat. Surprisingly, I wasn't extremely sick or tired until I got home. I think I could have done a little better right before the test, but I purposely ate crackers each day leading up to it. I read the 2 slices of bread recommendation on a site just a few days  before testing, so I ate a bagel and it knocked me out.  I didn't realize how much I had actually taken gluten out my normal diet and I had to make greater efforts to eat it. I also had the HLA testing done and I am awaiting those results as well.

[NNThomas]

29 minutes ago, trents said:

Yes, you need to be consuming a regular amount of gluten until all testing for celiac disease is complete.

I think I did okay, but I could have done a little more. Though as soon as I had my bloodwork, I was through though with it. 🤐

[trents]

If you will be going in for celiac antibody bloodwork you should be consuming the equivalent of 2 slices of wheat bread daily for 6-8 weeks leading up to the day of the blood draw. This is the recommendation of the Mayo Clinic. If you have discontinued gluten already you should consider rescheduling your blood draw to give you opportunity for the full pretest gluten challenge. Once you stop consuming gluten, if you are a celiac, the inflammation in the small bowel begins to subside and antibody levels start to go down. You don't want to find yourself in the situation where you produce false negatives because you have started eating gluten free. Then you will be in no man's land as far as am I a celiac or not?