RMJ

Sometimes medical centers will change what lab they send samples to. My doctor used to use a lab with a cutoff of 19. Now they use a lab with a cutoff of 3. Unlike many blood tests, the celiac tests use units which vary from lab to lab.

I am also a silent celiac. I had to be very strict and careful about contamination to get my antibodies down to the normal range. I know what you mean about preferring to have a symptom! I think I might get nauseated when I am glutened but I am not sure. I had trouble with nausea before I was diagnosed and now it is rare. When it does happen it is usually after I have been somewhere where I did not have complete control over my food. My GI did not think it was a symptom of celiac however.

Your doctor is potentially keeping her ill and underweight with celiac disease so she doesn’t join the obesity epidemic?! Definitely need a new doctor. Is this pediatrician a gastroenterologist? If not, can you see a pediatric gastroenterologist? Are you in the USA? In most states you can order some blood tests online without a doctor - you could get the whole celiac panel. I just don’t understand why doctors are so hesitant to diagnose celiac disease.

Can you take her to a pediatric gastroenterologist or would you need a referral from this unhelpful doctor? Sounds like he is making up his own range (>100) for positive which is not appropriate.

You said you only buy things labeled gluten free. Perhaps you are sensitive to very low levels of gluten? I pretty much stick to things that are labeled as certified gluten free. Or you could eliminate processed foods entirely and try the Fasano diet.

Do you live in the United States? If so you may be able to order your own celiac blood panels online.

Don’t beat yourself up too much, Perhaps this is just what you needed to convince yourself to stay gluten free from now on!

In this paper they conclude that CD57 cells do not appear to have a role in celiac disease. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2222270/

I don’t know what a broccoli seed looks like, but alfalfa seeds are much smaller than wheat kernels. I would think you could wash the seeds thoroughly before sprouting, pick out anything that doesn’t look like an alfalfa seed, and you'd be ok.

Discouraging? You already have one normal value! That’s great! And the TTG is the antibody against yourself so a great one to be in the normal range. Keep up the good work.

The amount of gluten that causes visible (under a microscope) damage varies a lot from person to person. Researchers do studies where they take people with celiac who are on a gluten free diet, feed them known amounts of gluten, then do endoscopies and look for damage. Why knowingly cheat when you know you have celiac? I wouldn’t even want a Marsh 2 level of damage. And the antibodies can cause damage elsewhere in the body also. For me it is not worth the risk of poor health and possible severe complications, like cancer. Why 3 endoscopies in a year? Do you still have symptoms?

Hi, I also have crypts and tonsil stones but they don’t sound nearly as bad as yours. What have you tried for them? I have to gargle two or three times a day with Listerine or I get a sore throat. I also have to remove them occasionally.

You’re a good friend. I’d ask her what she prefers, and if she hesitates about having you cook for her, don't push it. I will eat at my brother’s, but they check ingredients with me and I look at anything packaged.

The immune system changes during pregnancy so perhaps that is why your reaction was different. Best to stay gluten free until you’ve had the baby.

You were feeling better on the gluten free diet then decided to cheat and now feel worse? Why not just stay on the gluten free diet?