Follow Up Appointment On Tuesday

[Emily Elizabeth]

I have my 6 week follow up appointment since I was diagnosed next Tuesday the 26th and I am very nervous. The doctor told me that I would have to have another endoscopy if I was not doing better. Now I am definitely feeling better, but I am still having intestinal problems (loose stools at least 4 times a day) but it is better then it was before. I don't have the fogginess or extreme hunger and fatigue or the pregnant belly. I also have noticed that I get more sick when I am glutened (or suspect that I am) so that seems to tell me that I'm not ingesting it everyday (I wake up in the middle of the night and have to urgently go to the bathroom 2-3 times).

What advice do you all have? If they suggest an endoscopy should I do it? Also, they never tested me for vitamin deficiencies. Should I ask that they do that?

I assume that it is definite that I have celiac disease right (wishful thinking)? I guess they are just going to check to see if I may have something else in addition to it?

Here are my test results (not really sure what this means):

AGA IgG - 11.9 U/ml

AGA IgA - 5.9 U/ml

IgA ELISA (TTG IgA) - >100 U/ml

IgA IFA (EMA IgA) - Positive

Total IgA - 100 mg/dl

HLA DQ2 - Detected

HLA DQ8 - Not Detected

Biopsy - Inconclusive evidence of Celiac Disease (they did this first, then ran the blood test, they said that it was microscopic evidence)

Thanks for any help/advice you can give!

[wolfie]

Not sure about your test results, but I do believe that the EMA that is marked positive in your bloodwork is indicative of damage in your small intestine from gluten/Celiac. Also, it can take an adult up to 2 years to completely heal from the damage in the intestines. So 6 weeks is a very short period of time when you look at that. I know that for myself, I could tell a difference immediately, but am feeling so much better now (1.5 years into the diet).

Another way to look at it is that the damage didn't happen overnight and won't heal overnight either.

(((HUGS))) Hope you are feeling better soon!

[Emily Elizabeth]

Thanks so much! I will keep looking forward to my 2 year mark!!

(((HUGS))) Hope you are feeling better soon!

[aikiducky]

Also, it might make sense to do a follow up biopsy in the future to make sure that you have healed, but in my opinion (I'm not a doctor mind you) it would make more sense to do it after a year or two on the diet. If you do it after only six weeks, there's a chance that things haven't healed a lot yet, and then the doctor can draw the false conclusion that the diet isn't working, while in actuality it just needs more time.

If you really want to follow your progress on the diet, you could ask then to do the celiac panel again to see if the antibody levels have come down at all. Ttg levels are often used for follow ups.

It's encouraging that you have noticed a positive change in some symptoms! Keep up the good work!

Pauliina

[Emily Elizabeth]

Thanks for your advice! I am going to ask about doing the celiac panel instead of the biopsy if they recommend it. That would be much better! You have calmed my nerves.

If you really want to follow your progress on the diet, you could ask then to do the celiac panel again to see if the antibody levels have come down at all. Ttg levels are often used for follow ups.