Hey Fenrir...I think it's awesome that you went in and showed them how to do that! How cool!
You'd be surprised how many places are open to letting you show them the best way. Sometimes if you do the research and are willing to show them, the managers can be pretty receptive.
My experience is that most of these places are willing to do things the right way, particularly if you make it easy for them by telling them how to do it.
I have found that the best approach is to have them set up a gluten-free tray. That way all the employee has to do is pull out the tray, go over to the designated gluten-free work station and as long as they change gloves and use the utensils and ingridients on the tray it should be safe for celiacs. So basically they have this 2ftx2ft tray dedicated to gluten-free pizzas. The ingriedents are taken directly from the bag/container when first opened and put into containers on the gluten-free tray. Only the gluten-free meats are only the tray and I made them up a little list to keep that register so they can tell people which ingredients they can have on a celiac safe gluten-free pizza. More or less it is bacon, and pepperoni and most of the fruits/veggies.
This also happens to be the way Erberts & Gerbert's makes their subs.
I think it is good to keep a journal so you can pin point possible problems. However, I will also point out that it is not uncommon to continue to have symptoms or even new symptoms early on in recovery. I was having worse/new symptoms two months after going gluten-free. Even after going through the diet with a comb to find anything with gluten in it I came up empty. However, without any change in diet (other than removing gluten of course) the symptoms resolved over the next couple of months. Not sure if it was gluten withdrawl or simple that it takes a while for the immune response to stop.
Thanks for your response. This was my sense too, yet his doc was not concerned and only provided results when my husband asked for a copy.
My husband ate some gluten for around 8 weeks prior to the test, not in great quantities, but probably equivalent to a couple slices of bread a day. He had been gluten light for about 10 months prior and had experienced improvements in stool issues as well as irritability.
Given that he was cutting back on gluten for a long time before the test then only eating lightly glutened for only 8 weeks I would certainly push for the EGD given the positive test. He will need to continue eating gluten until he has the EGD.
My tTG test was very weak positive, but my my EGD was 2nd highest grade (bad) as you can get.
Normally, Mild blunting (or atrophy) is conisdered marsh 3a which is positive for celiac disease but the part that confuses me is the report does not mention the condition of the crypts or if there is increased lymphocytes or not. In the presence with increased lymphocytes and larger crypts, mild blunting generally would be considered positive for celiac disease.
I have been workign with pathologist here at work for about 12 years now and every report on EGD biopsies on a patient with possible celiac disease are noted with the condition of crypts, lymphocytes and villi.
I would ask for clarification on how the crypts and lymphocytes looked and you may have to go through your primary to get that the way it sounds. I think there is a strong chance your GI and his pathologist are botching your DX.
It might be best at this point that you talk with your primary, express your concerns and ask them to check into it. The chances that your primary physician can get the GI doc's to give you the full report is probably better than if you asked yourself. I can't imagine a pathologist worth his salt that wouldn't comment on lymphocytes and crypts, particularly when they seen blunting to begin with.
I have heard mixed information regarding whether or not they can see damage too. Some say yes, some say no.
My doctor did tell me that he could see the damage as soon as I awoke from sedation after my endoscopy and sent me out the door that day with a celiac diagnosis. I didn't want to believe that I had celiac and asked him how he could tell that I had it visually just from my endoscopy. He showed me a picture of the inside of my small intestine that he had taken and said that the tissue should be smooth and then showed me that mine had a cobbled texture like a brick road. Again not wanting to believe him, I asked how sure he could be from just the visual images and he said 99.9%. My biopsies did come back positive as well.
So, based on my experience, it could be possible that he saw a damaged area and took the one biopsy from there, but it would have been nice if he had taken the recommended 6 for sure.
According to my GI, sometimes people with Celiac will have nodules. These are not the big nobs that the word brings to mind but more like a bumpy surface on the intestine. They are just big enough that they can sometimes be seen, but not often. He said most people who have celiac disease will have nothing unusual looking when they take the biopsies.
Well, I went out and ate at Chipotle. Had a great experience. I just told the employee that I can't eat gluten or I'll get sick and he took his gloves off, washed hands, regloved with new gloves, then put a fresh paper in the bottom of a basket as to not contamitate it with the stuff they just slide down the bar.
He was training in a new employee in and he explained to her that when someone says they can't have gluten that they need to "be careful to not cross contaminate and we need to really take care of these folks so they don't get sick.".
I plan to call in and tell the manager I appreciate how his employees are doing a great job looking out for Celiacs.
I was just lucky to have good Drs. who listened really well to what I was telling them, knew very well about Celiac and how to DX it.
Anyone in the Twin Cities are of MN that is having possible Celiac issues would get my recommendation of going to Minnesota Gastreoenterology Group, they have several GI specialists and locations in the Twin Cities Metro. I would recommend specifically Dr. Kandiel and Dr. Henninghake, but they have several specialists who I'm sure are very capable. They also have a PA that specializes in caring for Celiac patients.