I found out I have celiac a year ago, and because of genetics we had both kids tested. The GI ran TTG only as a screening, my youngest came back normal but my 8 yo had elevated TTG at about 80- strong positive. He advised a biopsy, which took me some time to decide on because I had sort of made up my mind that if either were positive on labs, we'd just make them gluten free, since I have celiac. But when that shock came to be, we ended up doing the biopsy. Totally normal, healthy biopsy, with plenty of samples taken with a good pediatric GI at the chidren's hospital. This guy told me NO celiac, to feed her normally and retest in 6 months. But we just felt so uncomfortable with this, we got another opinion and our current pediatric GI ran some extra tests- she ended up coming back very low on vitamin D and also EMA positive- so, that gave us our reassurance that she does in fact have celiac. Being as thorough as possible, he also had the biopsy samples re-ran through their hospital, and there was nothing missed. He drew me a picture on a piece of paper and showed the intestines, and an exampke of 6 samples taken, how much space was still there to have damage- so he assured me the damage was in there, likely missed or patchy.
Been 6 months gluten free, her TTG normal, now EMA negative, and vitamin D nearly tripled.
If a family member of someone has high TTG but normal biopsy I would be sure other things are tested to get better answers, but no, I would not chalk it up to something else given the celiac genetics.
Posted by Mom-of-Two
on 18 February 2013 - 08:00 AM
I have had Chipotle probably 50 times since being gluten-free, so maybe I'm an expert it is all about the people handling your food- you have to be assertive in asking them to be safe, when you order- my husband usually gets the order since it's usually eaten at home, he makes them wash hands, change gloves, they also get new spoons, and fresh cheese from the back (I don't get lettuce in mine), certain people there are better than others, and even wipe down their work space without being asked.
We have found the most important thing is to see that the same person completes your order, sometimes 5 people are on that line- rather than make 5 people go through the same process, one employee goes down the line with my order.
Never had a reaction, not once. My 8 year old has been gluten-free for 6 months and loves her Chipotle, no reaction from her either.
We have eaten at other locations maybe 2-3 times, we just ask for the same care wherever we are.
In our experience, these people are not trained--- some employees are awesome and know exactly what to do, others look at me and ask what gluten is, as they prepare to give me a flour tortilla. They are clearly not taught anything about this in the restaurant, so we teach them, easiest way!!
YES!! Go back to basics--- veggies, fruits, eggs, lean meats, rice. My changes have not been dramatic- they have been subtle things, that I notice like last night my hubby commented that I have not had many headaches lately- and it was then that I realized he was right, I don't think I have taken any pain reliever in at least a weeks time. I also found myself out walking with my 4yo on his bike the other day, when we had a bizarre 70 degree day in OH. I had actual energy and motivation to do so.
I am not trying to replace my foods, we simply took the approach that real foods are best- been doing the basics, and no boxed gluten-free foods or snacks yet. Nuts and fruit to snack on. I am not a milk drinker, but do drink almond milk for the calcium, and cheese does not bother my stomach. I have no known issues with dairy now, but had major lactose issues when younger so I just never learned to enjoy regular cows milk straight up as a beverage. I think the milk itself in that way upsets many, so if you drink it, maybe stay clear of that for awhile.
Are you taking probiotics?? If not, get yourself on plenty of those, to help repair the gut.
For ME, I have never had the gluten-free flours that are in many baked goods and packaged gluten-free foods. I had a gluten-free tortilla about a week ago, for a wrap at lunch time, and I felt "off" all that evening. I want to ease into those foods.
Are you careful with cross contamination? Have you ate out at all?
Posted by Mom-of-Two
on 14 February 2012 - 06:06 AM
So sorry you are not getting the support and answers you need
While I have only been at the quest for answers myself for 2 years, I found it very confusing and frustrating to have drs tell me it was one thing and not persist with more testing, etc. I went back this last round and basically told my dr, I KNOW something is wrong, I want to figure out what it is- she then did an ultrasound, and several different blood tests, one of which was the celiac panel, and I came back very hugely positive. I do NOT have ANY diarreaha---- or constipation for that matter. I have been seeing a very reputable GI dr who specializes in celiac, and she absolutely said that it differs for everyone, some people have no GI symptoms at ALL and have positive blood or biopsy results. In her vast experience with celiac, she said most of her patients have IBS like symptoms of pain and bloating, off and on for years before a celiac diagnosis.
Trust your mommy instinct, and be persistent. My pediatrician says not to test my two kids, but I feel I need to, so I am going to see a pediatric GI dr on my own-- however, insurance varies and I do underhand there are rules and steps to follow in many cases. Just follow your gut, and be strong about this, only YOU know your child. It can take a long time to find the right dr, for sure. I did my research before finding this GI celiac doc, however I am lucky to live by the Cleveland Clinic and have a lot to choose from when it comes to specialists!
Have you actually tried a gluten free diet on her yet?? That could also give you your answer.