Aly1

So I heard back from our pediatrician this morning - apparently all of my daughter's tests (including ttg) were normal, except for one test, the anti-gliadin test, which was abnormal. But he says that since all her other tests were fine he views that one as a false positive. Does his opinion ring true / make sense to you guys here? Sounds reasonable but I am not very knowledgeable on testing so I thought I'd ask the forum.

I am going to try her gluten-free anyway, that was always my plan since I get so ill on gluten but all my tests are normal...

That was a great resource, thanks so much for posting it. We already saw the pediatrician but I am going to print this and put it in the mail, and see about getting the gene testing done. Thank you!

As would I! Except, that would likely require a gluten challenge and I don't think I could make it through that.

I am new to gluten-free and new to knowing I have a problem. It dismays me to read these comments and what I can expect to hear from people. I don't really understand why people have opinions about things they know nothing about. I have been in a wheelchair due to neuropathy for 5 years. I am able to walk but the pain I had before my wheelcbair was so severe that I was all but home bound and was taking opiates around the clock (and still in pain). I chose to use a wheelchair so I could get on with my life. Just this morning my mom tells me to take a walk outside so I can go play with my daughter in the snow. Excuse me? Of all people she knows what I've been through, but even so, there she was telling me to just go out walking (and trust me, after 5 years immobility I couldn't do that if I wanted to.)

I wish people would just keep their thoughts to themselves! :/

UKGail:

I can't believe you have to worry about airborne contamination! I would fine that a bit overwhelming I confess. As for your newly diagnosed friend, you never know how she'll be reacting down the road - I've seen many people saying how overly sensitive their reactions get after a few months gluten-free, and that's been the case for me too.

Flowermom6117:

Thank you so much for your support and sharing your story. I have calmed down a lot since her blood test (her tiny arm is black and blue from it, I am keeping it covered because I start thinking all over again!). I asked myself what I would do differently if I could "erase" the test and decide again. I came to the same decision that I should test her now, so hat helped put things into prospective. I'm trying to protect her from what's happened to me and the best way to do that is take her gluten-free now and see how she does. And since I know I would never intentionally gluten her (if she does show reactions) in order to get a test result down the road, I have to test her now before she starts the diet. I knew all these things before her blood test but it was so awful that it shook my resolve. I am pretty much assuming she'll come back negative, but I had to do my part and get her tested nonetheless.

Good for you for going ahead despite your husband's opinion to the contrary! And I'm so glad you're seeing improvements too. Let me know how things go, I will be thinking of your little one .

A lot of docs won't officially diagnose you without the endoscopy so it depends on how important an official dx is to you...

I would send a note to the doc and let him know the staff informed you that you do not have celiac. This is important - imagine someone else with less knowledge being told that - that misinformation could really do some harm and that staff member needs to be educated. The doc is the person to do that, they won't really listen to you...

Wow that is so offensive I have nothing to say! Speechless.

Thanks Irishheart

I do nibble on celery & carrots but those won't help me gain weight. I am currently avoiding nuts & seeds as I seem to react to them right now...

There have been some *great* responses and I am glad to have some confirmed safe options to try. I do want to eat a mostly unprocessed diet and do - but I find that while I'm fine for lunch and dinner, breakfast time and snacks are hardest. Since I first posted this we have successfully made muffins which I enjoy for breakfast (successfully means, finally after many attempts I have not reacted to any of the ingredients!). I've stopped losing weight and am staying where I'm at so I'll still need to try your various recommendations to add more calories .

And omg I am so excited to try popped sorghum! Hubby and I always ate popcorn on movie night and it's sorely missed since I discovered my corn problem. So big YAY on that one . Thanks again everyone!

Thanks for the support, its hard to navigate all of this and separate logic and emotion, especially where my daughter is concerned. It sucks to have a medical problem where researchers are only just starting to figure out what's what. Comments like the one in CR just compounds the problem of people not taking gluten and it's effects seriously. Sigh.

How exciting! Good for you.

Yes please!

Okay now I totally get it. Thanks for clarifying!

Yeah I think that's what I want to hear . I've read so much on this board but honestly never paid much mind to whether a person was celiac or NCGI - if gluten was bad for them I believed it, in that context the DX wasn't very important.

I think today I am really second guessing myself because I put my 2.5 yo daughter through a rough blood test yesterday to rule out celiac, based on my own gluten issues (I tested negative) and her having vague symptoms of being tiny (5th percentile), pasty/pale and dark circles under her eyes since starting solids, occasional/sporadic loose stools and just the fact that she seems to really take after me, sharing my blood sugar problems... I wanted to rule out celiac before having her go gluten-free, but I didn't imagine she would have such a bad experience with the blood draw. So today I was having breakfast, feeling guilty and doubting myself when I read that consumer reports comment and it's set off a storm in me.

If its true that NCGI does not result in major health issues, then I have Not found the cause of my health problems (including neuropathy that's left me in a wheelchair). Since removing gluten i now am sensitized to it and get sick if i have it, but that in and of itself does not mean definitively its the cause. Which leads me to think, if my health issues and all thats happened to me over the past 10 yrs are not caused by gluten then I have just hurt my child unnecessarily and that sits like a pit in my stomach.

So I am just looking for reassurance that non celiac GI DOES cause major problems and It made sense to have her tested if I'm having issues with gluten...

My hubby cooks up cannelloni beans and brown rice with onion, garlic and seasonings. Yummy!

Hmmm, one part of that article says "Unlike celiac disease, gluten sensitivity hasn't been linked to intestine damage and long-term health problems". I've done tons of reading and the latter part of that statement is contrary to what I thought I'd learned... I guess I'm trying to find out from people who have Lived it, how bad it can be, and whether you think that's an accurate statement...

I agree with the previous poster but also, keep in mind you are exercising new 'muscles'. You have avoided doing things a long time and that is what your body is accustomed to - it can be hard to break the cycle when you are used to reacting to a situation a certain way over and over again. So realize there will be days where you do great and then some days you will fall back a bit - just promise yourself that you will keep trying every day, and there will be more and more successes. You need to build new reactions/thought patterns and that is hard work!

One thing my doc suggested for me - I have anxiety problems in certain specific situations - was to chew on a bit of real valerian root. He says you can find it online. Not capsules or anything like that, but the real root. He says it has natural calming properties and really works. Probably tastes nasty (I'm guessing -haven't tried it yet) but maybe a good thing to try.

Good luck. It's a battle you're waging inside and the only way to win it is keep putting one foot in front of the other!

I do get tendinitis in my wrists really badly, it was one of my very first problems. Nowadays I also get stiff and sore finger joints when I eat corn, so I avoid that too...

For me it was at about the 3 month mark...I'm at 4 months and still in the middle of dealing with it... :0P

In the current issue of Consumer Reports onHealth there is a section "Should you avoid gluten?" in which I read the following statement:

"While gluten intolerance can be unpleasant, it's not harmful to long-term health and isn't as serious as celiac disease."

I am new to the NCGI diagnosis and gluten-free diet, and I have major health complications. Which should I glean from the above statement 1) Consumer Reports staff have no idea what they're talking about or 2) I probably have something else going on in addition to gluten issues (or was false negative for celiac).

Would love some input from the most experienced members of this board who have lived with GI and it's impact...

And another note - if gluten does Not turn out to be a problem for you - I get deep aching pain in my bones from eating sugar and variety of other things too lengthy to list here. I also got it from gluten. Point is there are many things that we eat that can cause pain and do harm so gluten may not be the end of your need to explore diet as a possible cause. You've found a great resource here on this forum, the people here are so helpful and can offer guidance every step of the way.

Ps. Yes it's hard, but believe me, we wouldn't all be eating that way if it didn't make us feel So Much Better. And that's pretty much priceless!

Celiac disease is a manifestation of gluten intolerance where the villi of the small intestine are attacked and a variety of symptoms follow. It is auto-immune in nature. Non-celiac gluten intolerance basically means the bad reaction to gluten effects areas other than the small intestine - and it can really effect any area and cause numerous symptoms from headaches to neurological symptoms to...brain fog and inability to think clearly, lol, which is happening to me right now. Anyway I'm sure others can fill in the blanks. The point is - if your celiac panel comes back negative it means one of two things:1) it was a false negative which is possible or 2) you do not have celiac. There is no way to test for non-celiac gluten intolerance - but it is just as severe and can have a major impact on one's health. So, once you have exhausted all testing - do note, you need to be eating a regular gluten diet in order for celiac tests to show anything - you should try going gluten free for a good stretch of time, at least a month or two. If gluten is a problem for you, you will likely start to feel better quickly.

The symptoms you listed could definitely be gluten-related. I hope they are, so you will be able to start healing ASAP. Good luck.