Gluten-free Without Official Diagnosis

[mairin]

I'm nervous about putting my 5 year old on a gluten-free diet because he has tested negative twice on blood tests. Somehow I feel like I'm lying because he doesn't have the medical establishment's "official" diagnosis, therefore, I'm hesitant to state he is a celiac.

His 9 year old sister tested positive twice on blood work and then biopsied (March 07) and had tons of damage. My mother is also a confirmed (blood test) celiac. MY son was starting to display some of the same symptoms that my daughter had -- not GI symptoms except lethal flatulence, but behavior issues, especially in school. He is small for his age, less than 3% for height and weight, slight speech delay which seems to be getting better as we work with him. He has no developmental delay or physical delay (rode a two wheeler before he was 4).

I put him on the gluten-free diet on Saturday after a long conversation with the teacher -- it tipped the scale for me to get him gluten-free. His behavior has deteriorated since the beginning of school, no focus, easily upset, fidgets, etc. The daycare also noticed his change in behavior and noted it was significant.

My 9 year old went through several years of horrendous behavior, which started in Kindergarten, before being diagnosed as Celiac and I wanted to save my family from that downward spiral. We never knew and blamed her behavior on psychological issues rather than physiological. We didn't know about the genetics of celica disease until recently.

I know that a positive response to the diet is often enough for diagnosis (not from the medical estabilishment unfortunately). My son had a terrific day at school, he waited his turn, was quiet and didn't blurt out answers, raised his hand, and didn't get into others' space. The teacher was also wonderful as she had planned to use smarties for an activity and used skittles from my son's new snack box. I was surprised the teacher was so thoughtful and forward thinking.

Anyways, a long post to ask those who don't have the official diagnosis from the medical establishment, does it make a difference as children get older in sticking to the diet and remaining gluten-free? My daughter will NEVER eat gluten on purpose as she feels so much better, plus the GI told her that she had extensive damage. But my son has tested twice negative but I felt I couldn't wait another 10 months to get an appointment with the GI. He keeps saying he doesn't have Celiac because his blood is fine.

If you decide to be tested how long does one need to be on gluten, or do a gluten =challenge? Is it worth having my son's blood tested again, after he's been gluten-free for 4 days. Am I too late, or is it even worth sticking him with a needle which he absolutely hates?

Thank you.

[Ursa Major]

I believe you are doing the right thing. Both my oldest daughters have put all of their children on a gluten-free diet without an official diagnosis (that is seven children, plus themselves), because I obviously have a huge problem with gluten (I am also self-diagnosed). Some of the kids didn't have symptoms, but the ones who did have had significant improvements, in both behaviour, weight gain, pain ('growing pains', there is no such a thing, of course) and finally solid bowel movements.

If you want a paper stating that your son is gluten intolerant, you can still test him with Enterolab. Their tests are much more sensitive and are accurate up to a year after going gluten-free.

Your son would have to eat gluten again for three to six months at least for testing (and it may still end up with false negative tests). Really, it wouldn't make any sense at all to put him through that. You can already see significant behaviour improvement, which is proof that you are doing the right thing.

My oldest daughter decided to make her house gluten-free, to avoid cross contamination. She has five children, and a husband who refuses to join them in going gluten-free (even though he'd probably benefit). Her three oldest kids feel much better on the gluten-free diet, as does my daughter. The three-year-old is the one who will get upset when he sees his dad eat gluteny crackers or bread, because he wants them, and he doesn't appear to have a problem with gluten. So, keeping him gluten-free is a struggle. The one-year-old doesn't care, of course.

She will cook and bake gluten-free, dairy free, soy free, egg free, nightshade free (potatoes, tomatoes, peppers, eggplant), due to multiple intolerances (every kid has several, and her and her husband have a few as well, it is difficult). I don't know how she does it. But they all seem happy and well fed (they do take vitamins, of course).

I have a ton of intolerances as well. In comparison, just eliminating gluten seems like a piece of cake (gluten-free, of course ).

[EBsMom]

My dd (10) had no problem with not eating gluten again, because she felt so badly before (like your dd.) My ds (12) felt fine, but had bigtime focus issues, that went all the way back to when he was in preschool (he's a 7th grader now.) Our pedi still thinks we're a bit bonkers to have linked his behavior to gluten, but she can't deny how well he's doing now. He, himself, states that "I don't have a fog in my brain anymore." He loved many, many gluteny foods before, and I really thought that he'd have a hard time accepting the diet, so we had him tested through Enterolab. Again, our pedi doesn't know what to think of it, and she probably doesn't really "buy it" (I offered to give her a copy of the Enterolab report, but she passed) but I don't care. HE IS DOING SO MUCH BETTER, in terms of his focus, that I do NOT need an official medical diagnosis to qualify our decision to take him gluten-free. He was reluctant to stick to the diet until he saw his positive Enterolab results. Now he's great about it, even calling me from friends' houses to check on the gluten status of certain foods if he's not sure. Sure, it would be nice to have the backing of our doctors....but it's not absolutely necessary. All that really matters is how well he's responded to the gluten-free diet.

Rhonda

[Cheri A]

Follow your mommy instinct.

My daughter has multiple food allergies (see siggy), including wheat. The celiac testing was inconclusive. Some of the indicators came back positive, some negative. Testing was done by the allergist, and I was offered the scope. We decided that the "official" diagnosis was not as important to us as how she felt. She was diagnosed two years ago last month, at 6 years old. So, she was old enough to realize how she felt, the horrible gas, the vomitting, and tummy aches. She "tested" it once by eating a hamburger w/a bun, and started getting belly pain, followed by vomiting within an hour. She has never tested again, and has motivation not to feel that way again.

[kbtoyssni]

The fact that he didn't have a positive blood test is a good thing in my opinion. It means he doesn't have enough damage yet to get a positive. If you see a positive response to the diet, I would consider that your diagnosis. I wouldn't want to keep making my kid sick for months just to get a positive blood test.

[shan]

He should be old enough to remember the pain or whatever he felt before - my almost three year old won't touch it and if someone ever dares to try to give her gluten she'll say "sorry it has gluten in it and i can't have it "

But she does have an official diagnosis ....