How Long Is This Supposed To Take? The Waiting Is Killing Me.

[Cara in Boston]

Sorry to be so dramatic.

Here's the story:

My 5 year old son was complaining of stomach aches pretty consistently for about 10 days - at the same time, his behavior took a shocking turn for the worse - tantrums, melt downs, super sensitive to absolutely everything, etc. Doctor tested for Celiac and 2 of the blood tests came back positive. This was back in December! It takes about two weeks to book an appointment. We went to GI specialist, all he did was more blood tests. Wait two weeks. Get results. He has the genetic marker. Wait more to schedule endoscopy. Dr. busy, Dr. out of town, got appointment in mid-March for procedure. All this time he is still eating gluten and still as grouchy and unhappy as ever.

In the meantime, having learned about it more, I realized I have many of the symptoms so I got tested too (and my older son.) Took two weeks to get results. Some positive, some not. Can't get follow up apt. until Feb 28th (and I'm sure there will be more tests and more waiting to schedule . . . )

I know I need to be patient - especially to get proper diagnosis for my 5 year old. We will need it to ensure the school will comply, etc.

But, do I really need all the tests? I'm thinking of just going gluten free and if it makes me feel better, GREAT. Not sure at my age if I really need a confirmation of Celiac.

My blood tests were:

IgA: 376 (69-309) above normal

TTG Ab, IgA: 50.83 (0-15) elevated

Gliadin Ab (s), IgG: 4.35 (0-15) Normal

Gliadin Ab, IgG 5.47 ((0-15) Normal

TTG Ab, IgG: 5.47 (0-15) Normal

Any advice?

Cara

[Takala]

Well, how completely frustrating to have to wait that long for the GI doctor to not be "busy."

The reason to try to stick with it while waiting for Godot, is that if you go off of gluten for any length of time, you may then screw up your test results. Then the Doctors will look at you and Not Be Pleased. Don't go for a biopsy after you've been off gluten for awhile.

Some people can tell very quickly when they eliminate gluten that This Is It. Others might be expecting a big reaction, and be surprised that it's more subtle or slow.

But then. What if your biopsy comes back negative, anyway ? Sometimes this happens. You should, with those half results, try going gluten free, since you said you have symptoms and the kid had to inherit it from somebody.

How are you on sticking with something once you make up your mind to try it ? Because this isn't one of those types of things that you can't really commit to, and then change your mind, if this really IS the problem. I see a lot of people on here who have, to put it mildly, trouble sticking with a gluten free diet and are coming up with every excuse in the book to go off of it, but they know it's sort of wrong so they come in here anyway and leave a trail of breadcrumbs so somebody will talk them out of it. One of the symptoms of being glutenned is wanting to keep being glutenned....

I went on it on my own after self diagnosing, but I was so sick and the doctor(s) so clueless back at that time, that I was both highly motivated and fairly sure I could not be doing anything further to screw up anybody's idea of co operating with a testing procedure. I gave it pretty much a good go begging over about a two + year period for somebody to take the neuro symptoms seriously AND my response to grain, and with positive brain scan in hand (oh, look, lesions! ) they're still insisting Nope, not that because I am not thin, not wasting away, don't have D, and apparently can't get the ol' blood to cough up anything exciting.

I think I went several years before I even TRIED to make something that was not made of nuts or rice for a wheat substitute, I didn't even do potatoes at first, meat, nuts, vegetables, fruit, and I remember being scared the first time I made a little quinoa thing, because of my starting to get rid of the brain fog and ataxia and I had NO desire to experience that again as self induced from messing up. It doesn't even bother me to see other people eating junk food, like it does a lot of others.

I realized that at some point I had to let the GP in on the secret (your patient is not eating what you think they are) in spite of the last blood test (blood tests... ha hah hah ! oh, sorry, wrong universe, this reincarnation ! ) and I told him hey, notice how all these symptoms have gotten better, and guess what just put down that I don't do wheat products anymore if I need a prescription or treatment because I haven't eaten it in 4 years since that (dumb doctor incident,) and I'm never touching it again. Really. Not A Fad. Totally. This was several years back and he humored me.

But a person who does not feel bad when they eat it, isn't officially diagnosed, and may not be highly motivated because I or somebody else hasn't done a good enough job letting them know what could happen if they really are gluten intolerant and/or celiac and don't stick to a diet for it, could have problems. You won't have an Expert Opinion To Cite. You may not have a laundry list of associated symptoms and conditions. It does require a fair amount of stubbornness as people will try to give you unsafe food and sometimes act oddly when you have to refuse them, you try to give them gluten-free food and they wrinkle their noses, or then you have problems with relatives and cross contamination, or they just get frustrated shopping.

And then with other family members, you must advocate for them. Kids are subject to peer pressure, which can be immense. Teachers may mean well but not quite get the whole cross contamination thing.

So, no, you don't really "need" the tests, but you may wish in retrospect that you had them after all, or maybe not, because not everybody leaps into these lifestyle changes in the same manner.