Tested neg for celiac-now what?

[Mizyellow]

:
So my son's celiac blood test came back neg. They didn't do a genetic test just the panel. The doc said we should do a endoscopy which I think is crazy to do on a 14 month old! No one can figure out why he is not growing and has chronic diahrrea. What to do what to do? Should I assume it is not gluten and try a differnt route or try a gluten free diet? Input please!

[tanyalynn]

We are gluten free without testing, and I strongly doubt we've got celiac. I'm okay with being GF forever if we're never able to introduce gluten successfully, but it depends on you and your partner, how you feel you'd do with that. There are other things that are possible, for chronic diarrhea and not growing I mean, but just trying GF (and consider that maybe he's sensitive to other foods because his body was so stressed by the gluten, and removing some of the other big allergens may be helpful for some period of time) is easy to do at home, no testing required.

[crunchy_mama]

You should assume nothing from the test. The test is so very, very, very, very, very, very, very inaccurate(did I stress that enough!). If you have the money I would spring for the from Enterolabs. Regardless I would do a trial. If he isn't growing w/ constant diarrhea this is way important. I would give it at least a month. Remove everything gluten- check lists religiously- check bath products. If you are consuming even a little gluten it will skew the results and keep you from seeing good results. It has to be a full elimination.

[Chinese Pistache]

What other foods are you/have you eliminated? Gluten is only one possibility. Lack of growth and chronic diarrhea were caused by corn in my dd (IgE). My two allergic kids get diarrhea from all of their allergens (dairy, corn, wheat, soy between the two). Have you had any regular allergy testing done? It's not 100% accurate either, but it might give you a starting point.

[dannic]

I would trial it anyway. I love Bock's book, Healing the New Childhood Epidemics! I wish I'd had it when I began our journey.

[Mizyellow]

So since Lennon isn't gaining weight- if I put him on the GF diet- should he start gaining weight within a month if it is a gluten problem?

He got the RAST test at 6 months as well as the skin prick test and tested neg for everything- including dairy! go figure!

[Chinese Pistache]

Our allergist said that blood testing isn't very accurate until 3 or 4 yrs old. And If you're dealing with IgG reactions (which are just as serious), they won't show up on a RAST test (only IgE).

Have you not done just a regular ED and/or food journal? I would do one and for a month removing gluten as well as the top 8 plus corn (or maybe just wheat, soy, dairy, corn, and possibly eggs). I don't think that you'll see significant weight gain right away, but you will see an improvement in the diarrhea if it's any of those foods. After a month, you can always add back in the foods one at a time (one a week or so) and see what happens. It just seems like you'll waste time if you JUST eliminate gluten and it turns out to be more than gluten or something different. Then, you'll have to do another ED and another trial. Two birds and all that.

Also, if you're nursing, you need to strictly the foods as well to get an accurate reading.

One more thing, dairy is the number one food sensitivity. I'd be VERY surprised if your child is having these issues and dairy is NOT one of the culprits. Even celiac or gluten intolerance usually induces dairy protein intolerance (usually temporary) because of gut damage.

[mnordwald]

Similar situation here...

Our 2 yo DD has had crazy bowel movements for a while. Her blood testing came back negative. We recently took her off dairy for 12 days, with no change. Then we put her back on dairy and started a GF diet, and today is Day 6 of her GF diet. On Day 4, her bowel movements were relatively normal!

Now to decide what testing we want for a better confirmation. I guess I fall in the camp of wanting the official diagnosis.

[Mizyellow]

Originally Posted by mnordwald

Similar situation here...

Our 2 yo DD has had crazy bowel movements for a while. Her blood testing came back negative. We recently took her off dairy for 12 days, with no change. Then we put her back on dairy and started a GF diet, and today is Day 6 of her GF diet. On Day 4, her bowel movements were relatively normal!

Now to decide what testing we want for a better confirmation. I guess I fall in the camp of wanting the official diagnosis.

I hear ya there. I talked to a celiac specialist today and she said that until 3 there really aren't good tests so it is all just trial and error- she said that even the endoscopy can be wrong. IT is sooo confusing and is stressing me out too. I don't want Lennon to be GF if he doesn't have to be! We haven't started the GF diet yet- I am going to clean out the kitchen this weekend and start on Monday.