2 Toddlers, 2 Upset Bellies, 1 Exhausted Mom

[Boys mom]

I'm attempting to ask my questions without giving my whole story....we'll see if I can keep this short! I am SO appreciative of your time and advice! The backstory is diarrhea leading to weight loss (reflux, chronic colds, toddler complaining of eye pain...and a bunch of other things all my doctors want to call unrelated.)

1. My just turned 1-yo had a celiac panel run and it came back negative. Prior to the bloodwork, he was wheat free for about 2 weeks, minimal wheat for a few more than that, and I BREASTFEEDING was wheat free almost as long but had a nice sandwich binge at his birthday party 3 days before bloodwork. (no clue if gluten in breastmilk would get into his system) Our GI doc says the blood work is an accurate indicator but I've read so many posts here that say babies guts heal so fast that 2 weeks is too long. Thoughts on reliability of the negative result?

2. My older 2.5 year old had a negative celiac panel (I saw the blood work order checked for "celiac"...I assume it was the whole panel??)? Both boys have shown major diarrhea and behavior changes, crying/gas, etc and both chronic colds and acid reflux since birth. My older hit a downward spiral about 6 months ago and our food elimination diet has become quite extensive and detailed....down to things like Xanthan gum. He is literally eating rice, wheat/gluten free oats, pork/ham, and fruits/veggies but not citrus. The younger seemed to start headed down this path aboutn2 months ago and it clearly started with wheat. My GI doc said that food sensitivities "aren't genetic like a disease per say" but because blood work is normal, just says to continue food elimination diet to manage diarrhea and weight loss. My gut instinct is that they are missing something since this so blatantly looks genetic. Can anyone speak to a moms gut instinct and am I nuts for wanting a biopsy for better answers?

3. Do any of you see with your kids, a downward spiral of taking one food out of their diets only to have another food clearly show as problematic? It's like my 2.5 year old was just cruisingnalongwith really loose stools and then he got horrible diarrhea for a week. as soon as we went dairy free it was SO obvious that wheat was an issue, he lost 3lbs before i figured out what the pronlem was. Took wheat out amd and as soon as wheat was out, BAM corn was bad, from corn to...... My toddler is so good at inspecting his foods and SO reliably consistent at what he avoids. Its so sad! His little nose and eyes are razor sharp at avoiding trigger foods. What I'm wondering is based on any ofmyournexperiences, does this seem like a celiac type thing or not? (and if not, any other ideas besides food intolerance......all I can say is my mother gut instinct is that we haven't found the answer yet with the "intolerance" diagnosis.)

4. Finally, I've read lots in these strands about avoiding biopsies unless you truly want a diagnosis vs already knowing the solution (food elimination diet). I can see both sides----my GI isnt offering a biopsy formeither of my kids because elimination has stabelized their weightnand they dont have blood in theirmstools. I half want to demand it. I'm wondering if anyone can offer words of encouragement or advice on dealing with family (specifically grandparents who live nearby) who don't believe in food intolerance. (I've offered that they come to Dr apts w us and they decline). This is literally tearing my family apart because they don't trust that I am doing what's best for my kids and I don't trust that they wont override doctors orders because they are old-school and think you should force a child to eat and then he will digest anything. (ugh!)

Thanks so much!!!

[wjp]

I am 53, gluten free for 2 1/2 years and can't give advice on young children. After saying that I just wanted to let you know that I get sick if I eat the wheat/gluten free oats. I saw that your 2 1/2 year old was eating those. Good luck in your search. Keep at it mom, children are so precious.

[rosetapper23]

Okay, I think it's very possible that your children are, in fact, suffering from either celiac or food sensitivities. However, with the symptoms you've described, I just need to mention the following possibilities: water issues (could there be something in the water?), carpet shampoo issues (do you shampoo your carpets frequently...and do the children crawl around on your carpets), and is there the possibility of a mold issue hidden somewhere in the house? I bring these possibilities up because you seem to be doing everything to accommodate what may be food sensitivities, but your children may, in fact, be suffering from some type of hidden poisons unrelated to foods. You may have to think out of the box for a moment...or possibility you've already considered all of these things and have concluded that the problem is indeed food. However, I thought I might just mention these possibilities.

[Boys mom]

Okay, I think it's very possible that your children are, in fact, suffering from either celiac or food sensitivities. However, with the symptoms you've described, I just need to mention the following possibilities: water issues (could there be something in the water?), carpet shampoo issues (do you shampoo your carpets frequently...and do the children crawl around on your carpets), and is there the possibility of a mold issue hidden somewhere in the house? I bring these possibilities up because you seem to be doing everything to accommodate what may be food sensitivities, but your children may, in fact, be suffering from some type of hidden poisons unrelated to foods. You may have to think out of the box for a moment...or possibility you've already considered all of these things and have concluded that the problem is indeed food. However, I thought I might just mention these possibilities.

Thank you Both SO much for your replies!

Since I last posted, the older son has totally avoided gluten free oats so those are also "out." Your comment above reinforces me on that--thanks! As for the outside-the-box suggestions, thanks very much for your straight up candor! We ended up having an endoscopy done on the older child and are still waiting on results (I'm not optimistic for anything concrete because he has been on the elimination diet for weeks.) ALthough my gut is saying wheat/gluten is the main issue, I should definitely look into your other suggestions as its only fair to attack my house with the same intensity as my poor kiddos are being attacked! Thanks! I'm so appreciative of this resource!

[mommida]

There are so many illnesses that can present with the same symptoms. There are a growing number of illnesses that have a connection to Celiac disease. It is probably best if there is an endoscopy with biopsy done to diagnose Celiac and rule out any other possible coexisting condition(s).

Yes this advice is from a parent of "probable" diagnosed Celiac at age of 17 months and then diagnosed with Eosisinophilic Esophagitus at age 6. Dealing with the EoE doagnoses over 3 years there is an AIRBORN reaction (seasonal allergens) to the mix of trying to identify "triggers". ( another word of advice on trying to keep that food journal eosinophils once activated are active for 12 days, so keep in mind that some reactions need close to 2 weeks of monitoring to help identify and you need to include activity locations )

Get a copy of ALL of your tests. Work with a doctor that will answer ALL of your questions (RESPECTFULLY) and go through a list of everything that the doctor is suspecting that the endoscopy with biospy is going to diagnose or rule out.