Newbie Needing Help :)

[slee]

Hi-

I'm new here. I've been reading for awhile, and asked one question, but need more advice now.

Here is our story... I have a 20 month old son. He's had some various issues we've worked at discovering, including asthma, skin conditions, an intollerence to milk and an egg allergy, as well as some unidentified environmental allergies, but it seemed we were still missing something. A few months ago he had diarrhea which lasted a month, he had various testing done (not celiac testing) which all showed up negative, and a friend suggested trying to take gluten out of his diet. About two days later the diarrhea was gone. We had a later doctor's appointment, about 6 weeks later when he had croup, so, an unrelated appointment, and I mentioned to the doctor he was off gluten, and about the diarrhea, the doctor (not his normal doctor) thought he should be back on gluten so he could grow right, and thought this was bad for his health, so she ordered a celiac test, which came back negative. We had an allergy appointment, negative as well, so we reintroduced gluten. Less than a week later he was having diarrhea 8-10 times a day. After a week, it reduced to 3-4 times. He has also had terriable stomach pain, gas, excessive thirst, skin problems, etc. we have of course discovered since that the test was done wrong, and it would always be negative off gluten, so his allergist talked to GI, who asked us to continue the gluten for 2-3 months and come in for testing. They expected celiac. He's been on gluten 2 1/2 months now, and things have been getting worse and worse for him. He's loosing weight, his skin is pale, he has purple circles under his eyes, constant diarrhea, gas, pain etc. he's waking at night crying and grabbing his tummy. Today school called me, because he'd been crying for 3 hours! I called to see if I could get an earlier appointment, we've got 3 weeks until ours, and he's been on gluten long enough now for testing, he couldn't, and they wouldn't even talk to me without seeing him, I tried to call peds, they were full today and reccommended the ER. Called allergy, since she had made the referral, not in, called the ER, they said to come in, so we did... long story short, they finally did the test today. They are expecting it is celiac, but the allergy doc, and the docs today have confirmed no matter what he needs to be off gluten. They did the test, and said I could get him off gluten right away, and they would have GI call back if they need to do an endoscopy, and that we should keep our appointment in 3 weeks... I don't think I'll get results until then, but thank goodness I can get him off gluten, I felt like I was poisioning him!

My questions are many, can you tell me when do they do an endoscopy? Why do they need to some times and not others? I am still breastfeeding, working on weaning, but it won't be real fast, the doctors suggested nursing until 2, since he couldn't drink milk, also don't want to spring too much on him at once...(my earlier question was about this) so I know I need to go off gluten, but the catch is, if he tests positive they want to test both me, and my other son. It does seem we might have some symptoms, and since you have to be on gluten for the test, and off for breastfeeding... any advice? It could be 3 weeks before we get the results. Also, and advice on making this transition easier on him would be great, he was so frustrated last time he was off gluten, and is loving it now... he'll wake at 2 am saying cracker! We never found substitutes he liked very much. Any food suggestions? or any other advice at all to some new to this? Thanks

[Rosebud710]

What you've been through! I feel for you.

I'm not sure how much of a help I will be, but I suggest that you just stay off the gluten and get tested after you wean your son. You need to be eating gluten for the test and it's just not worth it making your little guy miserable.

Cracker suggestions: Glutino has a wonderful cracker that looks like Ritz and they taste good. There was a thread recently about crackers - it was only about a week or so ago. There are also animal crackers that are gluten-free and taste good. I get the Glutino crackers from Whole Foods, but the animal crackers I can find at my local Meijer.

If you can hold out another 4 months, I would continue to breastfeed. If it will help him in the long run then it's worth it. I agree with you, he's been through so much - take things one at a time.

Maybe someone from here knows about endoscopies, I'm not very familiar with them.

Good luck!

[puttersmom]

I just wanted to encourage you in the fact that although he's so little, believe it or not, it's probably going to be a little easier to get him adjusted to gluten free eating. My son was a year and four months old and he is now 3 and eats most any gluten free pasta and/or bread. For one thing, velveeta is gluten free and even gluten-free pasta covered in it makes some good mac&cheese! That's what we do at our house and even my 6 yr old likes it(her and I are non-celiac). A bread maker with gluten-free bread mix makes the best bread ever! Again, we all eat and like it.There are gluten-free waffles that can be found at most health food stores. I don't know the brand but there is a gluten-free cracker that isnt too bad. Ball Park hot dogs, any HillShire Farms meats, Cheetos, Cool Ranch Doritos....all gluten-free and my son likes them all!! I don't know if you are in an area that has WalMart close but their Great Value brands of food are very good at labeling gluten-free any item they have that are gluten-free. Cocoa Pebbles, Fruity Pebbles, DynoBites, Little Einsteins, and Trix are all gluten-free cereals that can be found at the grocery store.

Also, something that I've always done with my son is told him the reason he couldnt have a particular food. I would tell him(even at a year and a half) that it would hurt his belly or make him sick. As he gets older, we're getting more into the discussion of Gluten. Now it's more of.. no its not glutenfree or that has gluten in it. He understands the concept of a belly ache. And he understands that there are some foods that hurt him. As a former preschool teacher(in case that counts for anything!), a mom of 2, and a celiac mom of almost 2 yrs, I would say that the more that you explain(on his level of course) WHY he cant have it the more he's going to want to avoid those foods. Kids are alot more resilient than we sometimes give them credit for.

As far as the scope goes, I think that if the symptoms are there but tests are coming back negative, that's the next step to confirming it as celiac. For my son, they had both scheduled even w/o results so we could be certain. His blood tests were inconclusive but his scope revealed the thin, damaged intestinal linings. His pediatric GI has already told me that at 5 or 6 he wants to have him get back on gluten then have another scope to check the results. We didnt really go into alot of that but I assume it is bc its pretty rare to make an "official" life long diagnosis at 1!

Also, in reference to the breastfeeding scenario, I would think that at only 4 months shy of being 2, you could safely wean him but like you said, so many transitions. Maybe they could schedule the testing for a little ways away to give you time to get him weaned and then get back on gluten before hand.

Our case was pretty traumatic. He was so little, eating like a pig, withering away... it was awful. But over a year and a half later, I'm the voice of hope... He is happy and healthy. Right on track with all physical and developmental milestones. Not a bit of diarrhea, no tummy aches, no gas and bloating! All the time it gets a little easier, we find a new gluten-free something we thought was off limits forever! I hate that getting him diagnosed was so traumatic but I'm so glad you guys are on your way to good health!

[Ursa Major]

Slee, first off, the scope will be negative if your son is off gluten for several weeks beforehand. Children usually heal fast. Since gluten obviously makes him desperately ill, I see no reason for keeping him on gluten for a test, I would cancel it if I was you.

If you go gluten-free now so you can breastfeed him, and you find you feel better without gluten, I see no good reason whatsoever for you to go back to eating gluten for testing after weaning.

If you have celiac disease, your villi are damaged. They will heal on the gluten-free diet. For testing you would then have to be eating the equivalent of at least four slices of bread a day for a minimum of three to six months in order to even have a slight chance of getting a positive test result. You would have to destroy your villi again for that, possibly causing irreversible damage and triggering other autoimmune diseases. It is absolutely crazy to even consider doing that.

Rosebud, the reality is, once a celiac, always a celiac. If your son has been positively diagnosed with celiac disease at the age of one, he will still be having celiac disease at six, 20 or 60. Of course, he will heal, and his tests likely would come back as false negatives if retesting. Once his intestine is completely healed it could take years of eating gluten to obtain a positive biopsy. All the while the gluten would be damaging him, possibly causing other severe problems, like diabetes, hypothyroidism, ADHD, bipolar, osteoporosis, stunted growth, agression and other not so pleasant things.

It would be positively insane to challenge your son with gluten at a later date. It sounds like he was terribly ill eating gluten. I can't imagine that you would like to purposely make him that ill again.

Your pediatric GI sounds like he doesn't really understand celiac disease if he thinks he needs to confirm the diagnosis when your son is 5 or 6. I thought they'd have smartened up by now, that is what they used to do in the 'stone age' of finding out about celiac disease, many years ago.

[loco-ladi]

Most of what I was going to say has already been said, so rather than repeat it I will just add a "yeah what they said"

one thing I will add as I didnt see it above is that testing in young children is very common to show a "false negative"

[tiffjake]

Wow slee!! I don't have kids yet, so I can't imagine what that was like to go through, but I do have some ideas for food.

EnerG make some real junk, but they also make some good stuff, like their crackers. They are the closest thing to a saltine I have ever had gluten-free! And Ian's makes mini gluten-free chocolate chip cookie buttons and cinnamon cookie buttons. There is always applesauce, bananas, things like that. There are a lot of good gluten-free cereal options too. Whenever you get to the solid foods like that.