My Poor Son :(

[Mama2SandJ]

I don't even know where to begin...I am a mother of 2 children who both show symptoms of celiac disease....lets start witht the more severe my 2 yr old son...

Was a nursing baby dx'd with severe reflux (did better w/o meds) removed dairy from my diet he better not 100% but it was better...I made his baby food he never ate table food until 11 months at Thanksgiving he ate mashed potatoes/gravy & stuffing. He had already been dx'd also with eczema as well that worsened after that intake of new food, also he started having up to 10-12 bm's daily he was tested for a million things sent to a peds GI and they came up with nothing. In the waiting process things seemed to improve. We went on our merry way some days good some days not so good. He continued to have bouts of his eczema flaring badly and still couldnt tolerate dairy, allergist did a limited food (skin scratch test) all negative (even dairy) but he would vomit almost immediately after ingesting dairy. All along he is extremely sick, numerous ear infections, sinus infections, upper respiratory infections, pooping undigested foods occasionally, etc. Fast forward to today he is 2 1/2 years old and having extreme skin issues, his PCP told me she knows its some form of dermatitis but what kind ??? not sure. He also has brown spots on his bottom teeth, gums are bright pink, toenails yellowing, dark circles around his eyes, iron def anemic, and always has allergy type symptoms (i.e. runny nose, watery eyes, lots of wax in ear). Put him on a gluten-free diet he made significant skin/bowel improvements then I was ordered to put him back on gluten in order to test him. We just hit the 30 day mark and he had a full food allergy skin scratch, celiac panel & the normal CBC labs for anemia and all came back negative and normal! I almost cried!! I felt like there was no way these test could be negative! He has another peds GI appt next tuesday and I feel like they will again send me shuffling along because that is what we have been doing since the very first episode! I am considering using EnteroLab for him because I am so sure that is whats wrong. I think a big part of the problem for the docs who have seen him so far is his symptoms come and go sometimes they are extremely flared up but ususally by the time we get in to be seen he will make a little improvement, also he is not short in stature so they basically laugh at me and say "theres no way this kid has celiac!"

My daughter is now 10 and has ADHD, seasonal allergies (which are year round...hmm??? lol), and also has reflux. She had chronic/extreme constipation (still occassionally has problems) as a toddler she has behavioral problems that she cant seem to control and has also had problems with dairy. When we all went gluten free I couldnt believe the difference in myself as I have suffered from many of the same problems as my son with the low immunity and constant "allergy" symptoms, gut-ache (not nausea, vomitting or diarrhea but unexplained pain), I was even diagnosed with chronic malaise (fancy word for tiredness!) and a migraine disorder years ago. I guess call me crazy here but what do you all think??? I'm thinking celiac or even non-celiac gluten intolerance at least!

Please share your thoughts with me...I'd love to hear some opinions on EnteroLab! Im a single mom of these 2 blessings so I do not have money to waste for sure! $369 for the complete panel w/ genetic testing is alot of money to spend on testing especially for all 3 of us! Thanks for your thoughts!

[Mom2J112903]

A month off gluten does not seem like enough time for a proper testing. We were told a minimum of 6 months for a *good* picture via scope.

Even our current GI says "if it walks like a duck, quack likes a duck, it most likely is a duck" even if pathology or labs say differently.

Celiac is also different than being allergic to any gluten.

My son's entire GI system is screwed up, from Dysphagia to GERD to DGE (Delayed Gastric Emptying) to Celiac to IBS (most likely IBD but due to the severity of his colon issues we can not get an accurate dx) to Megacolon, he was MISERABLE in every possible way. Even one of those dx can make a person miserable, so always check the entire GI system when dealing with GI symptoms IMHO.

[pricklypear1971]

Kids notoriously test negative. Especially a 2 year old. They also could have run incomplete panels... The list goes on. Read through threads in this section for more stories just like yours.

I'd suggest testing for all, except if you've been gluten-free that will invalidate testing. I'd find a good doctor who is willing to work with you, run vitamin panels on all of you-you too! Work to at least get a NCGI dx if you can't get a Celiac dx. If yall can get back on gluten (sounds tortuous especially for your son) you could pursue blood work and endoscopy.

[Mama2SandJ]

A month off gluten does not seem like enough time for a proper testing. We were told a minimum of 6 months for a *good* picture via scope.

Even our current GI says "if it walks like a duck, quack likes a duck, it most likely is a duck" even if pathology or labs say differently.

Celiac is also different than being allergic to any gluten.

My son's entire GI system is screwed up, from Dysphagia to GERD to DGE (Delayed Gastric Emptying) to Celiac to IBS (most likely IBD but due to the severity of his colon issues we can not get an accurate dx) to Megacolon, he was MISERABLE in every possible way. Even one of those dx can make a person miserable, so always check the entire GI system when dealing with GI symptoms IMHO.

We were only off the gluten for a short time around 4 weeks truly gluten free...thats how I feel about it too but seems everyone thinks I'm just searching for something that isnt there but clearly something is not right!

[Mama2SandJ]

We were only off gluten for a period of 4 weeks and once we went back on (symptoms returned in full force and worse!) we were on for 30 days before the panels were run. From I have read on other members posts and what i can find online they did a complete celiac panel. but after posting this last night i was reading somemore info and one article said the use of steroids even topical creams could affect your results in which we use for his dermatitis!

he goes to a peds gi on tuesday so we'll see what they suggest but i'm guessing i'll get the run around yet again!

i have read other posts about peoples symptoms coming and going...it would be interesting to see what his scope would show only being 2 i wonder if there is enough damage. i cant be tested because i dont have any medical coverage my daughter though i could ask about...thats why i was asking about Enterolab since you dont have to have a dr's order for those but i only find people who were positives and rave about it...is that coincidence or not? I'm not sure...

[MitziG]

You can't be tested- and you know gluten is a problem for you, so dx yourself and go gluten free.

As for the kids, I am not surprised your son was negative. Blood tests are notoriously innacurate in little kids, and if he had any antibodies, they likely disappeared in your 4 weeks gluten-free. A month back on it was likely not enough to rebuild them.

Ask for a copy of the labs that were done, and post them on here. We will let you know if any are missing. (Very likely as most docs run only 1 or 2 of the older, less accurate tests)

Would your ped have him scoped? Better way to view the damage, although biopsy can miss it too.

Have your 10 yr old get the full panel now. Keep both of them on gluten until all testing is done. If it is still negative, then definitely assume it is at least gluten-intolerance and go 100%gluten-free. If you can get a dx for them, that is better though, as they will need accomodations in school.