What Is My Next Step?

[justlovlie]

Hi everyone,

 

My 4 year old daughter is in diagnostic limbo-land, still mildly symptomatic, and I could use some help in figuring out what I should do next.

 

The (long) back story:

About a hear and a half ago, the whole family had a very bad gastroenteritis bug.  The rest of us got better, but my then-3yo really did not.  She was having middle of the night vomiting episodes, explosive and uncontrollable bowel movements - sometimes diarrhea, sometimes not.  She was potty training at the time, and the way things were happening it was hard at first to figure out if they were just accidents, if the vomiting was related, or what.  I knew that she fully understood and was capable of using the potty, and had long wondered if she might have a problem with grains (when she was a young toddler, she would often have gritty/grainy BM's, really painful diaper changes, after eating something heavy on grains), so we saw our family doc.  She advised that we go gluten free for 6 months and see if that cleared it up.  We did, and her symptoms starting improving very quickly.  At that point I learned that we should have had testing before changing her diet (oh how I wish I'd known that sooner...!).

 

So I started giving her small amounts of gluten foods again and made an appt with a pedi GI.  Her symptoms returned, albeit much much more mild than before.  She was back on gluten, though very little, for about 2 weeks prior to testing.  Her labs were negative for celiac indicators but mildly positive for wheat intolerance, and very mildly positive for soy intolerance.  Her vit D and iron were excellent and we don't supplement, but her growth had definitely taken a hit.  The GI doc said her symptoms were more typical of celiac disease, that she would not expect such a strong reaction from a weakly positive wheat intolerance.  But we went with that tentative diagnosis for the time being.  

 

We cut wheat and soy from her diet, and occasionally cut dairy temporarily if she'd had some exposure.  We weren't specifically gluten free, but very gluten-light by virtue of avoiding wheat.  Months passed, and I would discuss how even the slightest wheat exposure would make her symptomatic.  (For instance, she started to eat another kid's Wheat Thins at preschool, but the teacher caught it and had her spit it out.  She didn't even swallow any whole chunks yet still got sick that night.)  Her behavior would change, she would have tummy aches and diarrhea.  I notice that the only time she ever has pee accidents is after some exposure.  Sometimes I have noticed that her eyes dilate when she's in that spacey behavior fog after an exposure.

 

GI decides to amend her diagnosis to 'presumed celiac'.  I remove more non-wheat but possibly gluten-containing foods (ie uncertified oats, etc) from her diet.  Gene testing reveals that she has one DQ8 allele.  Still no confirmed diagnosis, but obviously we can't rule it out now either.  I asked the GI if I should just put her back on gluten again and retest...the doc does not want to do that, fearing it could cause her real damage.  I would absolutely cringe at the idea of intentionally feeding her something that I know will hurt her, but on the other hand, part of me thinks it would be better to bite the bullet and do it now before she is in kindergarten, and know for sure.

 

That's where we left it a couple of months ago.  Our next follow up with the GI isn't until October.  

 

So that's her story.  I apologize for the length of the post, but I feel like I need to lay it out to some fresh and experienced ears!

 

Where we are now is that we are learning more every day about hidden gluten, and continuing to alter her diet accordingly.  I have not yet taken the steps of replacing toasters and cutting boards and and and...and I'm on the fence as to whether or not I should go whole hog yet on the chance that the doc will want to do a gluten challenge and redo the labs or go ahead with an endoscopy.  She complains almost daily of tummy aches despite her diet, which leads me to wonder if she is feeling the effects of cross contamination...if I should go ahead and replace my kitchen tools, be more diligent about brands of foods that may be contaminated, and so on.  The tummy ache complaints have increased recently, so I am also wondering if I should hold out for that October appointment or make an earlier one.  She is such a tough cookie, she just tells me matter of factly that her belly hurts.  There is no gratuitous whining over it, no plays for extra mommy sympathy.  It just is there, bothering her, more often that not lately.

 

Any insight would be great.  I wish I had a magic bullet to make it go away.

[BlessedMommy]

Maybe the best option would be to do a 2 week gluten challenge and then go to an endoscopy? I'm sorry that you're in this situation. I wish that doctors could understand the problems with prescribing a gluten free diet without proper testing. 

[nvsmom]

Yeah, that's a tough spot.  

 

As I see it, you have three options:

1. Go gluten-free. 100%. Assume she is a celiac and be strict so she will get well and stay well.  Change the toaster, get new utensils and pans that are cracked and scratched and could have gluten in it. Make the whole family gluten-free if possible.  Minute, tiny amounts of gluten can make a celiac sick so you'll have to be careful.  If she is the type who will help herself to snacks, then make sure the goldfish crackers and cheerios are gone so she can't hurt herself.
2. Do the 8-12 week gluten challenge (or the shorter challenge for the endoscopic biopsy) and then go gluten-free regardless of the results... It is more difficult to get a diagnosis for young children/early celiacs; they are more likely to have false negative test results so the testing can not always be completely trusted.  PLUS there is the chance that she has non-celiac gluten sensitivity (NCGS) which has all the same symptoms of celiac disease but there are not accepted tests for it at this time.  NCGS is much more common than celiac disease and could be making her just as sick.
3. Look into checking for intestinal parasites, lyme, and SIBO. Celiac can be kicked off with a trauma to the system like an illness, but illnesses can hang on and cause problems that look like celiac disease.

My vote would be to do #1 and #3, but I am biased.  My kids all tested negative for celiac disease after I was diagnosed but two of them had obvious, yet mild, symptoms of celiac disease.  They only had the tTG IgA run, and that test can miss up to 25% of celiacs, so I decided to make them gluten-free... coincidentally (according to the doctor  ) their symptoms improved quite a bit. They do not have a diagnosis, but they feel better.  In case they want to resume eating gluten when they are older, I am hammering it home now that they would need to retest every couple of years to make sure they don't damage themselves with years of eating wrong.

 

BTW, my only symptoms as a young child was daily stomach aches and constipation. It wasn't serious, and easy to ignore, but ignoring it resulted in several more health problems, one of which almost killed me when I was 18. I applaud you for finding answers now, and considering treating your daughter with the gluten-free diet even though the doctors haven't figured it out yet. You could save her years of poor health-  good work Mom!