Pos. New Syptom In 2 Year Old?! Feet, Leg Pain?

[mmcc54]

Our 2 year old has been dealing with this forever..quickly ill give you a run down..stopped gaining weight at 6m at 9m ttg igg blood work pos. at 18. endoscopy neg. Did a gluten challenge at 1.5yrs blood work ttg igg pos at over 150..endoscopy neg. GI doctor said she can eat gluten and follow up in a year...her follow up apt is tomorrow...EVERYDAY she says her tummy hurts its always about 30min-hour after eating..and every night she says her feet hurt or her legs hurt. Is the feet and leg pain a new symptom? Does it have anything to do with this??

[cyclinglady]

Wow! I remember you! Your little one is still suffering? I would find another doctor ASAP and get a second opinion. Your daughter is growing and the first five years are critical to her development. Based on the blood tests alone (take in copies of all lab reports etc.) another doctor might give a diagnosis on just the blood test along.

She has symptoms, why is your doctor continuing to allow her to be sick? If the biopsies are negative after positive blood test results, then the next logical step is to go on the diet for six months.

I am no doctor, but as an adult, I would get off the gluten if I were in your daughter's shoes.

To answer your question, leg and feet neuropathy pain is a celiac disease symptom. That is nerve damage! She is not getting all the appropriate nutrients. You do not have to be underweight to have celiac disease. Somehow, the body compensates, but damage is still being done.

Get a second opinion even if you have to go outside of your insurance. The cost of an office visit has got to be less than $ 200 for a GI. Negotiate the the cash price!

I wish you both well and keep us posted.

[nvsmom]

The biopsy misses 1 in 5 celiacs. She is probably a celiac. She has (very) positive tTG IgA, and (weak) false positives happen only 5% of the time.  Those few false positives are always caused by something - usually thyroiditis, crohn's, colitis, diabetes, chronic liver disease or a serious infection - so if she doesn't have another health problem, it is most likely celiac disease.

 

Your doctor wants her to get sicker so he can see the damage and then he'll finally prescribe the gluten-free diet.  That's just such a horrible thing to do to a child.    I agree with cycling lady, do the gluten-free diet for a good 6 months. Keep a food and symptoms journal so you can see how she improves over the next few months (improvements do take months so be patient).  Perhaps drop dairy for that time too; half of all celiacs can not handle dairy before they are healed.  Dairy causes pretty severe stomach pain in those who need to avoid it so be aware that it could be causing problems too.

 

When the 6 months are up try retesting. In some celiacs, the tTG IgA could  be coming down by six months; in most, the tTG IgA is lower after a year gluten-free.

 

I hope you'll make her gluten-free... Her symptoms sound so much like my childhood symptoms.  I remember laying curled up on the couch every evening due to a stomach ache - nothing ever helped. Eventually I just learned to fake it through the pain so no one could tell I was hurting. And the leg pain... adults told me it was growing pains.  They were wrong, for me it was the beginnings of arthritic like pains.  By my mid twenties, the arthritis could be pretty debilitating at times, and now that I'm forty it is a daily thing.  Every few years I developed new symptoms and autoimmune diseases...That's not the path you want her on.

 

What the doctor is advising isn't working for her.  A new doctor is a good idea.  And remember that you don't need a doctor to change her diet. For that you just need determination in the first couple of months, after that it gets to be second nature.  The earlier you start her on the gluten-free diet, the more ingrained you can make that way of eating.

 

Best wishes.  I hope she is well soon.

[mmcc54]

we have actually been doing 6 month of gluten-free then blood work...she has only been on gluten for 3 months now because im assuming they want to do more testing tomorrow when we go it...I also have a huge note book with about 2 yrs worth of food notes/symtoms notes ect..its  been a LONG hard road to get a diagnoses...this is the only pediatric GI dr within 5 hrs of us

[cyclinglady]

Hang in there! We know you are doing the best that you can! Are you taking care of yourself? I say this because moms tend to put their kids first before themselves (I am guilty!), but take an hour or so to take care of you! Read, have a cup of coffee or take a walk.

Hugs to your daughter. Enjoy every second of her toddlerhood. Mine is 13 now. I miss those days. But then I also like, "Make dinner for you and Dad, because I am going out! " (I play in a community orchestra.)

Anyway, let's hope she feels better soon.

[nvsmom]

Oh gee, you guys have had a tough go.    So she was noticeably better while gluten-free?  If so, I hope the doctors take that into consideration.  Good luck with the doctor. (hug)

[StephanieL]

I think it's important that the same diagnostic stuff that applies to adults doesn't always translate to kids.  I know I have said this in other places but many many Dr. won't dx a kid without a + biopsy so saying to base it on blood alone isn't always easy.

 

How long have these leg/feet issues been going on?  My DS had that ALL THE TIME and with everything we had going on and worked up it was all attributed to growing pains.  If your DD has been gluten-free for a while which you said is the case I don't see how that would have anything to do with Celiac disease /neuropathy.  It's much more likely to be growing pains at that age.