I Think We Are Missing Something

[bassgirls]

Well my 3yo (4 in Feb) Has been having issues for some time now. For the longest time she was refusing to eat saying her tummy hurt. She complains her legs hurt her and she gets canker sore a lot not sleeping through the night. She also started refluxing. She only gained a pound all year and at almost 4 weighs 30 lbs. So I took her to her ped whom ofcourse makes out like Im the reason for her not eating and put her on Zantac -did nothing. So we got a referral to a GI who does a endo and says "everything looks good and I took a biopsy of three places." call a few days later and she has esophagitis so is now on prevacid. During this time we do allergy testing and find shes allergic to wheat and corn but very mild. I take her off both and no more tummy compliants/reflux and better at night. Any accidental ingestion of wheat gives reflux and tummy pains. I still think we are missing something though.... She eats better but still has canker sores, still no weight gain, still wakes up atleast once a night.

I know she said biopsy showed no celiac but is it possible its the culprit? Should I ask for blood test? Could She be allergic to wheat AND have celiac? (I know they are diff) Can you be allergic to gluten? How do you find out if its gluten intolerance? Before taking wheat out she just fit the bill for celiac. I personally do not care for her GI she seems to think her problem is that she doesnt poop enough. Any suggestions would be helpful thanks!

Beth

[Guhlia]

Unfortunately, since she's wheat free, she would likely test negative for Celiac via standard testing. There's a chance it would come up positive since she's still consuming barley, rye, and oats, but it seems unlikely. If you suspect Celiac, get a Celiac panel run on her and if it comes up negative you may want to try eliminating all gluten from her diet to see if it makes a difference. The other option is testing through Enterolab. Even if she's been off wheat for months it will more likely than not come back positive if she does have a problem with gluten. Good luck.

[bassgirls]

Yeah I kinda thought that... Shes been wheat free for 2 months now with 3 exposures thanks to wonderful family members whom thing enriched bleached flour cannot be wheat

[Electra]

It's very common for children to get a false negative even if they are consuming Glutan. If she was pretty much Glutan Free for a couple of months then it probably would not show up. My daughter is 2 and tested negative for the blood test, but I tested positive and my daughter has Dermetitis Herpetiformis, so I'm more then positive that she also has Celiac!! I would say just eliminate Glutan and see if it works. If she gets better then there is your answer. My daughter has the same symptoms but she doesn't say her tummy hurts, she's nibble here and there, but only eats about a half a banana and a quarter of a cup of potatoes a day and sometimes she'll eat some popcorn, but that's about it. She lives on Milk and I let her drink it because she won't eat anything else :-(!! I can't wait until she has her appt with the allergist and the GI dr. in the next few weeks!! Good Luck I hope you get some answers soon!!

[Guhlia]

Angie, they should be able to biopsy the tissue next to the DH and get a positive Celiac diagnosis based on that.

[happygirl]

Yes, you can be allergic to wheat and have Celiac.

Electra-by definition, if she has DH, she HAS Celiac.

[rez]

My son's bloodwork was positive for Celiac and we see the Peds GI next week. He also has acid reflux really bad and gets multiple canker sores. I photograph and document all his sores and keep a food journal. He's had 17 sores in the past 3 months. Eight at one time. We have narrowed down the sores to dairy, not the lactose but the protein casein in the milk. I know Dr. Fine/Enterolab isn't published so I'm not saying he's right, but his test showed my son reacted to dairy and gluten. It's proven to be right in our case. Celiacs are more likely to have other food sensitivities and it takes a while for the gut to heal. Some are better in days, others months, others years. It's such an unknown. His tTG came back elevated after being gluten free for four months and the biopsy will be scheduled soon. It's very frustrating. We've now eliminated soy, dairy, and gluten. I know it sounds impossible, but it's not. It's easier to figure out the offending foods with an elimination diet. She could definitely have Celiac and acid reflux as well. Chocolate also triggers my son. Even dairy, gluten, and soy free chocolate bugs his acid reflux. My family practice doctor is very supportive and says even if the biopsy is negative or he can't get through the gluten challenge, he's still got it. My daughter also just was recently diagnosed hypothyroid. The doctor wants to try her on a gluten-free diet for 6 weeks and then retest her levels before medicating at all. Stick to your guns and go with your gut with your child. A mother's intuition is worth a lot. Good luck.

[Juliebove]

You can also be allergic to both wheat and gluten. My daughter is.

[Guest cassidy]

Why not try eliminating gluten? If she is already wheat free then taking gluten out probably wouldn't be that difficult. If it makes her feel better then that is really all that matters. It is frustrating that doctors aren't that helpful and testing isn't that accurate.

[kimber]

Hi

My ds is 3yrs old and also has reflux and some food intolerances/allergies

How long has your dd been on prevacid?

It can take as long as 2-3 weeks to see major improvements....have u seen any improvements at all since starting prevacid

i think the most important thing to do, is avoid ALL trigger foods

My ds was on a high dose of prevacid but it didn"t even matter if he ate something that didn't agree with him

good luck, Kim

[bassgirls]

Shes been on prevacid since October. First 15mg then upped to 15 in am and 15 in pm by November. With the 30 I did see improvement. No tummy complaints at all up until a few days ago. Now her tummy pains are back. And shes again saying her legs and feet hurt her. She just wants to lay down or play quitely. I dont know whats going on. but my gut says find a new GI thats gonna be concerned with more than her bowels

[AmyTopolski]

Hi,

My dauhgter is three now and was diagnosted at 2 1/2. She had stomeach pain, would say her knee hurt, was barely eating and waking up numerous times at night. She had diareha for 4 weeks then started throwing up. Her ped said it was viral! I said if that were true we'd all be sick. So I swich to a different ped. The first thing he did was test for celiac. He did a stool test. It took three weeks and sure enough came back possitive but mild. After 3 days on the diet she was a different little girl. We did find however that to avoid accidental glutening that we had to have our kitchen completely gluten free. Toddler are very resourceful! After we all went gluten free our younger daughter who was born with severe acid reflux and allergies is now symptom free. No medication when she was on the two times a day! I have never seen a GI. I've heard about too many false negatives. My doctor and many other's and other people we know say the best way to find out is a completely gluten free diet. Also, when our daughter's do get gluten it takes them a good three weeks to get over it. So it takes time and patience. I hope our story helps you. If you have any questions please feel free to ask me.

Amy

P.S.

Our daughter is just now sleeping through the night. It started 5 days ago and took 4 months.