Help Please!

[Coconut's mom]

Hi, I just stumbled on this site. Looks great, and hope I can find help. My daughter is 14. She has had stomach problems for years. We tried a ped. gastrologist approx 4 yrs ago. He said to add more probiotics to her diet (wow). She eats tons of yogurt, and I make kefir that she drinks. We did the dairy free diet, no help. Her symptoms are: Severe gas and bloating to the point of tears (which I know, can be caused from many things), sometimes diarrhea, tingling in her back, arms, and legs, headaches (not severe), fatigue, acid reflux, (with no help from meds), and recently nausea and some vomiting. Summer before this one, she went to camp and came back very sick. She lost weight because she was afraid to eat because she didn't want to hurt. I thought it was just a "teen" girl weight thing, so I let it go. Then, at the beginning of this year, when the nausea and vomiting started, I knew I needed to do more. I had read up on celiac and gluten intolerance. I took her to her pediatrician, and told her I thought she had celiacs. She ran blood work ( I don't know exactly what), but it came back negative. I then decided to put her on a gluten free diet. Immediately, she improved. The problem is she can't stay on the diet. She constantly "cheats" to fit in. Her symptoms are not near as bad as before, but she is still having them. In her "teenage" mind, she thinks I am paranoid because we don't have an "official" diagnosis. She wanted to see a gastro dr. I finally gave up the fight, and told her when she decided to be totally gluten free, I would try to help her, but she had to make an effort. I made an appt. with a gastro dr. and have been waiting to see him. Today, I find out, he doesn't take anyone under 16, so we are back to square one with that. She also had some enlightenment when she ate wheat cereal and then threw up and has felt poorly all day.

What do you recommend? Do we go to a gastro dr and have the procedure? If it is neg too, could it still be celiac? or what else do we need to do?

I am about at my wits end!

[bakermom]

I don't blame you for being at your wit's end! I think the pediatric gastroenterologist is really important, because blood tests can come back negative. THe followup to a blood test is a biopsy if the doctor thinks celiac disease is possible, and you need to be eating gluten for that biopsy to be true. It certainly sounds possible, but there are other options too. I don't know where you live, but if you're anywhere near Cleveland, OH, I'll recommend someone.

Once you get past that hurdle, the eating-to-fit-in thing is hard to conquer. I can't exactly speak from experience, because my daughter was diagnosed at 2 and is now 6, but I've heard from others. She's going to have to make a choice each and every time about whether she wants to fit in and have pain, or be pain free and a bit different. It's hard to support them in their choices. It's also hard to know how bad peer pressure can be.

Cooking and baking can help make some equivalent things, and you'd be surprised how many options there are at various restaurants to eat something appropriate.

I will hold your family in my heart....

[Dixiebell]

Welcome to the forum!

Teens can be so difficult sometimes. You could show her this list of things that can happen with untreated celiac disease or gluten intolerance.

[cassP]

good idea to show her that list!!! but u might want to add MORE to it:

constipation

HEMMOHROIDS... to the point where u may need excruciating surgery

hypothyroid

depression/anxiety/panic attacks

DH, psoraiasis, and excema

etc,etc...

i think you need to ask your doctor for a copy of her results- and study them. they may not be complete- or they may have HIGH negative numbers.

and then i would suggest you two consider retesting, and maybe biopsies.. BUT- you want to make sure she is on a good enough gluten challenge before- otherwise the testing may be a waste of time.

and keep looking on here- & maybe showing some threads to your daughter-> there's a lot of great info on here- many of our GIs are even telling us to research online, because they are new to a lot of this too- as they were not really taught too much by the Pharmaceutical run medical schools

[Coconut's mom]

Thanks for the advice. We live in NC near Asheville.