Hi e1,
This is my first post here, but I have been reading for days. What an awsome group. Long (super long) story short after 2 years of pleading with pediatricians my 2 year old (now 8) was diagnosed with Cystic Fibrosis. She has been sick from day one with weight and lung issues. After the Cf dx we thought we were on the right path but we have struggled her whole life to keep her well. She still doesnt gain weight... she has been 44 lbs for 2 years and now her doc is looking at G-tube. She was diagnosed 2 years ago with epilepsy (told it was unrelated to CF) last year all of her molars came in with no enamel and spotted front teeth (also told not related to CF), she has had random knee pain all her life, random dry scaly patches on her elbows that mysteriously clear up on their own, always smelly gas. She never complains about her tummy but sometimes it is very hard. She also would not swallow the actual food pieces until she was 2 1/2 she would just suck the juice from her food and leave the rest between her gums and lips (like snuff or dip) until I cleaned it out. I suspect she has celiac disease but the blood test was negative today (done last week). I am going to go ahead with the diet but my issue is that I need her pulmonologist to really "get it". She said that the gastro she consulted about the results said "this child definitely does not have celiac disease and a biopsy is unnecessary". I have a hard time believing that she has the seizure,s failure to thrive, Dental deformities , sometimes pain in joints, and so much more and none of this stuff is related. I cant sleep, and Im a wreck. I would give anything just to have her just "BE WELL". We were on Iv meds for a total of 5 months last year (5 out of 10) I am going to go ahead with the diet and pray like heck! We need a friggin break for petes sake! Any suggestions or advice is greatly apprecited.
Thanks Chrissi

I don't know if it's possible, but could you get a new GI doctor? That's the only thing I can think of except just trying the diet. If you post in the doctor's section, someone may be able to help you find a good one in your area.

Good Luck! Also, remember blood tests are false negatives ALOT!!! Biopsy is the "gold standard" for diagnosis.

Kassandra

Did they run the FULL Celiac panel? Might be something to look into.

AGA IgA and IgG
EMA
tTG
Total Iga

Best of luck!

I would test thru Enterolab.com including the gene test. I would also take her grain free & dairy free. Just feed whole foods, meat, eggs, seafood, veggies, nuts, fruits. Do not add soy no one needs dairy or soy. Then she might not develop a problem with soy (unless she has it already) & you will not have to avoid in things like mayo. This will get her off all processed foods & MSG, artificial colorings, chemicals etc. No toothpaste, kids are supposed to brush with water & floss...

Books I recommend: Dangerous Grains, Super Foods (not a gluten free book but ignore the dairy & grain parts) & eat Right for Your blood Type - there again not a gluten free book but cross out all the dairy & grain foods...

You are doing the right thing - fighting for your childs health...

Be careful about feeding potatoes they are a high lectin food & a lot of us cannot tolerate them...

also, check the "Eat Right for your Blood Type" book to see what beans she tolerates best. Then do not cook them in a crock pot. beans need to be soaked the night before & they need to cooked at high heat (regular stove top method) until they are well done.

You might add white rice to the diet, most people can tolerate that - but you might wait a few days or a week... bu sure to only use white rice as it is digested easier & do not get a mix, use plain white rice & rinse it three times or so before adding the cooking water.