Daughter Sensitive To Everything
Posted 05 October 2004 - 07:35 PM
This may be long, and I'm sorry if I ramble, but...
My 7yo daughter has been ill for just over a year, with constant abdominal and head pain, with reflux and Cyclic Vomiting Syndrome thrown in, to boot. She's had hospitalizations for dehydration, testing for everything, the usual drill. She had negative bloodwork and biopsy (which showed very mild inflammation) a year ago.
Recently a pain clinic dr. suggested trying going gluten-free. It helped for a couple of weeks (we went seriously dairy=free, instead of kinda dairy-free at the time), then she went back to feeling awful all the time. She developed strep throat then, and I figured she'd start bouncing back once she was feeling better.
Of course, she broke her collarbone once the strep was leaving, and then has shown symptoms of a first outbreak of cold sores (oral herpes). ARGH!
I sent off for Enterolab testing, which showed her to be sensitive to gluten, dairy, eggs and yeast, along with being positive to the tissue transglutinase (ok, I know I got that word wrong!), and having too much fat in her stool, indicating intestinal damage.
Oh, and she's a really committed vegetarian. She won't eat anything with gelatin, even.
To top it all off, my dad is an oncologist, and he can't accept Enterolab tests as valid until they're mainstream. Our pediatric GI hasn't heard of Enterolab, and she's on the national board. Geting the results, then finding this out, was like the "fake ending" of a horror movie; wait! There's more! Fortunately, my dad completely respects my authority as a parent, even if he was told by some other doc that celiacs could eat bread three times/week! (don't bother replying to THAT one; we all know how utterly bogus that is!)
Sooooo....we've been off gluten since early August, with the initial good response, followed by a return to constant pain. We've been off the rest since September 12th, when we got the results. Have had absolutely no response to diet. It's verrry frustrating, especially since:
--We're making our household gluten-free, to avoid cross-contamination and show solidarity, and
--My dh is reluctant to have the rest of us undergo Enterolab testing, because of the expense and lack of symptoms
--Naturally, my biggest frustration is the lack of response to the diet, especially after initiial good things! We had two weeks of pain being reported at a 3 on a scale of 1 to 10, instead of the 9-10 we usually see.
This is HARD! I am considering asking the pain doc for info about pancreatic enzymes, and also looking at parasitic testing through Great Smokies Diagnostic Lab.
What else would you suggest? Without results, it's harder for my family to accept validity of Enterolab testing. We've gone through so much with this kid; it's hard to have her in constant pain, and be able to do nothing. And, as one might expect, being in pain for so long has NOT brought out the best in her personality! Or mine.
I would really appreciate advice, info on how long to wait for improvements, advice on supplements, other things that could help, and feedback from others going through this, too. I am thinking of other dietary sensitivities, but she's "passed" all ELISA tests (including for gluten, interestingly), and Enterolab doesn't offer additional food testing.
Thanks for listening and responding,
Posted 06 October 2004 - 11:08 AM
I also had initial symptom relief when I eliminated gluten. However I then continued to experience painful symptoms. So I did the Enterolab package for gluten and milk sensitivity. When those tests showed I had gluten and casein antibodies, I tried substituting soy and got the same 'dairy' symptoms. So I eliminated soy and felt much better. I still experience symptoms with citrus or anything very acidic. So rather than paying for more tests, I just eliminate whatever seems to cause problems. I STILL have plenty of food choices.
Since your daughter's a committed vegetarian, eliminating the dairy and eggs may not be such a problem for her (since those are animal products). However, you may have to carefully combine grains and legumes or nuts so that she gets complete protein sources without any meat products. Have you read the classic 'Diet for a Small Planet' about combining incomplete proteins? An especially good cookbook for multiple sensitivities is "Recipes for Special Diets" by Connie Saros. Besides including recipes with adjustments for most dietary restrictions, that book also lists sources of most major allergens or food intolerances.
Good luck with helping your daughter find acceptable foods within those restrictions. Despite your family members' opinions, I would recommend you follow Enterolab's advice. It sounds like only E-lab gave you a concrete diagnosis and recommendations to relieve your daughter's symptoms. That seems better than guesses by doctors or others who discount E-lab.
Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.
Posted 12 October 2004 - 06:19 AM
My daughter, 7 years old, had constant headaches (at least 2 a day) dizziness, stuffiness and frequent colds (8 last year) and ear infections. I talked to a nutritionist who was awesome! She is the only one who has been able to help. Her name is Kelly Dorfman and she is located in the Washington DC area. (do a google search to get her phone number) She does phone consultations. She advised me to get my daughter tested for food allergies through York Nutritional labs. (This is an easy do it yourself test). The test concluded that my daughter was allergic to about 12 different common foods! Althought it was difficult, I eliminated these foods and improvement has been great. No more headaches etc! Also she had been on lots of antibiotics for ear infections (about 60 days worth) and the nutritionist told me to give her probiotics (Primal Defense ) and enzyme supplements to aid in digestion (Houstonii Zyme Prime and Peptizide...find their site on the web). She was also tested through Enterolab and it showed she had some malabsorption (340 was the score) and some trouble w/ gluten. However, she does not carry either of the 2 main genes for celiac disease. Anyways, I am sympathetic towards you and your daughter's health. The nutritionist has been a great help after seeing about 7 different kinds of doctors who were NO help. The supplements I mentioned have also helped my daughter gain some much needed weight because they help her to absorb her food better. If you have any questions I'll be happy to answer. Hope this helps>
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