Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Daughter Sensitive To Everything
0

4 posts in this topic

Hello, all,

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,

Tree

0

Share this post


Link to post
Share on other sites


Ads by Google:

Maybe bacterial overgrowth? Try probiotics?

richard

0

Share this post


Link to post
Share on other sites

If I paid for Enterolab tests (which I DID) and those results showed I was sensitive to gluten, dairy, eggs and yeast, I wouldn't expect to be symptom free until I eliminated ALL sources of those 4 things. Yeast is used in many products, as are eggs. If your daughter is STILL having symptoms after eliminating gluten and dairy, you might need to 'sleuthe' for egg and yeast ingredients in her diet and also eliminate those foods. However 2 weeks of a pain level of 3 vs. her usual 9-10 pain level DOES indicate improvement.

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. :P

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. ;)

BURDEE

0

Share this post


Link to post
Share on other sites

Hi,

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>

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,689
    • Total Posts
      921,759
  • Topics

  • Posts

    • Yes like a protein powder. I visit a local store there is so many brands and on every brand have write gluten free.that's way I confused which one is best any suggestions ! 
    • Do you mean something like a protein powder you could mix up?  A lot of them in the US seem to be gluten free.  Maybe just go to your local store and read all the labels?
    • Yeah I ended up allergic to corn, olives, sesame, whey, and peanuts and intolerant to dairy, soy, yeast, enzyme issues with breaking down meats, and egg yolks, along with extreme bloat with any kind of carbs/sugars in moderate amounts. And very adverse reactions to certain artificial sweeteners. So your not alone in all the other issues cropping up, it happens as our bodies adjust.  I eat a bunch of stir frys with veggies, egg whites, plenty of  avocados, and toasted and raw forms of almonds, coconut, cashews, walnuts, hemp seeds, pumpkin seeds, flax seeds, sancha inchi seeds, chia seeds, and sunflower seeds in all forms including making them into butters, spreads, and incorporating them into sauces.   Most meals are forms of soups, omelettes, and stir frys. I do the seeds and nuts on rotation same with my veggies and snack on fruits in small amounts along with some homemade baked goods I make for markets. I do suggest a rotation of foods, my dietician said I need to rotate my foods to prevent more issues, making sure I am off one one for at least 7-14 days at a time completely. I find changing up the spices and rotating my cuisine base works well. I also make puddings, and protein shakes along with nut/seed milks, and different bases and extract flavorings to get my random cravings Taken care of. Guess take what you can from this and and see how it can help you,    As to the tinging, I ended up with both B vitamin and magnesium deficiency issues, the magnesium one caused a fire like tingling in my arms, legs and back, along with muscle pain. Ended up on a doctors best powder form of it so I can dose it out right, and found epsom salt bathes helped.  
    • GLUTEN-FREE CERTIFICATION · FOOD SERVICES ... Celiac disease is an inherited condition, meaning that genetics do play a role. The chances ... View the full article
    • Hi, I've gained so much knowledge on this forum over the past few months, which I am so thankful for. I can see how much hell people are going through with this disease and it's so lovely to see how much support and advice people give to others on here. I'd like a little bit of reassurance and advice myself from anyone that can help. I've been gluten free for six months. Two weeks after going gluten free I realised I also had a problem with corn so cut out processed food. Over the following weeks and months I continually had problems with food; fruit, dairy, a lot of vegetables, nuts, soya....it's basically dwindled down to just eating potatoes (not white potatoes), cucumber, lettuce, small amounts of red onion, spring onion, sprouts and beetroot. There may be more things I could be okay with but to be honest I'm too scared to try.  Is this all normal? Am I an extreme case? I've been taking some digestive enzymes and probiotics for about six weeks, my acid reflux has dramatically decreased but I always have a lot of loud noises going on in my guts, I'm guessing this is the probiotics working.  I've lost nearly 3st in weight since this started - which I'm not complaining about as I was overweight due to thyroid problems. I've had loads of blood tests done recently, all organs are working 'great' according to my doctor, the only thing they've picked up on is ketones, I seem to be having a glucose problem, which might explain my exhaustion and weight loss. I also have permanent numbness and sometimes tingling in one of my legs and sometimes hands and one shoulder, I thought it could have vitamin B12 deficiency but that's okay according to blood tests. I would be greatful for any replies. Thanks for reading.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,692
    • Most Online
      3,093

    Newest Member
    EllianaEthan
    Joined