Frustrated And Confused

[New Gluten Free Mom]

My 2 daughters and myself tested positive for gluten, dairy and Soy (8 yr old daughter only) through Enterolab and US Biotek testing. Symptoms that brought us to these tests were constant low level stomachaches and rashes at the joints of my 8 yr. old. Pediatrician said she was constipated and to take a daily laxative and use antifungal cream on the rashes. This didn't always work in my opinion and she was complaining quite a bit, but it never stopped her from doing any of her activities or playing. I went to somebody who practices Chinese Medicine and he suggested Enterolab and US Biotek. We have been gluten free for 3 months and today I went to a GI. I wanted to know if we have Celiac or not. Enterolab said we don't have the main gene but we do have two of the secondary gene that could indicate celiac disease. The GI Dr. said Enterolab was a waste of money and to go back on gluten for 6-8 weeks and then she would do a blood test and then possibly a biopsy. My daughter's rashes have cleared up, but she still has stomach aches, but not as frequently. Chinese doc said it will take a while for her intestines to recover. I have appointments for my kids with an Allergist and a GI next month. I don't know who to believe. According to the Enterolab and US Biotek it is imperative that we stop eating gluten and dairy. Please advise.

[AndreaB]

If you tested intolerant to gluten then you will do fine with the diet. You don't need further testing unless you will need something for school, from what I've read. I homeschool so that's not a problem for us.

We did Enterolab and US Biotek as well. I found the gene test very useful through Enterolab. We all have celiac genes so won't be going back to it ourselves.

You can cause a lot more damage trying to get a positive diagnosis through bloodwork/biopsy. That is a personal decision though.

We also did a form of muscle testing called ART. I have found that very useful and with further treatments my children can now eat most foods again. We will always be gluten free though as I said. My daughter had gotten to the point where she couldn't eat much as everything was starting to bother her. She's 8.

It does take time to heal if she had any kind of intestinal damage. Talk to the Chinese med doctor about probiotics. My children have all been on them, although we aren't right now. We were muscle tested for those as well.

You may be able to add back in dairy at some point....wait a year anyway. Soy I'd not recommend consuming aside from the lecithin and maybe oil that can't be avoided (like in mayo). You'd still want to be off of all soy for a year anyway. We jsut added those back in successfully again, I think. I plan on having those muscle tested this fall as well.

[CeliBelli]

...I went to somebody who practices Chinese Medicine and he suggested Enterolab and US Biotek. We have been gluten free for 3 months and today I went to a GI. I wanted to know if we have Celiac or not. Enterolab said we don't have the main gene but we do have two of the secondary gene that could indicate celiac disease. The GI Dr. said Enterolab was a waste of money and to go back on gluten for 6-8 weeks and then she would do a blood test and then possibly a biopsy....I don't know who to believe. According to the Enterolab and US Biotek it is imperative that we stop eating gluten and dairy. Please advise.

I was just diagnosed in December via two Prometheus tests (antibody and genetics) and endoscopic biopsy, which are also crucial. From what I've read, that is the gold standard for diagnosis, and it does require being on gluten so the tests can pick up the full level of your body's reaction, since healing begins and the antibody levels drop very rapidly once you go gluten-free. You will also want to ask for full blood chemistry and checks for vitamin deficiencies, too, so you know what specific nutrients may need to be supplemented.

Why is this so important? Because the gluten-free diet is not easy, as you've already found, and it is for life. You want to be as sure as you can be that this is, indeed, Celiac Disease you and your family have, before undertaking such dramatic, permanent dietary changes. Also, you want to make sure you establish baselines so you can compare apples to apples later to track recovery. The endoscopy is crucial to determine the extent of intestinal damage, and to check for bowel cancer, which is higher in Celiacs.

Having all this very well documented is important, because Celiac is a very complicated disease, with many varied and potentially serious complications. If you have definitive diagnoses based on the best diagnostic methods, it could make a difference in the future as you navigate healing all the damage throughout the body. It is hard enough to get doctors to believe and understand, having medically respected tests in hand may help. No guarantee, but it may help.

I don't envy your decision. But there are sound medical reasons why your GI is asking you to do this.

[nora-n]

I am in Europe, and here ofte celiacs go back on gluten for a definite diagnosis. Often there are benefits for diagnosed celiacs.

In the U.S. you do not actually need an official diagnosis, you can just go gluten-free anyway. But the children may question later on if they really need to stay off gluten, I can see that someone may want a diagnosis for that reason.

Otherwise, I think you will do damage going back on gluten for the biopsy and blood tests.

You would have to go several weeks on gluten, and still you might not get a positive biopsy, especially if you are not DQ2 or DQ8. We have seen several of those without the main genes fail to get the official diagnosis, yet they get severe side effects from gluten, even more than the celiac genes. Like, DQ1 (which s DQ5 and 6 and other 05* and 06* in teh beta allele) often have more neurological issues as the gluten triggers antigliadin antibodies in the brain. They often even do not test for the antigliadin antibodies anymore. Celiac or gluten sensitivity is not just confined to the villi, it is gluten sensitivity and Dermatitis Herpatiformis as well, but nowadays only celiac and DH are recognized. The antigliadin antibodies attacking other systems in teh body is not universally recognized yet and DQ1 often have this form but fail to get a positive biopsy.

nora