Help! Continuing Symptoms

[janu]

I was tested in Feb. IGA was 11(equivocal) and IGG was 5(neg.) but I had been gluten-free for 2 months. Dr. adjusted my thyroid- I was hypothyroid, increased iron, vit.Dand Calcium. I felt great for about 2months. Now I've started in with symptoms again but have remained gluten-free. I also have 2 daughters with celiac disease. I haven't found a dr. in Cent.Oregon who is knowledgeable about celiac disease. I haven't seen a GI but wonder if I should seek out more testing like the genetic tests or a biopsy. My daughter's GI in Portland suggests strongly she have a biopsy. Her antigliadin panel was positive in all areas. I really feel lost and without good advice. I hope someone has some helpful suggestions. Thanks,

Jan

[jknnej]

Why were you gluten-free in the first place? Were your first tests positive?

What kind of symptoms do you have?

[KaitiUSA]

I ditto the previous post...that would be helpful to know

If you are in fact celiac then is there a way you could be getting gluten in through makeup or other products you use or are they gluten free to?

If you are 100% gluten free including with products you may want to try a food journal to see if symptoms flare up after any certain food. You may have an intolerance to something else as well. Have you had any sensitivity to milk? That can happen to alot of celiacs, especially at first.

Or there could be something else going on.

Since you have 2 daughters with celiac it is definitely in your family and your whole family should be tested because there are probably others who have it.

If your daughter had positive blood tests and has been gluten free a biopsy would do no good while being on the diet because the damage woud heal and results would be inaccurate. With all positive tests that pretty much concludes she has celiac. Which tests did she have done? There are certain tests which are very specific for celiac. In fact, the tTG test may become a replacement for biopsies for diagnosis in kids...there is an article about that on this site too.

You could get a gene test done. 98% of celiacs have the HLA-DQ2 or HLA-DQ8 gene. So that could maybe share some insight.

Also, Enterolabs may be an option to look into. They use stool samples to detect malabsorption, gluten sensitivity, gene testing, milk sensitivity, tTG, and so forth. It is not widely accepted by stubborn doctors who have to have it 1 way or its wrong. It is a very good test and I know alot of doctors who do support it.

Good luck

[janu]

To answer your question, I was gluten-free because I had given up on medical doctors after years of complaints of abdominal pain, diaharea, migrane type headaches, fatigue, high blood pressure and low back pain. Most of these symptoms didn't have a reasonable explanation for their cause and I was just being given meds to cover up the symptoms. I went to a naturapathic chiropractor and did a d-tox 6 week program and couldn't believe how well I felt after that so when it was over I just continued to stay away from gluten. I gradually added other foods back in but am still avoiding dairy products. I've eliminated a shampoo and hair conditioner that had wheat protein in it and have checked my make up and hair sprays. I'm leaning toward having the Enterolabs panel of tests done sine they claim that being gluten-free for a period of time will still allow a positive test result. I think my daughter should go this direction too instead of the biopsy. Her doctor claims that she needs to see the extent of intestinal damage. Does that make sense? You guys are great in taking the time to answer my questions. I'd like to find a doctor in Central Oregon who is "smart" about celiac disease but so far no luck. Thanks,

Jan

[KaitiUSA]

Try looking at the home page of celiac.com and if you scroll down there is a link to recommended doctors by other celiacs. Click on that and then find your state. Maybe there is one around.

I can see that the doctor wants to see what condition her intestine is in..that would be the only reason for the biopsy. I personally don't know if it would be worth it..for me it wouldn't...I would either be lucky and not have damage yet..or have damage...the same course of action would be taken for either result. With her having positive blood results I would find that convincing enough.However, this is a personal decision that should be made.