linda_r

I am not an expert, but I thought Prometheus was considered to offer high quality testing for celiac. Perhaps their customer service can help you. Good luck!

I think I do need to push her harder because I feel her health is at the tipping point. Even if she is not celiac she may be gluten intolerant which may cause continuing autoimmune issues. I may try for strict adherence for 6 or 8 weeks to see if the abdominal pain clears and the psoriasis improves. She can tolerate the pain, but the rash on her scalp is bugging her. She also may need the support of the teen group. She has made a new friend at high school that has RA. She is trying gluten free after my daughter suggested it because she also has GI symptoms. I am sure her parents also did some research. Teen networking can be useful.

My 14 yr. old daughter complained of "tummy hurt" from age 4. She was diagnosed with GERD at age 8. She had an endoscopy 2 years ago that showed normal villi but demonstrated "mild reactive gastropathy". A diagnosis of irritable bowel was proposed. She started having episodes of Raynaud's at age 12. Six months ago she developed scalp psoriasis. She has some issues with brain fogginess, occasional tingling in extremities, and a few more aches and pains than a normal teenager. To confuse the issue, she is well muscled despite a very lean build and appears the picture of vibrant health. She was tested for celiac by Prometheus a couple months ago and here are the results: Anti-Gliadin IgG = 3.9; normal = <10 Anti-Gliadin IgA = <1.2; normal = <5 Anti TTG IgA = <1.2; normal = <4 Anti EMA IgA = Negative; normal = Negative Total Serum IgA = 42; normal = 44-144 HLA allelic variant associated with celiac disease detected: DQ8 heterozygous; 2X risk: risk moderate Although she was eating gluten at the time of this test, her intake had already been somewhat reduced on her own to avoid foods that upset her stomach. Her pediatrician approved going gluten free. GI docs were unhelpful. She is having a hard time staying consistently gluten free and cheats with pizza & hamburgers a couple times a week. She admits to feeling better without gluten. How hard should I press her to be strict about the diet without an official diagnosis? I feel she is at the brink of an autoimmune cliff.

Thank you all for your responses. I now feel more comfortable having the testing done.

I am new here also, but advanced members have written that a gluten free trial should be three months. Good luck to you!

Jestgar, Your statement implies that since the gene is only associated with celiac, and that the general populace has a 30% presence of these genes, then perhaps there is little risk of discrimination from insurance companies. Prometheus only runs the genetic test if all serologies are negative, so the presence of genetics alone may not carry a lot of weight in the insurance world. The absence of the gene would make the presence of celiac unlikely, if I am understanding this issue correctly.

I am wondering if maybe I should have the genetic portion done through Enterolab without using the insurance company. I could still have the serology tests done by Prometheus while still protecting her genetic privacy. I am going to ponder this for a while. Anyone else have any thoughts? Does Enterolab have a reputaion for reliable results?

I finally got authorization from insurance for celiac serology and genetic testing for my daughter. Is there risk that insurance companies in the future may use her genetic profile to deny coverage or charge more for coverage? Has anyone had any experience or thoughts on this subject? I had previously posted that she had a negative biopsy, but although her villi were normal, she did have slight irritation of the stomach lining. Her H. pylori has been repeatedly negative. She has had reflux and abdominal pain since age 4 and occasional Reynaud's episodes the last 2 years. Thank you for your insight. You have been very helpful! Note: I had posted this a few minutes ago and it did not appear. I apologize if it shows up twice.

Thank you for your responses. lizard00, I think you are giving excellent advice. I don't see the tTg IgG on her lab order sheet, although the AGA IgG is there. I may have to inquire about that test. Even if everything comes back negative, we will probably have her trial a gluten free diet for 3 months and see what happens. I think it would be hard to make the dietary changes permanent without some lab validation, although it may depend on if there is dramatic improvement with her symptoms from a dietary change. Ten years of stomach pain and other vague, non-childlike aches and pains are enough reason to try something as non-invasive and benign as a dietary change. To NMN, her IgA level was around 60, which I recall was about half the normal range. I would guess 118 is normal, although there may be some variability from lab to lab on normal ranges.

I have read that IgA deficiency is a risk factor for both celiac and autoimmune disorders. My daughter is also IgA deficient, about half normal. I hope others have more info for you. Good luck!

My teenage daughter has a 10 year history of acid reflux, GI pain, and a 2yr. history of occasional Raynaud-like symptoms. She had celiac serologies 3 yrs. ago by Quest. They were negative for the IgA markers, but she was IgA deficient (about 50% of normal). She will soon be retested by Prometheus Lab, which will be doing both the IgA makers and also Antigliadin IgG, with genetic testing if the serologies are negative. If the Antigliadin IgG only is positive, is this enough for a diagnosis of celiac, and would this justify a gluten free diet. Also, does presence of celiac genetics justify a life-long diet change if the serology tests are negative. Note: her intestinal biopsy was negative 18 months ago. Thank you for any insight you can provide.

Her doctor ordered genetic and serologic testing for celiac. If they are negative, we will still give a gluten free diet a try for a couple months. It also would be interesting to contact an allergist about elimination diets.

Thank you for your feedback. I will have to get more info about elimination diet. We are off to the dr. now! Sounds like the gene test is not an absolute answer.

I have pretty much decided to try the gluten free diet regardless whether we do more blood tests or not. I am not going to put her through another endoscopy. She has a followup appointment today at GI clinic at the children's hospital. I have held off the diet change until after the appointment in case it is decided to pursue more testing. I am not sure if it will be more difficult to adhere strictly to the diet without a diagnosis, but we are going to try. She is motivated to find a way to feel better. I was not aware the genetic testing was so complex. Would a negative test of the markers done in the US rule out celiac?

She is willing to do what it takes to feel better. The lack of definitive answers about why she feels lousy is scary for her. Also, she has already eliminated some sources of gluten because those foods make her ill, such as spaghetti. She eats a lot of fruit and vegetables, but they don't give her enough calories.