tri-gal

good news: he received the referral. Apparently the doc was concerned there wasn't sufficient justification to refer my husband. when my husband pointed out the positive result he said ok, just that most people don't want an endo (weird). I suspect the doctor either did not review the results properly or understand the implication of them. At least the discussion...

Thank you for your responses. It has taken this long to finally get the doc to call back! Indeed, he did ask his doc for a referral, right after we had feedback on the forum, and it has taken this long for his doc to call him back (several attempts later...) His doc does not want to refer for endo. Appointment tomorrow to discuss. Any suggestions? We are...

Thanks for your response. This was my sense too, yet his doc was not concerned and only provided results when my husband asked for a copy. My husband ate some gluten for around 8 weeks prior to the test, not in great quantities, but probably equivalent to a couple slices of bread a day. He had been gluten light for about 10 months prior and had experienced...

My spouse has just had a blood panel done due to relatively mild but potential symptoms. His DGP IgA came back at 10.1 with normal for lab at < 10. All others were normal (DGP IgG and TTG IGA). Doc interprets this as normal, no need to worry. Views on whether my husband should pursue endo or just take it as normal.? thanks!

Hi Ruth, I totally understand your need to obtain the most accurate information and complete picture, particularly for your children. It seems to me that the methodology and potentially level of detail provided for the genetic testing will vary (by lab as well as blood vs swab). We went the swab route as it was something we could do on our own relatively...

My daughter is on the gluten challenge because her symptoms are vague and to the outside world she seems "fine". However, she has enamel issues and intestinal issues, and other vague symptoms that cause me to want to seek a diagnosis now rather than wait. (It all sounds a little like BlessedMommy's situation, I think). For myself, I had terrible onset of...

Interesting discussion! A question for IrishHeart to round out the discussion on the utility of gene tests....and the slight chance of having celiac with non DQ2 or DQ8 (RE the "rare" person who could have celiac without DQ 2 or DQ 8....) What I had come across was some primary research published in Oxford Journals, April 2000 International Immunology...

Do you think your doc will deny your daughter the test if you go now? If so, your suggestion is a good one. Or, if you want to fork out the money, you could try the fecal tests and gene tests. I think the gene testing is worth it, particularly if you struggle with the frustration of lack of diagnosis, as I do. On the other hand, as it is not diagnostic...

Hi Ruth, I can relate to your situation, with a almost 6 yr old daughter showing signs and being non-Dx myself, unfortunately. I was afraid of the brush off from my daughter's doc, but to my delight, I succeeded in getting a requisition (she does not see my doc). n your shoes, I would go to doc and push for requisition. Here is what we did: For my daughter...

Funny to see this thread. I was not concerned about soaps until the other day when my toothbrush had a dreadfully strong hand soap taste. Yuck! It turned out that my little girl had decided to help clean the bathroom, so she had doused all the toothbrushes in liquid hand soap. I checked out the label; no mention of gluten but lots of other garbage! ...

thanks for the suggestion. maybe bulge is the wrong word. But it's good to raise other possibilities, and I know what you mean as women can get abdominal separation quite commonly too. In my case, when inflamed, my intestines contract and swell. It is definitely intestinal - I get accompanying intestinal upset and problems down under. Doc has historically...

Thank you. Good point. I have edited down my post as I realized I was getting way too far into medical issues. I've decided to see if the intestinal aspect is something others experience. thanks again - you are right.

I am non-dx, and have been gluten-free for 11 months, with resolution of symptoms. However, I have been experiencing either flare ups or some other issue with my intestines. I often get this bulge around my belly button area, mostly on the right side, just below. Could my intestines be inflamed? Would a colonoscopy be useful or an elimination diet? ...

sorry to do this in a second reply, I don't know how to "multi-quote" yet.... but ., to follow up on the question of a potential link between FPIES families and celiac disease families.... is it possible to tell me whether your son had classic FPIES (you mentioned rice, oats, soy, milk)? As in: severe vomiting and lethargy approx 2 hrs following ingestion...

okay, could be if he didn't have clear FPIES to non-gluten items. Our case is quite clear. The FPIES was and is definitely classic FPIES. To rice, chicken and potatoes so far. But our son also has enteropathy to gluten, but his intestines are much better now that he is gluten free. For this reason, I wonder if he actually has celiac disease. But the FPIES...