New--With Questions

[MNS]

I hope my story isn't too long and involved...and that people can offer me some advice as I try to figure things out for myself and my family! A few years ago, I started to wonder whether I had gluten sensitivity. I was tested through Enterolab in 10/06 and the value was a 9 with the normal cut off being a 10. I did not change my diet and figured this was another case of me being somewhat of a hypochondriac!! Fast-forward a few years...I decided to re-test a few weeks ago, and my value came back at 119. Because of that result, I decided to go ahead and have the casein sensitivity testing done--I should have that result in about 2 weeks.

I saw my doctor last week for an unrelated reason and asked her to run blood work (celiac panel)--I'm fairly certain it will be normal, although I do believe that a few years ago I had one antibody result in a workup for osteopenia that was at the very high end of normal--I will call my rheumatologist's office on Monday and see if they can track down that result--I don't think they did any additional testing, and at that point, gluten sensitivity was not on my "radar." My osteopenia was attributed to the fact that I had an eating disorder as a teenager.

So, assuming I have normal blood work and a result from Enterolab that indicates a definite gluten sensitivity, these are my questions:

1. For those with gluten sensitivy diagnosed only by stool antibodies, do you follow as strict a gluten-free diet as someone diagnosed by blood and/or biopsy results? I'm wondering whether you concern yourself with things like cross contamination in a toaster, etc. or whether you just try to avoid obvious sources of ingested gluten or whether it is taken as "seriously" as if you had a diagnosis confirmed by blood/biopsy.

2. How do you handle prescription medications that might contain gluten? Has anyone been able to argue for an insurance company to pay for a brand-name medication versus a generic medication based on results from Enterolab? I have not brought this up with the doctor that prescribed the 2 medications that are an issue--I suppose I could just ask that doctor not to substitute but since Enterolab's processes and results are not accepted by many doctor's, I really didn't want to discuss it with this doctor if I could avoid doing so.

3. I have 2 children--one child (boy, age 11) has a somewhat volatile personality--can be sweet and charming and then be quite disagreeable at the drop of a hat! He eats a LOT of wheat--and has been anemic at several points in his life. Does anyone have experience with children and wheat sensitivity where the main symptom would be mood swings? This might also be a blood sugar issue with him--which could also be related to the wheat/carb consumption.

Sorry to be so longwinded! I'm learning lots from this site--thanks in advance for any help!

[mushroom]

I hope my story isn't too long and involved...and that people can offer me some advice as I try to figure things out for myself and my family! A few years ago, I started to wonder whether I had gluten sensitivity. I was tested through Enterolab in 10/06 and the value was a 9 with the normal cut off being a 10. I did not change my diet and figured this was another case of me being somewhat of a hypochondriac!! Fast-forward a few years...I decided to re-test a few weeks ago, and my value came back at 119. Because of that result, I decided to go ahead and have the casein sensitivity testing done--I should have that result in about 2 weeks.

I saw my doctor last week for an unrelated reason and asked her to run blood work (celiac panel)--I'm fairly certain it will be normal, although I do believe that a few years ago I had one antibody result in a workup for osteopenia that was at the very high end of normal--I will call my rheumatologist's office on Monday and see if they can track down that result--I don't think they did any additional testing, and at that point, gluten sensitivity was not on my "radar." My osteopenia was attributed to the fact that I had an eating disorder as a teenager.

So, assuming I have normal blood work and a result from Enterolab that indicates a definite gluten sensitivity, these are my questions:

1. For those with gluten sensitivy diagnosed only by stool antibodies, do you follow as strict a gluten-free diet as someone diagnosed by blood and/or biopsy results? I'm wondering whether you concern yourself with things like cross contamination in a toaster, etc. or whether you just try to avoid obvious sources of ingested gluten or whether it is taken as "seriously" as if you had a diagnosis confirmed by blood/biopsy.

2. How do you handle prescription medications that might contain gluten? Has anyone been able to argue for an insurance company to pay for a brand-name medication versus a generic medication based on results from Enterolab? I have not brought this up with the doctor that prescribed the 2 medications that are an issue--I suppose I could just ask that doctor not to substitute but since Enterolab's processes and results are not accepted by many doctor's, I really didn't want to discuss it with this doctor if I could avoid doing so.

3. I have 2 children--one child (boy, age 11) has a somewhat volatile personality--can be sweet and charming and then be quite disagreeable at the drop of a hat! He eats a LOT of wheat--and has been anemic at several points in his life. Does anyone have experience with children and wheat sensitivity where the main symptom would be mood swings? This might also be a blood sugar issue with him--which could also be related to the wheat/carb consumption.

Sorry to be so longwinded! I'm learning lots from this site--thanks in advance for any help!

Hi, and welcome to the forum. I'm glad you are finding it helpful.

To take your questions in order:

1. Non-celiac gluten sensitivity should be taken just as seriously as celiac because it can do the same damage to you, though most doctors will not tell you this. They believe if you don't have celiac you can eat what you want (they are slowly coming around in their thinking--but many will tell you to go off and eat gluten and be happy, that you have IBS).

2. I have educated my doctor about celiac/gluten intolerance (we don't know which I have because I was never tested). I told her what tests I needed, that I needed gluten free meds., etc. I talked to the pharmacist and I have him screen all generics for gluten content (and if one slips through I soon know it). Brand name drugs you can check online. I think you need to make your doctor your partner in health care and put him/her to work for you; that is what you are paying for. What is the point of keeping secrets from your health care provider? You will need them to advocate for you if you should be hospitalized, for example.

3. Many children present with mood problems, irritability, ADHD, all the way through to autism spectrum disorders. I would definitely get your child tested as there is a high inheritability of the gene (the official figure is 1 in 22 of all first degree relatives). Also the anemia and blood sugar problems would reinforce the possibility of a gluten reaction.

Lastly, with regard to yourself, you have apparently another autoimmune disease if you are seeing a rheumatologist; you also presented with osteopenia which is very common in celiacs/gluten intolerants due to the improper absorption of Vitamin D. I would expect your testing to be positive. But even if not, gluten is definitely affecting you and you should avoid it.

[MNS]

Thanks--I guess I'm just afraid of being laughed out of the office, to be quite honest! Because of my history of eating disorders (anorexia nervosa and binge eating--NO purging) everything gets "blamed" on my eating disorder and my ED history. I appreciate your input and your response to me. I am interested to see what the current blood work shows and when I track down that old value I may come back with more questions! Thank you.

[MNS]

Got a call from the doctor today--all my blood work was apparently normal. I need to get a copy (will call tomorrow) but they were going to run a "celiac panel." I have to say I wish I had SOME blood confirmation of the Enterolab result, but I don't--and with so many people so skeptical of that method of testing, I don't know that I will find anyone who will believe me and take me seriously.