What Type Of Doc To See?

[birdie22]

I've had intermittent bloating and almost daily heartburn for almost a year now. Have been discussing the issue with my GP and my OB/GYN actively since the summer. I've had complete blood tests, ttg iga, CA-125, liver panel, etc to rule out ovarian cancer, gall bladder, pancreas, liver, etc. I've also had an upper GI, abdominal CT, and pelvic ultrasound. All tests have been negative. My GP then suggested an elimination diet. However this clearly isn't her area of expertise. She told me to do 3-5 days of nothing but plain chicken, white rice, and banana and then to start adding in other things. Um, I'm no expert, but I'm pretty sure you need to go longer than 3-5 days to clear your system and then there should be a specific process for adding other foods back in. She didn't even suggest a food log. So, I want to take this up with someone with more experience. Who would I see? A dietician? Naturopaths are not recognized by NY so therefore not covered by insurance.

[Roda]

You mentioned you had the IgA tTG test. Did you have the others? A complete celiac panel includes: total IgA, IgA/IgG tTG(tissue transglutaminase antibody), IgA/IgG DGP(deamidated gliadin peptide) and EMA. If you didn't have all of those tests, I would request them before you do an elimination diet. Also did you have a scope during that testing? Might be something to look into since you are having so many issues. With the EGD(upper scope) they look at the esophagus, stomach and first part of the small bowel. They can evaulate for inflammation, ulcers, varices, celiac, h-pylori etc. To biopsy for celiac a minimum of 8 samples needs to be taken from the first part of the small intestine(duodenum) from different areas. If you are ready to just start an elimination diet now without any more testing then maybe an allergist might help? I'm not really sure as I'm not very knowledgeable in that area. It was suggested by my oldest son's allergist after he found out I had celiac and then after his brother was diagnosed. I decided to exhaust all testing on him first. He has been gluten free now since the end of August. I will reintroduce him to it in mid-end December to see how he reacts. He is not celiac, but his allergist is leaning on gluten intolerence.

[birdie22]

You mentioned you had the IgA tTG test. Did you have the others? A complete celiac panel includes: total IgA, IgA/IgG tTG(tissue transglutaminase antibody), IgA/IgG DGP(deamidated gliadin peptide) and EMA. If you didn't have all of those tests, I would request them before you do an elimination diet. Also did you have a scope during that testing? Might be something to look into since you are having so many issues. With the EGD(upper scope) they look at the esophagus, stomach and first part of the small bowel. They can evaulate for inflammation, ulcers, varices, celiac, h-pylori etc. To biopsy for celiac a minimum of 8 samples needs to be taken from the first part of the small intestine(duodenum) from different areas. If you are ready to just start an elimination diet now without any more testing then maybe an allergist might help? I'm not really sure as I'm not very knowledgeable in that area. It was suggested by my oldest son's allergist after he found out I had celiac and then after his brother was diagnosed. I decided to exhaust all testing on him first. He has been gluten free now since the end of August. I will reintroduce him to it in mid-end December to see how he reacts. He is not celiac, but his allergist is leaning on gluten intolerence.

Just the total iga and ttg iga were run. No scope since my ttg was neg.

Forgot to mention that my symptoms also include recurrent canker sores (usually only one at a time and usually monthly), leg aches/cramps in the upper thigh/hip region, and frequent headaches. My doc thought hormone imbalance and prescribed BCP.

I did already start elim of gluten for a few weeks now (though I'm sure there's been some missed gluten and CC) but am willing to add it back in to do further testing. I have a follow up with her in 2wks. I've had about 6 appts with her about this issue and she hasn't once suggested a referral to a GI, allergist, etc.

[Roda]

Just the total iga and ttg iga were run. No scope since my ttg was neg.

Forgot to mention that my symptoms also include recurrent canker sores (usually only one at a time and usually monthly), leg aches/cramps in the upper thigh/hip region, and frequent headaches. My doc thought hormone imbalance and prescribed BCP.

I did already start elim of gluten for a few weeks now (though I'm sure there's been some missed gluten and CC) but am willing to add it back in to do further testing. I have a follow up with her in 2wks. I've had about 6 appts with her about this issue and she hasn't once suggested a referral to a GI, allergist, etc.

Are you noticing any changes since you have eliminated gluten? When I first got tested for celiac I too only had the total IgA and the IgA tTG ran. I didn't know, and neither did my doctor(my endocrinologist) about "all" the tests. Fortunately or unfortunately, depending on which way you look at it my tTG was positive. I had a scope a month later and was positive too. I did at least know to keep eating gluten until I had the scope done, despite my endocrinologist telling me to avoid it. If you really want more testing, you could request the other blood tests now since a "few weeks" probably wouldn't sway them to bad, but if your going on a month or so then it could result in false negative. You could always reintroduce it until your next appt. and ask for testing then. Or, if a diagnosis isn't important, you could continue with the elimination. Some doctors will diagnose based symptoms, positive response to the gluten free diet, and syptoms returning if gluten is reintroduced. There are plenty of people that test negative on blood work but have positive biopsy. No matter what you decide, a refferal to a GI doc and a scope are warrented even if the celiac testing is negative. Like I mentioned before the scope can check for other things too.