how to choose a gastroenterologist - or not

[Cee250]

Hi -

I've had a wide spectrum of digestive, dental, skin, and auto-immune issues in my life, but conventional medicine has not offered much help. Most of my symptoms were labeled "idiopathic," which one doctor told me means "your doctor is an idiot and can't figure out what's wrong with you." I've experimented with paleo-ish whole food, high fat, and gluten free diets, and felt better, but also never really could pinpoint a source to my issues. I was fixated on curing my adult acne, but eliminating sugar, dairy, gluten... (the list goes on) did not work. A simple topical antibiotic from my new dermatologist did. 

But, despite enjoying the freedom to eat what I want and not worry about it, I've been feeling scattered and down. Since my ferritin is low and I've never been able to gain weight, my doctor agreed to do the blood test for celiac. (I've been taking multivitamins and iron supplements, so am not currently anemic.) My 23andme results show I have the HLA-DQ2 variant.

My tissue transglutaminase antibody IgA came back at 250.0 u/ml, with anything over 15 u/ml counting as positive for celiac. From what I've been able to find online and here on this forum, that seems like an unquestionably high number. 

I went gluten free as soon as I got the results (10 days ago). I definitely have digestive issues (which strangely eating gluten seemed to mask?) but am feeling happier and more energetic. That feels like a long build up to my questions  

1. Is there any value in seeing a gastro if I am not interested in getting a biopsy? My gut feeling (ha) is to wait a month or two and see if things improve on the gluten-free diet before seeking follow-up care (if needed). I understand a biopsy is the "gold standard" of diagnosis, but if going gluten free solves my problems, I don't care what the label is.

2. Most of my life, I've had gross breakouts on my scalp. Doctors have told me it was acne, but now I'm wondering if it was dermatitis herpetiformis (which I'd never heard of). They've all healed up in the past week. Is getting a skin biopsy worth pursuing? I'm not willing to go back on gluten for either test. 

3. Is there any situation in which my antibody levels would NOT indicate the need to remove gluten from my life? I've tried, but don't fully understand the tests specificity/accuracy. 

Thank you for sharing your expertise. You have made my learning curve significantly easier already!

[trents]

20 minutes ago, Cee250 said:

Hi -

I've had a wide spectrum of digestive, dental, skin, and auto-immune issues in my life, but conventional medicine has not offered much help. Most of my symptoms were labeled "idiopathic," which one doctor told me means "your doctor is an idiot and can't figure out what's wrong with you." I've experimented with paleo-ish whole food, high fat, and gluten free diets, and felt better, but also never really could pinpoint a source to my issues. I was fixated on curing my adult acne, but eliminating sugar, dairy, gluten... (the list goes on) did not work. A simple topical antibiotic from my new dermatologist did. 

But, despite enjoying the freedom to eat what I want and not worry about it, I've been feeling scattered and down. Since my ferritin is low and I've never been able to gain weight, my doctor agreed to do the blood test for celiac. (I've been taking multivitamins and iron supplements, so am not currently anemic.) My 23andme results show I have the HLA-DQ2 variant.

My tissue transglutaminase antibody IgA came back at 250.0 u/ml, with anything over 15 u/ml counting as positive for celiac. From what I've been able to find online and here on this forum, that seems like an unquestionably high number. 

I went gluten free as soon as I got the results (10 days ago). I definitely have digestive issues (which strangely eating gluten seemed to mask?) but am feeling happier and more energetic. That feels like a long build up to my questions  

1. Is there any value in seeing a gastro if I am not interested in getting a biopsy? My gut feeling (ha) is to wait a month or two and see if things improve on the gluten-free diet before seeking follow-up care (if needed). I understand a biopsy is the "gold standard" of diagnosis, but if going gluten free solves my problems, I don't care what the label is.

2. Most of my life, I've had gross breakouts on my scalp. Doctors have told me it was acne, but now I'm wondering if it was dermatitis herpetiformis (which I'd never heard of). They've all healed up in the past week. Is getting a skin biopsy worth pursuing? I'm not willing to go back on gluten for either test. 

3. Is there any situation in which my antibody levels would NOT indicate the need to remove gluten from my life? I've tried, but don't fully understand the tests specificity/accuracy. 

Thank you for sharing your expertise. You have made my learning curve significantly easier already!

With a tTG-IGA score of 250u/ml, IMO, you certainly do not need to pursue a biopsy. Especially since you are already seeing improvement after beginning the gluten-free diet. And if you are not willing to go back on gluten for further testing, that answers your own question since getting tested after going gluten free will invalidate any kind of testing anyway. And to your third question, the answer is "No". With scores as high as yours, I don't think there is another explanation besides celiac disease.

Having said all that, it is easy to eliminate "most" gluten from your life but much more of a challenge to eliminate all of it. If you are still eating out, you are getting cross contamination. You need to check all food labels and even look into pills and supplements you are using since wheat starch can be used as a filler in those things. It takes a year or two to learn the ropes and by then you get a sixth sense as to where gluten might show up in food. Are you sharing a house with others who are still using gluten?

 

[Cee250]

23 hours ago, trents said:

With a tTG-IGA score of 250u/ml, IMO, you certainly do not need to pursue a biopsy. Especially since you are already seeing improvement after beginning the gluten-free diet. And if you are not willing to go back on gluten for further testing, that answers your own question since getting tested after going gluten free will invalidate any kind of testing anyway. And to your third question, the answer is "No". With scores as high as yours, I don't think there is another explanation besides celiac disease.

Having said all that, it is easy to eliminate "most" gluten from your life but much more of a challenge to eliminate all of it. If you are still eating out, you are getting cross contamination. You need to check all food labels and even look into pills and supplements you are using since wheat starch can be used as a filler in those things. It takes a year or two to learn the ropes and by then you get a sixth sense as to where gluten might show up in food. Are you sharing a house with others who are still using gluten?

 

Thanks for the response. 

My husband is on board with eliminating all the gluten from our house, so no issues there. I have friends with the more typical celiac response (severe pain upon getting "glutenized") so am well versed on all the hidden sources of gluten. 

In hindsight, its easy to see I've been in denial. The symptoms all fit (especially now that I know how many and varied they are!) but I really wanted to believe that simply eating well would be enough. I'm glad to have a conclusive blood test. It's hard when doctors dismiss your concerns, as I'm sure everyone here has experienced. Thanks again