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Dr Ordered 2 Week Gluten Challenge After 7 Mos Gluten Free?

thewriter191

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thewriter191 Newbie
thewriter191
Posted

Hi all,

First post here - hopefully I'm doing it right.

I gave up gluten entirely in March of 2018, not because I was concerned about celiac but because I thought it might help with itchy rash. After giving up gluten the rash was gone within 3 days. I then maintained a very strict gluten free diet; 3 months in I felt way better, had actually gained a little bit of weight and noticed that my hair had grown a crazy amount - and my hair usually takes forever to grow. The doctor tested my thyroid and I wasn't pregnant, but at that point I started wondering about celiac since it seemed to fit with a lot of other symptoms I've had since childhood - low iron, pale stools, mucus in stools, clinical childhood anxiety around food and eating (not weight related, just severe anxiety about getting sick/throwing up) - but Dr. said the hair changes must be due to less stress because she'd never heard of gluten causing that kind of thing. She told me I had to do 2 weeks of eating gluten for the blood test to work. I already had the genetic testing because autoimmune disorders run in my family and know I have the genes.

By the time I was 7 months in to being gluten free I decided to do the challenge. 3 days in, the rash came back, plus angular cheilitis mainly on the side of my mouth that I eat from that lasted the whole two weeks. I was cripplingly depressed for the first time in my life, had a panic attack every single day, weird floating liquid stools and was so itchy I could hardly sit down, but I did the 2 weeks. 3 days back on being gluten free (doctor said I could), it felt like a black fog had lifted off me. The rashes and angular cheilitis were completely gone.

But then the test was negative - she did TTG IgA and it was <0.5. The doctor basically called me stupid, said false negatives are extremely rare, she'd never heard of gluten causing a 'mouth rash,' and told me 'not to deprive myself of cupcakes.' I don't want to ignore doctor's advice and if I don't have celiac, great. But now I'm reading that 2 weeks isn't long enough after 7 months gluten free...That said, I don't want to act like I know better than a doctor...is it worth doing another gluten challenge? Should I just forget the whole diagnosis business and go back to my gluten free, cupcake free, diet? What would you guys do?

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Scott Adams Grand Master
Scott Adams
Posted

Some people, especially younger people and those with little or no symptoms, may need an official diagnosis in order for them to stay on a gluten-free diet. If you already know that gluten is the cause if your issues and you don’t need an official diagnosis in order to stay gluten-free, then perhaps a formal diagnosis may not be necessary. 

GFinDC Veteran
GFinDC
Posted

Hi,

First off, get a new doctor.   One that isn't so stupid.  The gluten challenge is 2 to 4 weeks for the endoscopy test.  The blood antibodies tests require a 12 week gluten challenge.

Second though, there is an extremely itchy rash called DH (dermatitis herpetiformis) that some celiacs get.  The testing for DH is to take a small skin biopsy sample from clear skin next to a lesion.  People with DH tend to fail the blood tests so the skin biopsy is the way to go.

There is a section of the forum for DH that has more info.

You can try searching for celiac support in your area.  If you can find a support group or just another celiac they may help with doctor suggestions.  The doctors section of the forum has some ideas too.

Also, I agree with Scott.  You don't need to get a firm diagnosis and it may be a bad idea in your case.  DH can get very bad and take months to get over.  You may find that your rash doesn't disappear for months after stopping gluten next time.

cyclinglady Grand Master
cyclinglady
Posted

What can I say?  The above posters are correct.  Getting a new doctor is probably the best advice.  Your doctor sounds like she is too lazy to research an illness to better treat her patient. 

All of your symptoms could be attributed to celiac disease which is systemic!  

frieze Community Regular
frieze
Posted

when you get dx, if you choose to do so, report this doc to the state medical board.  one report is not going to make a big difference, but if they accumulate....not only was the doc rude, but is dangerous.

thewriter191 Newbie
thewriter191
Posted
  • Author
17 hours ago, GFinDC said:

Hi,

First off, get a new doctor.   One that isn't so stupid.  The gluten challenge is 2 to 4 weeks for the endoscopy test.  The blood antibodies tests require a 12 week gluten challenge.

Second though, there is an extremely itchy rash called DH (dermatitis herpetiformis) that some celiacs get.  The testing for DH is to take a small skin biopsy sample from clear skin next to a lesion.  People with DH tend to fail the blood tests so the skin biopsy is the way to go.

There is a section of the forum for DH that has more info.

You can try searching for celiac support in your area.  If you can find a support group or just another celiac they may help with doctor suggestions.  The doctors section of the forum has some ideas too.

Also, I agree with Scott.  You don't need to get a firm diagnosis and it may be a bad idea in your case.  DH can get very bad and take months to get over.  You may find that your rash doesn't disappear for months after stopping gluten next time.

Ahh thank you this is so helpful! I went to the website for the lab that did my blood work and the actual page for the test says you need at least 4 weeks for tTG IgA levels to increase and it can take as long as two years!

I don't know if I'll ever get a firm diagnosis, but I didn't know that about DH and the blood tests - I'm following up with a different doctor, who will hopefully give me a referral to a dermatologist.

21 hours ago, Scott Adams said:

Some people, especially younger people and those with little or no symptoms, may need an official diagnosis in order for them to stay on a gluten-free diet. If you already know that gluten is the cause if your issues and you don’t need an official diagnosis in order to stay gluten-free, then perhaps a formal diagnosis may not be necessary. 

Thank you! Yes, in my case the rash seems to be painful enough to stop me from eating it permanently. It would be nice to get confirmation, but not worth the suffering!

squirmingitch Veteran
squirmingitch
Posted

Even for the dh biopsy, you have to do the same gluten challenge --- 12 weeks --- as you do for the blood test for celiac. It doesn't make the time different just because they are doing a skin biopsy. Sorry.

 

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thewriter191 Newbie
thewriter191
Posted
  • Author
20 hours ago, cyclinglady said:

What can I say?  The above posters are correct.  Getting a new doctor is probably the best advice.  Your doctor sounds like she is too lazy to research an illness to better treat her patient. 

All of your symptoms could be attributed to celiac disease which is systemic!  

New doctor it is! Shame though, she's right in my condo complex. Can't beat the convenience, can definitely beat the service...

10 hours ago, frieze said:

when you get dx, if you choose to do so, report this doc to the state medical board.  one report is not going to make a big difference, but if they accumulate....not only was the doc rude, but is dangerous.

I'm in Canada but I'll look into that!

3 hours ago, squirmingitch said:

Even for the dh biopsy, you have to do the same gluten challenge --- 12 weeks --- as you do for the blood test for celiac. It doesn't make the time different just because they are doing a skin biopsy. Sorry.

 

Aw shoot. Oh well...guess I have some deciding to do.

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