Colonoscopy/endoscopy After 9 Years Strict gluten-free

[Emsmith]

Hi all,

I've had a really rough summer with bloating and constipation, so I went to see a new GI doc who promptly scheduled me for an endoscopy and colonoscopy (fun!).

Afterwards, he told me that he saw no signs of Celiac and that my symptoms were all stress related (which makes no sense - this has not been a time of stress at all for me).

This also directly contradicts what my previous doc told me from the same round of procedures 6 years ago, which is that my villi were still flattened and it looked like typical celiac.

I have not had a blood test done because I'm unwilling to do a challenge.

Is it possible that I've healed enough on a strict diet in 9 years that they can't see evidence of it anymore? I 100% know I have a problem with gluten and I don't see how there could have been villi damage in 2009 if I didn't have a problem.

Thanks. I'm having a hard time with the doc's comments today.

[cyclinglady]

Did he take any biopsies? Visually, my GI said I looked good, but biopsies revealed a Marsh Stage IIIB. You should reconsider getting the blood panel just to see if you have been compliant with the diet. You might have been getting trace amounts of gluten somewhere recently. You just never know! Happened to me and I have no clue still what got me!

You should not have to do a gluten challenge. You already have a diagnosis! And yes, you can be completely healed! Meaning no damage, but once a celiac, always a celiac!

[nvsmom]

For celiac damage to reliably show up in an endoscopic biopsy, the patient needs to be consuming gluten (about 1-2 slices of bread per day) in the 2-4 weeks prior to the biopsy.  If you have been gluten-free for a good length of time, then your biopsy should be normal.  (And as Cyclinglady said, visually the intestines usually look fine even when damagaed.)

 

If you have been gluten-free, then chances are your symptoms are from something else.    I personally know that hypothyroidism can cause bloating and constipation.  If you suspect hypothyroidism / Hashimoto's, ask for the TSH (should be near a 1, like a 1.2 or 0.8), Free T3 and Free T4 (should both be in the 50-75% range of the lab's reference range), and TPO Ab.

 

Other foods could be the issue too.  Some celiacs develop other food intolerences like dairy, corn, soy, nightshades, rice, etc.  Perhaps a food and symptoms journal would help you pin down the problem.  Just keep in mind that symptoms from a food intolerance can show up within minutes to 3 days after eating the problem food.

 

Good luck.  I Hope you find an answer.  C and bloating is never fun.  

[Emsmith]

Thanks for the responses. I have had chronic constipation since before I went gluten-free 9 years ago that is usually manageable with meds but has become unmanageable since memorial day.

I don't suspect I'm getting glutened, and after a really strict 2 month long elimination diet that did nothing for my C which causes the bloating, I'm fairly sure it's not being caused by other intolerances (of which I do have a few that I strictly avoid).

I'm thinking I need to find a new, new doc as his comments about me not being a Celiac make me think he doesn't know enough about it to be of help to me. It's been a long time since I had any testing done, so I thought maybe new tests had come out that showed results even on a gluten-free diet.

Appreciate your suggestions and help.

[cyclinglady]

Get re-tested while eating gluten free. You may be getting gluten after all! Why guess? Get the facts! Besides all the leading experts (e.g. University of Chicago celiacs website) recommend follow-up testing as part of normal care for a celiac.

Open Original Shared Link

NVSMOM is right about getting your thyroid tested too!

[Emsmith]

Thanks.  Thyroid is good - stable for many years at 1.75mcg Synthroid and just retested 45 days ago.