[ClevelandGuy]

So previously my GI told me that my endoscopy/biopsy results were normal. This was a little surprising, since my TTg came back strongly positive at 66. Today I requested and received a copy of the biopsy results, which I've posted here. Notice the phrase "mild villous blunting". I think this is actually her observation; the pathologist described the biopsy as "mucosa with no significant histopathologic changes".

I thought that villous blunting was diagnostic of Celiac; isn't that all you need? Why would she call these results normal? How could she have observed blunting, while the pathologist report came back normal? I wish I had had the chance to ask her these questions myself, but I didn't get the copy until after my appointment was over.

She did tell me that based on my TTg results and my improvement in GI symptoms on 6 weeks of a gluten-free-diet that I "likely have Celiac Sprue". I mentioned to her that while my GI symptoms were better, my fatigue (my main complaint) was actually worse, but she kind of brushed that off as most due to something else, something other than Celiac. Oh and she told me that I also probably have IBS. I'm a little frustrated with these seemingly incongruous results.

[Skylark]

I looked at your records. You don't have the "gold standard" to diagnose celiac, which would be lymphocytic infiltration and villous atrophy on the biopsy. Sadly some doctors are just a little too behind the times to diagnose on mild visual damage and positive TTG and "likely" is the best you're going to get. It must be frustrating that your doctor didn't even listen when you said you felt better off gluten. There are other doctors who would take the positive TTG, mild blunting, and response to gluten-free diet and diagnose celiac.

You can get the best info by having the TTG redone in six months or so. If it's falling in response to the diet, you're definitely celiac.

[ravenwoodglass]

Pathologistis are not perfect. I wish I had the link but someone posted a while back a research study where a number of definately diagnosed celiacs had their biopsies submitted to different labs. In the study about 30% of the pathologists reported that the biopsies were normal and when submitted to other labs the biopsies were reported to be definative of celiac diagnosis.
It is possible that the biopsies were taken from undamaged areas or that there was an error in the pathologists lab. Both blood and biopsy have fairly high false negative rates.
Your body is going to know the answer though. Get on the diet strictly and then after 6 months or so you could have your bloodwork done again. If gluten is an issue those numbers should have gone down.
It is a good thing that no other issues were found during the exams and IMHO that would indicate that your doctor is correct and gluten is an issue.
I hope your feeling better soon.

[ClevelandGuy]

Skylark, on 16 August 2010 - 08:36 PM, said:

I looked at your records. You don't have the "gold standard" to diagnose celiac, which would be lymphocytic infiltration and villous atrophy on the biopsy. Sadly some doctors are just a little too behind the times to diagnose on mild visual damage and positive TTG and "likely" is the best you're going to get. It must be frustrating that your doctor didn't even listen when you said you felt better off gluten. There are other doctors who would take the positive TTG, mild blunting, and response to gluten-free diet and diagnose celiac.

You can get the best info by having the TTG redone in six months or so. If it's falling in response to the diet, you're definitely celiac.

It would certainly be nice to have a Celiac label, but I don't think I really need that for anything, except perhaps for peace of mind. What I really want is for my fatigue to get better before I lose my job. :-(

When I mentioned that I had felt better temporarily during my 1st gluten-free trial, she brushed it off as a placebo effect, and chalked up my current lack of improvement in fatigue as "must be due to something other than Celiac". She seemed to be only interested in GI symptoms, really. Toward the end of the visit I asked her to test my current vitamin levels, and she replied that it would be best to go through my GP for that, as all she would test would be B. Really disappointing.

[ClevelandGuy]

ravenwoodglass, on 17 August 2010 - 02:47 AM, said:

Pathologistis are not perfect. I wish I had the link but someone posted a while back a research study where a number of definately diagnosed celiacs had their biopsies submitted to different labs. In the study about 30% of the pathologists reported that the biopsies were normal and when submitted to other labs the biopsies were reported to be definative of celiac diagnosis.
It is possible that the biopsies were taken from undamaged areas or that there was an error in the pathologists lab. Both blood and biopsy have fairly high false negative rates.
Your body is going to know the answer though. Get on the diet strictly and then after 6 months or so you could have your bloodwork done again. If gluten is an issue those numbers should have gone down.
It is a good thing that no other issues were found during the exams and IMHO that would indicate that your doctor is correct and gluten is an issue.
I hope your feeling better soon.

I'll definitely stay on the diet for a few months more. Even without a definitive diagnosis, the "mild villous blunting" is further encouragement that I might be onto something... I assume that villous blunting doesn't just happen randomly to healthy people. I just wish I could understand why my fatigue is so much worse now, rather than better.

[ravenwoodglass]

ClevelandGuy, on 17 August 2010 - 10:17 AM, said:

I'll definitely stay on the diet for a few months more. Even without a definitive diagnosis, the "mild villous blunting" is further encouragement that I might be onto something... I assume that villous blunting doesn't just happen randomly to healthy people. I just wish I could understand why my fatigue is so much worse now, rather than better.

You might want to add some sublingual B12 and a really good for sure gluten-free multivitamin to your diet. Also try to eat as much unprocessed whole food as you can as that will speed your healing. We also can go through a withdrawl period which can make us feel tired and dragged out. One other thing that I found helpful for energy was Royal Jelly. If your not allergic to bee products you could give that a try. Healing can take a bit and it can be frustrating but hopefully you will be feeling better soon. Do make sure you have also done all you need to in your home to make it safe for you like a new dedicated toaster, new cutting boards, colander etc.

[ClevelandGuy]

ravenwoodglass, on 17 August 2010 - 12:29 PM, said:

You might want to add some sublingual B12 and a really good for sure gluten-free multivitamin to your diet.

Any recommendations for a good gluten-free multivitamin and sublingual B12? I take Procaps B12 (not sublingual though), a D vitamin and a Target-brand multi currently. I want to take Procaps Mens Complete, but I wasn't able to get verification that it's gluten-free (I even called them... they weren't able to tell me!)

Thanks ravenroodglass.

[ravenwoodglass]

ClevelandGuy, on 18 August 2010 - 10:32 AM, said:

Any recommendations for a good gluten-free multivitamin and sublingual B12? I take Procaps B12 (not sublingual though), a D vitamin and a Target-brand multi currently. I want to take Procaps Mens Complete, but I wasn't able to get verification that it's gluten-free (I even called them... they weren't able to tell me!)

Thanks ravenroodglass.

It is important that the B12 is sublingual as at least until your body heals it won't be absorbed through a vitamin you swallow. The sublinguals are absorbed through the mucous membranes when they dissolve under your tongue. I take Country Life and NOW and I also have used the Wegmans brand. There are other good ones. One thing to watch out for with MultiVitamins is that some have wheat or barley grass as an ingredient so make sure you read all the ingredients. If you want some other input of brands you may want to post in the Products section and see what others are taking also.
Also if you live in an area that has a Wegmans nearby make sure you check them out. They make shopping really easy as they label all their gluten free foods. If you see the circle G you know it is safe. They also will not label stuff with distilled gluten grains with the circle G so if you are one of the folks that react to distilled gluten it makes buying stuff like pickles and BBQ sauce etc much easier.

[Roda]

You may want to have your thyroid levels, iron, ferritin and vitamin D checked. All can cause fatigue.